All Things Possible: Our Journey

New Milestone

2012-01-21T21:55:00.004-05:00

I have some news to report - not sure how to interpret it - cautiously optimistic about if we will see it again, however, tonight for the first time ever, Zach said two sentences spontaneously. Simple - but as we were approaching bedtime, and we were all huddled in his sister's room, he said "It's bedtime. Time to go 'night 'night." he continued to say "night night" as he crawled under the sheets in his sister's bed. Steve was there to witness it.

Zach's articulation is pretty warbled at times. And other times it is quite clear. These last two weeks we have heard him be able to say multi-syllabic words when prompted - something we had not seen in a very long time. But all in all, we have approached a point where we feel that nearly 4 years of trying, 7 speech language therapists/pathologists efforts, 6 special ed teachers, 4200 hours of 1:1 - things are not looking probable.

This is such a hard hard thing. I know many of you are thinking we should be overjoyed by this, but it is so easy to get burned by putting ourselves in a place of expectations. Instead, experience has taught us to just file this in the appropriate place and keep on going; business as usual. That means school, researching, private instruction and therapy, doctors visits, schedules, rituals, purposeful play, data, conferences, classes, support groups, agencies - push push push. The marathon continues.

It does help give a little pep in the step for today. But tomorrow is another day. And we don't know if we shall pass this way again. But if not, it won't be for the lack of trying.

I sit here in tears. And I am ashamed because they are not of joy. They are of my shame. I love him oh so much. I work as an advocate for families - some of whom have children who are non-verbal. As an advocate, I try to emphasize that a child is important, deserves respect and love, regardless of their abilities or lack thereof. But the truth is that I am desperate for Zach to talk. And he may never. And I know this. And I push this desire to have him communicate with me down to a place so that I can deal with the rest of life. But it rears its head. Where is the acceptance? Shouldn't I just be content with the beautiful child he is? Why do I ache? Why do I suck at this? I feel as though for my faults and my humanity, I am being teased.

I connect with Zach every day. We make eye contact, he asks for tickles or kisses. He smiles. I grab him playfully and he giggles. He cuddles with me. Tonight he put two puzzles together with me, and then refused when I asked him to do another, laughing as he ran away to jump on his bed. The teachers like to use the phrase "self directed". Sometimes I think that is just a polite way of saying "pain in the azz". What would it feel like for Zach to take me by the hand, but for once, not request a drink or a chip, but to share something with me like a favorite toy or an idea?

I sometimes joke that Zach doesn't talk because he is smarter than the rest of us. I say this, and to some extent I mean it. I have always been pretty good at choosing words and phrases, and ultimately getting my point across. My big mouth has also brought me difficulties in my life. Meanwhile, my uber quiet husband manages to stay out of the troubles I get myself into. I have always made note that Steve is labelled "the nice one."

As for tonight, who knows what it was. I am thankful that I was there to hear it. But I stake no claims other than it happened. The mystery continues.

Girl Scout Cookies for Sale!!!

2012-01-21T13:26:00.005-05:00

Sophia is making a request...
She is selling Girl Scout cookies - if you would like to place an order - please send an email and tell me how many of which type you would like. We are willing to ship - but have to pay costs to do so out of pocket - so please consider that when purchasing.

Allergies/Intolerances
If you need nutritional and allergen information about the cookies that can be found here.

One Donation Two Causes
Also - if you don't want the cookies - but want to donate anyhow, we are taking cookie orders and delivering them to a local food bank for distribution - help two causes at once! Please make note when ordering.

Merry Christmas! Get me some ZipFizz!

2011-12-27T00:03:00.013-05:00

Christmas Cards went out late. Oh yeah, and the card was actually the card from last year that never got sent. Yup. We had a theme for this year: No Stress. Or at least diminished stress. Of course, that was not the reality in the least. But the holiday was not to blame.

After several weeks of waiting for Zach's extended school year to begin, we had to push a little harder for it to happen. For those not into the special ed terms - I'll give you my version as it applies to our situation: Zach goes to a typical classroom kindergarten where it is only half day and has his own special ed teacher and TA to support him. Since Zach receives 9 1/2 hour sessions a week of therapy (that includes speech, occupational and physical therapy) , and for the fact that these sessions are "pull outs" meaning he receives this services outside the classroom, we had agreed that at least a few times a week, these sessions would be appended to his day, so after school, they would run for instance a speech therapy session as opposed to taking him out of class to do it. We were told it would take 3 to 4 weeks to get schedules settled.

About one month into the school year, I had heard nothing from the school about extended day. So I began to inquire - schedules were still be settled, and the new PT was just hired. More time passed, and some phone messages were left, one of which was from the PT who said he would run one extended day session. More time elapsed and it still hadn't happened.

I went to Zach's special education teacher and asked her for his therapy schedule and was told she didn't know what it was. I then asked her to look into what was going on with the extended day. A week and a half passed - no comment. A few more days pass - and it was parent teacher conferences. The special ed teacher said extended day was being worked on.

About a week before Thanksgiving I went to the principal in person to discuss. After Thanksgiving I received a message saying they could get one session a week as extended day. She told me that she had met with Zach's team who discussed that his being pulled out constantly from the classroom would not impact him academically.

I told the principal that this was not what we had agreed to at the CSE meeting - and that I would be pulling out the recording that we made. She seemed to be indifferent that I had them digitally recorded, agreeing and the special education director even suggesting the extended day in the first place. An email was then sent to the special education director - a partial transcript of the meeting sent and we told them where on the recording to listen. The special education director said she would look into it.

Steve left his business trip early and when he got back in town, he made a B-line straight to the superintendent's office where he requested an in person meeting. An hour after Steve made that trip, we received an email from the special education director stating they were working on it and that extended day would start the following week.

We were also told that next time, we should speak up sooner.

There is more to this story and I will share it in the next post. Now perhaps my not tapping the keys has some explanation for you all.

The fall is a particularly difficult time for me, I have SAD (Seasonal Affective Disorder) where the change of weather and diminished natural light levels leave me very lethargic, plus the demands of the holidays, and the fact that several of my most unhappy events in my life happened during this time of the year (Dad had his heart attack a few days before Christmas, Buddy died a few days before Christmas, my sexual assault took place at this time of the year, we received Zach's diagnosis at this time of the year) leave me with little desire to be chipper to say the least.

Worrying about my kids just adds to the stuff. But I want them to have the joy that children should be able to have at the holidays. So, I do my best to figure out what it takes for me to get my butt out of bed in the morning and keep myself moving through the day. Coffee no longer makes the cut. Even 4 cups worth, although it does make my hands do this creepy shaking thing that had me getting nervous about Parkinson's. Exercise has always helped - but I have had a knee issue, so I have laid low on the running. But Pilates on Monday nights with my sister have been helpful, although one day a week of exercise only does so much. I have also tried to get more rest. LOL Okay - I just stopped laughing. Yeah - well, a dog who eats socks and then hurls and a child who sleep seems to be optional as a life sustaining requirement don't make for the best contributors to positive sleeping experiences for Momma and Daddy.

For this reason, I am really grateful to BJs and the sample lady who upon walking down the aisle with my cord of toilet paper and barrel of laundry detergent offered me a drink of some pink fizzy stuff. She made me listen to a 90 second blurb before I received my bottle, but alas, there it was a water bottle that had this miracle powder added to it that when combined formed a cotton candy colored beverage. And it tasted OK. And hoo haa - I was awake, and calm, and not jittery.

Since this moment in time, I have introduced the colorful fizzy making substance to my dear husband who has also embraced its' charms. ZipFizz is our current wonder drug for getting us through these times. B12, caffeine and 10 calories.

WARNING: TMI ALERT - DISCUSSING SICK CHILDREN ***********************
Steve was away a week, and of course my children decide this is when it is most important to get the stomach bug. While Steve wheeled and dealed (LOL) his way at a convention - I was joyously cleaning bodily fluids of all types from my germ laden home. My favorite part of the story is that we now have Lucky. And being that she is a large dog, we have to keep the toilet covers down so as to avoid her lapping up the succulent waters of the porcelain bowl. (Blek!)

What I never felt the need to discuss was to Sophia, how when she got sick at 2:36 in the morning (and kids always seem to do this in the middle of the night, don't they?) that when she ran into the bathroom to take care of business that despite her aim at the bowl, if you don't lift the cover up, well, we all know about vector forces from high school physics, right? Yup. Splashback. It was totally disgusting, only to be made worse that while I was trying to soothe my poor sick daughter, my large young pup came in and considered this dinner time. If you think I didn't hurl a sentiment or two at my husband during this time, then you just don't know me very well. NOTE: No children were exposed to profanities were launched during this tirade in fr
at this time, just lots of "oh... you owe me...."

The bug was fairly short lived (thank the Lord!) and minus missing a few days at school, readily remedied with time and a good washing machine.

END OF TMI STORY********************************************************

During Steve's departure, with sick children and crazed puppy underfoot, I managed to get all the Christmas decorations up myself - with a little help from my nephew. Christmas is a hard time for Steve - so I wanted to get as much done with him out of the house as possible.

I claimed victory over the prelit Christmas tree (5 strands of lights were out) , Grandpa's nativity set was repainted and setup up, and all the other accoutrements set in place. I was so proud of myself! Certainly getting setup for Christmas would help put us in the spirit - and indeed I think it helped.

We didn't make all the cookies, but we did make 300 pierogies with a friend. Christmas cards were sent out on Christmas Eve - oh yeah - and as I previously mentioned, they actually contained the Christmas Cards from the previous year that were never sent. Presents were mostly purchased online. Things were far from perfect, but things were great. No yelling. No frantic anything. Just letting the chips fall where they may.

Our Christmas Miracle came in the most interesting of places. Originally I thought I would write about the fact that at Steve's company Christmas party, I ran into an old college chum who I found out also has a son with autism. During our discussion his wife shared the name of a therapist that they think could be very helpful to Zach. Zach's speech has deteriorated once again. He is saying less, but more pronounced is his lack of pronunciation. His lack of communication skills has led me to start researching and consulting with professionals on alternative and augmentative communication technologies for him. With Zach unable to request his wants and discuss his needs, and the fact that at age 5 we have given therapies nearly 4 years to do this, we have begun to lose a little hope that he will communicate verbally. Sometimes I wonder if he is over in some other place and not wanting to communicate his needs, likes, dislikes. Should I just let him be?

So the other day, I sat reading a book to Zach while he cuddled up with me. He doesn't always appear as the most attentive child during these times, but after reading stories of children who seemed in another world later recounting in detail things from their pre-communication days, I keep it up. I often wonder why I write the things I do in this blog. Quite often it really is just a stream of consciousness. Well, I, totally unaware, began to bite my nails as I have reported in this blog is one of my most disgusting habits. Yes, stress levels are so high that reading a book brings me to this. Anyhow, Zach reached over and pushed my hand from my mouth. I was surprised to say the least, but I wasn't sure if it was a purposeful gesture or not. So I once again pretended to bite my nails, and lo' and behold, the kid grabbed my hand and put it in my lap. I was shocked. This is not some uncaring, unaware kid on my hands.

While I am not sure what exactly this means, it did help add some of that fuel to help me get over some of my dejected feelings about the difficulties with his school situation.Again, to many this might not seem significant, and to be honest, I am not exactly sure how to interpret this. Perhaps the only conclusion I have made from this, and likely the most significant, is that we need to keep those expectations high and we need to keep on working. My boy is growing, learning, and developing. And he does communicate some things.

Keeping our hopes high in Camillus...

Tricks and Treats

2011-11-07T18:17:00.011-05:00

Things are going fairly well in our household lately. Zach and Sophie went trick-or-treating together and it was a cold, yet precipitation free evening with a nice moon. We had a lot of fun. I was thrilled to have such a great evening with my family. Everyone had so much fun.

Zach was once again Thomas - OK OK - I know- isn't this the second or third year for that? Yes. It is such a convenient costume ( can be worn over bulky winter coats if needed in our tropical Syracuse climate) and he still loves Thomas. Plus - having worn it before, I think he sort of gets the point since we aren't able to verbally explain to him what Halloween is.

Steve took the kids off to the adjacent neighbors houses. Then he decided to pass out candy while our a family friend and Sophie took off in one direction and Zach and I went off in the other. He had a blast! He was so much fun. He rang the doorbells (too many times if I didn't pay attention - oops!) and when prompted said trick-or-treat. When people put the candy low for him to grab his own - he took it and dropped it in his bag. We did 0.7 miles - both sides! We at some point ran into Sophie and a friend and finished up with them. She was so darned cute even though her wig on her costume kept falling off her head. I think she really loved being able to go out with her brother.

Now this might not sound like anything significant to a lot of you, it sounds just like a typical Halloween, right? That is what makes it so significant to us. Whenever we don't have to think too much about what we have to do, that makes life so much easier for us. Unlike some of Zach's other developments, what I appreciated about this is that it was effortless, there was no preparation beyond what I did for Sophia - OK your right, even less preparation since I punted on the costume for him. :)

Pictures you ask? Ahhh errr.... yeah, well like I said, "no thinking".

Zach has recently begun chewing on the collars of his shirts and the cuffs of his sleeves. In behavioral terms, we have put this on "extinction". This means, for the meantime, that we ignore it and see what happens. I am wondering if his 6 year molars are pushing in and causing him to do this since he never did this before. Now as for Sophia - she is like me - likes to chew on things ALL the time. My chronic nail biting is a huge embarrassment for me - and she has a lighter version of it that started roughly 2 years ago. It makes me so sad that she might have learned this from me.

I had an adult in my life that was also a finger nail biter. I can recall trying to discuss this with her and she wouldn't talk about it. I remember going to my doctor and asking for help - to which he responded that out of all the bad habits to have - this one was benign comparatively. He went on to explain that if I would force myself into quitting I would likely take on a new behavior to replace it - and something with more consequences, like eating or smoking.

I have to tell you folks, knowing how my nail biting is worse than ever and done primarily at home, I have been wondering if I have been to blame for my kids oral fixations - a combination of genes and modelling. But then I recall the time when I began to chew my nails. I was on my way to a violin lesson, and looked down to see slightly long nails - nothing excessive for the normal kid - but for a violin player too much. My violin teacher was known to pull out the nail clippers right during lessons, and I can recall a snip that was a little to close to the quick. So I can recall taking care of business en route to the lesson. It's funny that I realize that might have been the beginning of the habit. Nervousness was paired with nail biting.

Yes, I over think things. All the time. I waste time doing it.

Sophie is busy this fall and I am almost happy that soccer is over for now. Whew! Sophie is enjoying all her activities - Girl Scouts, ballet, French, religious education. We are in preparation for her first penance. Unfortunately, our parish priest is very ill, and won't be able to attend the actual service. The instruction for first penance has been parent instructed which means that I have procrastinated and onyl begun working on it this past week when she is due to make her first penance December 5th.

I have discussed my struggles with faith before - but know in my heart that I want to give Sophia the sense of safety that I had from growing up within the Church. Although during these past few years especially after a priest who we had begun to befriend left the area, I have felt sort of deserted by our Church community. Having gone to them for help, we ended up being requested to set up the help ourselves for the church. I studied disability ministry a bit and realized that I could not afford to overextend myself and further. I was left feeling bitter. Had it not been for reading other mothers' blogs who had the same thing happen - I would have taken it more personally. I chalked it up once again to those not affected not "getting it".

Reading the materials for this sacrament has been very emotional for me. I feel like I have always had a very deep belief in a lot of the teachings of the Church and I struggle with the fact that I always felt that others don't take the teachings as serious as I did. This sacrament has always left me a little dumbfounded though - the emphasis on apologizing to those you hurt was never emphasized strongly enough in my opinion. Either way - I am not sure if I am connecting with God or just my core beliefs, but this journey Sophia is travelling has certainly brought up a lot of emotions. I always seem to take things more seriously - could this more "black and white" view of things be one of those genetic things that I passed on to my kids?

Thinking I was volunteering to pass out donuts, I signed up to work at Sophie's Penance Retreat. I showed up to find out I would actually be teaching a small class. (!!!) Oops. It was really no big deal - and extremely well organized. There were several breaks for us parent instructors and I had the opportunity to speak with some of the women who organized the retreat. In the end - I met a woman who was very open to seeing if we could get some of the kids with autism to receive their sacraments - particularly First Communion. She was a sassy smart Mom with whom I felt really comfortable. She likely doesn't know how her understanding and "can do" attitude gave me such a sense of faith again.

Now on to Thanksgiving we go....

Fall Joy

2011-11-04T09:31:00.018-04:00

We are 2 months into school now - and I have managed a few trips into the school to see how things are going in my kids' classes. Zach is in a typical classroom, in fact he has the same teacher Sophia had. And he and Sophia get to go to the same school. I love that - it's obviously convenient for picking the kids up, knowing the staff and all, but what really tickles me is that Sophie loves to see Zach in the hall and give him a hug.

Zach is not able to tell me how is day was due to his limited communication. The teacher occasionally sends me an email or writes in his take home notebook about any concerns. These were frequent at the onset of the year, and have greatly diminished as time has gone on. When I originally was thinking - I can't ask Zach how his day went, I then thought back to Sophia and how I when I would ask her, she would answer "Good" I then would ask: "What did you do?" only to receive the inevitable: "I don't know."

I remember looking into this, and getting advice about asking more specific questions: "What was your favorite thing you did today?" Sophie: "All of it." Then I would ask: "What was your least favorite part?" Sophie: "I liked it all, Momma!" Me: "Who did you play with?" Sophia: "Everyone." Me: "Can you show me something you learned today?" Sophia: "Mom - I'm tired." Yup - so much for that expert internet advice.

In the fact that I was not able to get my uber-communicationaly-abled daughter to give me one ounce of information on command about her day, I let it go. What I did take note of was her behavior: she was happy and wanted to go to school. Was she learning? I suppose. Sophia had a good command of the information required for kindergarten prior to entrance. What she was always lacking was the fine motor skills - and we had been working on that for a l-o-n-g time as we continue to do so. But one other note: she came home with some phone numbers of girls who wanted playdates. I checked in with the teacher and her OT periodically, and let the rest go. She was healthy, happy, and progressing.

So here I am with Zach. I ask him how is day was and I sometimes get a "Goot." response, most likely rote from running "How are you?" in discrete trials in his home program. Having learned from Sophia, I paid attention to his behavior: he was happy and wanted to go to school. We went to the Family Night Bookfair at the school: Zach seemed happy to go and didn't show even a wince at entering the school - and in fact walked to his classroom with his Daddy and seemed frustrated when Steve would not let him enter the room. Did he want to show us where he spent his day??

The Jog-A-Thon is a fundraiser the school PTA does to raise funds for their activities at teh year. It involves the kids doing laps in the bus circle in front of the school and people paying donations per lap. Both my kids did it. Zach was silly and distracted and I ended up running the circle with him a bunch of times to give the Special Education teacher a break. But he did it - and a few of his classmates (particularly one precious little Julianne) cheered him on, even took his hand to encourage him to keep going.

Then on Columbus Day - Babcia Morphet and I decided to take Zach to the zoo while Sophia had a field trip with her Girl Scout troop. Did I happen to mention that I think Sophia got into the best troop with the greatest leader in the area? I had decided after our last trip to the zoo where Steve was chastised for having Zach in a stroller by a fellow patron - that with Babcia there to help - we would see how far Zach could walk on his own. And yes - some stranger did say something rude to Steve about having such an old child in a stroller. UUggghh.

So, off we went, it was a beautiful fall day. And we were managing pretty darn well. Babcia and I were so excited to come upon 3 baby Siberian tigers - they were so cute! We spent time at the Asian elephant exhibit - something the Syracuse is known for. As we were spending time in this area - I heard a little voice say: "Hi Zach!" I look over and a little boy was standing next to Zach. I asked him: "Honey, did you hear me call him Zach?" to which the little boy responded: "No - Zach is in my class with me!" What a thrill this was to experience. And that sort of was a clincher for me - a classmate thought enough of Zach to say hello to him. This outside incident made me feel good about the unknown of what was taking place in his classroom.

Zach's special education teacher and speech language pathologist also spent a few hours here at our house and met with one of Zach's private paraprofessionals. They got to tune into what sorts of things we work on here to help support what was going on in the classroom, and what strategies have the biggest pay off with motivating him.

Outside of school, Zach began to enjoy the monkey bars in our backyard these past few weeks. One day, the weather was cold, it was pouring rain out, and I heard the alarm for the door opening go off. There Zach was - running off into the rainy cold day right to the playset. I donned my jacket and rainboots and met him where we went on to do 10 iterations of going across the monkey bars in the 54 degree pouring rain. I cannot even imagine what the neighbors must think. But he was so happy.

We have had some really decent weather these past few weeks and Zach's interest in climbing and the monkey bars has continued. I feel so connected to him this way - I LOVED climbing when I was a kid - and still like to try and navigate my way up an old maple when given the chance. The joy of fitting your foot into a crook to gain leverage to raise yourself up another 12" from the ground can feel empowering and freeing. That's my boy.

Silence and Sharing

2011-10-26T15:57:00.012-04:00

The value of a life had caused me to become mute. Oh, I had ideas, I had thoughts, we had experiences, of failure and joy, that could be shared. But I wasn't really sure what the value of that was. I wasn't sure what the value of sharing some of our intimate experiences was to myself, or to others. Most importantly I wasn't sure what it meant to Zach.

I, by most accounts, am not a fun person. That does not mean I don't have a sense of humor. Indeed, it is one of the things that helps me get through the day some days. However, if you want someone who is going to make you feel good or show you a good time, be the life of the party - yeah, well, what can I say? Not it.

I am analytical- seeing what can go wrong, the faults, the possibilities of failure. That is what likely drew me to engineering. This does not mean I am a negative person- I do not believe all is lost, that all people stink, that everything is ending and all is hopeless. I believe not all is at is appears, that details matter, that fine tuning can make big changes, that we shouldn't accept something as fact because it is convenient, as so often we all do. I want to build positive changes, I want to create things that have yet to be seen, I want to influence others to see their potential. I don't think that makes me negative at all. But fun? Yeah, well, not really.

I also believe that as much as I want to influence others in an effort to create positive change, I also accept that there are those beyond my reach - that my take on life doesn't jive with theirs. There are those who do not like what I do. There are those insulted by my posts. There are those who think that I am exploiting Zachary as I share our lives' story.

My sister recently pointed out that I have always been a person who who put herself out there. My mother, nearly 40 years my senior has never seen the value in discussing personal issues, as was the norm for her generation. My siblings, considerably older than myself vary in this capacity but generally tend to be more private in their personal dealings. Be assured, you do not see the whole picture of my family, some things are still left private, while others we feel need to be expressed.

I have contemplated over and over why I started this blog and what it has become, and what I want it to be. I initially was taking those snapshots of life in an effort to preserve memories - I used to take monthly shots of the kids and highlight the latest developmental milestones reached or activities involved in. Of course, this could have stayed that way, mostly facts and joy. But the milestones weren't being reached. What was I going to write about?

The participation in playdates and activities continued for one, but not the other. There was something wrong, there were these physical illness symptoms, requests for help from professionals, who gave no answers initially, and a bunch of people I deeply loved who had no guidance to offer, they had not been down this path before.

I realized that there were still milestones, just not ones as predicted for those who are typical. I felt alone especially when I would share our joys of small steps of achievement and people sometimes laughed. Or worse, they looked disappointed. I started to feel an overwhelming sense of being on a ship out to sea with no crew- a disconnect from the suburban upper middle class that I had long been associated with. No longer could I call a friend and say "Hey - does your kid do this weird thing?" only to be reassured that yes indeed, their kid did, or no, but they know so and so who did that.

I cannot even begin to tell you what this isolation feels like. Even amongst those in the special needs community - when you have a child unable to easily communicate this puts you into a minority of minorities. I have read varying reports - the statistics read that 25-30% of kids with autism are non-verbal. While others are worried about if their child can hold a socially appropriate, pragmatically correct conversation, I am hoping that when Zach is ill, that he can somehow indicate what is hurting. Both real concerns - but a distinct level of difference.

Something in life I have realized recently: you cannot make all the people happy any of the time. I have realized that when I share Zach's wins in life; his accomplishments, his development, there are those who think I am being a braggart. Furthermore, when I share Zach's needs and deviations, they think I am being a attention seeking, looking for pity, demeaning Zach whiner. The fact is - sometimes I do like to brag about my beautiful boy. And sometimes I do want someone to say: "Hey - sounds tough, I care, I'm here for you guys, we're listening." What I don't expect is for anyone to go out of there way to make our lives better - we are trying to do that for ourselves. And most importantly, what I hope to do for others is to let them know if they are on a similar path - those feelings, of regret, sorrow, grief, fear as well as joy, acceptance, anger, and fight are part of this journey with special needs. I will not apologize for my feelings. I will not apologize for trying to reach out to others who many be experiencing the same thing.

I am a better person because of the connections I have made from writing and reading about the journey of special needs. I have read blog posts of others that made me cry because they wrote exactly what I was feeling - something I might not have been able to express suddenly in front of my eyes, most likely from another mother, sharing an intimate piece of herself. They made me feel so much less alone. Sometimes they gave me practical information on strategies of working with Zach.

And when once in awhile someone not on our path makes some effort to show support when we are struggling - I cannot tell you what that means to our family. Those are the moments that help me regain some faith when I so often question why certain things are happening.

I am being true to myself by continuing this blog. I am better for it and I know it helps me be a better mother. I will likely offend, turn off, or otherwise irritate some. It is not my intention to hurt anyone, especially my children. And I feel that I am doing far more good here than any bad. I also have the support of my husband, who also has our children's best interest at heart.

For those who will continue to be upset by my blog, I feel that we have likely never had your support in the first place, and I ask that you not read it, for your own and our own good. I sometimes wonder if the people I upset likely have some lingering issues in their own lifethat may require some introspection. My silence will not make those go away.

I have always taken heat over my easy expression of things some think are better left unsaid. I expect those who have no regard for me or my families interests to attack when they don't like what I have said. I have hoped that those who love us to to respectfully express themselves if they are concerned about what I write, and some have.

Zach's autism is not something I am ashamed of. My discussion of our journey is to help bring about awareness of what one child's life looks like that has this diagnosis - because each case, each child is different from another. I read once somewhere: "We are all united by our shared humanity. But we are divided by our individuality." I feel that by talking about those differences, we can alleviate some of the fear of the unknown that frequently creates problems.

I wish everyone peace in this world. And I know nearly everyone, even those who don't like my blog, want to see Zach be happy. In an effort to extend to you what having the support of people not affected by autism can do for those who are - I would like to share two videos that have meant a lot to people with kids with ASD.

Peace.

The Things You Learn in a Decade; Revisiting Our Hopes and Expectations

2011-10-20T05:04:00.002-04:00

Twelve years ago I was alone and confused. Then came Steven. And I was no longer alone. Confused on the other hand? Well, 10 years later and I can positively attest that I am quite honestly more confused than ever. But I digress, or is that regress???

Our wedding had it's foibles; the cake, my dress, and the fact that the photographer forgot to show up, only one month after the tragedies of September 11. Yet, it was a beautiful fall day. A day of family and friends and celebration. It seems like a world away from where we are now.
Life has certainly dealt us a hand I didn't anticipate. Which made me go back and read this...

Hope and Expectations, by Leanne Boulware dated October 2001

We all dream. We have dreams of success, influence, and true love. I can remember dreaming that I would change the world.

I would engage the corporate world and be a highly accomplished engineer.

I would deal with the world’s evils and bring about some notion of peace

Perhaps I would even save the environment.

Alas, I had accepted my fate as an ordinary engineer, with simple accomplishments.

But then there was this dream of a perfect love, a soul mate. After many forlorn years of “turning over every stone” only to find dirt, and kissing frogs only to have them remain frogs, I had all but given up. I had this sense of who I was looking for, but never seemed to meet him. People told me I might be too picky, but I knew not to accept anything less. Even my father, just a month before his passing, advised me to not sell short.

I had actually gotten to the point where I prayed to God that if I was intended to be alone all my life, that he would take away the longing in my heart and the feeling that there was indeed someone out there for me. And then there was you. Little did I know that you had said your own prayer – that God bring someone to you.

So what does dreaming have to do with hopes and expectations? Well, all that I dreamed, and all that I had hoped for came true the day I met you. Life has never been the same. I know the world has not changed, but yet it all feels different. I can face the day knowing the world is not what I would like it to be, but that with you by my side, we will make it through. It doesn’t seem to matter anymore that I am not climbing corporate ladders, or solving world problems. I now see the world through another set of eyes – one that I hope to have guide me through the rest of my life – especially when my vision may become clouded with the occasional harsh reality of life.

You have made my dreams come true – and all that I can hope for in return is that I can be all that you want me to be. I will encourage you when you are tired, I will connect with you when you may tend to withdraw, I will feed you when you are hungry, and I will be by your side for everything else. In other words, I hope to be all those things that you are to me, and do all the things that you have done for me. Throughout the planning of this wedding, you have been nothing short of amazing – so now I promise you, I will see you through your Ph.D. with the same love and dedication you have shown me.

You will be a wonderful husband, I just know it. You will be a fantastic father to our children – 7 nieces and nephews who adore you already can attest to that!

Two computer geeks – analytical and pessimists – yet our favorite movie, “Lost Horizon”, is about what we both dream about “Shangri La”. That pretty much sums it up – you see – we’re both dreamers, with old souls– and we are right where we were meant to be – we are together. I can’t wait to see what life has in store for us!

So, thank you for loving me so extraordinarily. Till the end of time, my love, we will be.

That letter was written after those tragic days of Sept 11 at the request of our priest, Father Champlin who would go on to read it at our ceremony. Steve and I actually were at work and saw the plane hit the second tower together. I worked with intelligence personnel, and witnessed the feelings of responsibility for this tragedy by people who felt they should have done more. People most people don't know exist and spend their time protecting us. I see how the mothers of this world are likely in that same position - so important but yet invisible, unless the extremes are met; an unbelievable win or when tragedy strikes.

I went on to work for the Department of Homeland Security. I saw the world filled with people who had good intentions, some who were capable, some who were interested , some who were getting their years in. Such and important mission - yet the array of people in this world didn't necessarily create the best outcomes. How I have seen this with my own precious Zach and the people who have been set in place to support him. At least now I feel I have more of a voice in my concerns.

Steve did, of course, go on to complete his PhD - and even won an award for a prestigious dissertation, under the threat of me being a sugar momma and 6 months pregnant I might add. He has gone on to a great career, with presentations at conferences, awards, and the possibility of creating a technology that could make a difference.

It was easy in those early days to think of what would be; life was not yet filled with the hard work of actually doing it. Note to those contemplating marriage and family: even the best of marriages requires hard work.

Steve has seen me in my darkest hour. And he has stood by me. I am sure he thought about running away. I know I have. But he hasn't.

If we were to go off to SingleLand and he had his pick - he would likely not choose me right now. I am quite sure no one would for that matter. I am almost certifiably a flake and a loon - things are falling off my plate about as fast as they land there and I have a tendency to get involved in things I shouldn't. My recent realization is that I am not sure if this is any different than I have ever been. It's just the consequences never involved things so precious. And that is what made me realize a bit about who I am - things I am not proud of, things I am trying to address, things that Steve has seen all along, and he has tried to help, he has tried to support me, he has never chastised or humiliated me by pointing it out. He just stands with me. Every day. Facing whatever comes our way. While I can say our romantic love has certainly waned a bit in these busy, crazy times - I know that Steve and I have a connection and a friendship that will endure 'til the end of time.

He has given me the two most amazing children that have made me so happy. He has supported our family with his hard work and dedication, both in his career, and at home. He has given his children the precious gift of a strong yet nurturing self-sacrificing father.

While life has thrown us things I never in a million years would have expected, Steve has held steadfast, standing by my side. Of all the things I didn't understand and know back then, it is clear to me, that I did know a few things: namely? How to spot a good man.

Happy 10th Anniversary, Steven.

We are so Lucky!

2011-10-07T09:58:00.008-04:00

After Zach was diagnosed, we went on the next set of doctors visits - one of them being to a neurologist. Dr B recommended that we look into a therapy dog for Zach. Of course I was right on that (especially after losing Buddy)- but after seeing the $13,000 price tag - I was not jumping for joy. A few families managed to get funds from Medicaid or other public funds for these dogs. Some held fundraising parties. We decided that there were other things that needed our resources at that time. Not to mention, we were still mourning the loss of Buddy and needed some time.

Yes, this is a picture of our beautiful puppy, appropriately named Lucky. She was named by one little girl Sophia. The day before Sophia's birthday parties - we received a call from a rescue group that they were interested in coming to see our house. My cousins Karen, John and Heather had told us about the group after they brought their dog Griffin over to meet our kids to help us see if a dog was possible for us - and if so - what kind. We indeed like the golden retriever breed after trying out a bunch of breeds to include a rottweiler, boxer, and newfoundland.

I had submitted an application during the late spring and hoped for a nice potty trained 1 year old to cross our threshold one day, although I though it unlikely. Instead, we received a 10 week old who has managed to piddle on carpeting that we will need to replace because there is only so much a carpet steamer can do. And we just love her!

We had just discussed how we thought it was time for a dog in the house yet how finances were tight. In a separate conversation I had told Steve that I was going to have to cut back on some of the advocacy and iPad work- because although it was so-o-o worthwhile, free doesn't pay the bills. I felt a bit of karma working for us. The rescue group has not charged us a dime for adoption fees, and has even paid for her veterinarian care.

With this in mind - I am asking my readers to consider a donation to support this wonderful group who have given us another light in our house.
GRRCNY P. O. Box 735 Jamesville, NY 13078
Please let them know that your donation is in recognition of their work for our family. Please click on the picture to the right to bring you to their website for more details.

It is so nice to have her here. Sophia is totally in love with her. Her name? Sophia came home from French camp with a hand written request: Chère maman, on peut appeler le chien "Lucky"? My hopes for "Sadie" and Steve's for "Sheldon" were dashed. Next dog.

Now, as to be expected, Zach basically ignored her if he paid her any mind at all. That is until she discovered him and the ability to pull down his pants like he was a little Coppertone Baby. Then he became annoyed with her. But I did not fear. I knew they would figure it out. Zach has been slowly engaging with her, more and more every day. As of the past week, I love to watch him pet her. While he can be a little rough - he poked her in the eye when trying to touch her nose and grabs at her tail when she scurries by, she has not minded one bit. She no longer tries to undress him. She brings her toys to him. He doesn't quite know what to do about that yet. They have even cuddled a few times, although not for long, because they, along with Sophia, are about the most active creatures in the world.

As I pondered her name and mourned that Sadie didn't make the cut, I knowingly asked Sophia: "Why'd you name her Lucky?" Her response: "Well, we're lucky to have her Mom. " what I didn't expect was when she continued: "We're lucky to all be together." And so we are! Bonne chance!

My Beautiful Boy Turns 5!!!

2011-10-05T10:19:00.007-04:00

He's in kindergarten and he is now 5. Wow. How did we get here so fast?

It's 10:23, morning therapy has been cancelled, he's eating potato chips (OK - I admit I had a few myself) and a chocolate chip muffin and we are both still in our pajamas. That is how we roll in this house: birthdays are a day to break from all the requirements and duties of our life. In other words, we are lazy slobs who like junk food.

I spent last evening in tears. If you search around the web, you will read about "windows of opportunity" with autism. These are time periods that have been suggested to be crucial to the outcomes of children who are diagnosed early. The first oft cited window is 0-3 years. The next is 5. SLAM! Game over, right?

Now, let's get one thing straight right off the bat: I am not sad that Zach has only come so far and hasn't become the child I wish him to be. He is exactly who I want him to be - happy and involved. I hope those are the two things that make him feel fulfilled - my ultimate goal. (Thank you Ms. Cutler for your help with me understanding that...)

My tears came from self pity - a frustration with myself: I no longer work, have a graduate level education, have supposedly dedicated myself to my children, and yet I have failed him; his communication skills are extremely behind.

Something in me tells me he is much more capable than his existing skill set. Gut feeling? To a good extent yes. But a gut feeling with some research/science and anecdotal evidence behind it: he has a lot of the requisite skills for speech: his articulation patterns are mostly age appropriate, his receptive language is growing, he has several single words and a few phrases. The issue? He has yet to understand the purpose of language - most likely because I have not put into place the appropriate environment to realize the importance of communication. Without that, the gap will never close, and in fact, it may be growing wider.

Now I want to express to my readers - I do not cry. Well, OK I do - but very rarely. Compared to other women I have experienced - I am really pretty much on the low end of the scale when it comes to tears. The hours of crying last night that I couldn't control was just a shock for me. Why last night?

I guess I am also grieving the fact that he likely doesn't understand what a birthday is. I am in the process of trying to update him on when people ask him how old he is to say "five" and not "four" anymore. This morning my greeting of "Happy Birthday" to him was met with a blank stare. I wonder if the phone will ring with anyone from my family to wish him sentiments for the day. This brings me more sadness. (After I wrote this - Babcia Boulware did call - HURRAY!)

He enjoys birthday parties (see picture at right from birthday #3) - with his favorite part being everyone around the table singing with the candles on the cake. My selfish grief has yet to yield way to me even plan a party. I am hoping this post will help me clear my head to get out of this funk and figure out a way to celebrate the life that is definitely worth celebrating. I am so glad to have Zach in my life, autism or not. Nothing will ever be taken for granted like I see so many others do with those they love. Autism makes you realize that life holds no guarantees, yet it also makes you realize there is plenty of reason to hope.

He is my boy wonder. He has accomplished things that I didn't think he would, yet left other things out there to still be reached. He has helped me to gain insight into others. I have a life with purpose - when I see so many floundering that way - trying to find it in things that likely won't give them the soul satisfaction they are yearning.

My short term goal: figure out a way to celebrate this day for my beautiful boy. My long term goal: I won't cry at the next birthday. Zachary: You are a joy in my life. In a world of power struggles and lies, deceit and selfishness, you find your joy in dancing to a favorite song, swinging on a swing, and chocolate - things that will likely remain unchanged- simple things that so many people ignore.

Happy 5th birthday Zach!

Oh Glorious Swinging Colortful Surprises

2011-10-01T14:10:00.005-04:00

Once again Zach has managed to keep us on our toes. After years of trying to get Zach to expressively and receptively communicate his colors, just 2 weeks before starting kindergarten, he demonstrated it for us. It amazed me how all that effort and he just casually did it for us one day.

And then there was yesterday, once again, we have been trying to get Zach to independently swing for so long. Instead, he would hop on and do what I had nicknamed the "pendulum" where he would swing back and forth and all around like a weight at the end of a string. Semi-hazardous I might - so we had reduced our play set to one swing for quite awhile just to avoid trips to the local medical emergency facilities.

Well yesterday, he hopped on one swing. And I hopped on the other. I made a game of him bumping into me - and teasingly yelled "bump" every time we collided. Although I laughed at every bump, he did not like this. Then it happened. He just began to pump and go straight! I was like "holy cow". And once again - my kid surprised the snot out of me. My mother in law pulled up into the driveway and I called to her - she was surprised as well and yelled a "way to go Zachary" to him. I asked her to stand watch so I could grab the video camera. And now my dear readers, I present to you, my independent swinging in a safe way son in his next video: Zach swinging on a star....

Navel gazing

2011-09-29T12:53:00.005-04:00

If you think I haven't had much to write about, well , you would most likely be incorrect. I stopped blogging because in the world of prioritizing life with only 24 hours in a day, it felt too self indulgent. I love to write. I love to express myself. I find that I much better represent myself with the written word any day over any other form. I feel like it makes me slow down, not worry (too much) about how I might be taken, no interference of my quirks or body language confusing people as to what I mean, my hypersensitivity to others not affecting what I mean to say. I am ultimately a boring person, but here, I hold my readers hostage to the typeface. There are no worries if someone else is doing it better than me (there are better writers as my 11th grade English teacher would be certain to assure you) and if I am boring you (I don't have to see you glance at your watch). You see, I love to write, yet felt, much like everything else in my life, that my talent was mediocre at best and not to be pursued seriously. That pesky 11th grade English teacher will likely never leave my head. I am sure many an English teacher snicker or sneer at my prose. So without true talent, I felt my pleasure just didn't make it into what is important for the family.

I soon realized that my pleasure was not from my ability to master the art of writing, but my desire to express feelings that if left unsaid, would lead me to Prozac. I realized my story isn't necessarily special. Some of our experiences at times feel extraordinary. As I listen to Sophia and her eloquence and understanding of spoken language, I realize that she inspires me - not just as my child, but as someone who can clearly express their view of the world - and her passions. I am not sure if I am capable of that for others. But I know that Zach needs his voice to be heard - and his skills are just terrible that way. It would be great if people could see the world from his point of view, but, at least for now, few will. Communication still alludes him. Oh, he has a few words and gestures, even a phrase or two. But I know (as only a mother can) that he has a lot more to express about life. And it is a voice worth hearing, especially in this day and age. I am very blessed to have a child who has such joy with life. Indeed, Zach is one of the happiest people I have ever met. And he has a smile that makes my fears go away. He has a smile (with a few small dimples I might add) that I have seen bring joy to others. Indeed, he does possess a certain charisma. Yes, he is my kid and I am biased. But more than a few people have told me the same - and I think the reason is that nobody expects a kid with autism, "non-verbal" and immature in near all things social, to do that. Disability is supposed to mean pain, hardship, loneliness. Autism is supposed to mean aloofness and inability to connect. A blue eyed blond kid with dimples? That sort of blows that image.

He needs a voice and he needs people to understand his journey. Until he can tell you himself, I'll be here to fill in.

When Your Tired and You Know it Snap Your Fingers??

2011-06-20T16:57:00.003-04:00

He's been crying for 45 minutes, straight. This is the point in the day when Momma starts to get a little wiggy. DD (dear daughter) is whining for everything under the sun, Zach is tired and not liking the demands placed on him by the speech therapist, Momma went to bed late last night - so we basically have a house full of cranky people right now all trying to coexist. How do you think that works? Not real well.

We have discovered that Zach can indeed meltdown. He has had little tantrums in the past - I would say nothing more unusual than another typical child his age, with the exception of he cannot tell me specifically what has his goat. Then came Friday the 10th. And that afternoon we had 1 hours and 25 minutes of straight crying - big tears, sobs, so loud, especially for my little man, and he would throw himself into the couch (you know the big billowy stuffed one that he spread peanut butter over a few times these last few months) face first so that his sobs would be muffled. I swear he was trying to spare us from his agony. I am afraid it didn't work as the next 20 hours were spent with him miserable - although the crying did eventually cease.

At times like this it is difficult to write those fluffy little posts that, although real, don't permeate quite as deeply into the crevices of what are life can be like at times. Exhaustion. Fear. Sorrow. All mixed together. And unlike so many other things that cause those feelings, there is no cliche that applies to help get us through.

The cliches I grew up with are likely different than the ones you did - I think each person clings to a set of them that combined become a mantra for living. Maybe it is a great philosopher who goes deep into places you wish you could - sure they might appear scholarly, after all academia thinks so. Personally, I think a lot of them did a little too much me time and not enough hard living.

Some cliches run in families. People seem to like to recite what was once told to them. This is true in my family and my husband's. In my family a few come to mind at the moment: "Little children, little problems. Big children, big problems." Nope. Doesn't apply here - autism changed that. My personal favorite: "This too shall pass." What a crock. Autism certainly blows this one outta the water. Ask any caring parent to an ASD child their biggest problem - the fear of what will happen to their child once they are gone - time does not take care of this issue. Time exacerbates it. While some people are not as profoundly affected as others, for those of us who are looking at a lifetime of autism that will require support, we get scared. I've seen the injustice of Zach not receiving the services and care that have been contractually stipulated for him and I am a fairly strong advocate. What the heck is gonna happen when I am not here?

So amongst the flow of muddy waters we are now treading - Zach has acquired a new stim - he has begun to snap his fingers. On his own. Not having ever been shown how to. A skill, I might add, that is usually developed between the ages of 6 and 8. *sigh*

He is reading a few words now although getting him to learn the Dolch sight words (the, and, I, me, my, him, make, etc.) the school will be working on is of little interest to him, and thus, is not something he is picking up on quickly.

Going off to sleep now. The cries have subsided for now. Time to make hay...

ORANGE Alert

2011-05-16T21:12:00.008-04:00

Today's alert level is ORANGE. While no injuries were sustained, capital damage has been determined. According to the maternal authority (MA): rice had been tracked throughout carpeted family room while she took a phone communication from a team member. While MA cleaned said rice catastrophe, chocolate peanut butter was then smeared onto family room couch.

Suspect is said to be adorable short male, 3' 8", blond, blue eyes, with enchanting smile. Accomplices are said to be suspect's OT and PT who helped to provide the suspect with skills to open doors (refrigerator) and jars (peanut butter) and are being sought for questioning. According to expert profilers, the suspect will likely strike again within the same environment. MA, although sustaining no permanent injuries, should be monitored for requiring stress relief.

Currently, MA will require 2 glasses of a grape fermented beverage this evening. Please all be on alert for possible future instances. MA will need to be monitored for how much support and shoulders to cry on she will need.

Some days are just too much to handle straight.

Today's Snowflake: Ben

2011-05-11T14:41:00.000-04:00

Today's snowflake is a bit unusual. This was not a submission by a parent, but rather a video I found after learning a bit about this fellow from an agency that provides support, Onondaga Community Living.

This family is awesome in how they have come together to support this wonderful man. He is even a businessman! He has a website where he sells his furniture. Go check it out!

My favorite line from this video clip comes from his aid:

"...the greatest gift of all is the relationship, being present."

The power of appropriate support is amazing! Way to go Ben!

BEN from Mahala Gaylord on Vimeo.

Ben Lehr

Ben even has a web site. Yes - he has his own business! I am so excited by this that I have to share with others - check out their website.

http://benlehrfurniture.com/default.aspx

She finally asked

2011-05-04T22:48:00.000-04:00

Sophia, without being asked or even commanded to, made her bed the last few days. This warranted a trip to Michael's, avec coupon for 40% off, where we would graciously award her the Squinkies set of her choice. Those of you who personally know Sophia know that small things and rubbery textured things are some of her favorite items, for whatever sensory reason why. Small rubbery things intended as toys, aha Squinkies, are just down right irresistible to her.

So off, after dinner, the family went to Michael's. But first Mom and Dad decided to go to Bath Bed and Beyond to pick up a canister of CO2 for our wonderful seltzer maker. Have you seen these things? I got one for my birthday from my awesome SIL Cindy and MIL. Terribly cool - we use it all the time!

Sophia has known for sometime that Zach has autism. She even understands some of the details - or symptoms of autism. But that doesn't mean she gets it. Nor do I for that matter. After our purchase at Bed Bath and Beyond we were off to Michael's. On our way out the door, Sophia said "Hey Mom - it's not that far away - can we walk to Michael's?" I was struck that she wasn't being lazy and preferred to walk. The boys went off by car and Sophia and I went off by foot.

Was this a purposed move to get me alone? I am not sure. But it wasn't going to stay innocent for long. Here is the conversation that immediately followed and, frankly, left me, of all people, speechless:

Sophia: "Mom, is autism a bad thing?"
me: "ummmm"
Sophia: "All those people at our house all the time. Are we trying to train the autism out of Zach?"
me: "uhhhh"

The only thing I managed to stammer out was that Zach was different, and that I loved him, autism or not, that being different does not make him less of a person nor less lovable.

But it left me with a distaste in my mouth. I felt that all this time, I had forgotten some basic fundamentals behind all this. At first, I was trying to beat autism - there was that time window that we were trying to beat. We are slowly about to exit that window now - and no where near where I had hoped. He still is not talking, he still has little understanding of what I am saying, he is more and more obviously different than his peers as time goes on.

These questions Sophie asked, simple as they may be, with obvious good choices in how I could have answered them, were left unanswered. This wasn't about sounding good. I can speak eloquently about these things. But I am tired of facades. I need this to be real, true. I wasn't going to lie to her about such a profound and important concept, that in all honesty, I need to answer for myself.

What am I fighting for? What is the goal here? What are we trying to achieve? What do the therapists, teachers, all the practitioners involved think is happening here? Are they just working for a paycheck like I did all those years as an engineer when I was definitely not working on things I felt passionate about? Is this all a scam? Would he be better left alone to evolve and develop on his own will? What is my role in all this? Is autism bad or is my desire to make him as "normal" as possible the problem?

Sophia's questions, honest and important, and I said nothing meaningful back. I was left numb. And that was not the worst of it.

I am a fireman's daughter

2011-05-02T12:12:00.007-04:00

A childhood friend once pointed out that she thought that my family was the quintessential American family growing up, pointing to the fact that I am a fireman's daughter. And I am. I never realized that fact is so meaningful to who I am. But it is.

Daddy was a tall, sometimes intimidating man, with a southern drawl, a decent temper, and a heart as big as they come. And this brawny 6 foot 3 guy drank tea, loved to shop, and teared up when watching the movie "My Girl" with me.

For the most part, my childhood was great. I was mostly unaware of the dangers Daddy faced - and he didn't share them. In retrospect, I realize being awakened at 2 am with a pizza in hand from Park West that he brought after a trip to the bar in the restaurant was likely a bad day that he couldn't talk about. I think now did someone die? Was a child hurt?

In the second grade there was a terrible fire in the city. Chris Kovac (*name changed for privacy's sake) was in my class with me. His dad was in the same fire company as my dad. But one difference, his dad didn't make it home from the fire that day. I think that was one of the last fire calls my father was ever on. I went all through school with Chris occasionally talking to him, but not friends. A glance at him made me realize what I had in this life. I realize now I often felt guilty that my dad was OK and this prevented me from ever truly conversing with Chris.

We didn't have a lot of money. But we did OK. There were some lean times. I came later in life to my folks, so as I got older, finances were more stabilized and things weren't as tough. But still, there was not a lot of money. But enough. I tend to have these compulsions that I realize are brought upon by my upbringing, in particular when it comes to finances. Reuse, reduce, recycle? I didn't need some environmental advertising campaign - it was the way we lived.

I am thankful for being brought up this way. Mom and Dad were children of the depression and WW II - they knew what doing without was like. I never heard them complain about it. They knew how to stretch a dollar; to make cube steak (blek) taste good, do home and car repairs yourself, get the extra job when needed. Throughout most of my life there was Sunday dinner at 1 pm, after morning services at the Catholic Church, where most of the family would gather. An aunt and uncle, some great aunts, a few cousins, knew if they wanted to come over, Sunday was when the gang would all be there. No matter what was going on in life, Sunday dinner seemed a constant.

When it came time for college, Mom and Pops sort of stayed on the sidelines, advising me minimally, and trying to get people they knew to help me make my decisions. I knew money was tight, I had no clue what I was doing, my grades and standardized test scores were pretty good. There were a few scholarships, but tuition costs freaked me out. I didn't even try an Ivy League school, but RPI and RIT actually appeared to drool over me. But the sensibility of a state school could not be denied in my mind, and off I went. I had a hard time adjusting to college life. I got a job and worked through college, trying to pay tuition, books, etc. I took out loans. Pops helped out a lot.

When I got my first job at General Motors - I felt like a rich man. Indeed engineers get paid well but not like the more lucrative professions such as a doctor or lawyer. I didn't know that - I was amazed - my starting salary was close to what my father had retired on just a few years prior. I had heard my Mom talk about a French restaurant in Syracuse frequently. I called up Pascale's and set it up, told her to invite the family (including a few aunts) and dinner was on me. I brought the ladies white roses. I felt like such a big shot. Of course, my family still having their blue collar flair, complained about the portion sizes, the sauces, and I forget what else. Afterward, I swore the next time - Ponderosa.

The second order of business was how to repay my folks for all they did for me. There really was no way to do that financially or otherwise. But Dad had never had a new car before. I called my sister, told her of my plans. Like me, my parents had supported her in her college education and she would be soon be graduating herself. Together, we put a nice size down payment on a teal blue Buick LeSabre. It was probably one of my favorite moments in my life - being able to do that for them. My parents first new car ever.

Steve and I are by no means poor. Without my salary, and with the onslaught of uncovered expenses for Zach, things are tight. But we are so fortunate to have options. I thank God that Mom and Dad gave me the sensibility to not live the high life, but within my means. We do live in what I consider a huge house, but it isn't exactly well decorated, in fact it may look a little sparse. In the dining room sits my great Aunt's dining room set, circa 1945. In the kids bedrooms, a dresser and bookshelves from Steve's childhood, in the guest room, my grandmother's dresser and night table. We did splurge on some bedroom furniture 2 years ago, and some living room and office furniture. But everything is piecemeal.

I kinda laugh that we live in a neighborhood that when I was a child that we would take Sunday drives through to see how "those" people lived. Here we were driving in to our lovely neighborhood just 3 years ago with our 13 year old vehicle up and our minivan that is pretty banged up, but safe, so we leave the bangs. There are a million Honday Odyssey's on the road, and I think it is safe to say, ours will never be stolen. I like to say it has been "customized with anti-aesthetic theft deterrents".

I am a fireman’s daughter. I may have faults, and dirty hands, but I have pride. When asked in grade school what our fathers did for a living - someone would say "lawyer", someone else "banker", someone else "engineer" - and then I would say "fireman" and you know I was the coolest kid that day. I mean how can you compete with red trucks, those heavy uniforms and helmets, and, well, fire? I loved telling people about my dad. Firefighters are brave and strong. They are heroes and everyone knows it.

My dad was my hero, too. And not just because he was a fireman. His heart just couldn't have been any bigger. My cousin once described him as a man who made everyone feel like they were his favorite.

He was not perfect. I remember quite vividly: he would spank. And boy did he. And then he would come back with tears in his eyes and a pack of gum explaining that we had to learn right from wrong. He always emphasized compassion, love, service, Jesus. "Love the sinner but not the sin." He was far from a haughty man. They say women marry men like their fathers and I often wondered how that could be true for me. Steve a PhD intellectual type, bald, glasses, sorta geeky, sarcastic. My father was a high school grad, enlisted Air Force vet, tall, brawny, with a beautiful wave to his hair, and not a hint of sarcasm to him. Humility and sincerity. Probably the most unique traits about both of these men. I see it now.

As I grew older, and the fireman thing didn't impress my peers nearly as much as it did years earlier, my teenage ego kicked in and I was likely not the nicest about my dad. The girls that had the cool clothes, fancy vacations, and ski trips in the winter, had fathers that belonged to that abstract group of professions like engineers and lawyers, that no one really knew what they did, but it seemed to be working well for them financially. I was determined to go into a profession that would put me in the ranks of those who had nice stuff and not just nice intentions.

Fore a brief time, I wore the nice clothes, flew on planes that took me to impressive places, ate out at restaurants that served things on fire on purpose, started doing some hip things. It is amazing that living that life never made me happy alone. All those years of Steve and I working yet living way below our means, I never let the impressions of my parents get away from me. I am grateful for their guidance. But it isn't just finances they taught.

My parents love for their children and their grand children was paramount. Today it breaks my heart as I think of how my father would have loved Zach, without care or worry of his autism. How I need him in my life to tell me what not to worry about and what to work for. I am grateful for the bit piece of humility he passed to me. I am grateful to the heart he gave me that masked by my sarcasm, I know is in the right place. I am grateful to the art of compassion he and my mother made priority when dealing with others, and easily passed down to me and my siblings. I am glad he never let me get "too big for my britches" - and when he saw me acting pretentious, was quick to point out that I was certainly not walking with Christ.

I swear I can hear him laugh at the bizarre things that Zach does - not in a mocking sense, but a sheer enjoyment of Zach as an individual. I can see him being a protective papa if he ever saw someone dare tease Zach - that six foot three fireman presence that he judiciously used to intimidate those with not-so-nice intentions. All with that soft soft center wanting to embrace anyone who was hurt or struggling. It tears me up to know that my children will never know him.

Sophia has been watching the movie "Fireman Sam" over and over(perseveration anyone?) again on Netflix these past days. I cannot help but wonder if my dad's spirit is guiding her in her obsession with this movie.

I miss him. I wish my kids could have met him. I am a fireman's daughter.

Happy Birthday Pops.

It's Not All Bad: Request for Donations

2011-04-21T19:18:00.011-04:00

CLICK THE RED HOUSE TO DONATE TO FEAT OF CNY!!! THANKS!!!

If you are still reading this blog, after all the rants, raves, and frankness, then you likely don't hate me or find me totally annoying. There is the odd chance that you do hate me and read because of a delight you take in my struggles, which would likely make you diagnosable in some taxonomy or another of the DSM. I'm kind of banking on the fact that most of my readers are rooting for us and not looking forward to our demise.

I often wonder how many people in my life are trying to help versus who are just doing the base minimum in order to state that they are helping. I am pretty tough on my family. Yup, I know. If you haven't figure out this by now about me, my expectations are, well, a little on the demanding side. I become downright argumentative/judgmental when my requests/demands are not met to my liking. And that happens a lot.

I try to keep in mind that they likely don't mean to hurt me. But I guess that when I tell them they are doing as much, and they refuse to accept any responsibility in their actions of making me feel that way, well, I become disgruntled. But there are several occurrences where they brought me joy - and I am not sure if I ever relayed that.

Now as much as I complain about my kinfolk, I do love them. And they aren't all out evil. In fact, sometimes they can be quite charming and even amaze me with their kindness. Recently, Zach's godparents began watching Sophia and Zach on Saturday mornings so that Steve and I could participate in training runs.

Steve and I will be running in the 33rd Annual Syracuse Mountain Goat 10 mile Run on May 1st. We have been training for the run and are running it in dedication to those affected by autism. We are asking those who want to support us to make a donation to Families for Effective Autism Treatment a local non-profit group that provides resources and support for many families affected by autism. Please consider donating to this terrific organization - they accept credit card donations - and let them know it is for the Mountain Goat run.

Anyh0w - the training runs have been on Saturday mornings at 8 am downtown in Syracuse. That meant having a sitter at our house at 7:30 am in the morning on their day off from work. And Cathy and Mark, without my asking, volunteered their time to us. It has meant the world to me and has made a difference in my disposition, because this is exactly the type of support we need. 1) I was able to get time with my husband doing an activity we both enjoy. 2) I was doing something healthy for myself. 3) I was getting out of the house that I feel so chained to otherwise, and 4) I was getting a break from the kids!!!

Aunt Cathy and Uncle Mark also had us over for dinner during Passover. It was so pleasant.

As for the rest of life: Zach's base paraprofessional (therapist) has left and we are once again scrambling. I have found partial replacements but there always seems to be issues of one sort or another. I have yet to receive the old data from a previous teacher which may create a problem if we don't get it soon because in order to qualify Zach for summer services, we need to show regression of skills from periods when Zach did not receive therapy (vacations, breaks, etc.) . If we don't have the data that may pose a problem. We attempted neurofeedback with Zach last week. The session was a struggle, and I noticed absoultely no changes in Zach, so we may revisit, but for now, I think we will be passing. Zach starts play therapy this week a to the tune of $60 a shot. Yikes! He would have been working with this therapist for free had I not been dimwitted enough to pull him from his preschool program. *sigh*

Sophie's test results are in from school. She is fantastically average according to the tests. According to observers in her classroom, she has some issues. So what does it mean if you test well, but in the academic environment, you have struggles? We'll find out - Sophie's meeting with the school district special education department (CSE) is May 10th. The fun just never seems to end!

So please do consider making a donation to the great organization I cited above - any amount is appreciated! They have done a lot for our family and others. How many times can you give money to a charity and absolutely know it is being used wisely? I can assure you, this is one of those times.

And as for Tuesday April 19th... Camelot

2011-04-19T22:19:00.009-04:00

17 children. I think. I don't know. And there were many of them on the spectrum. How many? I don't know. All I do know is there were a crowd of people at my house. There was confusion. There was pizza sauce on my walls and good couch. There was happiness. There was even a striptease. And I loved it.

It brought me back to Sunday dinners at my mother's house. It thought back to the holidays of total chaos that I adored. I am the youngest of 4. My siblings all basically had children at approximately the same time - my one sister through foster parenting and eventual adoption of my beautiful niece. I was a kid during this time.

But I loved the fact that amongst the chaos, one Christmas the torn wrapping paper in my mother's living room must have measured 2 feet high and one of the kids was walking around with a bottle of scotch meant for someone else. There was laughter. There was such joy.

Family gatherings haven't been quite the same for us. We have the only young children in the family right now. And then, Zach doesn't quite put on the show like expected. I feel that we let others down; they go out and get these presents that we have to entice Zach to open. He doesn't show the reaction and gratitude of his sister. It took us so long to get him to understand to take the paper off. Now, he just rips with abandon,sees the surprise and tries to figure out what it is and what function it serves.

But then there was this past Christmas 2010. He finally showed interest in opening up his own presents. I cannot tell you how stinking excited I was. It's one of those things you just take for granted if you don't have a special needs child. And then it happened. I was pulled into a bathroom - pulled away from watching one of my son's precious moments. I was told a story of abuse and pain. My son's moment continued, and I wasn't there to watch. Cousins and aunts and uncles were there, but they didn't understand the significance. I only have so many of these moments, and someone selfishly took that away from me. Yes, this person was in pain. No, I didn't cause it. Why did they have to choose that moment to tell me? Why couldn't I just have that one freaking moment of joy in my life. All our joys are so hard fought for. Why does everyone continue to expect me to solve their problems? Can they not see we have ones of our own, ones that I cannot handle?

That's family and autism. You can watch me as much as you want. You can even say you love me. You can watch Zach. You can read my words. But, my heart is only understood by a few others out there. This is a case where blood being thicker than water does not apply.

It's so hard when I see a newly diagnosed parent going through this. It breaks my heart, it hits so close. It makes me relive that place all over again. I had some friends over the house today with kids the same age as mine, but neurotypical. They are so flippant about things involving their kids and what we are up against. I realize there is just no way to describe the heart of a mother when faced with things like which preschool to choose for your nonverbal child. You just have to live through it to understand the pain, the torment, the guilt, the fear. It's so freaking unfair. I feel so connected to all my fellow ASD mothers that barely know me because no one else will ever understand, it just isn't possible. Just us. Connected by that weight on your chest that never seems to go away, that nightmare that you never wake up from but get used to facing.

Part of that nightmare is that of the ever-disappearing family. (I stole that from a facebook friend.) I was always so proud of my family. I knew we weren't the Waltons, but I really felt like I was dealt the best hand possible. I had two parents who loved each other, siblings with nice spouses and beautiful children. We got together at holidays, on Sunday's at my moms, for birthdays, and sometimes just to get together. I always felt like if I really needed them they would be there for me. The fact is, I was fiercely independent and really didn't need them much for many years.

And then there was diagnosis. These past few years my life has felt like a round of musical chairs, where I thought I had the last one, and it was pulled out right from underneath me. The thing I always valued so much in my life felt like it was an illusion. I could see them, hear them but when I went to reach out to touch them, I reached right through them. I cannot ever begin to tell anyone how hurt I have been over this. And I am sure my family would tell you how much I suck if you were to ask them, and they would probably be right. I do suck. In so many ways I cannot begin to count. In so many ways I never knew, until I had this little life that depended on me for so much and I began to fail him.

So where are they for him? Hate me, turn your back on me, but my kid? I just will never understand that. Why won't they spend time with him? Visit him? What about Sophie?

Let me say that Zach's grandmas are top notch. If there were ever two women who loved their grandson - it is them. And for that I am so happy. But those days of family get-togethers, with laughing and games and sharing, yeah, my kids won't be having much of that with my family. They can say it is because they don't have kids my own age, and that is probably right. But I was a single teenager, twenty something year old, without any children, and I made a point to spend time with all their children.

There were movies, museum visits, camping trips, the zoo and endless sleepovers. I don't think they remember. I think it must not have meant to them what it meant to me. I love my nieces and nephews almost as fiercely as my own kids. I miss them. No one wants to visit hysteric Aunt Leanne. I guess I probably wouldn't want to either. But my mother and father didn't raise me that way. You visited whether you liked it or not. Family was family and we supported one another. I think about the hospital visits, or the nursing home visits, cleaning at great Aunt's house who could no longer do it herself, the endless birthday parties, car rides that took forever to the south to visit people I felt I didn't even know but I was told were my family. Kiss them, hug them. This is your blood.

I am not angry with my family. Anymore that is. Maybe that is part of this acceptance thing I keep on hearing about. But the facts still remain the facts. And my wants and desires still remain too.

So I had a surrogate family over. With their own weird kids like mine. Ones that wanted to be around me and my kids. They appreciated my offerings, tolerated my personality, asked me how I was doing and what they could do to help. Little did they realize that by trashing my house and then helping to clean it up, they gave me just the medicine I needed; the gift of their time, the gift of their presence. For one brief moment, I wasn't alone in our journey. Camelot?

Today's Snowflake: Cody

2011-04-12T22:49:00.006-04:00

The Snowflake Project

Child's First Name CODY

Child's Age 9

Diagnosis Autism, ADHD, ODD, Anxiety Disorder, and Sensory Processing Disorder

Age of Diagnosis Autism – 3 years old, Sensory Processing Disorder – 4 years old, Anxiety Disorder – 5 years old, ADHD – 6 years old, and Oppositional Defiance Disorder – 7.5 years old

Family Description Momma Bear, Papa Bear, Big Brother Bear (16.5 years old)......and mini dachshund Snicker, baby kitten KitKat, Turtles Onion and Olive, and Nemo 1 & Nemo 2 goldfish

Age Symptoms First Appeared/Noticed Doctor saw signs early as 6 months. At 18 months, he stopped saying new words. Stopped looking at people at age 2. Easily frustrated at ages 2 – present. Noises bothered him since early baby days. Stopped being able to wear “normal” clothes at age 5. Brain started “talking” to him at age 5 ½. Couldn’t eat “normal” food until at least 3 years old (no meat until 6 years old). Would gag on almost everything.

Symptoms of Autism Social awkwardness, don’t like to look into other’s eyes, easily frustrated, lined toys up since a very early age, rocks back and forth when upset or frustrated, memorizes and repeats commercials and/or movie trailers, lack of appropriate humor, lack of ability to “make and keep” friends, bounces up and down when nervous or excited, screams when can’t find the words to say, runs away when feelings become overwhelming, can’t talk about his feelings, plays with fingers and claps hands as stimming, change in routine is TERRIBLE!, needs precise rules and be reminded of the rules frequently, etc.

Child's Grade Level in School 4th grade at Special Education Boces School

Types of Services Child Receives Cody goes to a special education school where he is striving. He receives Occupational Therapy 2X/week, Speech 2X/week, Counseling 2X/week, cognitive behavioral therapy weekly, social skills group

What Treatments Have Been Most Beneficial for Your Child Cody is on medicine. I am not a “medicine cures all” kind of person. I don’t want a medicine to “take away” all my child’s “issues”, as I feel that he needs to learn to “deal” with the world as best as he can. But on the opposite note, I have no problem giving him a low dose of a medicine that can help him control his anger and aggressions. and that can help him control his impulses and be able to sit and relax when he wants to sit and relax. We have finally found the right mix of medicines to allow my Cody to flourish. And the weekly appointments for his cognitive behavioral therapy have done wonders with helping him overcome his phobias and fears of the unknown. My Cody is back!! I sure did miss him!

Co-morbid Conditions ADHD, Oppositional Defiance Disorder, Anxiety Disorder and Sensory Processing Disorder

Please check out Cody's video by clicking this link!

What would you like the world to know about your child?

My Cody is my world. His smile can light up any room. With a little patience and understanding, he can be one of the most sweetest and loveable kids you’ll ever meet. He has a heart of gold and wants so hard to be liked by everyone. He doesn’t always make the “right” choices, but he’s just learning to take the consequences for those choices he makes in life. LOL. He loves to draw (and he is an awesome artist), read (he’s been reading chapter books since he’s been 5 years old), and play with his Nintendo DS. He is totally obsessed with POKEMON and can talk about them all day long if you listened. Of course, he doesn’t understand when someone doesn’t want to “listen” anymore about his Pokemon stories, so he keeps on going and going and going. He is a good boy. He is on a few medicines right now that have made an incredible change in his behavior. He is starting to talk more about other stuff than just that of what interests him. He is more “calm” and is such a better friend. He is working so hard on not running when he’s upset, but rather to use his words instead. He is such a quick learner. He loves school and loves to be loved and wanted. HE IS LOVED AND WANTED MORE THAN HE COULD EVER KNOW!!!

The Snowflake Project

2011-04-11T00:01:00.004-04:00

It's April 11 and we are expecting temperatures in the mid 70s. But when you live in Syracuse NY, you just never know when that snow might hit again. Indeed, last year on Mother's Day, we had a dusting. Although the snow might not fly again outside for a few months, there's some other snowflakes I would like to concentrate on.

In order to try and get Zach's needs met, I have taken on the best approximation I can muster of what the world looks like from Zach's perspective. In this process, I have focused on his symptoms of his autism and attempted to determine what may be the cause of these symptoms other than just letting this mystery blanket term "autism"be the answer. Through this lens I have built, I realize that I sometimes forget that this is Zach's version of autism, and no one else's. I am now cognizant enough to realize that I need to take my filter off and be open to all the possibilities when talking with someone whose child also has autism, as they, too, have their own version.

Much like myself, I have found that a lot of people tend to define autism by the one individual they may come into contact with that has it. From my realization that this just aint so, I have to chuckle at the very true tone of one of my favorite quotes : "You KNOW one person with autism, you know ONE person with autism."

I am attempting to create a series of profiles of children that describe how unique each child is. I have begun to ask parents to provide me with brief narratives describing their children in the form of a template. I am hoping this brings some awareness that each child is as unique as the snowflakes that fall from the sky, and should be approached as such. I am also hoping that this allows some parents the chance to express what they want others to know about their child than can't be done in a fleeting conversation or quick glance.

I will post these profiles - perhaps at rate of once a month depending on how many I receive.

If you would like to participate, please download and fill out the document located at this link and make sure to add in your city/state to your response.

Forsaken

2011-04-08T10:18:00.000-04:00

We have been lied to, cheated on, and taken advantage of so many times since we started down this path, that I am numb to the inequities and unfairness of our situation. And I will reiterate, Zach is not the problem. Zach is wonderful. People treating our need as if it is something they can take lightly is the problem.

As much as I am grateful for help - I do not like the lack of professionalism I feel that we have been forced to accept because of our situation: there are those who are paid to assist us who show up late, leave early, miss multiple sessions, text during sessions, show up unprepared, don't do what they say they are going to. I have always tried to be fair and understanding. But all this latitude I have afforded people has created much too much a comfortable environment - and people, purposely or not, took advantage of that.

As "smart" as some say I am, and as much as I know what my son's needs are, that just hasn't managed to equal that Zach gets what he needs. Initially I thought it was my stubbornness getting in the way, my difficulty in asking for help after many years of being fiercely independent. Autism has definitely taught me to ask for help. When it turned into pleas for help, I realized that my stubborness was no longer the issue.

I understand that I have a strong personality, and I realize looking back these last few years, that I have tried to compensate for that. I have accepted poor performance and inappropriate conduct to neutralize my particular negative ways. I feel terrible guilt that in an effort to make up for my faults, I may have jeopardized my son's future.

It has been a particularly bad week here. Steve just realized two days ago that our main therapist will be leaving in two weeks. I am not sure how he didn't know this other than there has been so much turnover and confusion, and he has been in the midst of major deadlines at work, that he just didn't hear. Zach is getting bare minimum services right now. And his latest special ed teacher has no experience with kids on the spectrum.

On top of that - we are currently in the process of determining if Zach may have Lyme disease. This has required testing and administration of many rounds of antibiotics which has me growing weary. As discussed in a previous post, hair cuts and dentist appointments are two particularly difficult tasks for some of our ASD kids, for which I can personally attest, and taking 6 doses a day of medication, each one a struggle, pure torture for both me and Zach, is yet another common difficulty for some of us, too.

Yesterday, after an hour of unsuccessful attempts, and the clock ticking as the time to get to an engagement clicked closer and closer, I lost it. For the first time ever, I yelled at Zach. I couldn't calm down. I was so upset, so exhausted, so resentful, I couldn't believe it. But he couldn't help it either. Some of it was his refusal to comply, but I keep in mind that he does not have good receptive language; he does not understand that it is something to do with his health- I cannot get that information across to him, so why would he comply?

In the end I became totally ashamed that those people who I should have been yelling at received my patience, and my beautiful son who deserves nothing but total compassion and every ounce of patience I have, likely received their portion of my frustration.

Trudging through mud again.

This one's for you Aunt Cindy

2011-04-02T17:53:00.009-04:00

Haircuts. Yep. Another thing you likely take for granted if you have typical children. When I was still working, Sophia had seen an advertisement at Nana and Nono's house (her surrogate grandparents who watched the kids while I worked) for a place to get a haircut. They had a little jingle that she used to sing it all the time. I remember thinking that my kids were getting exposed to the advertising on TV which since we were diehard PBSers and DVD/VHSers - hasn't managed to make it's way into our house to tell us how inadequate we were at just about everything in life. Like I need reminding, ya know? But you know, not all advertising is about sucking every penny and ounce of selfworth out of you. Sometimes it is just that - letting you know they exist and could be a service to you.

So finally, as a reward for something, I told Sophia we could go to this place called Snip-Its "where a haircut is just fun". And a haricut likely costs a pretty penny too. Here we are a couple of years later, and guess what. We are still going to Snip Its.

Kids on the spectrum (depending on symptoms) frequently have trouble in a couple of places in particular - the dentist and the hairdresser. We managed to hit both of these troublesome places within a week. Hurray for me.

This past Christmas, with time being the biggest constraint, I decided to try Super Cuts for convenience's sake. Aunt Cindy joined us - and likely had no idea how agonizing this venture was for me. I won't go into too many details - here are a few recollections that made this event particularly memorable:

- I walked into the storefront and asked for the bravest hairdresser in the joint. A girl actually volunteered.
- At some point, other children there were making comments like: "Mommy - is she hurting him?"
- Her tip was as big as the cost of the cut itself.

So back to Snip Its we went. And even though it is considerably more expensive, it was worth every dime. Oh yeah - and for April being Autism Awareness Month they actually knocked off $5.'

The reason this placed worked better? I have a few ideas. First off, he's been there before and understand the expectations. Secondly, there are a lot of distractions, fun decorations, a train table, television screens playing animated movies. But a good chunk of it was having a professional who took the time to learn a bit about our kids, accepts them, and has come up with a few tricks to ease some of the issues. One trick was that she let Zach hold the sheers and feel the vibration. The other thing is that she is firm. All in all, I always appreciate these people who go out of their way for all the right reasons.

Isn't he cute?

Temple Grandin had a mother too you know

2011-04-01T13:24:00.008-04:00

Not really sure who my audience is but if you are involved with someone with autism, you likely know who Temple Grandin is. For those of you who are not in the know, Temple, or should I say Dr. Grandin, is probably one of autism's most famous celebrities. An HBO movie about her life won 7 Emmy Awards. She is a sought after speaker, has written several books, and has a career as an animal scientist. She made it into Time Magazine's annual list of the 100 most influential people in the world. Diagnosed fairly young back in the 1950s, prior to anyone having much knowledge about autism, Temple is one of those success stories that a lot of us parents cling to. Not only did she gain speech late, she went on to college, and even completed a PhD. She is far from the most "high functioning" (uughh I hate this terminology - perhaps a later post?) person with autism you have met - but she is probably one of the most accomplished.

But I am not here to talk about her. I read the books, saw movies, watched videos, read commentary. You can do the same. I had a picture of who she was, and one painted by herself inher own words. What I never knew was what helped to create this very admirable person? Who was this person's parents?

I had the opportunity last Friday to find out for myself. Eustacia Cutler - the announcement came out that she was coming to the area to speak, Temple's mom. "Temple is now 63 " years old herself - one of the other mothers who I mentioned the conference said to me. "Her mother has to be about 90!" went on my friend. As if a person of that age might not be able to impart some wisdom. *sigh*

I'd be lying if I said I hadn't thought about her age. And she knew it too - when I use the cliche sharp as a tac - I don't mean for an 84 year old. This woman had game. She knew we were all thinking about her age too - that's how I know how old she is - she said very early on in her presentation "let's just get this out of the way, I'm 84". This woman was articulate, bright, engaging. She did not paint a picture of sticky sweet scenarios. She told of the difficulties - then and even a few now. She did not complain, she just cited the hurdles. She still, regardless of all that she and her family achieved, stays on top of the most current research. She was incredibly real. She did not give false hope. But she did, in her own way, talk about the power of determination and persistence.

So many families I know whose children "lose their diagnosis" or become very high functioning turn their backs on the rest of the community. This is one group (the autism universe of those affected by ASD) that as happy you are to have them to help you through, a lot of people are more than happy to no longer need to be a part of. And that is a bit of a shame.

I am looking at purchasing Ms. Cutler's book to add into the ol' library. I do not expect it to give me answers, just add in some perspective. People are always looking for heroes to save them from lives woes, and I can include some families I have met on the ASD journey. They rely on the system; doctors, specialists, teachers, therapists to make the difference. Is it bad that I am trying to be my children's own hero? But like anyone who accomplishes anything knows - that needs to be with the help, and in this case with all those previously mentioned folks.

Take a look at Temple at last years TED:

Sophia's Spring Line

2011-04-01T13:18:00.005-04:00

Here is the preview of Sophia's spring line of clothing choices ... While you may think I am being a braggart by showing off my beautiful child, this is actually an example of creative parenting. Sophia has hypotonia (low muscle tone, note: not weak muscles) and fine motor skill issues making disrobing and dressing difficult for her. On top of that-she has these sensory issues, she is very sensitive to noise and sounds - going to a store with loudspeakers, screaming children, and the flicker of fluorescent lights puts her on overload mode. Getting her to try clothes on in this environment, let alone at home, has always been a challenge. So what do I do? I appeal to her vanity. :) We had music playing and I had the camera out snapping away. Mind you - we don't have cable so how she would know what a catwalk is - I just don't know! Seriously - it was just a really fun and goofy thing to do - and she loved the attention Zach, Steve and I gave her (that she deserved I might add.) She tried on every single piece of clothing! HURRAY! And now without further ado, I present to you Sophia's Spring Lineup....

Let's Go Ride a Bike

2011-03-31T07:25:00.001-04:00

Like a butterfly coming out of their chrysalis, here is my son, finding his wings.

Color His Word

2011-03-30T00:07:00.003-04:00

Zach cannot learn his color names. He is not color blind. He can match colors. He can sort colors. He has been doing this (matching and sorting colors) since he was 18 months.

If you were to ask Zach to touch the yellow crayon he would have no idea which one to touch. However, if you were to put out a series of cards in front of Zach that had color names and ask him to touch the yellow one, he could do it. We have been struggling to get Zach to learn his color names.

We have asked some experts for help on this. Much of the advice has not been helpful. Here is where we are now.

I Never Knew....

2011-03-27T10:53:00.005-04:00

I never knew that exhaustion and inebriation looked so much alike. But after reading my last post, I can confirm that indeed they do.

A death in the family is always a hard thing. When it is for a family that is out of town, it adds that degree of difficulty. When that family has been plagued with misfortune, the sadness is just that much more. Some deaths, while still sad, are not as much tragic as they are just filled with loss. Grandma S. dying at 97, sad. Grandma M. dying at 78, sad. Being killed by a drunken driver, tragic. A child's death, tragic. Death by a broken heart, also tragic. I feel that our family's death this week, although upon autopsy would reveal a specific condition, was fueled entirely by a broken heart. Not the type of broken heart in romance novels, mind you, but the type that comes from the inability to make sense of someone else that you love's own tragedy.

Probably best that we had the iPad presentation - it would be too easy to dwell in the unpleasantness of this situation for too long. The presentation snapped us back into the land of the living. Although totally unrelated, this instance may have even inspired me more to stay steady the course in our work to reach out to others who I believe are in need.

Indeed I know I did that. A father approached us at the end of the presentation. He told us of his multiply disabled 24 year old daughter. He was a tall professional looking man. He was pleasant, but there was this sadness in his eyes I cannot describe. He spoke briefly of the difficulties with raising their daughter, who at age 24, has yet to communicate a sentiment to them. I knew our iPad presentation was probably unable to offer him a way to meet their needs. I so wanted to be able to give him some answer, some recommendation. The best I could muster up was to encourage him to stay hopeful. He thanked us for our time, knowing how difficult it is when you have a special needs child yourself to take time to share. After 24 years this man is still attending sessions - looking for something that can help give them the connection they likely so long for.

I came home to our babysitter with a smile on her face, excited to share with us that Zach had successfully #2'ed on the potty totally self initiated during her stay. Sophie was already in bed. She told the sitter she was "exhausted", got dressed, washed up, and put herself to bed. She can be so mature!!! I went up stairs and kissed her goodnight. I came back downstairs. Zach took me by the hand and said "Momma come". I followed him up the stairs. He b-lined into my bedroom. I decided to not fight him, and dressed for bed. I got into bed with him, and lay my head on my pillow. He scooched himself over and lay his head on the same pillow staring into my eyes, and then smiled. Connection. Lots of them. Not the kind that others may require - no calling me "Mommy" no saying "I love you" hell no even saying "good night". I don't take that for granted, that ability to connect. I know plenty of people who can say everything they want, can express their feelings freely, and frequently do, usually in the form of disappointment or anger, but they haven't managed to connect with others. How blessed I am to have the ability to read my son and him me. Connection.

I kinda like who I am

2011-03-24T22:43:00.002-04:00

Phew - it's over. The first presentation for the iPad is now done. Betcha Uncle Ron doesn't realize what a beast he created when he bought that iPad for Zach almost a year ago. We presented to around 60 people tonight sponsored by two terrific agencies in the area on the benefits of the iPad for people with ASD. It was even opening night for our new website/blog that, although still a work in progress, is informative and looks great because of the skill and caring of a talented young man.

I am a terrible public speaker which may surprise some of you who know me or have spoken to me. One of the reasons I didn't pursue a music career is that you mention the word competition or recital around me and the dry heaves set in within seconds. And let me tell you, there were plenty of them growing up, so it wasn't because I didn't have the opportunity. One of the things I used to like was accompanying on the piano. The chorus was nice - but I really loved playing with the orchestra - just no concertos please. A few bars to myself was fine, but I was more than pleased to do harmony and background support. All in all, what I really wanted was to be the conductor. Still do.

I am not sure if it is the age or the events of my life or a combination of both, but I am in this place where I can do things I never thought I could before. I know I have public speaking issues, I know I am not the world's most imaginative presenter, but I know tonight's presentation was good in that I reached a few people, I shared, and I may have done something to help someone. I know that although I might not have been the most titillating, the content of the presentation was top notch. Perfect, nope. Exciting, likely not. I can work on that - or more importantly, find people to help me with that. A friend almost has me convinced to do Toast Masters....

I love what I am doing right now. I haven't seen Steve so energized in a very long time, either. When you are in the right place, doing what you are supposed to be doing, that is what happens. It's still a lot of hard work, but it doesn't totally drain you.

I like that I recognize my flaws, but don't beat myself up over them. I love that I have learned how to ask for help and more importantly that I have managed to find some terrific people who care and want to help. This place where I am at - well, I found that I am much more accepting of people (with their flaws and all!) than I ever was before. And there are tons of benefits to that.

I still do/say stupid things. And I am blessed with people in my life who love me anyhow. I try to make sure to put in more than I take out. I think I have accomplished that.

I also realize that I may be too involved in my son's life. We have spent quite a bit of time lately together - and he is really getting that potty training thing pretty well. Every day he refines it just a little more - he totally self initiates his toileting.

What was most impressive to me was his ride around the block on his bike with training wheels. The kid ate it up! Overall, Zach is doing fair right now, although I am not thrilled with his progress by any means.

Our program is still in a state of turmoil - and there is very little guidance with getting appropriate staff members.

Between taking training, doing training, and working on Zach's program - there has not been a lot of time to sit down and hit the keys for another entry into the blog - and I lost a bit of my own personal therapy.

He still has that smile though. And his general health is good. But that speech... uugghh.. that speech is still so limited. I think after being hit hard with his unfavorable eval from Yale where they flat out told us that he should be doing more than he is, I really was down, I took it personally - as if I, and I alone, were solely responsible for the lack of progress.

Talk about too much self-importance! It's taken years, and I am far from who I would like to be, but I can honestly say that I like who I am right now. I still have all those pesky faults.

And so does Zach. But he's got dimples. You can always get away with so much more with dimples!

We lost Aunt Ronnie this week. Lots of training including our own presentation this week. I am pretty much exhausted. Sorry about the negligence of the blog.

Looking forward to better weather.

Yup

2011-03-16T20:08:00.002-04:00

Within a 10 minute span: 1) He spelled the word funny on his iPad. 2) I found him with a serrated knife in his mouth. 3) He said to me "Want bless you", paused and then said "Achooooooo!", I said "God Bless You" and he laughed . 4) He managed to break the Tiffany lamp in my front hall. Wow.
Love him. Life is crazy.

On Being a Mom

2011-02-25T16:29:00.002-05:00

I, like many other women with children in this world, spend a majority of my time attempting to make order out of chaos. I organize spices, fold towels, stack laundry, sort and colorize closets, review homework assignments, verify and pay bills, (talk about chaos, try understanding your phone bill sometimes....). It all can leave your head spinning.

In the typical world, you regroup from time to time, look around the house, dust bunnies still in the corners, and you notice that as unordered and imperfect as life may be, things are going in the right direction, the children are healthy and are making strides toward those goals you know they will achieve one day; high school graduation, a job, maybe marriage and children of their own; the whole cycle set to repeat.

Add a disability and this chaos goes beyond this model for there is one thought that I revisit over and over again: "what is going to happen when I am gone". It is the clincher in all this.

I will be taking a workshop on special needs trusts. Sounds like a good time, right? I am hoping it will give me some peace of mind in what I need to do to make sure that Zach will be taken care of after we are gone.

Steve and I have not updated our wills. We need to. I guess I have not wanted to consider the more than difficult decisions that we need to make regarding Zach's care when we leave. Who will take him? Who will want to? Who will be able to handle this and not resent us? Not quite the straight line approximation that most others have to deal with.

Now I am completely in love with my son, and cannot imagine anyone not thinking he is anything but the fantastic kid he is. However, when I am cleaning up poop from the side of the toilet because Zach has gotten confused once again about: standing is for peeing, and we need to sit to poop, well, these are the moments that make my hands go clammy, and not from the fact that I am cleaning up fecal matter. I view, as I do for all those in my life that I love, a privilege to be able to take care of things for those who need help. Blood, bedpans, feeding tubes, sponge baths, from babies to those near death, I have done it all.

But I know that most people do not share my "no big deal" attitude and understanding at taking care of business. It's not pleasant for me either. But it is what needs to be done and I can get through it without much stress. I often wonder if I should have been a nurse? It's funny because I realized that this is one of the gifts in life I have been given. Some people get abilities that land them Nobel or Pullitzer prizes. Me? Yeah, I get personal sanitation service insensitivity. Hurray. :)

Most moms are pretty good with this stuff. There was a time when dads weren't expected to change diapers. I guess most moms don't have to worry about this past the age of 4 though. I have come across parents who have to deal with this when the child is 14. Not the same as an 18 month old, I assure you. These people are amazing. I won't lie - I am really hoping I am not going to be in that group.

I love my kids. I worry about them. I try to take care of them. And I feel like a complete failure just about everyday with Zach. I am so grateful that he smiles and hugs me so often. He is such a forgiving soul. In the words of a friend: " He is so stinkin' cute." and he is. I never want that smile to go away.

So in trying to upturn every stone and make sure I am doing all that can be done, I am planning on making a secure future for him with a special needs trust. The problem is that it's a double edged sword; I feel like I am giving up on him by doing this preparation. Am I not keeping my expectations high enough that he will one day be able to take care of himself? Because of my bad attitude, am I going to create a situation where he will not flourish and become everything he could be?

There's another double edged sword: do I work him so that he can become all he can be? Have tons of services and therapy? Will this cause him not to learn on his own? Or worse: Will he think I don't love him as he is? Will that to cause him to lose that smile?

There is no certain path. There is so much potential for damage. There is no road less taken. There is only the circuitous path you forge yourself through a densely grown field of tall grass where you cannot see your feet. There are pot holes, and hills, stones, and snakes. And I cannot afford the good hiking boots. But I will carry him on my back, nonetheless, so he doesn't have to deal as much directly with the unknown that lay beneath.

It is just so much more complicated with special needs. I don't fear death. I don't even fear pain. I fear what will happen to my boy. If I could, I would protect him from all harm and sadness for his entire life. I would teach him all he needs to know. I would feed him, clothe him, shelter him, for his lifetime. I would make sure that smile never fades. I have a feeling that his innocence will never leave him, even if he were to become totally self sufficient. That is why his smile is so special, it is because he is unaware of the pain in the world, and the fact that there will are those in the world who wish to afflict him with it.

Yeah - this is not the motherhood I signed up for. But it is where we are. There is no amount of organization or preparation for this life. It's just one step at a time, some of them smaller than others, and hopefully, more of them forward than backwards.

The Hill Set Before Us

2011-02-17T15:35:00.006-05:00

It happened. This week. One thing after the next. Brutal.

Things had been going fine. Then the news started to roll in.
"I think I am allergic to something in your house. I am going to have to leave the team."
"I am having issues on my other job and will be leaving the area."
"I have taken a new position with another company."
"I have been asked to take a teaching position and have accepted."

And just like that, Zach's team has vanished. Well, not totally, not yet, but 4 of the 5 members are planning on leaving if they haven't already left yet. And 2 others had already left prior. (One on medical leave)

Only one word comes to mind right now: lost. A few more perhaps. Abandoned. Alone. Afraid.

On top of our abandoned ship this week, a friend and coworker of Steve's passed this week from cancer. He left two school aged children and a wife. Solemn. Grief. I decided not to tell Steve what was going on for a few days since he was already burdened.

In consolation to this news, some people have told me I am strong, resourceful, smart. I suppose I could be. I had given up thinking I was ever going to amount to much, after feeling so many have tried to make me feel like I am nothing in spite of the gifts I have been given. I have always wished to be something more in my life, and I sort of gave up on that. However, when I had children I swore no matter what it takes, I was going to do right by my children; I will make a difference in their lives if I cannot make one for anyone else. If I happen to help a few other people along the way, then I have lived my life according to my conscience and what truly brings me joy.

So somehow I have to drum up the courage to call, email, and whatever form of contact I have in my power those who might be able to help. I am trying to work with him myself.

Zach is doing OK - eye contact is greatly diminished, his verbal utterances are down too, he has a new stim - he is sort of waving his one hand while fanning his fingers, and nighttime has been tough with bedtime and some night wakings. But - he has managed to poop on the potty several times within the last few weeks - some of it even self initiated. I will take it, and use the positive energy I derive from it to do what it takes to get him the services he needs.

Sophia has strep again. Spent the day playing Chutes and Ladders, and CandyLand. Was supposed to go out with a bunch of fellow mothers and drink red wine and let loose. Didn't happen. Stayed home and filled out reimbursement checks to our insurance company instead.

I feel bad because the advocacy work I am doing always takes a hit when things like this happen. We have a fundraiser planned for next weekend, I have been working with a few families to help them with services, one family freshly diagnosed in December, and Steve and I have been working on a presentation for using the iPad with children with autism for a local agency.

Steve made it into the Who's Who of Americans - I found out this week - of course, he wasn't going to tell anyone because that is who he is. So proud of him. I'll tell everyone instead.

And that is life here in Camillus. Looking up a snowy hill to climb.

Further Comments on Grief

2011-02-12T12:19:00.001-05:00

For anyone who has lost anyone significant to them, they know the stages of grief and how they went through them. I ponder whether there are those who think I am likely melodramatic when I discuss that Zach's autism had us go through this process. All I can say is that we certainly did, and it was very real and intense. Having lost people I love, I know that Zach's diagnosis was as intense as those experiences, perhaps not the same as actually losing a child, but painful to a level of pain I had not experienced before.

The problem with this acceptance/grief/autism thing is this: what is too much to hope for? when do you give up trying? You see, unlike death, there is no finality to this, it is endless waves; there is no closure.

Interacting with people these past few years I have come to be aware of the fact that there is another way to classify people: there is gender, race, nationality, religion - but the one I realized that I am more aware of currently is those who have experienced grief and those who have not. When someone doesn't connect with me I realize they have likely experienced little in the way of grief in their life, it has nothing to do with if they have a child on the spectrum or not.

A friend who lost a child was listening to the radio when he heard about a fiction book about a teenager with autism, Unlocked. He sent me a note in facebook about the book. It was a simple gesture from someone who probably realizes more than anyone that reaching out to people can mean a lot when you are in grief; reaching out in genuine and sincere way, not a generic "let me know what I can do to help" that is vague and rarely acted upon. These types of gestures are not genuine and I have offered them in my life, although I have learned to no longer do this.

Fact (at least for me): You can enjoy life, love and appreciate your children, have friends, a nice home and still be struggling in life, especially because of disability and all it ensues. Grief ebbs and weaves. The engineer in me thinks of a sine curve with various forcing functions and filters attenuating the depths and heights of each "wave", all of it varying over time; some of it with time as its only dependent variable. Regarding autism, I have found that grief isn't a one time thing. It comes in waves.

I don't see any end in sight for these struggles. You see, just when you start seeing progression and you begin to get hopeful, something will smack you with reality, say seeing an NT child where you get to reference what normal development should be. Or perhaps there is progress in one area and regression in another. Regression - the terribly nasty word feared by so many of us parents with children on the spectrum, and with good reason. Imagine having a child develop symptoms at age 4 - they were developing typically and boom - eye contact or language is gone.

And then there is behavior - when a child develops new skills, sometimes there is new behavior because they lack the emotional maturity to handle the new skill and you realize you have the competency of a 4 year old with the maturity of a 2 year old. uugghhh For typical children, these things usually coincide to some degree.

When you are met with the reality of the disability, whether it be through the limitations of understanding in the throes of accomplishments, or the realization that this is not a temporary thing, or the cruel ways of some people in this world, a wave a grief will come and slap you down.

I recall when I first realized Zach had autism - prior to diagnosis mind you. I woke up the next morning thinking I was just having a nightmare. Then it hit me, it wasn't a nightmare, it was my life; something was "wrong" with my boy. I know that it is fairly common though after reading and discussing with other parents. I don't experience that anymore. But I do get these moments, you see I live in the land of hope - I feel that he will be conversational one day, that he will do OK in school, that he will have friends, that we will laugh together as we share our lives. then something happens and I think that this might never be, that I am deluding myself, and it cuts like a knife. Grief strikes again.

I have never been one to be described as much more than a skeptic. But I know I would never forgive myself, nor could I be happy in this life, if I did not continue on to try reach him, to try things that have no guarantees. So I have to run contrary to my own self. You see if there is one thing I do know, if you want to touch the sky, you have to reach for the stars.

Quiet on the blog, certainly not at home

2011-02-07T08:15:00.005-05:00

Please do not interpret my silence to mean that things are not going well with Zach. Indeed there are a lot of joys in our house at this time. Depression is sucking the life out of the author right now, and her husband is trying to pick up the slack as best he can with the enormous pressures he already has on him. This has been our routine for several years now, I most likely suffer from SAD. At this point, I am at least somewhat functional, able to meet the minimum obligations of the day. I have tried many therapies/Rx and they help, but having a bit more stress than usual, it still undermines the best interventions. But there is no time to concentrate on my woes right now. With the pressures we have, I know my limitations, and I do get some energy and motivation from knowing how much my kids count on me. I look forward to those days when the sun will peak out a little more regularly, and my energy level will be regained, and maybe a few more brain cells will function too.

First in good news: Zach has begun to ride a bike with training wheels which is awesome to watch. All the hard work and $ of our basement was worth every penny when we got to see him accomplish learning to ride the bike and within a few days, showing great pleasure in doing so. He will even tolerate the helmet because the desire to ride his bike is so high.

As said before, the basement is nearing completion - there is mostly trim work (casements/mouldings) to be completed. I will take some pictures at some point for everyone to see. On top of the riding the bike, Zach and Sophie have procured some nifty roller skates and are attempting to learn. Sophie struggles with this - and of course I am of little help trying to teach her how to do it. Right now, we have made a commitment to 5 laps around the basement a day, hoping that it eventually clicks within her own mind. As for Zach - his training roller skates are fun and he does really well with them.

I recently had the opportunity to attend a presentation on ABA and it was most useful. The presenter was animated and reviewed a lot of information I knew - however, he allowed for questions and this is where it paid off. During one presentation, I asked a few questions with Zach in mind, and lo and behold realized that Steve and I had been inadvertently sabotaging part of Zach's program.

The old me would have dwelt on this forever, saying how stupid I was to not have realized, but the most recent version of me (Leanne v4.11) took the information and immediately acted upon it. I changed the way we respond to Zach and it worked. He is being a lot more independent in using language now - at least for what they call "manding" which is verbal behavior's way of saying "requesting".

There has been even a little more flow to his utterances - what appears to be a little more back and forth sequencing in language. Again - he is still so far behind that it is hard to tell. However, Zach has his own way of learning, and rather than be frightened of his looming delay, I have more confidence that one day it will be there, with persistence we can help that brain of his to formalize and mature these skills. To see Zach and work with him without any knowledge of what he is like, you would think that he is likely incapable, and a slow learner. For certain, when you first approach Zach with trying to learn a new skill, sometimes it can be nothing short of painful. And then comes that magical day, and voila, it clicks, and his slow progression turns to near mastery. It's crazy how this happens. It's like once he does something correctly once, no matter how long it takes him to get there, he just gets it from there on in. Of course, he needs to understand its place - why he is doing it and what it will do for him. Motivation is tricky for kids with ASD.

That brings us to big new #2. Dear little Zach is definitely reading. He has around 12 sight words down right now. (At least this is what we have tested so far.) This he did mostly on his own of course. The odd thing is, he doesn't necessarily know what he is reading. So - Zach can sort and match his colors. But if I ask him to touch blue an present him with a blue swatch and a red swatch - he will guess. Zach is having difficulty associating the word with the color. Yet, if put the words "red", "green", and "blue" down in front of him, and ask him to touch blue, he will touch blue. I believe he also knows one, two, three. We are in the process of targeting how to get him to match the color blue to the word blue. Totally reverse of an NT kid of course, and from what the other moms tell me, not so different than other kids on the spectrum. This stuff blows my mind.

There is so much work to this program. I cannot even begin to tell you how overwhelmed with trying to keep up with all this I am. There is so much to do, and I feel like I am walking through mud trying to accomplish it. Stinking Syracuse winter.

13 Years Ago

2011-01-13T11:36:00.010-05:00

There was a beautiful young lady, who would be 26 if she was still around. She only got to live half this time - she made it to 13. She was my boyfriend's niece and she was sweet with pigtails. She had a sister who was sweet with footballs. They loved each other so much despite being so different. And then one day, feeding their horse, there was snow and a car, and she was gone.

I dealt with this about as poorly as I could. I was overwhelmed by the situation, caught up in my own self importance and issues, fearful of doing the wrong thing, not sure quite what to feel or how to act. In other words, I blew it monumentally.

At this point in my life, I have lost so many people that I cared about - some to death and some to indiscretion. To those I lost to indiscretion, I suppose there is a chance to say "I'm sorry"; to those to death, there just is this forever hole.

When Zach was conceived there was joy, when he was born there was joy, when he was baptized, there was joy, when he took his first step, more joy. There was so much hope and anticipation of a positive future. Now I realize that even though we have been running full blast, I am likely in a place that I didn't realize.

My last post led me to a website where I read several posts by fathers who lost children. I shouldn't have been able to relate, but I did. And that is when it struck me - I have been in my own state of grief for quite awhile now.

When I realized that Zach was on the spectrum, before his official diagnosis, there was an unimaginable pain. Who I thought Zach was changed - and in some way, the child I thought I had was gone.

I am embarrassed that I have been dwelling in this state for so long. I am ashamed that unlike some people, my child is still alive yet I feel like I have lost him. Is it vanity? Is it pride?

I realize that every ounce of energy I have is being given to my children, and let's be honest, a bigger chunk to Zachary over Sophia. There isn't much left over. And I will be honest that I am really hoping that all the 40 hours of therapy/working with him ourselves constantly/biomedical intervention are going to make a difference and bring him back to us. It all sounds so desperate. I am sure some think I need to be in a better place of acceptance to be in reality. Believe me, I would just accept his diagnosis and quit the insanity- if - I didn't see such a change in him these past few months.

Today, him and I giggled at one another while we made farting noises back and forth. There was eye contact. He was engaged. It was silly and typical of a 4 year old boy. The shared laughing was out of this world. Later, he sat in my lap and we played on my laptop - he found every letter in the alphabet on the keyboard as I recited. I said 'M' he entered 'X' and then laughed. A joke!

We have a ways to go. He is by no means what I imagined he would be when I first found out I was having a boy at that sonogram 5 years ago. But I feel like I am getting him back again. My sense of loss is lessening.

Yesterday, a junior at our local high school passed after a fight with cancer. Last week, during his PT session, Zach roller-skated independently! I think perspective has finally come into my life - not out of a comparison of my life to others who experienced the ultimate in loss. But because I have witnessed and shared joy with my son, which in the end is what every parent really wants from their children.

So I am thinking of Erica today. Thinking of her family. Her beautiful grown sister who has done such great things with her life. Grateful for my family. I have certainly matured these past few years. Wish I could have had the perspective I have now years ago when I could have offered more compassion to others who really needed it. That's one thing grief is good for - I am changed forever. My heart will always look at another who is in pain, and I won't run away.

Breaking the Fog - Please Help

2011-01-11T12:08:00.002-05:00

Overwhelmed with life right now. Baby steps all the way. There are good things happening. Not feeling motivated to get it all down - too much other stuff happening.

In an effort to break me out of my funk - I am hoping that helping another might actually help me get out of this gray, dreary, foggy place.

As some of you may know, a friend and coworker lost his 5 year old son due to complications of H1N1 last year. Having the fortune to hear some of his concerns and issues in his bereavement, I always felt helpless in providing him any true comfort. If this is one thing I could do to help him, I will. I cannot imagine, even with our difficulties with disability, ever having to face the day without my children. I cherish them more now than ever after considering that the loss of a child is not as rare an occurrence as I once imagined.

Help modify the Family Medical Leave Act of 1993 to include the death of a child as an additional reason to qualify for the benefits provided by this law. Help a bereaved parent to be able to take a 12 week leave of absence without the worry of losing their job.

...Let’s make a difference.

Please read the link below on another parent's story and how you can help.

http://grievingdads.wordpress.com/2011/01/09/we-can-do-this/

CRASH!!!!!!!!!!!

2010-12-17T12:00:00.007-05:00

Stop the world, I want to get off. The rate at which it is spinning is beyond what I can keep up with.

I was caught, rather off guard, when yesterday, with the normal craziness ensuing, I crashed. Tears running with almost no impetus, feeling despair, my blues and seasonal depression had turned categorically into something different. I was most confused by the timing of this event - nothing specifically had happened. In fact, it was our normal lunacy which I will go into below. Steve finally summed it up best I think when he responded with my what is happening remark with a - "You are spent."

I was recently asked by someone if I worked full time. I had no patience with this question, and said "I work more than full time." I knew what they meant, but I am really tired of SAHM (stay at home mothers) feeling the implication of their work not being significant on the mere difference being that we don't get a W-2 for it come time January.

Amongst the craziness now: I finished taking a class on tax preparation and found out that the job pays $8.50/hour. Seriously??? I knew I wasn't going to be making the money of my old electrical engineering days, especially for just working part time seasonally, but I found this a little too little.

The holidays are always a pressure cooker. So many expectations, so much work to try and meet those. Getting out shopping is one of the most difficult things for me. I have to be present for the therapists, and then there are those pesky after school activities, doctors appointments, and other commitments.

Can't I catch a break? Well, no. Our respite night was canceled due to weather and I was so-o-o looking forward to doing the shopping then. Did mention the 4 feet of snow we got in a week?

Speaking of things canceling/leaving/not happening: The medicaid service coordinator called - she is leaving us. Yes - Zach has supplemental insurance of Medicaid. There are major layoffs at the state level for the DSO. We have yet to get anything more than 3 copays paid for a grand total of $30 by the plan. Hee haw. Need I do the math to discuss our personal costs? Doesn't seem like it matters anymore, or that it ever did for that matter.

My mother - well she is not feeling as well as she has been. A trip to the neurosurgeon showed that the tumor on her spine (noncancerous meningioma) has not changed - so that is likely not the cause of her discomfort. Two cysts on her wrists will be attended to next week - along with the what the oncologist believes to be skin cancer on her legs. When she told me this - I knew that I was the only one she had told. A question to my sister and I realized I was correct in my assumption.

Many events to take the kids to - Lights on the Lake, Santa party for at a bounce house, holiday get togethers. There is this sort of pressure to get Zach out of the house and socialized. Therapy is going fairly well, but Zach has begun peeing all over the house. Is it behavior? Is there something medically going on?

Sophie - they have begun some interventions in the classroom - have I gotten in to see them? No. Flushed with guilt. However, we have been more attentive at home with drills and working on reading skills.

Keeping Zach's program rolling is fairly time consuming - lots of paperwork and administrivia to manage his program. 7 bodies walking in and out of the house on a daily basis.

Sleep - well what can I tell you. It could be worse, I suppose, but it also could be better. I have a call in to the GI doctor to make sure they are OK with me giving melatonin to him. I think I am ready to try it. Some say it works wonders....

I miss my Dad. This is the time of year when he had his heart attack. We were all out at a bar in December together as family. I remember every minute of it. I would give anything to see him. Especially with my children.

A recent event for parents wasn't even a break - as we entered a comedy club to take in the show, I see the guy who sexually assaulted me as a teenager. I have to sit there through the event and pretend to enjoy myself. We drove a friend, another mother, to the event. I just wanted to hightail it out of there - and she wanted to chit chat with the other parents after the show. I didn't even tell Steve until we were on our way home. As much as it was a shock to see him, I realized how it paled in comparison to some of the stuff we have been going through with our children. However, I also realized that, for this woman, some things will always stick with me.

The Christmas party for Steve's company was another awkward occasion intended to be fun - after all they did lay me off. But I actually had a lot of friends to talk to and I am so happy that things have worked out they way they have.

Now amidst all the negative, Sophia, Babcia Morphet and I had a fantastic trip to the Big Apple where we saw the Rockettes and ate dinner at the American Girl Doll store. It was phenomenal.

The basement, while going somewhat slower now, is nearing completion.

My scare with a heart murmur/mitral valve prolapse has been put to rest.

This is our normal hectic life though. Why the crash? I have no idea.

Zach had a great day of therapy today. The tears aren't flowing as readily today. Is it based on what he is up to? I realize, only a little.

No time for a breakdown at the Morphet house. In the words of Dory from the moving "Finding Nemo": "Just keep swimming." I have Christmas shopping to do!

Zach had a no mistake day so far today in the potty training department. He also made some progress in learning how to play Candy Land. His chewing gum is going great! Hilary said he mastered some more of his programs - I haven't been able to check in awhile to see what he is formally working on. Suppose I should check his program book at some point over the weekend. No breakdown today. No tears at the thought of all that is going on.

Why yesterday? I don't know.

Looking back at all that I have just written, I am amazed how much hurt and disappointment I have had to face in my life. I am even proud of how I have handled it, or at least how I persevered through it.

When I think about it, I don't cry that often, especially compared to some of my friends. Maybe that's what happened, I stored it all up for one day. CRASH! Even the word mustard would evoke tears.

Gum

2010-12-11T15:00:00.004-05:00

Some posts are just going to be simpler than others. But something really surprising happened this afternoon.

Zach has been watching Sophie and I chew gum, so we gave him a piece yesterday, to which after 5 minutes of chewing, he swallowed. I told him "No swallowing! Spit! Spit it out!" I gave him another piece and only allowed him to chew it for 3 minutes, closely monitoring him, and Steve prompted him to spit it out and he did.

Cut to today. He requested a piece of gum. I gave him a piece and set the timer to ensure I could prompt. He walked over to Steve and on his own spit it into Steve's hand. He then requested another piece. I let him chew it for about 10 minutes, and then I asked him: "All done?" which he responded with a : "All done" and he spit the gum out again. My kid can chew gum! Cool!!!

So this probably seems like not big deal to some of you - but it is really cool I assure you. He got the concept while having limited language skills.

Now this brings up a concept that I might not have touched on before. When Zach attains a skill like this, I am sort of impressed with him - I know he is a capable kid (I have to admit something pretty pompous) I am in fact impressed with Steve and myself for figuring out a way to teach him. I am like "Oh my - we did that!? " You see if we were to translate Zach's disorder into something else, that might make you understand our situation better, so let me try.

Suppose Zach was blind - and I need to teach him to read. Now here is the kicker: Braille has not been invented yet. That is exactly the point we are at with Zach - we do not know quite yet what will work to teach him things, yet we know he is teachable- there are some best practices but no empirically proofed standards in this stuff, with the exception of ABA which really offers you a model of how to see if something is effective more than to provide the means to be effective. We don't want to just "try things" because that can take time and if it doesn't work in the end, then that is wasted time. We try to be as judicious about our approaches to teaching him as we are to everything else. Sometimes there is an element of flying by the seat of your pants in this stuff - we are, after all, in the wild wild west. That's what happens when science hasn't come to any decisions. (Sometimes I feel as though science has totally failed us... but that is another topic.)

But for today, my Zach chewed gum appropriately. Pretty cool don't you think?

Now that whole potty thing..... in the words of Charlie Brown "UUUUGGGGGGHHHHHHHHH!"

There's something going on up there

2010-12-05T12:02:00.004-05:00

Had a few friends over for a playdate Saturday. Zach, being the social animal he is, promptly took an hour nap. OK. So little K (born three weeks before Zach) hung out inside with sleeping Zach and Steve while us girls headed out into the freshly fallen snow to make snow angels. OK - so I didn't get down into the snow myself, but I watched and cheered everybody else on, so that should count for something.

We eventually came in from the cold and I made hot chocolate. Zach had woken up at this point, and basically spent the afternoon watching movies with K while the girls ran around the house doing various things.

It was time for my friend to leave with her children. They were putting boots, coats, hats and mittens on and Zach began to cry, a wimpery "I'm sad" sort of cry. After asking him what was wrong - offering him food and drink and toys, I realized he was very sad that they were going. I tried to pacify him and told him that they would come back and that maybe we would go to their house sometime. I don't know if he understood what I was saying, but I cuddled with him and continued to console him and eventually he got over it.

A week ago, while watching a Thomas the Train video about Christmas, he began to cry. He just happened to cry during a very melancholy song in the video. I thought to myself, the song is sort of sad sounding - could he be responding to that? I said it aloud and Steve said "Yep - he cried during this song yesterday too!"

Steve snapped at him the other day for making a mess, and off he went to cry for a minute.

I wish I knew what he was thinking/feeling. His often aloof appearance is a big coverup to a lot more going on. I often don't consider enough that he needs to be treated like the thinking and feeling person he is. But he does. He understands far more of this world than I realize.

Being a person of science (or with some science background) I am constantly looking at the action/reaction in things. The problem is the latency factor with some of this stuff - you may not see that reaction for days after. And sometimes it is immediate. His receptive language is much better than expressive.

I can best summarize these experiences best by saying that there is something going on up in that ol' head of his beyond what he can express. Will he be able to let me know one day?

Where we are right now: Acceptance???

2010-12-02T18:36:00.004-05:00

I guess sometimes I feel like we are going no where fast. And all it takes is one reference point to let me know how wrong I am. We had Zach's 6 month appointment at the local developmental pediatrician this week. We brought along a therapist to discuss Zach and to meet our doctor.

Zach was a little antsy, but all in all, exhibited good behavior. One thing plagued Zach though. Although his appointment was at 9:30 in the morning, he had already had a 1/2 hour of OT and an hour of speech therapy that day. Due to our hectic morning, the boy had only a quick breakfast, and now he was HUNGRY. So he went rifling through the tote bag I bring along whenever I have the kids, looking for good eats while the nurses asked their routine questions. At some point, he ate every pretzel in the bag plus a brownie. The little one with the big appetite was still hungry. And then the doctor came in. I knew that Zach's concentration was on food and he was going to be fussy unless I managed to get something else to occupy his mouth. I pilfered my purse to find an organic lollipop. I did this all while attempting to answer the good doctor's questions.

We were talking about Zach and his program change from a preschool to a home program. At our last visit with Dr P, we had discussed looking into options where Zach would have preschool 1/2 day and itinerant services or somehow finding him a one-on-one aide for his program. As most of you know I just didn't seem to be able to make either of those options happen. As I discussed how we were doing pretty well with his home program, Zach continued to hound me, and I continued to unwrap the lollipop.

As I held the lollipop just out of reach, Zach made eye contact with me; he realized I was going to make him request it, and not just give it to him, even in the midst of being busy talking to the doctor. He said "lollipop" which I didn't accept, and then I continued to hold it and he finally said: "I want lollipop." and then I quickly gave it to him. I brought my attention back to the doctor who had a look of surprise.

I had no idea why he looked surprised. And he said to me "Did Zach just say a complete sentence?" and I said "yes". He then replied: "Well, I would say that it is quite a change from our last visit!" I hadn't thought about it, but it certainly is. Now mind you, this is something we work really hard on with him, and I guess knowing how much work went into this, I sort of don't find the enthusiasm that others might in hearing him utter this. I also know that he does not freely speak and that he only has a few sentences at this point in his repetoirse, all that have been discretely taught to him. He has surprised us with a few spontaneous sentences, but they are rare and not consistent.

Sometimes I let my expectations get in the way of the joys of the progress we have accomplished. This tends to diminish my hope, when it really should be a catalyst to it. I am so glad the doctor made me aware of this.

Tonight, I "caught" Zach with a book in his lap - a Thomas the Train book of course (what else would he choose for himself???) and he sat there saying "Thomas" "Percy" while pointing to them and spelling out some of the words aloud on the page. A myriad of thoughts went through my head, two images struck me the most: I thought about the expression on the doctor's face and recalled the fear we felt 2 years ago. I realized there is joy to be had in what he has accomplished and the potential that may one day be.

I think about what I want for Sophia. It is certainly different than what I would have wanted for her before we went through all this special needs stuff. I truly want Sophia to be happy. I also define achieving this happiness a lot differently. I am much less practical about it, yet more down to the basics. Practical worries? College tuition, career choices, number of friends, romantic interests. The things I strive for now? People to love and who will love in return, satisfaction and acceptance of who you are, gratefulness for being alive, a work ethic, food on the plate, a house over the head, clothes on the back and having things you enjoy in your life.

Sometimes I wonder if I have reached this place called acceptance I hear about. I am still hoping for everything, but I also know that my son's smile and his love of life have brought to me a peace that I never thought I would have. Is that acceptance of Zach's disability? Well, I think he will always have autism. But I will always try and treat it too. I will never do nothing about it, that just isn't part of my personality. But I think I do understand that those basic things that I referenced before really are what are important in this life. Maybe that is what acceptance really is; realizing what is important in this life.

What Get's Me Through: Part 4 Progress; The Sweet Mysteries of Life

2010-11-21T15:30:00.010-05:00

Progress- yes - it is one of the pillars of survival for those of us with kids with special needs. Zach has made progress - in the strangest of ways. It is never quite what we wanted, but appreciated nonetheless.

Sometimes you just cannot see the forest from the trees. I realize after reading and talking with so many other parents that it is imperative to write down where Zach is at from time to time. Thus the blog is helpful in recollecting from how far he has come. I will not lie to you, I want to write to you how he is talking above all else. As much as my heart desires this, I have learned to prioritize other skills as being just as important.

Zach still does not have much in the way of functional language. I have noticed a few of the therapists referring to him as non-verbal, which I realize after being in this as long as I have, is really not accurate. He has no real functional language - he is not conversational nor has he yet to recognize the power of words; the critical reason for verbal communication.

Another critical skill, potty training, is touch and go. Zach is pretty much schedule trained for #1, as I have written before. But #2 still has yet to be conquered. He, if wearing appropriate attire, will pull down his pants and do his business independently and dress himself afterward. He will flush, and if prompted, will wash and dry his hands appropriately. This, along with his aim, has made him heads above half the people I used to work with.

As for motor skills, he is having some success. He is doing better at alternating his feet when going up and down the stairs. He is cutting with scissors fairly well. His coloring needs to be worked on, but he is enjoying doing crafts. He even surprised me with a recent independent track on his scooter. It was only for 7 feet - but I was excited about this nonetheless.

He did something that surprised me last week, while at Babcia Morphet's house: he sat down to play Candyland with Sophie and me. It was crazy how he knew how to pick the card from the pile, look at it, and discard. He had no idea, however, which piece was his and what to do with it. This is a goal I am making for him - for him to know how to play this game with just some minor prompts. It was really cool to see that he was interested in this.

And there are the things I do not understand. Like how he went over to the neighbors house and rang the doorbell for Lord only knows what reason. I was embarrassed as my neighbor came to the door after just stepping out of the shower and all I could say is "I'm not sure why, but Zach wanted to stop by and say 'Hi!' "Sophia surmises that he wanted to swim in their pool as he walked over to our other neighbors house immediately afterward and was looking longingly at their now-closed-for-the-season pool.

Then there is ice cream. Somehow, he managed to get into our freezer and get a pint of his ice cream out and go to town. I am still perplexed how he could reach it - there were no obvious signs of climbing like a chair pulled over to the refrigerator. Motivation can make many unlikely things happen.

And then the other day, out of the blue, we were standing in the kitchen when he grabbed my hand and said "Come". I followed him as he pulled me into the family room where we arrived at a bookcase. He then said "pick me up" and I did as he gestured for something on one of the bookshelves. I looked to see a toy which I grabbed and he responded with a "nnn nnn nnnn". I put the toy back and he reached towards the back of the shelf and grabbed for himself the tin where Buddy's ashes are stored. I have no idea how he knew where this was nor did I have a clue as to why he would be interested in it at first. I showed it to him and told him that it was Buddy's ashes. I put it back on the shelf, and he gestured that he wanted it back. I gave it to him, and he cradled it in his arms. He did this twice more after I told Steve he had to see what was up.

OK - I don't really care if you think I am crazy right now: I know what Zach was telling me, and so did Steve. I said to Steve so what do you think about that? And he responded with a "We are not getting another dog until Zach learns to poop on the potty. We are not having more than one thing poop in this house at a time."

Regression is a hated word in the autism world. Children acquire skills, and are also known to lose those same skills. Hopefully for every few steps forward there is only one small step back. I would never want to go through that initial horrifying regression of Zach's where he lost his point, his eye contact, his words ever again.

I recently met a family whose children were Zach's age when they regressed into autism. I cannot imagine having your hopes dashed so late into the development stage. It was heartbreaking for me to hear about for sure. However, they are moving forward. Mom and Dad are very involved and always seem to have a smile on their faces. You just don't hear them complain. They are very inspiring to me.

So, time marches on and hopefully Zach's skills will too. I am hoping for a Christmas where he gets the concept of the holiday a little more. And maybe the mystery of Zach might be a little more revealed. Holiday miracles anyone?

Christmas Wishlist

2010-11-18T11:29:00.004-05:00

Hi all. So Thanksgiving hasn't even rolled around and the Christmas goods have already been on the store shelves for like a month. This marketing ploy has made it's way into the consciousness of some of our friends and family as I have received a few calls about Christmas presents for the kids, Zach in particular.

At our Team Meeting last week, I asked the therapists for some ideas - and boy did I get some. So I have created a wishlist for Zachary on amazon.com of the items the therapists mentioned. Please feel free to link through to the wishlist. On top of the list from therapists were a scooter, some beanbags, and the Puppy Pal Bingo game. But anything would be great!

I by no means am asking for any of my readers to purchase these things for us - this is only some recommendations for those who were planning on getting Zachary a Christmas gift and wanted to make it something purposeful for his therapy.

It might also serve as a list for other parents to peruse for the special needs kids in coming up with some ideas.

Team Meeting

2010-11-15T17:12:00.006-05:00

I don't know what to say. I am overwhelmed. And for once it is a "good" overwhelming.

We just had Zach's team here at the house for an hour and a half. All seven of them. And they all seemed interested, too. It was one of the best and most productive meetings I have been to in such a long time - even (especially???) compared to my old work days.

I looked around the table at some point, and, well, I just wanted to ball my eyes out - for joy that is! I know, I am so corny/emotional/sensitive. It's just I have had a hard time with faith lately; faith in a supreme being and faith in people. I realized that this particular team has restored my faith in people - and that helps me to believe that the big guy upstairs might be looking out for us.

One thing I have learned from all of this - when someone else cares for your child, which might be a job, but one that a lot of people don't want to do, you find yourself calling them family and not therapists. I mean, seriously, these people and their efforts are just another form of love, pay or not. And when someone loves your kid, I mean, uughh, there are no words. There is no bigger way of endearing themselves to me than to be nice to my kid.

I feel like we have added so many people to our lives in this capacity - people who I will never be able to find fault with because, quite simply, they did something special for Zach. Many of you know who you are.

Hopefully, soon, I will be able to post pictures of the basement therapy area - another act of love. It's so great to have joy in our house right now.

If you are a therapist and happen to have stumbled upon my blog, please realize that there are a lot of parents out there that appreciate what you do. And there might be some who don't. But what you do is so-o-o important regardless of parental attitude. If you are really trying to do what is best for that child, than I guarantee you are making a difference in that child's life. And if some parent isn't showing you the gratitude - please let me thank you for the child who might not have their own voice to do so right now.

Go TEAM ZACH!!!!!!!

Rest

2010-11-11T14:48:00.001-05:00

Longing for soft sheets.
Constant slow motion running.
Will we sleep tonight?

Speech Therapy and Autism in NY

2010-11-04T23:20:00.003-04:00

It has recently come to our attention that the New York Regents is attempting to reduce the minimum educational standards for students with autism. We have serious concerns about this issue. We have heard that the NY State Regents are interested in making integrated classrooms bigger and eliminating the minimum speech therapy standards for students with autism. We are also told that these standards are being lowered for fiscal reasons alone.

We find this unacceptable as do many other parents with children on the spectrum. Current educational efforts are already lacking for many of these students. There is no alternative to our public education for children on the spectrum, especially now that the Governor has vetoed the autism insurance reform proposed legislation. We are confused why New York, once a progressive state with very high educational standards, is deciding it no longer wants to be in the forefront of modern educational movements. One of the many reasons that people choose to stay in New York state were the once wonderful public schools and programs for children that they offered.

We are deeply disheartened to hear that the services we already have had to fight for our son, may be further watered down to meet some financial goal.

Time and time again, I revisit in my head: are there better places for services? I read complaints from parents from all over the country. And you also hear from time to time about such and such city that is everything and anything. I have a hard time believing it though. I think someone, or maybe even a few families, get lucky, and then everybody starts moving there, and the voila, the pie gets diced up pretty small and now things aren't so great.

When in Connecticut recently, we asked about services there. Again, we heard much like we have about everywhere else: it depends. There are more laws on the books pertaining to covering autism there. There are great top notch research universities that study autism and I believe end up affecting the culture in the area. But each individual case is just that.

So if you are in NY, and love someone with autism please check out the following website to learn how you can help with the proposed cut to services. An email or phone call to one of the Regents would be greatly appreciated! Time is running out!

Autism Action Alert

Just when you think it's safe to be Catholic

2010-11-03T18:51:00.005-04:00

So I have gone through all the sacraments personally, with the exception of nunhood and death. I have learned the major parts of the Bible and the Catechism. I go to Mass. OK OK. Not every week, but I go a lot. OK OK. It depends. I am struggling with the concept of faith again in my life and I have missed a lot of Masses. But I still consider myself Catholic.

So we (Catholics that is) have taken hits because of the way the fools dealt with the pedophiles. Mind you - it is a well known fact that pedophiles join lots of vulnerable groups to get access to children: other churches, the Boy Scouts, clowns, heck even teachers themselves have been infiltrated. It's a bad thing, but don't let that make you believe that Catholics believe it's OK to molest children just because a few idiots tried to cover it up. It just aint so.

I didn't see a lot of US press on this, but thought it interesting:
Muslim suicide attackers massacre Catholics in Baghdad church

OK - so that is a terrible thing and I am certainly not trying to Muslim bash. Lord knows the Crusades don't make the Catholics looks too good. Heck, let's take a look at Yugoslavia and the Serbs for a second... OK Find it curious that the American press did not make much of it. Yet if there was some idiot priest somewhere who grabbed little Johnny's buttocks that would be the headline on tomorrow's paper.

Let's get one thing straight: the Church is not about abusing young children, some stupid people in the Church protected the idiots, but I don't know a single Catholic who joined the group because they didn't get accepted into NAMBLA. This behavior sickens most Catholics. Don't confuse some of the stupid people who do stupid things with the ideals that bring people to the institution.

Yes, it can be really hard to be a Catholic at times.

But after all the penance, the public ridicule, Vatican II, that Italian priest whose sermons went on and on and on, it's going to get a lot harder:

Catholics to learn new wording for Mass

Oh gosh - the one place I could go and mindlessly pass through the ritual while contemplating bigger things, and now I am going to have to pay attention and learn something new. uugghhh

Oh Sleep, Why Dost Thou Leave Me

2010-10-27T07:28:00.008-04:00

Gotta love Handel. Don't have to love the fact that Steve and I walk around sleep deprived.

Sleep issues and Zach. Yeah, we got 'em. And so do many parents - but at 4 years old, I guess I thought we would be passed this. Sleep disorders/issues seem to come with the territory if you have a child with autism. 44%-83% of kids on the spectrum have some sleep issue. (Sleep problems in autism: prevalence, cause, and intervention; Richdale, Amanda).

One comment I uttered a few years ago sticks in my head and seems to pop in and out at various times. When you first start to realize your kids are growing, you get so sad. A cousin of Steve's and her beautiful baby girl just posted on facebook a comment about putting away one size of clothes and going into the next and how the tears were a'flowing. I always hated the passing of time and my kids. I can recall saying to a friend that I just wished they could stay innocent forever. And wham. I guess God did grant me my wish. I feel like I have a perpetual infant sometimes with Zach. While he has progressed, I feel like he will be forever innocent, forever an infant. There are part about this that are nice, and parts that, well, make me wonder how we will handle the rest of our lives.

I feel like I will never have adequate sleep again. At this point, we are looking into getting a pediatric endocrinologist involved at the recommendation of Yale. Zach's sleep patterns are unusual, he has never required a lot of sleep. But more unusual is his night-waking. I have read a lot of kids on the spectrum night-wake - so does Zach, but rather than play around he tosses and turns. He actually appears to want to sleep, but isn't able to. This in conjunction with his GI issues may have a common link.

Some people have recommended benadryl and others melatonin. We are trying to avoid both of these options right now: 1) benadryl can work just great, except for those kids who react as if they were on speed to it, and 2) melatonin slows down the digestive system, and Zach already has slow digestive motility and I have gotten used to not having him barf and really don't feel like going there right now.

The odd part about this is that once in awhile, Zach throws us a bone and sleeps through the night. The next day, we all feel amazing - vibrant, clear thinking, alert, happy. But I have learned not to get used to this feeling. It won't be there for long.

So there you have it, just another reason why you should be grateful if your child doesn't have a disability. Sleep.

So if Steve and I look like we have been up all night - we likely have been. Or recovering from some sort of interrupted sleep.

Coffee anyone??

Freak

2010-10-26T10:28:00.006-04:00

In the 4th grade is when it started. I was about a foot taller than everybody. If I wore green I was called "The Green Giant", yellow - "Big Bird" - white "stork", you get the picture. Comments about my height were rather benign by many standards, but these comments that I physically did not fit in ended up putting me in a terrible place when adolescence hit. I was flat chested and taller then every boy around, not prime dating material. These apparently innocuous comments went on to make me incredibly vulnerable. A 5'10" thin blue eyed blonde made to feel self conscious. Sounds strange, but is very true. I couldn't believe anyone would ever find me attractive. I am a married 40 year old woman with 2 children, and these thoughts still linger in my mind.

Then there were the comments that came around 5th grade - kids start to realize you are getting 100's on all the quizzes, I played violin and sang in the choir, I answered the questions with interest and feeling at religious studies, I didn't have a lot of friends, teachers favored me. I was, by all descriptions, a geek. I remember being called "the great brain" and well, even though it sounds all great, it wasn't meant as a compliment, and made me feel so self conscious for wanting to succeed and being interested in academics. It was cool to act like you didn't care. But here lies the problem - I did with all my heart. I am still that person. I care with all my heart about so many things. I constantly over involve myself in other people's problems - hoping I can make a difference. And for this, I was mocked, and worse off as time has gone on, been taken great advantage of. It is by far the most daunting characteristic I have had to live with.

We all face scars from our childhood - have been teased, maybe even bullied. Children are cruel. And as much as I think they are immature and are not developmentally able to empathize yet- I see far too many people accepting these things than correcting them. Most kids go on to understand that these sort of things aren't right, but because they eventually learn their lesson isn't the point, these comments still do damage. The damage must be reckoned with too.

It's in the news everywhere - bullying, suicide rates for gay teens, suicides of young girls from social network intimidation, etc. We have made it even easier for people to show the nastiest, most vile sides of their selves through the anonymity of the Internet. Are we callousing ourselves to rude behavior since it seems to have escalated to such levels?

As a parent of a child with a disability, I am even more afraid of what will happen to my son. I would go as far as saying it terrifies me. Steve told me once that he wished Zach's disability was physical in nature, because at least then when the fools say something nasty to him, he can tell them to "f*ck off".

I would like to think that children are more aware of special needs more than ever - that their parents are raising them to be kind and generous with more knowledge due to awareness campaigns. But you know what - the dipwads who were having kids when my parents were, have spawned and multiplied their ignorance genes. I NEVER, even in my ignorant stages of life (when I thought that those things happen to those people) would have ever told someone with a disability, or back in my day "was just sort of weird" that I thought that they were "sort of weird". I was not raised that way. In fact, I was more apt to want to bop someone in the nose if I saw them doing that.

A note from a FEAT friend today:

Just wanted to let everyone know that Tyler went to a "typical" friend's birthday party yesterday at the American Legion. He was so excited to be invited. When we went in, he saw some "old" friends immediately and went to play with them. After less than 5 minutes, I saw him standing alone against the wall. Find out, the kids told him that he was "weirder than he was before" and they didn't want to play with him. So I helped him find another friend there. Again after less than 5 minutes, I found him crying in the bathroom. The kids called him a freak because he talked about Pokemon so much. They didn't want to play with him either. Then during musical chairs, he screamed because of the noise and lights. Again, was called a "freak" AND no parent disciplined their child either. I took his hand and immediately went into the bathroom where I hid in the stall and cried. I did NOT want him to see me cry but it hurt to see my little guy get treated in such a way.....and I thought he was doing so good too. Anyways, after I got out of the stall, he said to me "Momma, I want to go home. This party is not fun for me anymore".......we left. On the way home, he said to me, "Momma, am I a freak?" I said NO. He said "I'm glad that my Autism friends don't call me names like that. They are good friends, Momma.".....I just wanted to share that with you guys. Needless to say, I haven't been too "happy" yesterday or today. I can't get it out of my mind. Thanks all you "Feat Families" for loving my boy just the way he is!!! :)

This mother went on to belittle herself for leaving the party without defending her son, just adding to her pain. I would likely have been so flabbergasted myself, I would have done the same. Acting so rudely is so contrary to who I am and how I was raised, it just doesn't come natural for me to belittle someone, even when they darn well deserve it.

"all my "comebacks" come back hours later. :( Kinda loses the meaning of "comeback", eh?"

I tried, as did a few others, to console her with comments. I felt helpless to do anything meaningful though, like my comments were ether. I am hoping that this post may enlighten just one person to realize that bad behavior is never acceptable, even with children. They may not outgrow it if they never are told it is wrong.

So here is the funny part of the story. Even in my parent support group, I feel like an outsider. I kind of feel like I float around the group, watching them, trying to intersect into their space. This is when I wonder if I have all along had some sort of social disorder - because even amongst "misfits" I don't fit. I talk too much at times, and am completely quiet at others, I don't say the right things. The kicker is that one of the mother's in our little group is on the spectrum herself, and even she does better socially than I do. I hope the people in my life recognize that I might not be the best in social situations, but I am trying and I do care. Too much probably.

The story above is just one story amongst many. Parents' hearts break everyday when their special needs children are mocked and the general public likely shrug it off. Wish their was an answer. Will the meek really inherit the Earth or do I need to take lessons in a little whoop-*ss talk so I can make sure to have my game on for when this happens to us?

Insurance Legislation : the NY VETO

2010-10-21T12:29:00.007-04:00

This is post is a snoozer if you ask me, this could probably be more aptly named: Everything and Nothing You Ever Wanted to Know About Autism Insurance Reform in New York State

The governor of the state of New York has vetoed a bill for autism insurance reform. You may have noticed that I have not been talking much about this lately. Good reason for that too.

A little background: currently 23 states have laws on the books mandating some sort of insurance coverage for kids on the spectrum. 13 states (including NY) have legislation pending - bills introduced and endorsed, and another 9 states that have bills awaiting introduction into their respective legislatures. That leaves 5 states with nothing going on at all.

The New York bill had unanimously passed both the State Senate and Assembly. Governor Paterson vetoed the bill at the last final moment he could legally do so, the evening of day 10, that it reached his desk.

People affected by autism were split on this legislation. There were many who were happy the governor rejected it. There were forces out there that stated that Governor Paterson had heard their calls to veto it and were happy with his decision. However, his declared decision had nothing to do with these parents wishes for the bill to be rejected; he vetoed the bill for fiscal reasons alone according to the veto documentation. In his veto justification, he estimates the state and municipal cost at $70 million annually. Autism Speaks refutes this estimate as being "inaccurate costs projections" and cite $0 dollars first year, and the subsequent year at $30 million with insurance premium increases of 0.65%.

"I am extremely sympathetic to the very real struggles faced by the families of individuals with ASD," Paterson said in his veto. "It will be a subject of my continued advocacy as a private citizen. But now I am governor and I cannot sign a bill that would impose costs that the legislature does not fund." Gov. Patterson

Supporters say it would allow for coverage of diagnosis and evaluation, plus evidence based approaches like behavioral therapy. Our out of pocket costs for behavioral therapy for this year will be approximately $18,000 and his evaluation at Yale was $5,500. These costs do not include his dietary intervention costs and supplements, integrative pediatrician visits, copays, the basement finishing we are doing so he can have more effective space for PT and OT, nor the specific toys and materials that we purchase to support his therapy, books and other reference materials. I cannot even remember what last year cost us, but it was similar. As we like to call Zach around here: our little kitchen remodel.

So why did these parents want this bill rejected? One thing objectors state is that it would give insurers the ability to reject claims once accepted. According to critics, the criteria of treatments to be "evidence-based, peer-reviewed and clinically proven” is above and beyond standards for any other medical treatments. Some state that there isn't a single treatment that could pass these constraints. However, families would have been able to appeal denials to an independent review panel if an initial grievance to the insurer was unsuccessful.

Another issue: governmental oversight. There would be a four-agency committee to decide what treatment may be covered. As pointed out by the objectors - no other medical condition requires this.

And what is my particular take on all of this? I was leery the moment this particular bill was introduced. I had been following insurance legislation, since we got into this whole mess in the first place, 23 months ago. There were several bills that were introduced, and one bill that seemed more comprehensive than the others.

All of a sudden, out of what felt like no where, a new bill, S7000, arrived and consequently was passed within 3 months of introduction. My hackles were raised at how this all proceeded - and I felt it could only be one thing: a behind the doors deal. I kept my suspicions to myself. Remember: I know I have the reasoning of a 77 year old man and realize my skepticism may not always be accurate. I want to believe in good things.

But then I read the bill. It was vague and without constraints - no caps? no age limits? Seemed incredibly open-ended.

As I kept mum about this, since I felt so ignorant about it, I kept my ear to the ground. And what I have heard seemed to confirm my skepticism. Rumor #1: The legislation was drafted by an insurance lobbyist. Rumor #2: The legislation was introduced in a session where no non-legislative attendees were present with the exception of the drafters of the bill - said insurance lobbyists.

Certain groups that have an official capacity in these things endorsed the bill - such as NYSABA (New York State Association of Behavior Analysts), AAP (American Academy of Pediatrics) and even the New York State Catholic Conference. But they are likely unaware of all the legal/political underpinnings and suspicious activities around this bill.

Honestly, I am unsure of how I feel about this bill. Part of me, just wants to see anything get through, and once we get our foot in the door, we can just try to pry it open further. But the other part of me is feeling like someone has poisoned the watering hole; this legislation could be outright dangerous and avoid covering anyone while making the general populous think that there is coverage and children are having their needs met. uugghhh

The inequity in treatment drives me nuts. I have heard that if we lived in Connecticut or Massachusetts, that most of the therapy would have been paid for by the school district according to a few of the therapists we have used that are from those areas. I have heard that if we lived downstate - in the New York city area, that we would be getting 40 hours no problem. I know parents in the local area who received services, 40 hours, etc. from their school districts, although not many. I know of a family who moved to Wisconsin and will be getting 35 hours of services for their child. Are we supposed to move in order for Zach to get services paid for? Don't think we are not thinking about this.

This is what I know:
1) my son needs services,
2) the services he has received have made a difference for him; his early intervention has likely helped to create a better outcome for him, as limited as it has been.
3) he needs more services than we can afford for him.
4) every dollar spent now likely will save much more later.

This is also what I know:
1) Insurance companies
2) Lobbyists
3) Backdoor policymakers
scare the snot out of me .... OK not really, but they don't have my son's best interest at heart.

It's up for me and Steve to finagle a way to make things work for Zach - and it is important for me to point out to all of you who are not going through this that gross inequities exist for families who need services for their child. You are not given anything automatically and what might look good on paper might stink in reality anyhow.

Birthday Shennanigans

2010-10-19T20:24:00.006-04:00

October is a pretty high celebratory month in the Morphet house. Zach's birthday, Steve's birthday, and our anniversary all rolled into one month. This past weekend we celebrated Steve's birthday as we do all things around here, with overbooking, great physical feats, and complete chaos.

(Do you like Steve's corporate mug shot?)

As you may recall, we have begun our basement finishing project. We have completed the insulation phase of the project, and that's about it. Everything else is in some state of upheaval or another. We have hired a contractor to show us what to do. And so far Steve has done quite a bit - putting up insulation, studs, rerouting ductwork, and this past (don't forget his birthday) weekend, cutting into our concrete slab and jack-hammering the snot out of it, then a bunch of digging. Do I know how to throw him a party or what?

It reminds me of Steve's birthday eight years ago. I had things semi-planned, there would be a small surprise party, some food and cake. And whamo! our basement was flooded with sewage roughly 1 hour and 45 minutes before the guests arrived.
Me: "Uh honey?"
Steve: "Yeah?"
Me: "The basement ...well...."
Steve: " I'll get to it..."
Me: " Well the thing is, we have company coming in about 2 hours."
Steve: "What?"
Me: "Surprise!!! Happy Birthday"

Amidst the basement undertaking, this past weekend, I was able to book a few more fun things in: a trip to the local comedy club (free tickets from a local autism family support group) and our first wine tour through the Finger Lakes (a package through our church that was a present from Cathy and Mark).

This meant our children were under the direction of others for several hours this weekend. I am just not used to not seeing them all the time. I have to say - that I was glad to see them by the time we sloshed off the tour bus from the wine tasting.

Sophia had a Halloween Bash this weekend and her final soccer practice of the season. I am still in awe of the fact that we had 6 continuous Saturdays in a row of soccer practice with no rain. Sunday night rolled around and I needed a break from our weekend! Steve even made his own cupcakes. I am so embarrassed by this most of all!

Now on to our anniversary. 9 years ago, we were getting hitched and feeling the wind at our backs. A lot has changed in 9 years. I have been told to write a book. Our life is rich!

Happy birthday and ANNIVERSARY STEVEN!

In Memory

2010-10-18T10:42:00.003-04:00

One year ago, a friend lost their 5 year old son to complications from H1N1. I cannot stop thinking of the sadness of this event. They have done a terrific job at trying to keep his spirit alive by building a park for him and doing advocacy work. I cannot begin to understand their pain, but I can imagine that it is beyond words.

If you have a child and he is troubling you with some thing or the other, please keep in mind that his life is precious, as all of ours are. Maybe be considerate to someone you might not deserve it today - they too could be experiencing some significant loss in their life and need a little compassion.

Peace.

Zach turned 4!!!

2010-10-15T16:51:00.001-04:00

I cannot believe my beautiful boy turned 4 already! For Zach's birthday - we didn't eat cake, he opened only one present (with a lot of coaxing) and we went on a 5 and a half hour drive to stay with people we never met.

I am still not ready to post anything about Yale yet. Hey - their report won't be arriving for another 7 weeks anyhow so anything I would report would come from my fairly faulty memory.

But enough referencing that visit already. I want to write a post to celebrate my dear, beautiful son's life. I had the chance to report on some of Zach's latest developments in the last post. I thought it might be a good time to summarize where he is at right now and what we are up to regarding his treatment.

We are in a home program now, where he receives occupational therapy (OT), physical therapy (PT), and special education services. We currently have a five person team. We do not have an official SLP - but one of our home providers has an undergrad degree in speech and can handle a lot of that. This boy gets a workout I tell you! He likes his team, and I have seen a difference in his attending to things already.

Of the latest things that I have noticed about him, there are some things that are hard to describe in terms of a specific skill, yet I think are as significant: he has begun to interact with his sister in a more typical fashion, teasing her, getting mad at her when she teases him, and running around the house with her giggling at their interaction. I love it. The sound of their feet scurrying around the house, only to be proceeded by a fit of giggles is astonishingly the most beautiful sound I have ever heard. I only wish it happened more often. Then the other behavior of Zach's that caught me off guard because it was so, well, so typical of a child, was the other day when he didn't get his way, he did a fake cry to try to get his mush-of-a-mother to cave in. The way he squinted his eyes and made this crying sound made me laugh. I was shocked that he knew how to play me and could act. Who says my kid can't pretend?

Things Zach likes: potato chips, broccoli, cucumbers, hot dogs, chocolate, bananas, raspberries, Thomas the Train anything, his iPad, magnets, water, swimming, balls, obstacle courses, jumping, letters, cuddling, going on adventures, his family being together, drawers to be closed, a hand me down T-shirt with none other than Thomas characters on it. He is wearing the T-shirt in the picture to the right although you can't see it well in this picture. He would wear this t-shirt 24x7 if he could. He searches his closet daily for it, and we purposely hide it from him. We have given him other Thomas the Train apparel before, so why this is so compelling to him, like Zach himself, is a mystery to us.

Zach is still his smiley self that he has been since he was a few months old. His independence is emerging which is both exciting and scary. First bit of independence came when he began getting out of his bed. He used to wait for us to come in his room and get him in the morning. A lot of people think this is a good thing, but it is not typical. I was constantly concerned that if he were to get sick or some other issue were to arise, he wouldn't come and tell me. Part of the reason we have Sophia and him share a bedroom is for her to alert us to such events. About 2 months ago, he actually woke up and came downstairs into the kitchen where Steve was making breakfast. We were shocked! Now the problem has been a little night visitor coming into our room to hop into bed with us. z-z-z-z sorry I fell asleep.

The other thing he has started to do is open up the fridge and pantry and attempt to "self serve". I have to laugh that he is not clumsy - and we have had few spills associated with these events. He will climb, a definite skill of his, up cupboards and shelves to get at what he wants. Yup. So far he hasn't managed to grab any of the foods we would like him to avoid, so this is good. So far at least.

WARNING *** TOILET TRAINING TALK ********************************************
Potty training is going well. He is schedule trained - which means he is holding it until we put him on the potty. He has not begun to initiate which is our next hurdle. The original program we were operating under said to elongate the periods between putting him on the potty in which accident frequency would increase and requesting to go on the potty now that he is used to being dry should at some point commence. Well, first off, this kid has a bladder of iron - he held his pee for 10 hours!! So I am not quite sure what is going to be the next steps here. Right now, we are keeping the trips to the potty frequent so that he has many instances if practicing self help skills such as pulling his pants and underwear on and off and washing his hands.
**********************************************************************************
Zach and Sophia had a recent field trip with his aunt and uncle to an apple farm. As much as this was supposed to be a break for me and Steve to enjoy a Sunday morning/afternoon to ourselves, I instead spent it sweating. I was too scared to leave the house to run errands. He has not had a lot of opportunities to go out with people except for me and Steve. Would he tantrum? Would he wet himself? Would some new behavior come out? Anxiety and lots of it. Yup, that would be me.

In the end - he did great. In fact, I noticed later on that day that he had bonded with his Uncle Mark. Zach has always had an affinity to men over women.

I feel so blessed to have him in my life. Sophia changed my life forever, and Zach continued the change. I can say that I am a much better person because of my children. I like what I have learned about myself that I never knew, my patience, ability to communicate effectively, and perseverance. I also like how I have changed, increased my work ethic and ability to stay on task, tolerating others different than me, and going on to appreciate them and even love them regardless of these differences. Pretty profound stuff.

People often look away from those who are different than them, avoiding eye contact with someone so different than themselves, whether it be because of race, status, or disability. I find it funny to see the number of people who look at Zach - and smile. He has a smile that lights up a room. Who knows, maybe he will help to change people's attitudes about special needs, and what autism is. I know he did that for me.

Happy Birthday my beautiful boy!

The "Real" World: Butterflies, Ladybugs, Black Cats and Cake

2010-10-13T15:09:00.007-04:00

Yes we went to Yale. Yes we made it home OK. The trip was informative, difficult, and affirmative all at the same time. Still processing and will post more about it when given the chance, so expect that sometime in 2015.

Want to do a quick post to talk about things Zach is up to. Prefer to write about these things anyhow and not yucky trips to institutions that use words like progress, standardized scores, and deviation.

Zach shocked the heck out of us at his birthday party this past weekend. On Saturday we had a very informal play-date/birthday party and he promptly ignored the other children with the exception of one child whom took his hat off and Zach later went up to him and put his hat back on him. Nothing substantial to report on Zach's behalf, but great friends who showed up without the promises of all the gimmicks of the great American birthday party - just an offer for unorganized play and cupcakes. You start to realize who your friends are at these events.

Then there was the family party the next day. He saw the cake Steve had purchased for him and went nuts for him. Being that we wanted to eat dinner first, and then have cake, we hid the cake out of sight and allowed Zach to open one present to divert his attention. At some point this tactic no longer worked, and while I was in the living room with the grandma's, much of the company watching the Giant's game in the family room, I heard Zach in the kitchen say to Steve, with gusto I might add, "I want a treat!". I ran into the kitchen and Steve told me that Zach totally spontaneously uttered this COMPLETE SENTENCE on his own, without prompting! We ran the cake into the dining room, rushed everyone in, cut the cake and gave Zach a piece, all while singing "Happy Birthday" without candles on the cake. I am not sure if my family understood 1) the necessity of giving the Zach the cake right away after his request (need to reinforce what he asked for so he will do it again) and 2) why this was such a big deal. Zach said his first complete sentence on his own and it was appropriate. Can you tell I am a little excited about this?

Then this past few days - Zach noticed and interacted with the three gazillion lady bugs outside our house, he chased a butterfly in our lawn, and he pursued and grabbed and petted our neighbors cat who was gracious with Zach's not-so-gentle touch. This cat has certainly endeared himself to me! Now, if you are thinking this sounds like no big deal and why would I possibly bore you with this - I want you to get down on your knees right now and thank the good Lord for not having a child who is unaware of the world around him. This, in Zach's case, has been part of his autism. This seemingly ambivalence to many things of living form is heart breaking to many a parent. It breaks your heart to have to share your child with a world you are in, and one you are not part of. I feel constant pulls between these two worlds, and for once in my life, I feel like I can say that Zach is more part of our world than his own. It might only be a 55%/45% split right now, but it is slowly edging up. I don't need for him to be 100% - in fact, I have learned to be in that other world myself, and am willing to meet him part way. But I still need him to be here just a bit more - to function enough so that he can understand the power of communication, and then have the ability to communicate his desire and needs so that they can be met. This is my goal for him right now - to more throughly understand who he is so I can help him to be all he wants to be.

The Rain Stopped Tonight

2010-10-01T00:19:00.012-04:00

Yesterday, across the East Coast, there were heavy rains. And it did. All day. Odd for some places, but not Syracuse NY where a sunny day in January frequently triggers UFO sightings. (There's a yellow round ball in the sky - whatever could it be???)

As has been his norm for the past several weeks, Zach has a few phrases he has been repeating spontaneously, without specific training. Currently: "duck duck duck" and either "we wish" or "I wish". Yes, wishing has returned to the Morphet household once again.

I often do not know how to refer Zach's language and speech. I sometimes refer to him as non-verbal which is inaccurate as pointed out to me by a researcher in Binghamton since he can utter a few words and does so consistently. I just cannot describe it succinctly.Currently, there is lots of babbling where I believe he is just playing with sound, babbling that has a pattern and he tends to repeat ( I believe these incomprehensible phrases mean something but have no idea what), he has single words that he can use to label items or a few actions plus request a few items, and a few phrases. But most of his vocalization I would say is non-functional at this point. His one therapist believes tht some of the babbling may even be a stim that he does when bored like tapping a finger, bobbing a knee, etc.

When Zach does speak, he is often very quiet and it can be very difficult to get him to increase his volume. He can receptively and expressively identify all letters of the alphabet, both upper and lower case, and has 24 of the associated phonetics down with the associated letter. One of the more obvious idiosyncrasies in his speech I have noticed is his difficulty in saying longer, multisyllabic words where he will frequently drop final consonants and/or middle consonants. His speech is minimally functional and rather inconsistent. We are working on increasing his receptive and expressive language at this time. He is able to do some one-step directives and we are working on two-step with some success at this point. However, on top of Zach's autism, I am wondering if he is apraxic as well.

Autism is largely a social disorder with symptoms of delayed language acquisition, idiosyncratic language, or total lack thereof. The type of idiosyncrasies in Zach's language align to many of the descriptions of verbal apraxia - trouble saying what he wants to say correctly and consistently. I am sorry to say that both of my children have acquired my lisp on top of all the other bad genes I seemed to have passed. *sigh*

Communication delays are by far our greatest concern with him. Other symptoms of his autism include little use of pointing, diminished eye contact, and stimming, namely his desire to jump when not engaged and arm tensing when excited.

I have spoken to a number of families, read books, research online, and am perplexed by Zach and his potential for meaningful language development. I sort of feel like we are in a wait and see stance. Many of the stories I read and families I speak to discuss that once intensive therapy commenced, language development flourished within one year. Well, we are way past that one year mark.

One of the most difficult aspects of autism is you are always waiting, for good things to happen, and for bad things to happen. There are the behaviors that you know your child presents in given situations, and as you are out to dinner or at church or wherever, you are just waiting to happen. A lot of times they don't. Sometimes you think you are in the clear and actually forget about them, and in your lack of attentiveness, whamo! it happens. Then there are the things that errupt out of nowhere, never to have been seen before. The known unknownsnand the unknown unknowns. I listen to what a lot of other parents say when they discuss their children who are older, and I take into consideration that as Zach matures, he may have a lot of these. But then again, it is the snowflake disorder, and every child is so different, you just don't know from day to day. There are genes, there is the disorder, there is personality, there is the environment, there is expression. The cocktail creates an endless array of possibilities that have you waiting like a sniper for the bad, and praying like a monk for the possibilities.

In the end, I think living with autism is somewhat like the rain that we had; living in a rainy climate, you know to have an umbrella, a sump pump, avoid roads that flood, eat soup for dinner. You try not to think of those people who live in San Diego.

I had an evening out with 9 other mothers from our local Families for Effective Autism Treatment group. We met at a Barnes and Noble. The drive out there in the rain seemed treacherous - I could not see the lines in the road, the rain was so heavy and it was dark. I arrived, late, but that was OK. I settled down into a chair. As I looked around the table, I noticed we are all so different!

A mother told me a story of how her 8 year old son who only had said a few single words, recently began medication (Risperdol) and within two weeks, began speaking spontaneously in sentences. My heart fluttered as she told me her story. Another mother spoke of her 16 year old son with Asperger's being asked out on a date. I was as excited as if they were my own children. As the evening progressed, I noticed that we mingled, we discussed, we talked kids, and talked life in general. The conversation never became awkward. We actually closed the place down. There were no kids to chase or watch or fear what would happen. As we exited the store, we went outside and actually talked for another half hour in front of the closed store. I noticed something else, the rain had stopped. All I could think of was how apropos that was. It would certainly rain again, this is, after all, Syracuse NY. But for one brief shining moment, a group of us weathered the storm and were blessed with a break. And it was beautiful.

Things That Keep Me Going Part 3: Sharing Joy

2010-09-27T15:27:00.000-04:00

I am by all accounts best described as a 77 year old man. Perhaps I was born that way. A curmudgeon. Perhaps I saw a little too much up front and personally a little too young. Pessimism just slipped right in. As much as I am a skeptic, I am not miserable. I am indeed the happiest pessimist that might be.

My personality is probably grating for those around me. In fact, I may not choose to be around someone like myself. I like happy people, people who laugh. I am capable of laughter, although I have been accused of a cackle more than a giggle. But I rarely take pleasure in silliness for the most part unless with my kids. I love dry wit, a good pun, sarcasm. I am terrible at small talk, often bringing the conversation to depths of seriousness not warranted by the occasion. I think for as much as I enjoy fun, I am a rather serious person at heart, and sincere in everything I say to a flaw. As a friend recently told me, I can be a 'Debbie Downer'.

I often catch myself in these depths dwelling far too long. I do not wish to stay there, but often do not have the ability to pull myself out. I see the difficulty, the issues, the work, the potential for problems. I am working on getting myself out of these ruts, but more often than not require the aid of someone else to pull me out.

I don't necessarily need someone to hear me out. I get tired of hearing myself talk, too! I love to hear about what other people have going on in their lives - the bad and the good. I know some people are probably cautious to share with us the events of their lives, I have heard people say they were afraid to talk about their child's progress for fear it would hurt us, but it won't! I have also had people tell me that they didn't want to share their problems, because they think they are somewhat trivial compared to ours. Not so!

Extremes are another issue - I really don't want a braggart telling my how perfect their child is and how their child is better than so and so. Blek. Always hated that. And everyone has problems - we all have "woe is me" moments in life. However, I have known people who get competitive in who has a tougher life, and I think that is just the most ridiculous notion there ever could be.

I was glad to recently have read the following book: The Autism-Moms-Survival-Guide. It felt like I was reading excerpts, albeit more articulate and well written, from my own blog. It felt like having a friend with me. The book was given to me by my dear sister-in-law Cindy and it has certainly been a worthwhile read.

I have other families with children with an ASD that I stay in touch with. There are support groups where we meet monthly. There is also facebook, phone calls, blog pages, playdates, autism events, a plethora of ways we connect. We commiserate, and boy do we. The nice thing about this is when you b*tch to a fellow parent of an ASD parent, even though they might not understand your exact experience, they know the feeling of despair; they don't look at you like you dumped a load of bricks on them, doe eyed with no idea what how to respond.

But we also share progress and surprises - the joys in our lives. Sometimes its about our typical children or a spouse, a job promotion, a date- normal stuff, you know? And I am always so happy for these families - my eyes welled up when a friend told me her kindergartner had a good first week or when another friend of a 10 year old said week 1 at school was rough, but the team her son has is enthusiastic and looked promising. I get chills just thinking about those words - they may appear as small events to some, but these are huge wins in the world of disability.

But I take joy in those who aren't in the world of special needs too: A niece of mine recently graduated with her graduate degree in special ed. First of the grandkids with a grad degree. My other niece went to Ghana to do some volunteer work as a medical student. A nephew of mine will be taking piano lessons at Eastman as a chemical engineering major. Steve's cousin recently had a beautiful baby girl. My cousin is due in a few weeks. Another cousin of mine posted something simple on her facebook page about her great family and career and thanking God for her life right now. Love all this stuff! Life is so fluid, and I love to hear the joys of others.

Zach's home program is progressing. We have 5 therapists lined up for him at present. Things are moving right along. As for his progression - I cannot say much about that - I think I am too much in the thick of it to see what is taking place. I can tell you that he is saying some new things: this weekend we kept on hearing "Mickey Mouse" and "tuba" which basically came out of no where for us. We don't have the Disney channel so the Mickey Mouse thing might seem appropriate but still seems out of nowhere for us. These words are nothing we are working on.

Last week it was "Oh man", "I see Percy", "Wake up". But there are phrases that we are not quite sure what he is saying, and one of these recently sounds a lot like "Repent!". I don't know, perhaps we have a televangelist in our future. It often feels like Zach can only have around 25 words in his vocabulary at any given time, but no more. With the new program rolling along and his upcoming eval, I am hoping to get a better understanding of what is going on here.

I am not quite sure how to say this - but the home program is a lot of work and is very intrusive into our lives. Well, maybe not Steve's as much, but certainly mine. Home is a place of respite for most - but not ours. We are attempting to finish off the basement so there is more room for Zach's therapy, in particular his OT and PT. Steve and I will be learning the art of hanging drywall and installing floating floors. Then there is the therapy itself. There is a revolving door of therapists and service workers coming and going. I have to be honest and say that this is a sacrifice for me without a doubt. But I keep on thinking it is a short term one - one we hope can make a difference for Zach and his life. As I go through this really difficult time, I sure would appreciate hearing your stories - good and bad - the connection to the outside world is so important as I live, breathe and work at home now. I especially look forward to sharing in those stories of joy ...

Things That Keep Me Going Part Deux: Unexpected Gestures

2010-09-16T16:45:00.006-04:00

You know that Oprah Winfrey thing where you are supposed to buy a stranger's groceries in line behind you or pay someone's tolls at the toll booth, etc? I really don't know anything about this because watching television hasn't made its way into the Morphet rhythm of life unless it is a Thomas the Train or Tinker Bell video. I have heard some mention of it in the discourse of our lives.

Well, anyhow, the notion of this is a gesture offered to another party just because. The concept sounded nice, but my engineering sensibilities told me that I would be better off just giving to charity.

But indeed, I have been touched by unexpected gestures. In fact, one such gesture was this weekend. But it wasn't the type to keep me going. It was the type that made me want to turn vigilante. If you haven't guessed off of reading this blog yet, Steve and I have the luck of a black cat. Well, you know how they say "The Luck of the Irish"? I always felt that I had "The Luck of the Polish" and one high level overview of the what Poland has gone through since its existence should pretty much tell you that we don't get many freebies.

On the way to the first soccer practice this weekend, Sophie went out to the car with her father to find Steve's car with a vulgar drawing on it and something written that we were unable to read. It was (thankfully?) done in silly string. Steve was irate. There has been an array of vandalism in the neighborhood - and there are a round of usual suspects. They have normally been using spray paint and occasionally blowing out windows so I guess in some ways we were lucky. Having my lovely 6 year old discover this, however, was far from lucky. She wanted to know what it was on the car. And then she wanted to know why someone would do this to us.

Off Steve and Sophia went to soccer, and off I went to document what happened contact officials and the local neighborhood watch group. That's all I do. Paperwork. Emails. Phone calls. This wouldn't bother me as much if it was either more positive or productive, but more often than not they aren't. Faith in God is waning. I am taking every avenue and pursuing it, and with all the leads lately, there has been little success. Make that none actually. I keep on trying, I just don't see why I should believe that God is involved in any of this because all he is doing is giving us a hard time if so. All the hard work with no pay off is lessening my ability to trust others. And I really have been going to ridiculous ends to try and get Zach help (services) with little success. (Another post)

So, why don't I just totally throw in the towel? Because even though the people who should be helping us aren't, there have been spectacular people along the way who have overwhelmed us with the most amazing and unexpected gestures. Good ones that is.

Recently, a dear friend and single mother to a child with an ASD gave us her son's hand me downs. The clothes were beautiful! I cannot get over what a relief it was since I haven't been shopping for clothes for the kids in so long (problems with time and finances....). Zach is set for this fall and winter for sure! Now if only I could find someone to get hand me downs from for Sophie! My mother in law and I couldn't believe how much there was.

Then there has been an agency who has temporarily given us some funding to pay for a paraprofessional to come to our house and help out while we are working out with the school district getting Zach services.

Then there is a dear old surrogate Uncle and Aunt who, after witnessing Zach and the loaned iPad, got him one! This has had such a significant effect on our family. It is just tremendous! I cannot thank Aunt Gail and Uncle Ron enough for this gift. Since witnessing Zach and this device - 7 other families we have had contact with have gone out and purchased these and told us their children are very responsive to them as well. The form factor seems to be making all the difference - they are larger than the iPod which seem to help with motor skill issues. I have emailed Steve Jobs regarding promoting these devices for special needs families - even sent him video - but no response so far.

And then there is a couple in Connecticut, an aunt and uncle of a friend, who will be hosting us when we take Zach to his next evaluation at Yale. Strangers to us, not obligated at all, yet so kind to open their home to us.

All of these gestures are amazing - and have given me some faith in people when I feel like we have been forsaken by so many others. The journey seems so long right now. We are grateful to those who have surprised us with their benevolence. They remind me of the water stops along the road where volunteers hand you cups of water that might not hydrate you fully, but offer you enough to get through the next leg of the race.

Blindsided

2010-09-15T15:11:00.001-04:00

So, if the last post has you thinking that Steve and I are on the verge of divorce, don't. We're not. We don't scream at each other. Relative to the amount of stress we are under, I would say we underperform in the fighting category. Steve snips, I yell on occasion. It happens.

This is not to say that Steve and I are so deeply in love that we can conquer anything. I am a romantic at times, and would love to say that is so, but that would be a bold faced lie. The truth is that Steve and I are clinging together out of necessity most of all.

A friend recently pointed out that she noticed that her and her husband fought more when he had a career change that required them to move to a new city. Stress does that to people. And this is utterly the most stressful thing I have endured that has lasted such an extraordinary amount of time.

I recently heard an interview with Michael Eisner, former CEO of Disney about his take on partnerships. He talked about the fact that quite often successful partnerships involve one as the active player and the other as the cheerleader, one role not more important than the other, both could exist separately, but together via synergy, they produce more quality, do their job more ethically, and are able to achieve more than they would have alone. He extrapolated that the marriage model is very much like this in effective unions. He said that you can survive a lot of lows in life if you can never become envious of one another but maintain pride in your partner. I am not envious of Steve - and I appreciate what he does for our family.

I am more proud of Steve than he is of himself. He is a fairly humble guy. And that is why I was so excited when I found out he and his research partner won the Central New York Technology Alliance's Technologist of the Year award. TACNY is a group of around 50 technical professional societies that have a presence in CNY. I am really excited for Steve. Steve believes his boss submitted them for this. Just prior to graduating SU, he likewise won the All-University Dissertation Award for his doctoral dissertation. This recent award made me so happy because I feel that even though I know we have impacted Steve, we haven't killed his career completely. One dead career is enough in the family.

I want Steve to succeed. His success is a win for the family and will only help. I will always looks at my two nieces and see the pain in the eyes as likely caused by their parents' divorces, and I just don't want that for my kids. Steve and I have seen quite a bit these past few years, and we are definitely angry people lately, but not at each other, and certainly not at our beautiful children, although don't ask me that when Sophie starts talk back to me like the little teenager she thinks she is...

And then there is Sophie. Last night was her open house at school. I rushed to get her from ballet, and then to pick up Steve and off to the open house. After the teacher gave us a little discussion on what they are up to this year, I went up to talk to her. I mentioned that Sophia received OT last year and that I was concerned about this year. The teacher said "Yes, I have noticed some things. In fact, the gym teacher approached me about her as well."

My world started to spin a little. As we walked around the room looking at the kids projects, the spinning became faster. Self portraits - oh my. Remember that Sesame Street song that goes like "One of the things in not like the other..." well, hers stood out for sure. I was shocked at the skill difference between hers and her peers. Steve made a wisecrack that at least we didn't have to worry about her being a poor art major in college. By the time we got to the journals, I nearly lost it. How could I have not realized how far behind her fine motor skills she was from her peers? Maybe because I was constantly asking her teacher and her OT from last year, and they didn't seem to think she would have a problem. In one week, her teacher this year already noticed enough to tell me to go ahead and procure what I could for Sophie in resources and therapists.

I spent most of the night up staring at the ceiling. How did I not see this? I asked her teacher last year. I asked her OT. I didn't get into the classroom enough I guess. Her report card was always good. What the heck!

I spoke with Sophie's gym teacher who will be giving me an informal assessment at the end of next week. She said she definitely sees motor planning and transition issues. I called Sophie's developmental pediatrician and laid out what I have noticed and what others had told me. They recommended that I go to the school district and request services and that her quadruple dx should qualify her for OT and PT. Oh - I just cannot believe this is happening. I feel blindsided by all this.

We have yet to secure appropriate services for Zach for Pete's sake!

Did I happen to mention that my mom has a new tumor - on her spine? They told her not to worry about it unless she suddenly can't walk or starts peeing on herself. I wish I was at that doctor's appointment...

Once again, life has thrown us some curve balls and I am trying my best to balance the disruption they cause with the excitement of Steve's award on top of just trying to enjoy our kids. Mom Morphet has purchased a house on the other side of town - around 15 minutes away. She closes on the house tomorrow.

The good with the bad. Need more good. Need more good. Need more good.

Things that take your breath away

2010-09-12T10:01:00.004-04:00

A few weeks ago, a friend had us over to swim at her house. We have spent some time over at her house this past month, and the kids swimming skills have certainly increased while doing it.

My friend is a single parent. I have found this event to be so commonplace, that I don't think much of it. And, well, I should.

Well, Zach is quite the little swimmer let me tell you. He loves to put his face in the water and practices holding his breath as long as he can. He kicks up a storm. He has no problem jumping in the deep end and loves to continually practice front and back floats. We have a version of the floaties that allows us to just let him have the run of a pool without worrying about him going under. And, alas, he watched his sister and even started going of the diving board. I always think of Michael Phelps' mom talking about how he was ADHD and how she could use his intensity/hyper focus to an advantage. Will I be able to do that with Zach one day?

Anyhow, on the way home Sophia asked where her son's father lived. We told her he had another home. She then asked why some mom and dads don't live together. I tried my best to explain it, as carefully as I could, but very clumsily. She went on to say that she has heard Steve and I fight, a lot, and she was concerned that it would happen to us. The breath was taken out of my lungs as if I had just fallen out of a 40 foot tree flat on my back. There was no good way to respond to this.

Marriage is tough work. Kids add stress and loads more work. Disability adds immeasurable more work and uncertainty. Dealing with the bureaucracy because of the disability is more work than it took to get the Apollo mission space bound and aggravating. Holy crud it is work.

If there is one thing I know, we must do what is best for Zach. And sometimes that means we must do what is best for the family. Sophia should not be fearing our divorce amongst the negligence she already has to deal with. Steve and I should not be in the state we are.

For a plethora of reasons we have decided to pull Zach from his school program. I am not happy in this decision, I don't think there was a perfect scenario at all. We pulled him for various reasons for him and for various reasons for our family. It was an incredibly hard decision, and has left me personally overwhelmed with emotion and a huge burden, yes I said burden, to make sure he gets some semblance of appropriate services here in the home. This is not his fault. This is not autism's fault. This is mostly the problem with those who should be the responsible parties for getting appropriate services for Zach and couldn't stand up to the plate for us.

I am on the phone or computer nearly all day trying to figure things out. I had no vacation, even though we went away, because of all the calamity with this.

As much as we have liked the people in Zach's program, and thought the program used great principles, it was not intense nor individualized enough for Zach. I often thought if Zach was either lower functioning or higher functioning it would have been perfect. We tried to work things out with the program and the school district, but although the program attempted to make modifications for us, we grew weary as the days were clicking away to when he began, and we had yet to meet personnel from the program. Steve had always wanted me to do a home program all along, and when we were basically told that our wish for Zach to have a 1:1 aid would not be able to be put into his IEP it seemed to push a button for us. The program was going to attempt to staff a position that would be almost like a 1:1, with the exception that it couldn't be written into his IEP, and it sounded great. I think the sad part about our journey into the world of special needs is realizing the necessity to have everything in writing. We have been hugely disappointed on this journey already. A few well intentioned people have made promises that they were unable to keep. And several people on the sly have made promises they never meant to keep. Because of this, we are very gun shy to trust anyone without things in writing. We need to be able to point to something that shows we all agreed to something. We just couldn't be assured that this was going to happen. We need that legal recourse

When we pulled Zach from his school program, we had made prior calls to therapists and agencies to see if we would have a program similar to his school program that could be run from home. This is an extraordinary measure - the school district is responsible for procuring services, but we wanted to help the process along. Well, we have managed nothing for the most part, and although it might have been lack of skill that in the end got in the way, it wasn't lack of trying. People who are in the position to help us are not willing to go the extra mile to do so. That is the hardest part for me to figure out. If I was in the position to help someone out - and I knew I could make a difference in a child's life, I would bend over backwards. In fact, I have done that not only for my own children but for some of the families who I have helped advocate for. And it isn't even my job!

I have had people tell me they want to help us - I tell them what we need help with, they then back away. I offer money and am told they don't want the money - they aren't in it for the money. Sounds unbelievable, right? The truth is, they don't want to help either, they just wanted to hear themselves say they were going to help. Wanting to do something and actually doing something are very different things. The truth is I offer money to everyone who helps us because the level of work needed for Zach is hard. It is tiring. It is lonely. It doesn't get you a lot of praise. It can feel futile at times and let's not forget it can be gross at times. But it's what needs to be done. We all need motivators in our lives to help us get through the tough stuff.

I am saddened by not sending Zach to school. The school had a nice program, it just wasn't right for the level of intensity and individualization he needed. On top of missing some of the great professionals that we had to work with, I believe he liked it. Do you know how hard it was to take something like that away from him? It's kind of like all the food we cannot let him have because we know it isn't right for him. I want to give him things that he wants of course, but I have to deny him those things for his own good. I just wish I didn't have to deny him so much.

Having Zach home has lessened the stress around the house. We are no longer wondering what is going on at school. I feel as though I can follow through with what I should be doing with him better. We don't have to worry about him getting food he should not have. Steve is able to concentrate more on work since he is not helping in the transportation of Zach to school and helping prep breakfasts and lunches.

For me, personally, things have become more stressful. Getting him the appropriate services is extremely difficult. But I keep on thinking that one day I will be glad we did it. He has another 13 years to enjoy the school experience. This does allow some more free time for just him and me, and I look forward to taking advantage of that. I am hoping that Steve and I will eventually be less stressed out, and Sophia will not have to worry that the constant tension in the house means that Momma and Daddy are going to live in separate houses.

Zach has made progress. He is saying more spontaneous phrases. He is learning to ride his tricycle independently. He can identify more objects than before. He is sitting better for stories and helping to point out pictures in books. He is learning to get himself dressed and undressed. Sleep is another story for another post. We are still working on potty training, but can at least claim that he is schedule trained for peeing. I will take that victory, but I won't retreat, I will forge ahead through the smoke cloud.

One day I will be able to breath more freely again.

Quickie

2010-09-01T18:33:00.003-04:00

Every time the blog goes blank is usually a sign of one of the following:
1) I am doing my very best to manage through a rough patch.
2) Things are hopping.
3) I have taken up a new hobby such as underwater cat grooming and am totally engrossed.
4) I have taken a Latin lover and am enjoying the Caribbean with my new found friend.

OK. Well, probably not 3. Definitely not 4.

Emotional times for me right now. I have started to write several times in the past few weeks but can't seem to push a post out.

There is vacation, activities, school, upcoming appointments, and changes.

I am, in all likelihood, in need of Valium, but lack the backbone to take one let alone the wherewithal to get one.

I ask for all my readers of faith to send prayers and for all my readers who are not to think of us during this time. It is, for some reason, a very turbulent time for us, even though I am feeling confident all will be well in the end. I promise a good post with the next few days.

If nothing else I will make sure to get pics up. I am sure you would all rather see my beautiful children anyways over reading my revealing yet self-absorbed, grammar faulting, typo laden, incontinent ramblings.

What Get's Me Through: Part 1 - The Gift of Time

2010-08-13T00:10:00.000-04:00

I am a boatload of stress. Some of you in my shoes understand why. In all likelihood, some of you think I am overreacting. I can honestly tell you that if I see Zach initiating verbal communication with me and others on a regular basis, my stress load will be divided almost infinitely. OK not really, but it will go down at least 50%. I promise.

I tried to offer my friends with children some perspective: you worry about development a ton in your kids. You compare them on occasion. You may have young children mother regret- you know that 45 minutes you take to drink a cup of coffee and facebook your friends? I know a chunk of you feel bad mommy guilt for sticking the kids in front of TV during this time. You think you should have done something more engaging with your child, that because of this regular indulgence you have taken (that when dealing with your kids all day, may be the only thing keeping you sane) in some level of consciousness makes you feel that he might not take that AP class one day resulting in community college over that private school, or worse, perhaps much worse, your nightmare, your child doling out fries and burgers at MCDs or BK. Oh the horror!!

Well guess what, your nightmare is my dream. If Zach can one day communicate and have the self care skills to manage a job at a fast food restaurant, that would be a major victory. Now can he do better than that? I am not going to lie, I am shooting for the stars; I want that college education and professional job for him. I want as much that is normal to me for him as possible. Why? Is it social status or money? Not really. My two biggest concerns for Zach: I desperately want to relate/connect with him and I want to make sure he is safe and capable of defending himself in a world that can be hostile.

Anything is possible. (Hope) What is going to be is such a mystery. (Fear)

I am a girl with a plan. I can take mystery to some extent, but I want to feel like I have some control over my children's future. With Zach, I feel like it is much harder to feel like I am making that positive contribution. Stress. Every decision we make now feels like it might impact the quality of his life to such an extent that it is the most amount of pressure I have ever felt. So I have written down some of the things that help me to manage through my day without anti-depressants (at least for now), without anti-anxiety med (again, at lest for now), and without turning a complete nervous breakdown (although little mini ones are allowed.)

So I have begun to write a series to help me establish in my upper conscience what is helpful and what isn't: what I am thankful for, what helps get me through the day

Today, my first topic is the gift of time, the #1 offering someone can make to help us out. The gift of time comes in a couple of different forms. Simple playdates with my kids is a really big one. Having us over for dinner is another. Coming to the social events we host is yet another. Calling me up and making me leave the house to do something fun is right up there too.

Playdates with friends is critically important to us - some with kids who are diagnosed, some who are not.

I have a friend whose son is doing well and has a smile that lights up the room. She has always been so gracious to me and my husband, inviting us for playdates or excursions. This woman always is in action , thinking of her son and his diagnosis, referring to professionals, other families, taking classes, signing up for programs, and in the free time, she works with her son. He has made remarkable progress. She is a single parent with no college education, yet I have seen her efforts and she is as intelligent in her decisions as someone with a PhD in child psychology could be. She has impressed me for sure and given me the desire to fight and not care what others think.

Another friend has a son 6 months younger than Zach. They have gone all out in their interventions, biomedical and therapy, and there son recently tested as having no deviation in skills from typical peers. This family has scored a victory for sure, but has also shown me, once autism enters the picture, there is always this fear that doesn't go away. Although he is so capable, Mom cannot get over that he could once again regress. She also shows little fear when it comes to keeping her family operating in this world. She constantly challenges her family taking them out into public spaces with strangers. She is a fierce mother for sure!

Another friend has an older non-verbal son with an ASD. She is stays in contact and frequently tries to get me out of my shell. She is one of the most positive people I have ever met and I am hoping that one day some of that will rub off on me. In the face of adversity, she keeps on smiling and I love that about her. She invites our family over to dine or swim with her and her son. She tempts me with social occasions that I tend to shy away from.

There are those friends who don't have children with an ASD - but keep us in their social repertoire nonetheless. I have a friend who recently had us up to a camp they rented in the Thousand Islands region - and the kids loved it. And another friend with three beautiful daughters who has watched Sophie on occasion, however, recently broke my heart by announcing that they are moving to Albany.

There are those of you who read and comment on my blog, possibly offended at times, but show support nonetheless. There are my facebook friends of all varieties that chat with me and comment on my status.

Some members of Steve's and my family have made some efforts too. It is hard for some because they live far away. Others have disappointed, but I love them anyhow. I am always amazed at how hurt I am when my family doesn't show up to events that I host. I think that I am sometimes oversensitive. I have a hard time shrugging these things off. But I think I have come to some realization that my priorities in life and theirs are different, and I need to find a way, put up some boundaries, so that our differences don't cause us to totally be toxic to one another. Some people would say to cut these people out of my life, but the fact is, I doubt I ever will. It's not my personality. I love them and need to at least know of their journey through life although we might not be intimate the way I would like.

A neighbor talked to me the other night for an hour. She was so sweet and we laughed. She does not know of Zach's dx. She is busy with four kids of her own. She keeps on pushing me to go out running with her and a few other women in the neighborhood. I know she is right. Trying to make it fit in the schedule is another topic. I like that she hounds me about this.

There are likely several other items I could mention, but I think you get the drift. Acknowledging my children's or my presence is a gift more valuable to us than just about anything else. Thanks to all of you who took a moment of time out of your busy schedules to think of us, send us a note, give us a call, send an email, make a comment, etc let us know that you care.

This experience has taught me this:

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”

Zach has given me the courage to deal with things I normally would have avoided all together: take on bureaucracy, ask for help, stand up for what I know is right. I am so grateful for those of you on Team Zach which keep me going on days when I think I have nothing left.

Potty Training Bootcamp

2010-08-09T10:35:00.008-04:00

****** WARNING: THIS POST WILL DISCUSS BODILY FUNCTIONS *******
Potty training. We have read a few books about this, and basically decided that the longer we wait, the harder it will be. It is a necessary life skill that above any academics offered, or any other social grace he could learn, will provide the most opportunity for him in his life. I summoned up the courage to make an attempt. Last year's attempt certainly left me a little gun shy. The kid quit eating, drinking, and pooping for 3 days. This was downright scary for me - my child refused water!! But the silver lining in that bad episode was pointed out to me by our pediatrician: The kid was smart enough to realize that food and drink evolve into waste product, and he attempted to take control of the wheel. We decided that Zach knew he wasn't ready.

OK - so as altruistic as the decision to potty train might sound, it also gave me an excuse not to shampoo the carpets in the house for another month or so. Plus, Steve and I had an agreement that we could not have more than one thing at a time peeing on the carpets in the house. So, if we get Zach potty trained, we can start considering that pet dog Sophie and I are gunning for.

I made the decision to proceed, informed his school and his itinerant providers (home therapists) and off we went roughly three weeks ago. The first week was tough, he showed little cognizance of what was going on. We couldn't keep up with the amount of clothes getting washed! Second week, we bore witness to pee entering the actual potty. At the tail end of week 2, we saw way more pee entering the potty than hitting the tidy whities. HURRAY!! Unfortunately, BMs had not been quite as successful.

Until we potty trained I never noticed something so terrific about Zach: he prefers our company than to be by himself. (Weird for an autistic kid, right?) My observation is that when Zach leaves the room from where Sophia is playing or I am cooking or whatnot, that is a clear indication that he is going to have a BM. Such a strange way to find out such a terrific attribute.

But as much fun as this must sound (*sarcasm*), it does come with it's moments. First off, as casual as I am about discussing this, make no bones about it, I do not like to be urinated or defecated on. Oh yeah. Nor do I like being vomited on. Why do I mention this? One afternoon, after Zach's itinerant provider had a good session with Zach, Zach walked up to her and gave her a cracker he had been eating. That look meant one thing. She was oblivious, I was not. I had seen that look in his face before: barf was coming our way. As the running in slow motion has come to be a common event in our house, I got to Zach in time to cup my hands in front of his face and quickly move him over our hardwood floors as opposed to our wall to wall carpeting. And he let loose. As I captured the product, Zach was so startled that he then proceeded to urinate. Wild times, I'll tell you. It reminds me of frat house parties minus the beer and sorority girls.

Then there was the trip home from school where I decided, ignorantly so, to drop off the spoils of our garage sale to our bank. Being that I had a lot of change, I decided to enter the actual credit union as opposed to the drive thru. They have a change counter in the bank, free to all members. As I entered the second set of double doors, I realized we were in trouble. It was member appreciation week, and there were lots of youngsters coming at us asking if we wanted candy, popcorn, or if Zach wanted to play a game. I was flustered with all the unwanted attention, so I can only imagine how Zach felt. As I scurried to the change machine and had Zach dump the change in, I was growing weary already at the fact that we had lots of eyes watching us.

Before y'all rip into me about bringing my potty training/brief wearing toddler into a public space with no capture mechanism in place, I have to plead that I was misled prior to this journey to the bank. When I picked him up from school that day, the TA's told me he had no accidents and did great! Knowing they had just put him on the toilet prior to is release to me, I felt very safe. I was not to realize the truth until I went home: Zach had held his pee for 17 hours. This is not doing great, although it might be accident free. And the story continues...

Back to the bank: I then went up to the island to fill out my deposit slip and a young girl helping out with the bank "festivities" offered to play with Zach while I completed my transaction. Feeling that this may speed up my transaction time, I decided that playing with the Wii within 10 feet of me was fairly safe, so I acquiesced. As I finished completing my deposit slip, I glanced over to the Wii prior to walking up to the teller. And there was that look again along with the leg tilt/knee bend. Once again, I felt like Lee Majors as the slow motion effects took place and I ran to grab Zach. But it was too late. I made a dash for the bathroom and off we went. I took his wet shorts and undies off, cleaned him up, and sat him on the potty, explaining to him that pee goes in the potty, once again. I ran his clothes under water and rung them out.

Then I thought: "What the hell am I going to do now?? I am holed up in the bathroom with my son with autism, with soiled clothing, and a host of bewildered and unamused spectators awaiting for me out in the bank lobby to rectify this situation." I put a plan together in my head, "He has clean clothes in the van." And then it struck me, my van keys were out on the island where I was filling out the deposit slip. Then it really struck me: I had left $500 in an envelope sitting out on the island unattended. OMG!!!!!

Pride has been gone for years. Here goes nothing. I would get him dressed in his damp shorts. Wrap his underwear in paper towel and stick it in my pocket. Head high, I would carry Zach out of the bathroom, make a dash for the counter and grab my keys and envelope and promptly go to the car, avoiding eye contact as necessary. No time to waste, I exited and was given a grace from above. One of Zach's teaching aids was smiling back at me. She said "Hi! How are you?" and then noticed the feared look on my face. She looked down at Zach, and realized what happened. She then asked if I had dry clothes in the car, which I did. She told me, "Go get them. I have him."

That face looked like a light beam shown from up above. Not only did I get a change of clothes and get him dressed. I decided, that I would complete my transaction. And I did. And the tellers did not look happy about it. But I did not really give a rat's patooti.

As we exited the bank, I looked over to the young girl and mouthed "Sorry." She looked back at me and I realized someone had pulled a throw rug over where Zach had done his business. I then mouthed "Thank you" to her. And we left.

Here we are in week 3 and Zach has not had an accident in 3 days. We went to watch the Syracuse Chiefs play last evening and he even did his business at the stadium. We are not out of the trenches yet - Zach has yet to initiate his sessions by notifying me he has to go or entering the bathroom by himself. But this is substantial progress, and has affirmed our decision that it was time for him to learn. It also will be a sign to the professionals out there, that once again, Steve and I were able to determine that Zach was ready to learn something, and not wait for someone else to make the call.

Way to go Zach!

Another Day in the Life of Luxury

2010-08-03T23:24:00.011-04:00

It may have been quiet on the blog, but things have definitely not been quiet at home. In fact, things have been hopping so much, a shower is often a luxury, let alone an hour to write down the events of our lives. Lord knows that I am never proud that these posts are far from proofread or edited and my grammar negligence must be patently obvious. Especially becuase I used to be such a stickler for these things. Now, I just don't care. OK not true. Perfection was never achievable in the first place. My desire to attempt to reach it has now faded as well. In the case of my writing, unlike any other event in my life, I have decided to run with scissors.

This is probably a good thing. I am not sure if I was a type A or not, but if I had to wager a guess, I would say that I was pretty close. Life has happened and if I was a type A, you certainly wouldn't recognize it by my current behavior. (Type A referring to personality theory in which individuals can be described as impatient, highly competitive, ambitious, aggressive, having difficulty relaxing.)

Things are falling of my plate left and right. I cannot accomplish much of anything. I am taking each day as it comes, and I am getting the base minimum accomplished. I feel that my attempts at advocacy for Zach has been stifled by an inefficient, ineffective system whose only goal is to self sustain. I also know I have "hit the wall" (runner's speak) in this marathon and am pushing through waters that feel more more viscous than 20 pounds of gelatin in an ounce of water.

In an effort to not feel like I have not totally failed my beautiful son, I have attempted to bring a smile to his face every day I can. This summer we have managed trips to Thunder Island to play at the water park, Wellesley Island to swim with friends at their cabin, the sunflower maze in Camillus where Zach resisted in fear at first and proceeded to run through just about every loop in the bee shaped maze, swimming at Gilly Lake, swimming in our little pool, playdates at a few friends houses, lots of hugs and kisses in between these events and the endless school and therapy.

I have also entered him into Potty Training Bootcamp. (To be discussed in another post)

Sophie has had swimming lessons, ballet camp, soccer/basketball/lacrosse camp, birthday parties, and this week vacation bible school. She has enjoyed our outings and loves spending time with her grandmother and friends.

Amongst all of this, we had a successful garage sale where nearly 85% of our baby items are no longer in our possession. So strange to see them go away. So definite a symbol that our life is in a new phase.

Ballet Camp

2010-07-17T06:05:00.007-04:00

While Steve is at work, Zach is at school, and I am at home eating bon bons and watching the soaps, Sophia has attended Ballet Camp. One week every day for a few hours. Perfect. She got more out of this than she does the last several months of ballet lessons.

I often feel so neglectful of her. I am actually thinking of looking for someone to come and do activities with her a couple of times a week to give her the 1 on 1 she sees Zach getting. Any interested parties out there?

In the meantime, I got to feel what it was like to be a normal parent again - albeit for a short time, by attending her end of dance camp impromptu recital. Of course, this is a joke, because I am quite sure I am the only one in the room who began to tear during this. Geesh. I am so overwhelmed with what she can do and who she is. I laugh, because meanwhile I cry so very little at things, that I surprise myself. I know how sad/angry/frustrated I have been - yet nothing. But observing Sophia do her thing just sets me off.

After the recital, Babcia Morphet, Sophia and I visited Friendly's as a girls outting to celebrate us Morphet women being together. First thing I noted: Sophia knew exactly how to handle the restaurant thing although we barely go out. She made appropriate requests of the waitress and didn't defer to me to handle anything. I realized that this sophistication has caught me off guard and then I reminded myself: She is almost 6!

And then there is Zach. New allergy results are in - cashews and pistachio nuts are out! We have given them to him frequently and never noticed anything, but apparently, these are out of all allergens, pretty heavy duty. Oranges and soy were up there too. Milk and egg yolks also made the list - but what didn't was gluten (wheat, barley, etc.). We are meeting with Zach's doctor in a few weeks to discuss. I am wondering if we might be able to start adding it back in to his diet this fall??

Other test results indicated an iron deficiency. The pediatrician's office called in an Rx. Then I received a call from the pharmacy stating that insurance won't cover this because it is considered a supplement. Uhh, what? There is a test, it shows a deficiency, the doctor wrote up an Rx, this is a supplement? How come my prenatal vitamins were covered?

Poor Steve. Once again, I gave him marching orders to go to HR and ask them to look into this. The response: the item is inexpensive. Huh? $11. Yup. We are quibbling over $11. $11 a month that is - making it $132 for a year. So Zach's therapy is too expensive to cover and Zach's Rx is to inexpensive to cover. Huh? Yes, I understand the concept of policy - and this insurance policy is navigated to suit someone's needs - but not ours. What have we been paying into for all these years? Again - I am confused by the prenatal vitamins being covered but not the iron. Ugghh.

If you are thinking that the picture above has some kind of special effect - I believe that special effect would be fingerprints on my lens - likely caused by a 3 or 5 year old child needing to touch things that I have told them not to. Uugghh.

From

So you read my posts do you?

2010-07-07T09:49:00.000-04:00

A post I started from awhile ago....

Met with someone from Zach's school and from Sophia's school all within 24 hours. I should feel better about my kids and what they are up to, but I just don't. I am definitely someone who worries. I cannot believe how much like my mother I am that way. Ahhh Rosalie.

My concerns have been expressed. There is some relief in that. But life experience has taught me that there is another part of this equation: what will be the reaction to my action? I sometimes think that these events are more like going to a confessional: Forgive me school, I know that I am a bad Mom, it has been 4 days since I last checked over Sophia's schoolwork in her backpack. However, I also see that this and this is going on, can we try this? Will they take me seriously - this near manic mother with bags under her eyes, cortisol in her waist, and no background in any of this stuff? One walk into a preschool or a kindergarten classroom and I know that life is crazy for these teachers. It's a bunch of little kids for Pete's sake! It's controlled chaos. I don't think I could manage in that environment very well for very long. Wait a second - I am living in that environment all day long! haha It's just not 24 of them.

I feel that Sophia is likely getting what she needs at this point. We can do some follow through and preemptive skill building at home. She can learn, she is above where she needs to be cognitively, she has a social repertoire that is working and has built a friend base up. We still have those pesky fine motor skills to work on (what feels like endlessly) but she appears happy, healthy, active, and moving in the right direction. A parent will always be concerned about their child, but rest is assured that Sophia is doing great for now and will likely continue that in the next year. I have asked for a copy of the 1st grade report card so that I can focus on building the skills in her home environment that they will be working on next year.

Zach I am just not as sure about. I have these feelings that he is not progressing as he should within the context of him being in an environment that should be working on getting him up to speed. And that has made me think - perhaps I don't understand the goal of this intervention. Is it to get Zach up to speed? Or is it to make sure Zach can go to school and not cause too much commotion? I would love to hear from others out there, mothers, fathers, teachers, therapists, what they perceive early intervention and special ed to be all about.

I think the answer is a bit of both - I would like to think they are adapting their teaching styles to my son's learning styles to optimize his learning potential and have him make progress at a rate relative to that of his typical peers.

A trip to the developmental pediatrician didn't resolve my concerns. He agreed after observing Zach that his current program might not be the right fit for him and recommended trying to get him into a 2.5 hour program and increasing his home therapy intensity.

Back to now.

I like Zach's school. I think the therapists and teachers are good. The problem is just because it is good doesn't mean it is right for Zach. Truth be told, Zach needs more intensity right now. With appropriate intensity he masters skills more readily and we have seen him easily transfer these skills into larger/different settings, referred to as generalization. The past two doctor's visits for Zach have both specified getting him a one on one aid. And here I am. And now you know why the posts haven't been coming as frequently, I am overwhelmed with what to do. I don't want to undermine his school. I think his SLP, OT and PT are top notch. However, there has been a large turnover in his classroom that has me concerned. A few of the now departed therapists (some have left on their own accord, others were terminated) have indicated strong discord and organization in the classroom. But I fear losing the continuity, the consistency, the ability to get out of the house and experience others in a classroom setting.

Zach's last day of school was a picnic. The school extended invites to the family to come join activities and lunch. They even put on a concert. And that is what made me sad. They were doing outstanding things for the kids who get it. I was so excited to see a friend's son (who is dx'ed) dancing and mimicking the movements of the teacher. But on the stage, even amongst other kids with ASDs, Zach looked lost. He was staring off into space. I came home and told Steve that Zach appeared more autistic at school than he did at home. He just doesn't seem there yet.

He is attending summer session there currently. I am trying to figure out what to do. I am consulting with the professionals and talking to other families at his school, in the other classrooms as well as the one he is in, and other parents whose kids did home programs. I am torn. Steve defaults to me. This feels like more pressure than just about anything else I have had.

So now my delinquency is explained. This road we travel is a maze with pitfalls located here and there. This one feels deep. Let's see if I can get myself out of this whole that I have entered.

Fathers

2010-06-21T10:25:00.014-04:00

This past weekend was Father's Day. We were invited off to Geneva Lake to spend the afternoon with my brother and his family as they rented a home for a week on the lake. Driving and hour and half each way was likely not Steve's idea of how he wished to spend his father's day. I felt bad, but felt this event was a nice offer and we needed to get away, even if it was for the day.

Steve was given the mundane presents of sports socks, a lunch box and a new cover for his grill - and the extra special surprises of a pencil holder with pencils from Zach and a coupon book from Sophia. The coupons included one for a hug and one for helping with the dishes (although she mentioned that she would need help with the dishes.) These little surprises put a smile on my face. I realized there are no gifts great enough for Steve.

I don't really talk too much about our relationship. It is strained for sure. But I know as much as it is strained, he is doing the best he can, and it actually is quite a lot. Steve is a pretty stoic guy. He does not throw compliments around, he doesn't act silly, he doesn't recount his childhood. What he does - he keeps us first in his thoughts and his deeds. He works his butt off at his job to make sure he can provide for us and just last week he received yet another award for his commitment to his work. At this point, he has a wall of them. For all his hard work and effort at his job, he has still managed to be a big part of our family. He does a good chunk of the cooking and is home nearly every night before the kids go to bed. He brings Zach to school, takes Sophia to soccer practice, and occasionally grocery shops.

I know that my heart is that of a mother, and I feel the urge to foster and grow my children. I also know that a father's heart is different, and the need to protect, provide and strengthen is on his shoulders. The world can be cruel, and I am sure that is one of the biggest concerns that Steve has, people being cruel to his children. Indeed, before we ever had children, let alone one with a disability, Steve was concerned about this. Steve and I are geeky sensitive types. This pretty much can make you a loser in a world where we have witnessed people laugh at other peoples pain, insecurities, weaknesses, failures. Steve is an incredibly capable person. He makes things happen that others can't. He is very smart, hardworking, and caring. I have always felt he could accomplish great things with this eclectic combination and he has. Steve is not the huggy touchy type, he doesn't say a lot, but he is hugely demonstrative in his commitment to his family and his obligations as a father.

Both of our fathers are no longer with us. This is hard for us. No one to show us how to swap out a faucet, play ball with the kids, all those grandfathery sort of things. I am sure Steve misses his Dad as much as I miss mine. We sure could use them. Sophia has begun to ask a lot of questions about her grandfathers. I can speak only for my Dad when I say that he sure would have gotten a kick out of her. And she sure has missed out on meeting a terrific guy.

I lost another father in my life about 2 years ago. The priest that married Steve and I was my childhood priest. He was very special to me and many others. When I lost my Dad, Father Champlin's sermons took the place of the words of wisdom my father once delivered. Steve enjoyed him as much as I did. I remember one of father's sermons where he asked people what a heart looked like. Some gave the symbolic description of red symmetrical shape, others thought of the more physical muscle with valves and ventricles. Father Champlin held up another representation; a donut. He said that the desire for love is filled through our relationships to others, and fills the donut and tightens that hole. We pursue closing that hole with friendships, marriage, and children. As much as we love others, and are loved by others, that hole never closes. He went on to explain that the hole can only be filled with our relationship to the Divine. When he died, that hole opened up a bit.

And last night, I said my farewells to yet another father. Father Michael, the priest who said the prayer service for Zach, will be leaving for a new parish where he will have his first chance at pastorship. He had dinner with us last evening. This has been pretty difficult for me as I am loosing my spiritual advisor through this journey. I also feel like Team Zach is down one right now.

I am grateful to each of these men and their contributions to our family. I am sad at the losses endured when they went away, yet grateful that they were once in our lives. I hope each of these men know what they mean to us. I hope that Steve knows that our lives are better because of his dedication to us and we are so happy to have him as the rock in our foundation.

Mud

2010-06-17T09:06:00.007-04:00

All day yesterday we went between rain and sunshine. It was crazy. Steve had to work late, which left Babcia, Sophia, Zach, and I to take care of business ourselves. After dinner, which involved rice, which meant it involved a huge mess, I was set to throw the kids in the tub. Zach darted from the dining room table, with me chasing and watching all the little grains of rice getting tracked through the house. uugghh

He than ran into the mudroom and gestured towards the side entrance door and said "G'outside, play". I was flabbergasted! I said "Of course we'll go outside and play!" and called for Sophia to come join us. In that moment after, he then grabbed my hand and pushed it towards his shoes, and said "shoes!" to which I responded with "Let's get shoes on!" And I promptly did so. We opened the door only to have our neighbors cute puppy run in our house adding to the craziness of the situation - of course he was hard to get out - there was food on the ground! (mostly rice) so why would he want to leave! I grabbed a few peas and got the dog out the door. Sophia came running out to play with the dogs.

It just happened that a couple of the neighbors were out for walks with their dogs and they were off their leashes. At one point, one neighbors dog mounted the other. Sophia saw this and said:

"Those dogs are getting all friendshipy"

Then little Zach went on his little obstacle course. We are in the process of redoing the landscaping and painting the house - and he loves that he can hug the edge of the house without those pesky shrubs, flowers and bushes to get in the way. And then he discovered that where Daddy had pulled out a big bush there is now a big puddle. And boy did we get a bath later on.

Please click on picture below to bring you to the video.

From Flix

Reading Revelations

2010-06-14T15:39:00.018-04:00

There are only so many days that you have in this life. There are only so many chances you have to do what you really want to do. The clock is ticking constantly in our world, and quite often we choose to ignore it, putting things off until another day. Although I try not to reference it, there is the additional clock that early diagnosis of autism has put into our brain. Some research has indicated that treatment has the best results when provided before the age of 5. Tick tick tick tick. When asked his age I say 3 and a half. But in the back of my mind I see the days in the months; I know it is 16 and a half months until he is five. Tick tick tick.

This is the pressure of having a young child with autism. I have read various reports that indicate that children can make tremendous strides even after that age. In fact, I have read kids whose parents finally find an effective treatment when they are as old as 13, and they become able to read and write or even speak. An interesting story is that of Sue Rubin who was diagnosed at age 4 as severely autistic and retarded. She lived in her autism bubble for years. At age 13, she was introduced to Facilitated Communication where she went on to learn how to type, and graduated high school with honors. She is non-verbal and can function independently. I believe she is currently in college. I think FC has a limited audience in those who it can help, but it appears to have made a difference for her. As nice as these few stories are, it still hasn't assuaged the pressure; more research has indicated the younger the better.

Tick tick tick. So there is a pressure to get the most effective treatment possible for Zach prior to his turning 5. Is his school the best option for this? What is working? What isn't? Who can get the most out of Zach? Who isn't? My mother used to tell me that her grandmother used to say to her: "Little children, little problems; big children, big problems." I see how this makes sense with Sophia. As she gets older, her universe gets larger and brings with it the problems of the world. But Zach's issues are large - autism has thrust him into this larger universe usually left until adulthood - therapists, social workers, schools, doctors, lawyers, government, policies, laws. Blek.

I had the opportunity to hear the director from the Yale Child Study Center speak on education and children with ASD. It was a tremendous opportunity that I am completely grateful for. As someone pointed out, he was one of the first professionals she had ever heard, when speaking about kids on the spectrum, to refer to many of them as smart and very teachable. It was very motivational to say the least. I came out of the conference energized for sure. He indicated that out of a group of 8 children that he worked with several years ago, 5 went on to pass every one of their regents exams in high school! He mentioned that one girl was even in all-state chorus. But the thing I found most exciting was his emphasis that all the kids had autism "with a capital A" meaning not PDD-NOS, not Aspergers or High Functioning Autism. They were all classically autistic - previously referred to as Kanner's syndrome. The 5 hours flew by. As I looked around the room, I realized that out of the few parents there, I was likely the only one that was accompanied by their therapist. In fact, she was the only BCBA in the room. I realized I did have something to be grateful for right then and there.

But while this energized me to some degree, the pressure has actually mounted because of this. I have been neglecting some things about Zach's programs out of exhaustion and not wanting to be obtrusive or confrontational. I know I am no expert, but I can see some clear differences between what is recommended for kids like Zach and what he is receiving. It is up to me to see what I can rectify. This is going to be a lot of work.

Tick tick tick. Is this really how I want to spend my life? Ummm.... no. If I were to die tomorrow, would I be happy with what I was leaving. Ummm..... no.

I make sure to have moments to treasure. One of these is observing Sophia flourish. I watched Sophia get on the bus this morning as I do all mornings, and I felt joy in watching her independently walking to the bus, backpack on her back, smile on her face, ready to face whatever. And then my heart grew heavy. How can this instance bring me joy and sorrow at the same time? The juxtaposition of her brother. I so want Zachy to be able to do the same.

My little girl appears to be doing well. I met with her school psychologist, aware of my concerns, who said she has no indication that there are any problems with Sophia at school. I will be meeting with Sophia's teacher next week to discuss her future and what the expectations will be in first grade. But along with Sophia's development, I also am concerned with her happiness. That is one of the things I want in my life - to cherish my children, both of them. I made a point that Steve and I were there a few weeks ago at her school birthday party. (They were celebrating summer birthdays in June) and I signed up for a read to the class opportunity. I have not been in Sophia's class once all school year with the exception of these two events and one open house and one parent/teacher conference.

Can you believe I was actually suffering from stage fright? You should have seen me with piano recitals years ago! (I used to barf my brains out) And you wonder why I never continued on with that music major... Anyhow, I brought three of my favorite books for the class, "Diary of a Worm", "Skippyjon Jones" and "The Magic School Bus: Waterworks". As I read the first book - I felt like I was doing pretty good - they seem engaged and interested. The second book was a bit longer, but my mangled Spanish and Mexican accent kept them mostly engaged. The third book I was going to have to use another tactic - so I laid heavy on the eye contact. And something did catch my eye. Amidst the middle of this crowd of kindergarteners sat a little girl in a dress and... well... no underwear. It took everything I had not to react and to keep on reading. At least I know that I am not going to lose the mother of the year award this year to this mom; I have managed to get underwear on both kids prior to leaving the house so far all this year. I got in my car to leave, and I laughed so hard, like I hadn't in such a long time.

Glad I took the time to be with my daughter. The Divine even threw in a laugh for doing the right thing and taking the moment to appreciate my daughter.

Disconnects

2010-06-12T13:17:00.009-04:00

Prior to realizing Zach's diagnosis, I felt that having children had made a huge impact on my life, much the same as many other mothers out there, I am sure. I was aware that having a child was going to change everything, and it has, but I wasn't sure how it would. While the change was sometimes construed as difficult, I was amazed at some of the positives. Being socially awkward, I realized that children are a great common denominator with other people. This allowed me to relate to people in a way I never felt I could before. In my career, and therefore many of my friendships, I was mostly surrounded by men and had learned to navigate the social uniqueness to them. I at some point preferred being around men (well geeky nerdy types at least) because it was the bulk of my exposure to others. When I first had Sophia, I mostly commiserated with mothers, and I felt as if I didn't know how to speak the language. I became impressed with my gender - because the birthing process and early days of infancy are excruciatingly demanding on a mom, yet we do it and encourage one another in the process. In the early days - there were playdates where I met great mothers and fathers that shared an interest in parenting and sometimes in the individual too. These relationships meant so much to me.

Then there was the connection with my mother-in-law. She was such a help when she was in town. Once strangers, then connected only be Steve, I was extremely grateful to have her by my side when I was trying to figure out some of this baby stuff. Where I have never had any major issues with my mother-in-law, I found that when I had children, and witnessed her love of them, our relationship deepened. She had joined "Team Sophie" and then "Team Zach". And when someone joins your kids team like that, your bond is strengthened.

My relationship with my mother was one of the more profound changes I went through. I love my Mom - she is a great gal, but sometimes felt like we were about as opposite as any two women could be. I felt she never truly understood me. When I had Sophia (and let's just say she wasn't the easiest baby in the world) I was so aware of all the my Mom had done for me, and all our differences seemed insignificant. All I could think of is my mother having gone through all she did for me. I would always be grateful for that.

The other day when talking to a friend with a child on the spectrum, this terrific mother mentioned that she had a conversation with her own mother, and that at some point, she realized her mother could never understand the nature of her problems of parenting her son. As she told me this, she began to tear, and I realized that all that connecting that having a child does, is seemingly undone by a disability. Indeed, I feel this way.

I had the recent opportunity to hear a professor speak on autism treatment. As part of his speech, he emphasized that autism is primarily a social disorder, and not a learning disorder. I realize now that my son's autism may be contagious - parents of kids with ASD likely have social disorders too, some of them prior to diagnosis, but others a consequence of it.

First off, my very poor relations to my family. This has been heartbreaking for me beyond explanation. I am not going to say it is their fault necessarily, it may be not. But it is strained, to say the least, and I have given up on reaching out to many of them and asking for help. I need all the energy I can muster for my kids right now so I cannot extend myself any further. I feel they don't get it and there is no amount of explaining that will ever get them there. I feel they could make a contribution to Zach's success if they could take the time to learn and spend some time with him. Apparently, they are unable to do this. They do have lives of their own after all. I always thought that if I really needed them, they would be there. Perhaps they don't realize our need. Perhaps, they think I am full of crap that autism is treatable, that Zach is teachable, that intervention makes a significant difference, that they could help intervene. I am obviously not a good salesman.

When this mother cried as she realized the disconnect from her mother, I realized that my relationship with my mother has changed. My mother is a proud woman, I was scolded throughout my lifetime for bad hair, makeup, and clothing. She was definitely one of those "what will the neighbors think" sort of people. When I chose engineering as a major, she scolded me; she had wanted me to be a lawyer. I never was quite sure if this was because she thought my abilities were better suited to law or if she just found it to be a more prestigious degree to have in my back pocket. Even upon getting my masters, first one in my family and 100% financed on my own, I never received kudos. I sometimes wonder if Zach and his behavior would not cut the mustard. While I don't feel my mother is embarrassed by Zachary, she tells her friends and people she comes into contact about him, and is always surprised how many other people are touched by a child on the spectrum. She has read a few of the books I passed to her on autism. She hugs him and smiles at him when she sees him. She comes around and visits him. She pays attention to the news reports on autism. I see her love him no differently than some of her uber-achieving grandchildren in medical school or on scholarship at a top notch university. I also think she would rather me just accept him as he is, and not be so impassioned in my attempts to get him to communicate better. A disappointment once again, the connection once so heightened, now diminished.

But, at first where I was angry with some of my family, I now know it appears to be the nature of the beast. There is a relatively new TV show on NBC called Parenthood. I have been able to watch episodes online at their website. I have made it a point to watch the show since one of the storylines is of a child newly dxed with Aspergers and the executive director and a writer for the show has a 13 year old with Aspergers. This show is not a feel good show for me, but has offered me a perspective. Two episodes in particular have made me feel like I am not just a raving loon, but a parent of an ASD child. One of the episodes, a cousin to the Aspergers child is thought to possibly be on the spectrum due to an obession that pops up. The mother of the ASD boy jumps into action, providing books and references to a doctor. At one point, this couple is almost excited that a sibling is going through the same thing. The sentiment is expressed that they didn't want to see another child with a disorder, but that they wanted someone else to connect with, to share and understand the journey, because you know what? You just cannot put it into words, you cannot explain it. Glimpses here and there are just that.

The other episode that offered me some thinking points involved the family trying to get all there other members involved in a awareness walk/fundraiser where they would compete as a team. The day of the race, only they end up showing up. Everyone is so involved in their own lives and their own issues, it just is too much for them. This reminded me of a few of the walks we have been to, where I watched some of the other families, who had created teams with matching t-shirts and all. It used to hurt, but now I just am glad to see people supporting others.

A line from this episode, uttered to a teenager with a broken heart, really struck a cord with me. I have edited to suit our situation:

"This is hard. You can't go through life allowing pain dictate how you behave. It's easy to sit here ... and wallow in your hurt feelings. It's hard to rise above it. This isn't about you... this isn't about [family member name], it's about _____" Blank filled in with Zach.

And there you have it. I try to show my support of my other family members and their own crisis and concerns. I am sure that they likely feel let down by me on some things too. But first and foremost, I worry about Zach and Sophia. Whatever's leftover, I divide up and give out. But right now, there isn't a lot left over.

And then there are those friends. People have quit coming around or calling. Some of it is natural life progression. Some of it is my incessant need to take any topic and find the degrees of separation between it and autism. I am so-o-o annoying. I sit there desiring so much for normalcy, or a mere glimpse of what life was like before autism entered the picture, and I somehow sit there rambling; always having to relay the latest research I read, the current state of legislature or insurance reform, the disappointments of the families I work with. It is a complete out of body experience; as I sit there watching myself ramble on, I yell at myself "No - don't go there. Ahhh geesh. Why'd you have to do that!" My brain is constantly processing our situation, the situation of other families on the spectrum, and all the knowledge I have taken in, and it sometimes seems to have to just come out of my mouth. It is no wonder that no one in the basic hemisphere wants wants anything to do with me right now.

Autism has helped make my social impairment worse with the the NTs (neurotypicals). Now those families in our boat with us? Sometimes I am treated like a rock star - they email me frequently, they want to talk to me, they ask me questions, I ramble on and on, and they seem to hang on my every word. The problem is, I can only seem to talk to them. I am traveling around this world in a bubble, the same bubble I am trying to break Zach out of.

I try not to isolate our family - we go to all the birthday parties, local events, local autism events. But I still feel isolated. But this isn't about me. It's about Sophia and Zach. So if it takes me being isolated to make sure my kids are not, that is the way it will be for now.

I am saddened by these disconnects we have faced. I wonder if there will be a time when I can reconnect with the world and those around us in a less profound way. As I told my sister that I wonder if the day will come where I don't have to chase kids around, changing diapers, making sure they don't get into trouble, she said with confidence, "Oh - it will come." I wondered if she said this with the ignorance of not thinking that we will never have that in our lives or if she really sees Zach progressing to that point. I didn't ask what she meant. I think I was afraid to know.

She called me later that day to say she saw a pilates class being offered close to my house. Would I be interested in going? I think of how I wish she could give Zach and hour of her time a week. But that's not being offered. I think of my stress level and how this may help. I take her up on the offer to check it out.

Memorial Day Memories are Made

2010-06-04T09:13:00.021-04:00

When you live in a suburb of a small city in upstate New York, you anxiously await this time of the year. Some may refer to it as summer, but around here, we refer to it as festival season. There is Greek Fest, the Balloon Fest, the Polish Fest, the Middle Eastern Fest, A Taste of Syracuse, Jazz Fest, Oz-stravaganza (Oz Fest), Canal Days, Scottish Games, etc. all to be culminated by the end of the season New York State Fair that ends on Labor Day. Well actually, no. The fall has its own blend of events and festivals so I guess the State Fair isn't the end of it. But you get the idea. We basically live for the season we can actually exit our houses without having to take 15 minutes to dress in layers that make us appear like we live in the Antarctic. Since we don't have the plethora of art galleries, museums, restaurants, and clubs of most major cities, we commune at these various festivals. Did I happen mention Steve hates crowds? To the point of shutting down. He cannot even handle family events always - when we host, he will often take off at some point for a short walk, or recluse himself to the kitchen and clean up. People often take offense to him being like this, but I know now that it isn't anything personal, he is truly overwhelmed in these situations. The great philosopher, Sophia, once said: "It's important to love someone different than you." Well, I do.

Camillus is known for many things, like Camillus Cutlery (now defunct), one of the few Octagon houses remaining in New York, high school lacrosse and the marching band, and the existence of many people who still wear mullets and recount glory days of high school. OK. So we aren't the most of sophisticated of towns, but there is the one event of the year that seems to stand out around here, and it is Memorial Day. People take this seriously, decorating gravesides, cleaning up the yards , ensuring the America flag is flying over, and the Memorial Day events including a 5k race, a parade, a convocation.

I had noticed on one of my many trips to the library that they were setting up a carnival in the village as part of the festivities. I mentioned it to Steve, and asked him if we could take the kids. I had to ask him, mind you: 1) out of respect as a co-parent of our beautiful children, 2) knowing his sensory crowd issues and 3) because there aint no way I am going on any rides (especially that spin you around) unless you want to add another Festival to the list, namely Puke-a-Thon.

Well Steve lucked out because the crowds were at bay. First ride encountered: the Fun House. Calling this a ride is sort of a misnomer, of course. It does not spin or move or gyrate. I did not intend to have Zach go on this - because I did not feel it would be appealing to him. So off Sophia went, but then Zach gestured again and again that he wanted to go. OK. So, there was no one around, what the heck. He entered and proceeded, and then as he came upon the the first crook in the maze and looked confounded about the purpose of the ride, the crowds appeared. So we can't explain to him the expectations of this, we can not direct him what to do, and he lacks the imitation skills of other kids. Oh crap. What was I thinking? I see the look in Steve's eye, and he wants to know what I was thinking too. So now Steve and I are staring and sweating as we watch our 3.5 year old autistic son in a ride that's purpose is to confound and confuse and there are witnesses to the event. Worse parent award is coming my way. A little girl around 8 enters. Her parents note the looks on our faces (mine of confusion on how to handle this, Steve's of wanting to divorce me for my stupidity in letting his only son, with special needs to boot, enter the damned thing in the first place.) I decided that yelling directions and gesturing which way to go would be helpful despite the expert's opinions that he has no receptive language. Than I noticed him watch the little girl, whose parents told her to slow down and show Zach what to do (not realizing the experts have told me he doesn't have much in the way of imitation skills) and he did it. Between this little girl and her altruistic efforts, my gestures and overzealous verbal prompts, and the fact that the kid has some serious power going on between those two ears, he made it through, climbing ladders, twists and turns, and here and there slides. I was so proud that he did it - on his own. I was relieved that I didn't have to send his sister in to fetch him. Steve was relieved that he didn't have to go in and fetch him. And I was relieved that a marriage hurdle was cleared. He liked the fun house so much, he would end up going on it several times, having mastered what to do by the third time in.

He liked the other rides too, and figured out the process of what to do quickly. It starts off with Mommy and Daddy walking you up to an entrance, verifying height requirements by making you stand next to some stick, then handing the homeless looking man with no front teeth which is a convenient place to stick the Marlboro a few tickets and releasing you into said homeless looking man's custody where you climb aboard and are strapped in. You enjoy the ride and when it stops, this same man, cigarette fully employed, once again comes to you, and you let him release you from your captivity, and look to exit where parents are now standing with grateful smiles. Voila.

Mom and Dad got to run together, kids got to see the parade, rides, had the family over for picnic. OK - so Steve had to go into work on Memorial Day,other than that, it was a nice weekend that we were able to enjoy together. A special thanks to Babcia Morphet for all her help in going on rides that spin spin spin and make me nauseous.

Life is not a pie

2010-06-01T23:54:00.003-04:00

here is this thing that happens when jump into the sea of autism: you find others alongside you, and you temporarily cling to them, as they are the only ones at the point in time that understand remotely what you are going through. They have children approximately the same age or with the same symptoms as your child. You ebb in and out of the waves as you first enter the water together. You share what you have figured out of the system that throws you in different directions - sort of like telling the others when hi and low tide times are. As time marches on, there is a pretty good chance that your paths diverge. Sometimes it is because you are doing different approaches, one might be doing ABA, the other Floortime, and yet another, just basic services. You may have chose different schools, no school and just letting kids be kids, or homeschooling. These different treatments generally don't divide us as much as a more obvious fact: some kids progress more than others. Some will tell you that they are progressing differently, which they are, but in terms of normalcy, and a possibility of arriving at it, there are those more obviously likely than others to achieve independently living.

I do not feel stabs in the heart when other children progress more/faster than Zach. But I will not lie, I used to. Now, I love seeing kids progress and love hearing those stories.

It's sort of like when I was single and my friends were getting married. Just because I wasn't married (and would not for some time, I was a ripe old maid still single at 30) didn't mean I didn't want to hang out with them anymore. They had managed a part of my dream I hadn't a little sooner, but that didn't stop me from dreaming of my prince charming and wishing them all the best. Those friends who had good marriages kept me in the game, they let me think that I could have my dream too. And I am 100% convinced that dreams are necessary; dreams are what make life bearable.

That didn't mean my heart didn't ache to find someone to share my life with, in fact, it did so much that I recall sitting in a friends car after choir practice one night, with the rain coming down, and asked her to pray with me. I asked her to help me ask God to either find someone or to take the longing in my heart away. It was within 6 months that I was to meet Steven. Supposedly, according to DH, he had said a very similar prayer at about the same time I did. I don't know if this is really true, or we was just trying to make me feel less corny.

Anyhow, I know that when I am with friends whose children are going gangbusters in the development department, neurotypical or not, there are these moments that I recoil into our little Morphet autism pit, a place where I try not to dwell for too long too often, but a break from pretending that Zach's autism is no big deal to me, that I am handling it like a champ, a place where I can feel sorry for myself and him and let the anger and sadness do its thing.

Recently, an old school chum contacted me through our reunion webpage. We befriended one another in facebook, and I, being the snoop I am, went through his profile to see all that he had become. He's a television producer now living the dream in L.A. Not what I thought he would be since he was very intent on music when I last saw him in like 7th grade and he was off to Interlochen. From what I can tell, he isn't married, but I am unsure of if he has children. I am sure my life is about the most unappealing thing he could ever think of - still in my hometown, stay at home mom, no plans for anything in the future other than keeping my head above water. I waded through his photos - news reporters, traveling and VIP rooms, and press badges... and something hit me. He had a group of his press badges in an album. As I perused them, I got a shock of feelings sent through me and it was not pleasant, at first I had no idea why. There was this one particular press badge that had handwriting on it- and when I saw it, I recognized it as his handwriting. Mind you, I haven't seen his handwriting in nearly 30 years! And then I recalled that in the 6th or 7th grade, I had a crush on him, most likely because he was the only kid taller than me in my class and he had an interest in music, and irresistible and hard to come by combination for my adolescent self. He wrote me a note that said he liked me only as a friend and then proceeded to ask my close friend Danielle out. Seeing his handwriting brought me right back to that time, that note, and the sensations of being rejected along with it. I was shocked at what a real and strong experience this was so many years after going through it. No - I am not feeling love lost here - but it was the first time I had ever been rejected, and I had totally forgotten about it until I saw this press badge. Repressed? I don't think so. Filled with other things, and some of them further and harder to handle rejections, absolutely.

Zach doesn't not have age appropriate verbal speech communication. He once had snippets of this - prior to his regression. He said "Please" and "thank you" unprompted spontaneously and appropriately, "oh no, what did you do?" At his 18 month screening, he even displayed some letter recognition, only to be taken away by the regression.

The other day, Steven brought home an iPad from his office. I, missing my days of playing with new stuff, delighted in it, and quickly went online looking for apps that I had read about. One app in particular that was published the 18th of May I grabbed first thing.

I sat with Zach and watched him delight in the new game, as he figured out how to push his finger around the screen, the big appeal of the iPad. A day later, he had mastered the movements of the iPad and he spelled a word on the screen as required for the game. When he got the answer right, and the game became animated to let him know he did it, for the first time that I can recall since before Zach's regression, he actually sought my eye contact out. He had this shocked and elated look on his face that was so evident that something was clicking in him. It was as if he was saying "Mom - I did this right? That's the purpose of letters right to make words? And words mean these objects, right? Mom - I get this, I remember how this works!" It reminded me so much of seeing my old school chum's press badge and the shock of recalling something from awhile back.

It took awhile for me to finish this post because into the Morphet pit I went with my bitterness as can be seen by the following paragraph.

But alas, the iPad will have to be returned, and at $600, we will not be able to buy one anytime soon. Therapy is running us around $1500 a month right now, and the diet, supplements, copays, uncovered medical expenses are tacking on non-negligible amounts too. Did I mention that Yale went up to $5500 for an evaluation? uugghh *sigh* I have heard that much of this should be on the shoulders of the school district or local government. Meanwhile, many of the things we request help for that others have had reimbursement for such as trampolines, swings, therapy are being rejected, too, and this one device that I can tell could be a huge help for him, will not even be considered. Meanwhile, how many civil servants are billing time to my son's case all while writing rejections to us rationalizing how they aren't going to provide him with services or whatever. Yes - that is a bitter taste is in my mouth, and it is likely time to recoil into that place when I just can't handle how stupid and unfair this stuff is. My son is being thrown under the bus once again.

Out of the pit I come...

I can see why jealousy or discomfort could be a problem between families with children on the spectrum. When little Joey gets something, and little Tommy doesn't, that's tough. When little Michael suddenly becomes verbal and little Andrew sits off in the corner stimming, that's tough. I am not mad at the other parents who get help, they deserve it as all those families with special needs should. I am not bitter as to why a child is speaking and Zach is not, they give me hope that Zach may one day do that, and that they will not be counted among those who will judge us when out in public and Zach does something strange. Life is not a pie with only so many slices to offer. The possibilities are always there and as endless as the starlit skies. Things may be unlikely, but so are nearly all innovations and big changes at one time. How many people would have believed cancers could be so treatable (as with my mother) or that we could check sports scores real time while camping in the woods or publish videos for all the world to see in a matter of 15 minutes of what felt like a miracle witnessed with their son.

For real?

2010-05-15T21:31:00.004-04:00

I have been looking at posted positions at various companies in the area. I have also been looking online for career advice and stumbled upon an article discussing inappropriate interview questions.

First came this quote:

"New college grads don't realize they [potential employers] are not allowed to ask anything about your health. Even if you walk in limping or on crutches," says Fisher. That extends into alcoholism as well. "You could walk into an interview drunk, talk about how you're always drunk, and legally they cannot use that information against you."

That's it all you new grads - go out there and tip a few before your next interview. Then this next quote nearly made wet myself:

Fisher points out that if you get asked about kids -- and if you do, indeed, have children -- be sure to mention that parenthood has not interfered with your career.

In other words - pretend you are a rug and lie. OK you mothers out there who feel that children don't impact your careers - who are you, what are you children like and what do you do for a living? I am not criticizing working moms - no way! I just think that people want us to say that raising kids is no sweat, and that is false. The only way this could possibly be true is with a lot of support, and that means a lot of money. So perhaps for those with a lot of money and support, this is true. Funny. I just don't seem to meet many of these women. And I am undoubtedly not one of these women.

I did not lose my job because of my children. I lost my job because of my priorities. Once again, I am concerned that when (notice I didn't say if because I am feeling hopeful) my kids read this blog one day, I never want my kids to feel bad that my career went down the toilet because of them. It went down because of me! I am now convinced that I was the world's lousiest engineer. OK - not the lousiest, but let's just say my heart was never in it the way it should have been. I know I never felt inspired like I should have been, although I am coming to realize this might have been the industries I worked in more than the job category. In my children, I find great inspiration. I am using every bit of education that I worked on, every work experience to deal with this crazy situation we are facing. I would almost say that I love my "new job", with the exception that I hate that Zach has some of the issues he has. But my heart is in it, 100%. It's hard, the pay stinks and I want to quit on some days, but I never will.

I have some concerns about Zach's progress. I worry that preschool is not an appropriate place for him - he seems to lack so many of the prerequisite social skills that are needed to really get anything out of it. Sometimes I feel that he is in daycare, not a school setting. The therapists that work there are top notch. I am concerned that he doesn't get the one on one and intensity that will make a difference. I am not sure if he is getting what he needs.

I hate looking at my failures. And the fact that I left his last CPSE meeting in status quo makes me angry with myself. I suck at confrontation. I suck at thinking on my feet. And those skills are the most important during those meetings. uugghhh

Zach loves going on the swings. After the last 2 years, feeling that we might have made a foolish investment in the playset we bought, I can now say it is a joy to watch him run to it every break he gets. This good weather we have been having is helping to make more opportunities for him to get out there. He loves the sand box. He likes the slip-n-slide. He picks up sticks, he plays with dirt, he gets in my garden.

Zach's language skills are still lagging very far behind. I am realizing that his receptive language (what he understands) is much better than his expressive. It's easy for a novice like myself to misunderstand that these two are separate, and should be evaluated separately. I have been trying to work on goals with him, and without the credentials or experience of an SLP or special education teacher, with the only tools that I have: my educated and trainable brain, my interest in technology, my engineering troubleshooting skills, and most importantly my never ending love which inspires me to stay the course.

I am happy to announce that Zach's alphabet knowledge is right on. I witnessed a game tell him to pick the letter that made the "teh" sound and watched him search the letters of the alphabet until he found the 'T'. He managed to do this for several letters. As we sat on the orthopedist office, he pointed to the Waiting Room D sign and said "D". While in school playing at the magnetic letters center, he grabbed a letter showed the aid at the center and said "C" proudly. He recognizes capital letters, he recognizes lower case letters. He can say the phonetic pronunciation of a letter when prompted with a: "the [name of letter] says" _____. I know this may seem out of order in that if he doesn't even understand what a word is, why do I have him learning letters? I saw a sparkle in his eye when he learned his letters. When he spelled out a word on his one game the other day - he looked at me like "Holy sh*t - this means something doesn't it? " When he spelled out some words on his one game - he stimmed like crazy. Normally, stimming would be something we try to avoid - but I know that when Zach feels pleasure/happiness/excitement this is what happens. How many kids would feel this way about letter recognition and letter usage if they didn't know it meant something?

We are working on some stuff with him. I am very excited. He is such a joy to me, even though he is such a mystery too. When I saw him seeking my eye contact out when he spelled this word on his new game, I felt a pleasure like I haven't in such a long time. It's not a wish, it's not hope, it's not the possibility. This is real.

Angels in various forms

2010-05-13T08:54:00.022-04:00

In a book I recently reviewed about faith and specials needs, I was pleasantly surprised to read about a Muslim who helped the author and her family. I believe I commented about this in the previous post when I reviewed the book. While I am a Christian, and this story is told from the perspective of a Christian, I was happy to see that the book tells of an angel sent to the family in Muslim form. We too have had such a Muslim presence in our lives.

A family who knew little of our situation made a lovely gesture to us by spending time with Sophia. I often worry that I am not always able to attend to Sophia as I wish due to the constant doctor and therapy appointments, and that she is lacking the attention she deserves. I had always assumed that it would be my family who would come to her rescue, but things just don't always work out the way you expect them to. This family recognized that I was busy, with what? They didn't know at first.

They have a daughter in Sophia's class. They get Sophia off the bus for me, feed her, and keep her occupied. This one day every couple of weeks offering has meant the world to me. At first I was nervous, they did not know me, they did not understand what we were going through. I picked up Sophia after an initial playdate and felt the need to explain why I appeared to be always on the go and was unable to reciprocate. The mother insisted there was no need for explanation, she could see I needed help, and she was glad for a friend for her own daughter. What a lesson I learned that day.

I told her of Zach's diagnosis anyway. Then this gracious lady told me that her husband was a neurologist and to use him as a resource if I wished. When I think about this family, I often think of the lack of judgment we faced: they never asked what was going on, they just offered to help. They are a perfect mix of compassion and humility.

Now this woman was not perfect, she actually made comments to me that "he looked fine" and that he was like a cousin's son who was just a late bloomer. I knew she didn't intend any ill will when she made these comments. I let them pass.

One day, when I went to pick up Sophia after Zach's therapy, she invited us in. There sat her husband. She made me a plate of lovely Egyptian food, and her husband and I, sat eating our meal, discussing Zach and autism. Meanwhile she attended to Zach in the adjacent room, listening to our conversation.

His specialty is stroke care, so he could not offer specific medical opinions, but he gave us an opinion on sticking with it and keeping Zach engaged. He had a fellowship in Pittsburgh, where they have a terrific children's hospital and was able to see a little bit about autism care. One other interesting note he offered me was that the neurologist we went to see, prestigious as her credentials and background is, was not a pediatric neurologist. This certainly made me view her advice and opinions differently. (It also irked me that my pediatrician sent us to someone who did not specialize in pediatrics, lets alone autism.) Two things stand out from our visits to her: 1) her comment that Zach's brainwaves (as recorded in his two EEGs) were "mature", that of a child 2 or 3 years older, and that is indicative of a high IQ. 2) The other comment, was not to pursue any intense intervention with him, that he was likely a weird little math genius. I noticed that none of this made it's way into the official report. I often think about recording my visits to the various doctors we see - just to capture things I think no one would believe when I write them.

A few weeks later, this mother approached me after swim lessons, and once again offered to take Sophia, and added that she would take Zach too, so that I could have some time to myself. She went on to say that she knew she didn't understand all that we were going through, but to count on her if we needed her.

Our experience has taught me so much. Unfortunately, some of it, a self awareness that I was not the most understanding person myself. I am shameful of my past pretense of compassion and sympathy.

This woman also taught me much about myself and who I would like to be. Much like me, she is an educated SAHM (stay at home Mom) . This woman has no complaints about her nomadic lifestyle (just part of being a doctor's wife she says) and lack of career, nor of the type of work she does (cooking, cleaning, tending to children). Sometimes this SAHM thing does erode a little bit of my sense of self - so much of my identity was weighted upon my career. I have this idea of the person I want to be; I value being useful, respected, and appreciated very much. My career provided me with value for these things. I will not be given paychecks or awards for my work. When I am asked, as I frequently am, what I do for a living, I will say SAHM, and see that the doctors and other professionals do not take me as seriously as when I was a career gal with a masters degree. I am not sure if I will ever even get that appreciation since I am really working for myself, and have to learn to appreciate myself! I can still pursue my values, and now with a sense of humility, since not many people aspire to be in my shoes.

Zach's diagnosis has come with a plethora of life experiences for us that go beyond the autism itself. I am fascinated by the variations of people; that my expectations of people have been both unmet, leaving me disappointed and hurt, and surpassed, where I am amazed at the generosity and thoughtfulness of strangers.

This family has meant a lot to me, and unfortunately given me sad news that they will be moving soon, the doctor is pursuing his next fellowship, likely in South Carolina. But I am grateful for their presence, albeit short, in our lives.

What is that boy up to?

2010-05-10T05:48:00.003-04:00

Changes. One thing you can count on in life, right? Change. The other thing to expect in life? The unexpected.

Zach is definitely been going through something, although I'll be darned into thinking I can describe it with any clarity. I try to think of him clinically - how many words is he able to say? how often are they spontaneous? any inappropriate behaviors? does he respond to requests? does he imitate behavior? does he initiate social contact? does he have repetitive motor movements? does he perseverate on a single word or activity? what are his motor skills like? how has his eye contact been? These things all whirl around me head at any given moment.

I feel that we are still under a great deal of stress, but, like many things that require more efforts, we are getting used to the level of difficulty.

Zach's speech has become more clear. He has uttered some new words and some (perhaps even most) of it can be credited to the tubes in his ears. What words you ask? Well "booger" and "bacon". I can assure you that we have not officially worked on those in any therapeutic setting.
He is also trying real hard to sing "Twinkle Twinkle Little Star". I love that he will be playing by himself and sing this to himself. Very sweet.

Zach is loving the warmer weather. LOL Yes, I have to laugh at this, since it is May 9 (Mother's Day 2010) and it snowed for over 5 hours here in Syracuse today. (Once again, my procrastination has paid off, and my tomatoes have been spared as they sit in my garage unplanted.) He really loves his playset, climbing the rockwall, sliding down the slide, and swinging, and swinging, and swinging.

Sophia does not like to swing. Never has. I remember getting a baby swing as a shower gift, and after going through year 1 of Sophia's life, thinking that swings were a total waste of $$$. Then along came Monsieur Zachary, and it's worth became a lot more valuable. Zach has taken to the swing very well, and holds on independently like a trooper (has since he was quite young). I am having a helluva time trying to show him how to pump, so for now, I just push him. I actually will grab the swing while he is up, and make him say "push" for me to give him an extra push and let him continue on. As for mechanical mobile devices, there is interest but either not an understanding of action/reaction or really bad motor planning issues. He refuses to pedal or steer his tricycle at home, although reports from school indicate he has done it, to some extent there. *sigh* As for the scooter which I know he was interested in after watching the neighbors daughter do it, it makes me laugh every time I see him get on it. I bought him a scooter with a wider base (thinking it would be easier to stabilize and balance on.) Zach will stand on it with both feet holding the handles appearing to wait for it to move on it's own, as if it were a Segway.

He is interested in balls, but has not a clue what sports are, nor can he really play a game of catch. He loves water, and I am unable to bring him to Sophia's swimming lessons, since he wines and tantrum to jump in the pool the whole time we are there. I need to get him lessons or therapy or something! Of course, I cringe at thinking about trying to get ear plugs into those little ears without a fight.

He is eating well, as usual, broccoli, carrots, corn, peas, strawberries, raspberries, melon, cucumbers, apples, bananas, chicken nuggets, turkey, beef and chicken hot dogs (organic, no nitrite/nitrate varieties) , bacon, pan fried ham, rice, mashed potatoes and french fries, gluten free pastas (I really like the quinoa), coconut/almond/rice milk. We make homemade breads and baked goods for him (to die for chocolate chip peanut butter cookies and very yummy waffles/pancakes) and he eats a host of gluten free casein free snacks such as pretzels, potato chips, fruit snacks, Tings, faux graham crackers, crackers. I think that reducing the amount of grains/carbs he is getting really helps to create a healthier diet for him - he is so much more interested in fruits and veggies than so many other kids, and especially his sister Sophia. He eats a variety, but we have noticed that he is still set in his ways - only eating the store bought GFCF chicken nuggets, and not my homemade for instance. He won't eat my meatballs (Sophia gives them a thumbs up.) Steve and I are short order cooks around here.

We are still not even close to the potty training. It exhausts me to just think about it. He attempts other self care activities, including brushing his teeth and flossing, taking his socks off and attempting to put them on, unzippering and zippering various items of clothing, but he has a way to go in terms of dressing himself. I am always amazed during evaluations of what they consider to be normal for dressing - Sophia still cannot do buttons or snaps!

Zach is doing well with letter recognition and the associated phonetics. How he is managing to learn letter recognition prior to him knowing how to speak fluently just makes me shake my head. I know this gestalt thing is likely the culprit, but it still messes with my mind to see him accomplish some things that he does in the order he does. It's a great reminder for me to never give up on him when it appears he doesn't get it.

Socially, he still prefers adults to other children, with the exception of small groups of NT boys around Sophia's age. I only wish we had more access to boys for him to hang with. Most of the typical kids in Zach's classroom are girls. He seems to really like to watch them engaged in sports. I still find it funny that it is apparent every once in awhile, for his preference to males over females. I suppose if I had all these daunting chicks hovering over me all the time, I would need a little testosterone presence in my life too.

I would never had guessed that a kid on the spectrum could smile as much as Zach does, nor to show so much affection to his mother. I have to tell you that I feel he loves me and is happy as much as I do Sophia - actually, I might even know it more for him! Sophia has become rigid and occasionally mean to me. Almost like a young teenager. She tells me what to do, rather than ask, and fights me on just about every request I make of her. I have had it out with her a few times the last month. I also know that she is currently really stressed out.

Sophia has begun to bite her finger nails. Might not sound like too big of a deal. But it gets worse. She is chewing on everything, like a teething toddler. Mind you, she is losing teeth and getting adult teeth (she has lost 3, and 2 adult teeth have come in). I am wondering if this is creating a lot of sensory issues for her. I have given her chewy tubes, no interest, and chewing gum, she swallowed it. I have found a cool whip container chewed on, a cup, a few boxes we had, towels around the house, and of course those nails. When I ask her if she is OK - she says yes. I question her specifically, and nothing stands out, with the exception of a falling out with her previously known best friend. Heather has begun to make remarks to Sophia like "purple is boring", trite to you and me, but basically denigrating my daughter's 5 year old identity. SOphia loves purple and to a 5 year old girl, such a thing as a color preference is such a huge part of their world. Heather also makes fun of Sophia's other choices and wants to dominate their playtime together. Sophia is often left in a ball of tears. I originally thought to let them work it out between the two of them, I am sure Sophia is no angel, and likely contributing to their discord too. She needs to learn social skills. But this chewing thing, and the stress the family is under has me rethinking that tune. I know a little bit about what Sophia is like - I see a bit of myself in her, for better or worse. I know that she is a pretty sensitive kid who lacks social understanding. That was (is?) me. It breaks my heart to think that she will likely have her heart broken a few times, long before any boy comes around. I would become very attached to friends, but was not good at keeping them around. My interests were rigid and narrow, my academic interests were a turn off. And my ability to relate, understand what was being said to me, especially in social circumstances, lacks such depth. Furthermore, I have a hard time acknowledging a person's thoughts and feelings without getting totally wrapped up in my own emotions which is a huge turn off to people. I hope she can find her way better than I did.

For now, there is ballet, swimming, soccer starts next week, the occasional play date, the never ending birthday parties ( I am convinced that September/October is peak mating season in Camillus) and all the day to day things like homework, learning site words, riding our bike around the block, reading books, etc.

I was glad to hear at the Mother's Day family round table today that a sibling of mine attended some sort of autism awareness training at her place of employment. She recalled learning that many children on the spectrum do not have mental retardation and some other facts. She said a few times to me "It was like you said", which left me wondering "Did you think I was making this stuff up?" LOL Of course, I am grateful that she is trying. My other sibling passed along a local family life publication from this month in which the whole edition was concentrated on special needs. She also passed a telephone number for a nurse at the hospital where she works who has an 8 year old with autism and was a parent advocate at one time. I appreciate the efforts of both of my siblings to try and understand what we are going through. I didn't receive any tangible gifts for mother's day, but these were more significant to me anyhow.

The house is a mess, two of my tomato plants are dead (damn snow), tomorrow we are off to Rochester to get Zach evaluated, again, and life just keeps on moving forward. Oh yeah - in other big news, received a phone call a few weeks ago from my dear MIL (mother-in-law) and she sold her house (finally) in NC. She is moving up here in a few weeks! That's sure to change the dynamics around here. Here's hoping!

Our current motto: Expect change, expect taxes, and expect the unexpected.

It's just not me

2010-05-05T11:25:00.002-04:00

I walked a mile with Pleasure,
She chattered all the way;
But left me none the wiser,
For all she had to say.

I walked a mile with Sorrow
And ne'er a word said she;
But, oh, the things I learned from her
When Sorrow walked with me!
Robert Browning Hamilton

Throughout April, I periodically posted on Facebook, facts regarding autism for Autism Awareness Month. Last week was the end of April. And I was foolish. I decided to try and really catch people's attention and be a little provocative and wrote something "catchy". My previous posts had included the definition of autism, prevalence rates, treatment efficacy. I was going to write something about increasing autism diagnosis rates. But I scratched that. (*Idiot*, said to myself.)

I have recently decided that as strong as I appear to some, I am incredibly wimpy, and have been struggling how to deal with my deficiencies, in particular, in dealing with the school district regarding Zach's services. I feel very alone in this fight, and when I was pushed, I fell down. And I am still struggling to get up.

I am so impressed with some of the other mother's I read about and witness. They probably take for granted their strength. I do not. There was a post that someone put on facebook quoting something about standing up for what you believe in, and that a person with only friends and no enemies has never stood up for what they believe in. I cannot even remember the quote, which makes this story all the more pathetic.

Anyhow, in wishing to be someone that I am not, I posted a provocative post as my last installment for Autism Awareness 2010:

Ever see that Mom with that kid tantruming in the grocery store and you think: "Why can't she control that brat?" Fluorescent lights, loud sounds, strange smells; a child on the spectrum? Quit staring. Better yet, go ask that Mom if she could use a hand. Your choice, but stop being ignorant about autism.

Well, a small firestorm ensued. People were upset, including me. And I lit the match. I was not happy with the way I felt about this. I realized that this just is not my style. I was not happy with the results. It is not who I am. Wimp.

In the end, I guess I am not the in your face sort of person that others are. I was happy that some mothers spoke up and stated that in their pre-autism and pre-parenting days they too were judgmental. Indeed I was too! I am very lucky to have had a friend going through much of this before we did, and I read with open eyes her experiences in her own blog. I scanned much of it, not understanding the technical stuff, only to reread much of it in with a closer eye when we began our own journey.

Our journey is still our journey. Just as each child on the spectrum is an individual with their own symptoms, our family is unique too, like any other family.

My heart still aches for our situation. I wonder if I am still in grief. I wish I was more surefooted about what we are doing. I wish I didn't feel like the system has taken advantage of us in our grief and our own ignorance on how things work.

At so many steps in our journey, I have had various professionals tell me how smart I am. Why do they tell me this? Because I have read a few books, read a few articles on the Internet, and talked to some others who have been through this before me? I feel patronized. I don't want to feel good about myself, I want to feel that the right decisions are being made for Zach and that he is getting what he needs.

We are going to Strong Hospital in Rochester to have Zach evaluated. I prefer to go out of the area for these evaluations. I have serious concerns that intentionally or not, local professionals have concerns more than my son when they give recommendations. First off, they may limit their recommendations to the local resources that are available to the child. And then there is the matter of their reputation: if they give recommendations for needing lots of resources, school districts and local government agencies are likely to squawk at using them. I just feel that going out of the area is more of an independent evaluation of what is needed.

Mother's Day is coming around the bend. No one could love Zach or Sophia more than I do, and I do try to take care of them best I know how. For this, I hope I can be deemed a good mother. I am still working on the advocacy part.

Wishes

2010-04-28T21:11:00.025-04:00

I remember a few months back, when Zach was walking around saying "I wish, I wish, I wish". He did not continue to "wish" for things, in fact, we haven't heard him say it a single time since. Probably because we haven't watched a Care Bears movie in a few months either...

Echolalia, scripting, Gestalt language. That's what the experts call some of this. Echolalia is basically when Zach parrots a word/phrase we just said to him. When I ask Zach: "Do you want a cookie?" He will respond with "cookie" back to me. In pure echolalia, Zach would have said back to me "Do you want a cookie?", and not becuase he was curious if I had a Chips Ahoy in my future. Originally when trying to teach Zach to request (also referred to as "manding") for a cookie - we would just hold the cookie up and say "cookie". If he echoed back "cookie", we would give him the cookie, giving him a meaning to his utterance, so that hopefully he would understand that the round thing with chocolate chips in it had a word associated with it (labeling the item) and that if he said it he would get one (teaching him to mand for it). Eventually we were able to add the other words to make the phrase "Do you want a cookie?" and Zach continued to utter cookie if he wanted one, using it to mean "yes" which Zach still does not understand.

As of today, it appears that if Zach wants an item when we ask him, he will echo back the item. If he does not want it, he will say nothing. At least that is how we are treating it, and thus giving it that meaning. There is no "yes" or "no" in Zach's vocabulary. Well, most of the time. When pushed to a limit, I have heard Zach say quite clearly, appropriately, and vehemently, "NO!". LOL "Yes" and "No" seem like they would be some of the first things a child would say. Zach still struggles with making a choice, as do other kids on the spectrum.

The words Yes and No are often used to indicate preference. It can be very hard for kids with ASD to understand because preference is an abstract, social concept and it is hard for kids on the spectrum to understand that different people like different things. It can also be hard for a child with ASD to understand that he or she can also just choose one thing one time and another thing another time based upon preference. Tahirih Bushey MA-CCC,Speech Language Pathologist

Yes, No, More - SLPs (speech language pathologists) frequently try to elicit these words first from a child since they come more naturally for typical kids who may just have a speech disorder. If a child is having a hard time with these words, but yet have others, it should be a red flag that something more is going on.

Now Gestalt language is when a child uses complete phrases or sentences, with no recognition of the individual words in it. According to those who initially diagnosed Zach, his use of whole sentences and phrases ("Wake up!","Oh no, what did you do?" , "Thank You") prior to his regression, although used at appropriate times, may have been Gestalt, meaning, he didn't understand the individual meaning of the words, but got the overall concept of the phrase. Sort of like the whole is greater than the sum of its parts. Kids on the spectrum have a higher tendency to learn this way.

Gestalt language acquisition does not just develop in persons with autism. It’s not just short cut in language. Gestalt language acquisition comes from gestalt thinking or gestalt processing. One way of to describe it is the thought process is like thinking in pictures. Persons with autism think and learn differently. From Bright Tots

Scripting is almost like a combination of echolalia and gestalt language. Scripting is a lot like it sounds - reciting lines from movies, books, television, overheard conversations. Some people say that it is a self stimulatory behavior, used in times of high stress for a child who knows they are expected to be verbal. Some say that they have noticed the occasional child will use certain scripts to express themselves about something they are feeling or thinking that they have no other way to express. Zach has not done this to date.

What does Zach say? Well, he has a vocabulary of around 50 words, if I am to hazard a guess. However, he still is very quiet. He will speak spontaneously, just not often. I teeter on whether this is autism, or his personality. He is just not that in-your-face sort of kid (ahem, Sophie any one??), more laid back like his father. The autism just seems to emphasize this about him.

As much as he is quiet, and a possible a gestalt thinker, he is interested in more than the big picture. Lately, he has been fascinated with letters and all things Leap Frog. Using the knowledge of the way Zach may learn from the previous explanation, we have given him access to a LeapFrog video called the Letter Factory, and we have brought out an old LeapFrog toy that Uncle Mark got for Sophia a few years back called Word Launch. These products have been great in getting Zach to learn his letters! But how and why? First off and most importantly, Zach is fascinated with both of these items. We actually use the Word Launch game as a reinforcer during is in home therapy sessions. Now, Zach gets overwhelmed by choices. He has a problem scanning fields, especially with many items in the field (such as a keyboard). The Word Launch game has individual pieces, one for each letter. We can pull out a subset of the alphabet and have him have him make choices from a smaller sample space while playing a game. This does mean that someone has to be there to help him play the game. Guess what? Zach knows this. He is learning he has to rely on other people to achieve what he wants. For the first time ever, Zach loves therapy. He embraces his therapist as never before, even the newest one who started roughly a month ago. These therapists play this game with him. This game isn't just academic, teaching letters, it has also managed to teach a social lesson, too. The combination of these these two items has been a wonderful experience for us. Some would say to us, where is the ABA in all of this? No discrete trials bombarding the kid with flashcards? "Aha" you might say - "ABA isn't necessaryl. "

A note from the BCBA:

I probed receptive ("where is the ___?" And expressive "what's this?" Letter identification with capital letters. Zachary was able to receptively and expressively identify capital letters with 100% accuracy.

A probe to start, continue on with what we are doing for now, rerun the probes, perhaps create a few programs to expand upon what we are figuring out works for Zach. But we have a baseline now, a mark in the sand, to say this is where he is at, and it is well documented and can be studied, altered, and regraded periodically. This is the reason I like ABA - DATA! Some progress events are so obvious that you don't need to get them written down to see the change (e.g. He is peeing on the potty and no accidents!) But some things aren't as obvious, and you may not recognize the changes being made through all the fog of what you are working on, unless you occasionally stick your head up and draw a hash mark.

Isn't a big reason for the written word in the first place just a way to remember what happened with as much detail and truth still in tact?

Zach also is doing some intraverbals - we are making use of his ability to remember phrases and have him fill in the blank. If you are to say to Zach: "A 'B' says _____" he will respond with "buh". He is learning some phonics from these games. I am not sure how useful phonics will be to Zach, but it does coincide with what a normal curriculum for a typical kid is, and will help him to meet that goal if he is tested against it. *sigh* Yes, I am thinking we have to teach to the test if we want Zach to show academic progress one day, even though it might not be the true test of his knowledge, and certainly not a test of how he learns.

So my wishes are coming true - not that Zach is becoming more verbal, literate, or just learning his ABC's. I am starting to get a feel for how Zach's mind works, so I can teach him, communicate with him, one day to maybe help him express his love to us, and respond to him in a way that lets him know that we love him.

If you know a kid with autism, than you just know that one. They all vary so much. One single thing does not work for all, so it is up to us to try and see what does. This method is helping Zach, but may be of no use to another. The mystery of autism will continue, but the mystery of Zach has had a bite taken out of it.

Here (hear??) we go

2010-04-27T14:58:00.000-04:00

Woke up this morning to a happy little boy playing in his room. I rolled over to see my husband in bed with me. "Let's let him play in his room this morning for as long as he wants." I said. Steve concurred. Steve got up only to be replaced by Sophia. As she hopped in with me, I lay there with my eyes closed thinking about all the freaky dreams I have been having. I then asked Steve, "He can't have anything, right? Not even water?" "Nope"

We kept the little bugger up as late as we could in anticipation that he would sleep in. The surgery isn't until 10:30, although they want us there at 9:30. I am pretty sure Steve kept him up until 11 last night, but the little bugger still managed to wake at 7:30.

Sophia asked me when I was going to get up. I dread getting up. I dread this oh so simple procedure that is about to take place. She asks if she can open the shades, she pulls on the roller shade and I realize it is all the way extended to which she replies: "Can you fix the shade so I can open it?" I tell her to give it one more try and 'snap' it rolls up, all the way to the top, only to reveal that on this April 27th morning (yes, it is almost May good folks) that it is snowing in Syracuse, New York. Normally, this would unnerve me as a freak natural occurrence and I would be spooked that it was setting a bad tone for what was to come. But, alas, we live in Syracuse NY, and we pretty much come to expect that it could snow in July around here. However, waking up in bed with my husband still next to me at 7:15 on a weekday, that is what I call a true freakish moment.

It's eight o'clock now, Zach has moved into the therapy room and is playing and babbling and singing. He still hasn't come looking for me. I heard him call out "wake up" but don't know if that was directed at me or not. I am still in bed, staring out the window at the snow, typing on this ol' laptop.

I think about the freaky dream I had last night - where I was at a swim meet, about to do an event that I had never done before. Those of you who don't know me, which is many, probably don't know that I am not a particularly good swimmer (make that pretty bad) and that I am pretty nervous around deep water. In fact, I failed swimming lessons in the 2nd grade. Back to the dream, I was belly crawling around the pool, watching the other swimmers, trying to notice their every move so that I could replicate it. In my dream I was not afraid of the deep water, and was actually building up confidence as I crawled around the pool, watching the other swimmers, thinking "I can take them". Now when I think about me at a swim meet, in a bathing suit in my current unfit 40 self in front of the general public, building up confidence just doesn't seem like it would be likely. I'll let all you dream interpretation enthusiasts work this one out and get back to me. The dream abruptly stopped, as most of my dreams have been lately. None of them have been pleasant. All of them have been so unusual, more than my dreams ever were before. All of them have left me uncomfortable.

I used to have those flying dreams - anybody out there have them? I remember as a child, I had them so frequently, a few as I was growing up, and a rare hit here and there as an adult. What I would do to conquer the skies again in my dreams. As much as I have only a cursory knowledge of dream theory, I knew these dreams were positive, that I was feeling good about myself and my life. Of course, I was somewhat of a realist in my flying dreams, I never made it up on the first hop, it would usually take 3 or 4 times to get the appropriate loft, and then once up and I was able to determine my navigation techniques, there were those pesky power and phone lines that I would have to avoid. I can recall feeling in flight nothing like an airplane, yes more like a kite, at the whimsy of the air currents, not totally in control, but able to span a distance like a glider. Oh, how I would love to have the strength and content feeling to have such a dream again. My dreams seem to all be about frenzy, nonsense, fear, my past colliding with my future. Crazy.

The snow was still coming down as we came back from the surgery center. Tubes were in, both ears were completely clogged with a viscous mucus. The ABR indicated all OK. They were unable to conduct an OAE (Otoacoustic Emissions test) because of all the gunk oozing from the poor little guys ears. He took a bit to come out of anesthesia, but uttered only a peep when the nurse took out his IV. He readily took the cup of apple juice and ate some crackers on the ride home. We cuddled for a bit, and then he went to town eating two waffles, then a hot dog and an apple for lunch. He played a bit, and then I saw that look. You know the one. I placed him on the potty, he did his business (#1 and #2) and we got him out of his pajamas and into comfy clothes. He's playing an online Fisher Price alphabet game on my laptop now. There is some gunk coming from his ears. And here we are.

Tubing

2010-04-26T23:02:00.000-04:00

Tomorrow Zach gets tubes in his ears. This will supposedly help with the constant ear infections. Perhaps, even though a long shot, will help with hearing that may be impaired. I want to give him every advantage I can. I hope this one makes a difference. I know lots of families who had children with tubes, I know it is a fairly common procedure. But, alas, I am still nervous. I cannot tell him what is about to happen. He has no receptive language. I don't want him to be scared. How will he not be?

The procedure for tubes takes 15 minutes from what I understand. Nice and quick. Unfortunately, we are also having other stuff done - particularly the ABR hearing screening we have mentioned before. ABR stands for auditory brain response. The ABR involves measuring brainwaves that arise when the auditory system is stimulated. A positve ABR result (recordable brainwaves in response to sound) only implies that the auditory mechanisms are intact (even if behavorial responses during audiometric testing is absent). Don't want to think about the negative side to this coin right now. This part of the procedure will take about an hour. All of this is done under anesthesia. I know this will be very hard for me.

So there you have it. I will let you all know how it goes. Off to bite my nails or eat chocolate ice cream or something.

I am as cold as ice

2010-04-20T09:42:00.002-04:00

It struck me the other day when posting on facebook - how much a part of Zach's autism am I?

In recognition of "April is Autism Awareness Month", I have decided to assault my many friends with facts about autism to drive them to the point of unfriending me. (By the way - when did friend become a verb?) Video killed the radio star, and email/facebook/texting/twitting, I mean tweeting, killed the little grammar we had left in American society. In my Facebook posts, I have posted things about prevalence rates and gender differences. Then I posted about the original theories of autism, namely "Refrigerator Mother" syndrome.

First, I felt a sadness for all those mothers who loved their children so much, were desperately seeking help only to be told it was their own fault. Holy crow. Can you imagine? I mean seriously, this would likely have been the end of me. Blame my genes, but my deliberate or involuntary actions? All you mothers out there, with children of special needs or not, think about being blamed for your children's vices. How come this theory lasted so long and why was it so easy for us to believe in?

A little background for those who didn't see my facebook post:

From the 1950s though the 1970s, the prevailing medical belief was that autism resulted from inadequate parenting. "Experts" blamed autism specifically on a maternal lack of affection. (A theory that would endure well into the 1990s) This theory is still held by those who believe in "psychogenic disease" that associate mental disease with emotional conflict.

The term "refrigerator mother" was coined by Leo Kanner, an early autism researcher. Kanner, and a few predecessors including Freud, noticed that parents appeared to be cold of children with what would now be called autism, thus blamed the bonding thing. I kind of want to smack the guy, for obvious reasons, but I also want to thank him for recognizing the disorder was different than the previously believed mental illness/retardation mix it was attributed to.

Of all the circumstances that Zach's autism has brought to us, I realize that the dichotomy of human behavior is the most frequent theme. There is good and bad in everyone; in our typical kids, in our ASD kids, in people in general. The tilting point, more often than not, a balance, is what makes the difference in whether that person does more harm than good in this world. So some people would say I should be pissed at this Kanner dude, whom I have never met, and who has likely caused some harm in his initial observations of these poor mothers, although not me specifically.

What exactly did Dr. Kanner observe? Was it that Mom didn't smile or Dad didn't feel the need to have idle banter about sports amidst the time they spent asking for help? May it have been that Mom and/or Dad might have the same disorder? Anyone who has a child with such a disorder isn't exactly going to be cracking jokes and loving life when trying to get help, any empathy while doing the analysis? (Empathy/doctors: please discuss.) But it isn't the theory that bothers me, it's the fact that so many people stood aside complacent about the theory. It was so easy for us to blame the parents.

A responder to my facebook post wrote something I found salient:

Such findings always strike me as further proof that people never really give up on clinging to superstition. When superstition falls out of favor they call it divine retribution. When that falls from grace they get science to provide the justification. People want to blame someone because they don't want to believe that such things could happen to them. Diseases and conditions of the mind seem most at risk for such persecution.

I read an article about the Mommy Mafia on cnn.com recently and realized, that us moms can be brutal to one another about passing judgment on mothering abilities. Why is it so easy for us to do this? I can remember with Sophia, our lovely "high spirited" daughter, having friends whose children were more "appropriate" smile at me and frequently pass a word of advice on what I could be doing better. When several of these parents went on to have other children more "spirited" like Sophia, I couldn't help but smile to myself. And yes, I occasionally rubbed it in a bit.

Nurture and nature. We just love to blame some things on nurture that are nature. And vice versa. Sometimes we want to accept the nature part of things to the point of lack of responsibility. We just do not want to believe we can make a difference with the circumstances presented to us. However, sometimes we don't know how to or are too worn out, either way: we need help.

My behavioral approach to Zach supports this theory. It does seem to say that my actions with my son can make a difference with his behavior. They did not cause his behavior's intrinsic nature. I try to work with him, but I am no specialist or expert in this. I learn, people tell me I am "so smart" in fact about all this, but it is a lot of work, I get tired. I need help. I am not responsible for the innate circumstance we have in our life, it could have happened (and is with current incidence rates of 1out of 91 children) to anyone. I see others who take different approaches, I wonder what guided them down their paths to their decisions. I know a few things about them for sure: they care, they try, and they are tired. No chilling appliance parents here.

Thank you Dr. Kanner for realizing there was something more to this than straight mental illness. Thank you Dr. Kanner for realizing some of these children were cognitively capable. Thank you Dr. Kanner for giving a theory that people should have contemplated and criticized more readily. Shame on the rest of us for wanting to believe this was something that could never have happened to us and that there is nothing we can do to change outcomes.