- Posted June 20, 2014 by
Cooper City, Florida
This iReport is part of an assignment:
Raising a special needs child
Throwing a Rock Through the Five Year Window
- Jareen, CNN iReport producer
Our journey began about 17 years ago when my son, Zachary, was two years old. He had been such a happy baby, unlike his brother who had suffered with colic and drove all of us to tears at times. He had developed rather nicely for the first year of life and even after that he continued to show up on the pediatrician’s growth chart right where he was supposed to… so we were expected to believe that everything was right on schedule. At the age of 12 months Zachary spoke about 10-12 words and was interested in the things that most one year olds enjoy. But somewhere between 12 and 15 months something changed. The little boy who always wore a smile began to disconnect. As days went by, he rather quickly sank into a world where others were not allowed to follow. His eye contact diminished, repetitive hand movements emerged, sleeping for more than two hours at a time was a commodity and gradually one spoken word at a time faded from his lips, replaced with shrieks and the screams of frequent tantrums.
Like all “good” parents, we never missed our scheduled visit to the pediatrician’s office to be told to stop worrying, stop comparing him to our other child and that his growth appeared “above average” according to the “chart”. It wasn’t til the day that a good friend who happened to be a principal at a school that had an autism program called me, struggling with every word, to tell me that she saw things in Zachary that she sees in her students. I swallowed hard, holding back the fears that I had been burying for months, and told her that the pediatrician said to stop making something out of nothing. She told me to go get another opinion.
It took all of about 5 minutes in the neurologist’s office to give us a definite diagnosis of autism. Not PDD-NOS, not Asperger’s, not high functioning autism, not developmentally delayed… but full-blown autism. How did my pediatrician, or me for that matter, miss that??? Denial, ignorance, fear, avoidance? Probably all of the above to some extent. Unfortunately with autism it’s something that almost every parent goes through because no one seems to have any answers.
Once my head stopped spinning and my spaceship landed on this newfound planet, I remember thinking to myself “OK, I’ve got a LOT of work to do!” The year was 1997; we didn’t have a computer in the home, I knew no one with a kid with autism, and felt totally lost and confused. Soon as reinforcements of childcare would show up, I would be off and running to the library and Barnes and Noble to grab every book I could find to unearth the answer I was looking for. It was nowhere to be found. Friends told me I was obsessing and told me to “Give it time, he’ll come out of it.” And while I thought “Ok, maybe they’re right,” there was a sinking feeling inside of me of “What if they’re wrong and I’m wasting valuable time?” Then of course somewhere along the road I heard the words “You only have until he’s five to make him “normal” then that window closes.” Oh My God! I was panicked.
I learned everything I could about ABA; what it is, what it does, how it’s implemented and how to take data within the shortest amount of time I possibly could…. After all, I only had a 3 year window left, right? The tv went off, the toys he played with inappropriately (spinning wheels continuously for lengthy periods of time) got put away and were used as rewards, data sheets were created and the bedroom of this toddler turned into a personal therapy center. Initially I developed and ran the “therapy sessions” myself, and after about a year was able to find a teacher’s aid from a local school for autism to work with Zack. He started speech and language therapy, occupational therapy, swim therapy, physical therapy and this funky special needs diet that included no gluten or casein. And WOW… things really took a turn.
The therapies were all great, but still a struggle behaviorally. It wasn’t until after a trip to a nutritionist who was recommended by a friend who had a child with ADD that things began to get easier. We started a GFCF diet. Now, I know that this diet doesn’t do the same thing for every child or person with autism, but within 3 days my son began to sleep 10-12 hours a night instead of 3-4. Within a week, his bowel movements went from running outside of his diaper to nicely formed little nuggets. And within a month the tantrums that had lasted for hours on end, were still happening but lasted more like 15 minutes. Which in my world was AWESOME!
I happened to receive a speech and language therapy grant for a therapist who was at the time working out of her home. During the very first session, as my son sat (well not really) in his chair screaming at the top of his lungs to escape this horrific experience of being asked to repeat sounds, I cried with him and hung onto him like a mother saving her child from an attacking leviathan. The speech therapist watched this and sat back in her chair, then with all of the compassion in the world said to me “Speaking is the hardest thing that your son is ever going to learn to do. If you coddle, cry and feel sorry for him, little to nothing will be gained.” At first I thought “What? It’s my job to be his champion, to protect him from the hardships of life!” Then through her amazing kindness and support, I began to walk along my own journey of development.
I got Zack into a nationally recognized preschool for autism at Nova Southeastern University, which at the time was very clinical. His ABA therapy hours in our home were around 25-30 hours a week… all run by either myself, the teacher’s aid or by a teen-ager I taught myself. I managed to get his speech and language, occupational, and physical therapy covered by insurance after much debate and appeal to my carrier. I quickly learned that EVERYTHING was so difficult to obtain. Why did it have to be this way and how did families who didn’t have the connections that I did make positive change for their kids? They didn’t.
My life became a whirlwind of autism and special needs. The harder I advocated, the more families I saw having amazing impacts to their lives. Not just in the lives of their children and their developmental progress, but to the family unit.
I was approached two years ago to be an editor for a brand new free magazine called The Autism Notebook. Today that magazine is the light in my day as families share their thankfulness for what it brings to their life and the life of their child.
So, back to Zack…. I didn’t listen to that “You only have until he’s 5” comment. Thank goodness! Zachary is my hero. He is one of the most dedicated, hardworking young people that I know. Despite his daily struggle with autism (and most recent diagnosis of seizure disorder) he has managed to make it through school to obtain a standard diploma. He is now in a local college studying film and editing. And just as of a few days ago obtained the Eagle rank in Boy Scouting. Each day is a new day for him filled with the opportunity to grow and develop, experience newfound interests and define his purpose as part of a global community. And after all, isn’t that what we all want?