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Friday, April 8, 2011

National Autism Awareness Month - Long Post

*Note: I'm tired and have to jet to work, so this hasn't been proofread as closely as I'd like.  I humbly apologize!

So, talking about this is a little hard.  Not only because of the impact it's had on us as a family, but as someone trying - in my own small way - to contribute my pittance of talent to the horror genre, I'm leery of using it as a banner to attract attention to myself.  God forbid I ever use such a thing to draw attention to me as a writer.

There's a fine line, of course.  If I can use my writing to draw attention to the matter, and share our experiences through writing...well, maybe that's part of the reason God decided to make me a writer in the first place.  I have written about our experiences, seen a story about it published, and hope to do more, both through fiction and non-fiction, in the future.

My four year old son  Zack is autistic.

Two years ago this month, we received his official diagnosis in writing: severely autistic with significant developmental delays.

At the time, life had come very close to being hell.  Zack had just turned two and couldn't talk, or communicate at all.  Because of this, he couldn't express emotions: anger, frustration, sadness; couldn't express his needs: hunger, hurt, a certain toy he wanted, etc.  AND, Zack was all boy.  Bullheaded, determined, strong, and aggressive.   

He whined.  Cried.  SCREECHED.  Clung to Abby.  He didn't know how to play, could take no satisfaction in anything he did.  Would pick up a toy, fool with it, toss it over his shoulder (destroying our house in the process, by the way), and move on mindlessly to the next thing. This seems trivial: but I couldn't even read to him, because he didn't understand and couldn't sit still long enough.

Let me say this, however: thank GOD he slept normally.  We have been inordinately blessed with that.  Most autistic children do not sleep well at ALL.  Abby and I have always said - as long we get sleep, we can deal with almost anything.

Obviously, the diagnosis was a blow.  With him not talking, we'd gotten him approved for Speech Therapy and other interventions,  but we'd hoped that would be it.  However.  Before teaching, I worked extensively with autistic children.  I knew their habits.  Recognized behavioral traits.  And, I had to admit to myself, much as I didn't want to...

I saw them in Zack.

So we asked our then Speech Therapist if we should have him tested.  She said yes, emphatically, (thank God for her, too), and we did.  For parents with young toddlers possibly experiencing delays - please.  Get them tested, now.  Swallow your fears and insecurities.  It doesn't mean you're bad parents.  It doesn't mean your genes are "faulty", somehow.  Disregard what other people say and "stigmas".  Early intervention is the only way.

Anyway.   Zack's diagnosis could've very easily been the proverbial straw on the camel's back, because at the time we were still trying to cope with Madison (his older sister) and her diagnosis with Sensory Integration Disorder.   

It's not Aspberger's or Autism or Attention Deficit Hyperactivity Disorder.  But it's on what's called the Autism Spectrum.  So close to Aspberger's.  In fact, before Madi's intervention (which she's phased out of),  she very easily could've been classified with Aspberger's.  Even now, she exhibits a lot of the traits:  sensitivity to light (especially flashing) and sound (especially loud) and sensations, high verbal acuity, very intellectual but socially awkward.  

Madison has come very far.  But back then, at Zack's diagnosis, she was incredibly hypersensitive to ANY stimuli, almost uncontrollable in public or family settings (though by herself a complete angel, completely obedient and quiet), and scared of things like slides.  Couldn't stand the touch of shaving cream or anything "icky".  So Zack's diagnosis on top of that.....


I could chronicle all our experiences.  Would take another hour, probably.  Suffice to say this: if you aren't raising a child suffering from Autism or a condition on the Autism Spectrum....

You have no clue.  At all.  People still look my wife straight in the eye and say, "Oh, autism.  Bah.  A made up disease.  I don't believe that exists..."  or, "Are you sure, Abby?  How can you tell he has autism?  Maybe he's just a boy." 

It exists.

In many cases, if caught early enough, it CAN be treated.

We've been through a lot in the past two years.  We live a very regimented schedule, just to enjoy something resembling peace.  We have to turn down invitations from family and friends.  Can't go on many trips.  Have to schedule almost everything we do around our children's schedule, because any time we alter that schedule - even when Abby and I go out on date, even only once a month - we PAY for it, dearly.

Zack and I have skipped countless of birthday parties and family trips while Abby and Madi go ahead, simply because - not to be cruel - managing Zack's behavior would consume us, ruin the trip, and he'd get no pleasure out of the experience, anyway.  Even next week,  Abby and Madi will head out to visit family in Michigan, while Zack and I stay home, because even as far as he's come, he'd be too much to handle, and he wouldn't get much out of the trip.

This past September, Zack decided to stop sleeping.  For almost a month and a half, Abby and I ran on 2-3 hours of sleep, and would be getting up maybe every five minutes to put Zack back to sleep.  In desperation, we finally took him to a chiropractor, he prescribed melatonin - and sleep finally came.  Even better, melatonin is a non-narcotic, natural solution.

However.  Since his admission into the Children's Institute at Binghamton University, Zack has:

- expanded his vocabulary from one word t0 well over three hundred, and can now phrases them in articulate sentences, questions, expressions of emotion, enjoyment, frustration and need.  He can ask for things, can express himself, calls people out by name, and is even starting to offer appropriate, contextual commentary on just about whatever he wants.

- he sits at the table and eats breakfast, lunch, and dinner.  We sometimes struggle with that still, but more because he's operating at a three year old level, than purely because of his autism.

- not only do we read to him almost twice a day, he now picks up books and ASKS us to read to him.

- he plays marvelously with his sister, and can be very independent when he wants to be.

- he's almost fully potty trained.  (I suppose you don't need more details...).

- he's a mechanical and number whiz (Grandpa Lucia contributes to that).

- he's integrated on a regular basis with the mainstream pre-school at BU, and not only loves it but thrives there.

We still face lots of challenges.  Adolescence looms, because the hormonal changes hit those suffering from Autism so much harder.  And even closer is his eventual integration with mainstream education in KE.  Also, it's been very hard to put our son on a bus the last two years, pack him off to a five day week, seven hour day (no nap) school that runs almost year round.  Kid is only four, and he's spent the last two years of his life in school with only a week or so of summer break.  AND, we may have to suck it up and keep doing it for a few more years, to make sure he's progressed far enough to enter mainstream school.

And not to mention all the meetings, CSE (Committee on Special Education) Meetings, therapy sessions, trips to hospitals in Elmira, other things we've had to attend for both Madi and Zack. 

It's been hard.  Many parents might have balked at all this.   But as a teacher, I've seen that too often.  Seen parents afraid of stigmas and labels, and they don't seek the help their children need.  From the very beginning, I was determined that wouldn't happen with us. 

It's Autism Awareness month.  Read upDonate.  Find a local organization servicing this population and donate.   Those local to the Binghamton area, consider donating time and resources to The Magic Paintbrush, (located in the Oakdale Mall in Johnson City).  They service the special needs population in general, and are a true "non-profit".  They operate ENTIRELY on donations.

Really want to challenge yourself?  Young people - single folks, childless couples - volunteer your services.  You never know.  Just like I didn't, working for BOCES and the Handicapped Children's Association so many years ago.  Someday, YOU may be blessed with a special needs child.


  1. thanks for posting this. It was like reading my life about my 4.5 yr old Son, Aidan. I agree. early diagnosis and intervention is key. Autism is a disease that needs more awareness. And it's nothing to be emabarassed about.. I've always enjoyed your stories.. Maybe a book about "life with Zack" is in order. I"ve read alot of books on autism/aspergers and there's not much out there from a parental point of view... It's nice to be able to read sotires like this and say.. I'm not alone in this. I"m glad to hear how well your son is progressing. be proud of everything you've done to help him get there. YOu and abby are doing well.. i know for us the happiest moment i had when aidan starting his therapies was hearing him tell my "i love you mommy" all on his own. He was 3.5. A long time to wait to spontaeously hear those words for the very first time. Keep up the good work and thankyou for taking such a personal family subject public.

  2. Thanks! It's a fine line, between sharing and venting and complaining and looking for attention. I worry about crossing it, but I also see that every time we share our story, more people pop up and say: "We're going through the same thing." That makes it worthwhile.