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

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

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

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???

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

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

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

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

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

Speech Therapy and Autism in NY

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

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

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

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

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

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

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!!!

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

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

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

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

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

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

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

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

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.