Baseball!

Out of the silence

One of the things about living life to its fullest is that there sometimes leaves little time for reflection. Many a moment, thoughts of what is going on in our lives and what it actually means, especially for the long run, cross my mind. I have always been someone who has contemplated my life. I have also always been someone who is told that they over-think things. And I do. Analysis is just part of my normal thinking process. And I analyze just about every facet of my life, even what toilet paper is the most appropriate choice. Wish I was kidding. I am perhaps a little fastidious about the mundane. Is it surprising why I get overwhelmed with life so easily? But I'd also like to think that I concern myself with more important matters, such as my childrens' futures. Clearly not as trivial as toilet paper, this topic is much more difficult to characterize. And I can contemplate it for hours if given the opportunity. Which I am not given. Ever.

Obviously one can only predict so much about the future. But most people can ride the bell-curve. For those non-statistical types, what I mean by this, is that most people can expect some basic things about their future at age 42 in their lives: children will become independent, most likely go to college, get a job, marry themselves and reproduce, you will retire in your late 60's, die in your late 70's and fill the time in between doting on grandchildren or pursuing hobbies or traveling, in between all these events will fall life and it's continuing (sine?) curve of ups and downs. Well, that particular bell-curve isn't the future of many of us who either have special needs or love someone with special needs. First off, at least in my case (and research indicates many parents of children with autism are similarly affected) I have already retired. While some Moms are able to continue working, and find it imperative to do so, my fastidiousness with life's details made it impossible to hold down a job while navigating the autism highway. There is so much to pay attention to, that I literally am researching or probing some autism related topic at least once a day. Yes, every day. There's the medical side, the legal side, education, services, behaviors, therapies, modalities, and data taking ...a blur. Then there is the independence thing - yeah, I have no idea what is going to happen there. Let's just leave it at that for now. Go to college? What will college be like when my kids are ready to pursue higher education? Costs are sky rocketing for college (beating inflation year after year). Will it be virtual? No more campuses and expensive text books and dormitories? Every day there are more programs being developed for those with special needs. What will be around by the time Zach is of age?

Marry and reproduce. My mother asked me if I should discourage Sophia from having children of her own biology because of the purported hereditary influences of autism. Yes, that would be my mother. (ugh, *sigh*) I thought potty training was tough with a non-verbal child. Can't wait to see what sex ed is going to be like. A disturbing thought that goes through my mind is when Zach gets older, that some disreputable woman will attempt to seduce him. Holy cow. This one makes my head explode.

But nothing compares to the dread I feel of the inescapable: How will Zach live his adult life? If he lives with us - what will happen when we die? When I was little I used to fear death. As I got older and life took its pot shots at me, I became more accustomed to the inevitable, and recalled my grandmother and her seemingly peaceful willingness to move on to whatever is next, and I got it. But I have come full circle, and now fear death above everything. As long as I am alive, I know Zach will be taken care of. But there is no way to ensure his life will be safe, healthy, and fun after I am gone. Even a large sum of money cannot guarantee the care required by strangers. Do a quick Google search about abuse or negligence of those with autism and other special needs by their caretakers and you know that people who go into service professions for those with special needs who may be "qualified" in terms of credentials can also be qualified in other ways, such as certifiable predator, bully, or varmint. Vulnerability might qualify Zach as meek, thus he can more readily "inherit the Earth", but that does little to quell my fears. Does this make me a bad Christian? I barely know how to qualify myself anymore. I have friends of different faiths, and some with none at all. I don't believe that people are going to hell because they don't believe as me. If they did believe as me, they would likely be confused and scared, so I wouldn't wish that on them. I have never been an all out atheist. But I certainly understand agnosticism. I have read Scripture, I have prayed, I have accepted the fate of Jesus as saving me.

But none of this takes away the 300 pound invisible weight that  lay on my chest every day.  I am used to living with it by now - 3 nearly 4 years into this.  Some days I find it hard to breath, so I drink, a glass of red down the hatch to give my nerves a buzz so I can get on to the next task.  I know not to do this too often or too much.  There are many things I don't write about, some of them not for the sake for protecting myself, and others opinions of me, but for the idea that my son might care, if not now one day.  There are things that I do for my son, that I know no one else would do, or at least do so without some resentment.  I feel none what so ever.  I love him and just move on from the ugly tasks of taking care of him to the beautiful ones as quickly as I can.  I am a very efficient woman, I tell you.  But these are the exact things that leave me worry. 

I was once accused publicly of desiring pity.  I was told that the blog was a feeble attempt at calling to myself some since of sorrow from others.  I said little to the remark, and had those who love me respond to it instead.  For a brief moment, I wondered if the person was right.  I had never thought of myself as someone looking for others to feel sorry for them.  In fact, if anything, I had always suffered in the other direction, possibly being a little too proud to admit the failures in my life, the things I find difficult.  But perhaps this person was on to something?

And then it happened.  A chance meeting of someone who inquired as to Zach and a discussion of his progress and the amount of effort put in by me and others to help him achieve some more meager milestones than some typical peers.  And the look.  And the comments.  And the body language.  Holy crap?  Someone was feeling sorry for me to my face!  I was outraged.  It was at that moment that I realized that my accuser of my intentions of the blog was oh so wrong.  I was so angered at the incident.  How dare someone feel sorry for me that I have Zach in my life?  He is one of the very lights in my life!!  He is not something to be looked at that makes a woman consider an abortion as so many people do with disabilities.  He is a beautiful (and I do mean beautiful) and precious and I cannot imagine my life without him.  He smiles more readily that just about any child I know.  He is smart, and can learn, if given the opportunity - most critically the people with the skills to get the job done.  He is loving and gives me the most passionate kisses that only I receive - his mother, because yes, even though he doesn't say he loves me, nor does he even call me by name, he damn well knows I am his mother and knows the difference.  And I will make sure that he always does for the rest of my days.

Sophie's First Communion

Time flies by so fast. My little girl has made her First Holy Communion. Here are some pictures from the beautiful event and of my beautiful little girl.

Zach's Signature

Zach's signature - no facilitation required other than a verbal prompt of "write your name".

So stinking excited.

New Milestone

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!!!

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!

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...