Nightly newscasts and major publications have quoted the statistics, shared the stories of families and worked to shed light on this “mysterious” epidemic that takes hold of one out of every 150 children. Narrow that down to gender specific and it can occur in one out of 80 little boys.
For my family, we are aware of autism each and everyday because the youngest in our family is one of those 80.
When he turned three years old, I brought out my inner “Martha Stewart” and baked a birthday cake that I knew no one else would ever imagine — a cake in the shape of a garage door.
That summer seemed to bring about a fascination with garage doors. My husband and I would watch as this child would study the doors and the openers in any and every garage he stepped into. He knew how many “pinches” each garage door in the neighborhood had ... this was his term for the breaks in the sections.
There were the homes with two doors, the homes with one big door and the ones with windows.
As the children played outside that summer, he would stand fascinated in the garage. Jumping on his tip-toes with hands twirling, he would study the intricate details of the machine attached to the ceiling. So it was only fitting that for his birthday, I would bake such a cake. And he immediately knew what the cake depicted. What my husband and I did not know was how the events of that summer would start us on a new track.
Sometime after that birthday, I read an article in Parade magazine talking about Asperger's Syndrome — a part of the autism spectrum which was seeing an increase in diagnosis. The part of that story which stood out to me the most was how those diagnosed with this have very strong fascinations with unusual objects or topics.
“That garage door has four pinches, Mommy.” “They have two openers on the wall, Daddy.”
A very dear friend of mine worked for the school district in Special Services at that time. She, too, had read the article. Most importantly, she lived next door to me and watched as my little boy would want to spend all of his playtime in the garage. She approached me one afternoon as we sat outside, saying “I've got something I'd like for you to read.” The Sunday Parade magazine.
That's just the beginning of a story which goes on and on. Since that time a diagnosis has been made, services have been received through organizations such as Judevine Center for Autism, and the work is still in progress. He has had wonderful teachers who have, and currently are, helping him succeed.
But what has been the hardest part of this journey is to make those aware of my son who don't know his story. It's been my fear that writing such a commentary would cause a “placard” to be placed around his neck. It is never my intention to have him labeled ... I just want to have him understood.
Autism is such a complex disorder and those affected by it range from non-verbal to what is called “high functioning”. The details of coping skills make it such a mystery. For our son saying “stupid” is a way to cope when faced with a situation in which he is uncomfortable. It's expected those who hear that may label him a brat. This is something we work with him on constantly — and we've made some strides because he used to just slap at people incessantly.
One evening he walked into my bedroom and told me his belly hurt. As he walked away, he mumbled “stupid belly”. I couldn't help but grin.
The fits in the grocery store or gas station have decreased a bit. We work on specifically stating what will be expected and what he can expect. It will be either a soda or candy and — if he had a good day on Dad's day off from work — he will be treated with both after being picked-up from school. Thank goodness for outside pay pumps on those not-so-good days.
His first grade teacher has made him a wonderful chart showing thumbs-up or thumbs-down for each day at school with a soda reward at the end of the week. He works for a thumbs-up day and knows that if he should have a thumbs-down, he gets another chance tomorrow.
“Thank you, God, for letting me start over tomorrow,” was a recent bedtime prayer.
He is fascinated with numbers. He says his prayers eight times before each meal, likes to count the number of times it takes to rinse the shampoo from his hair and, by counting the days of the week in reverse, can tell you the last time a friend attended his Wednesday night missions group if that friend had been gone for a while.
As I said before, I didn't want to write this commentary to draw attention to my child. I just think it's important for everyone to be aware that all too often there's “more than meets the eye.” Before I had my son, I admit to judging a parent's skills if the child misbehaved. But now I'm aware that we don't know the whole story. I'm still learning patience and know that there is hope for each child diagnosed with autism, wherever they fall on the spectrum.
And my hope is that one day the garage door of autism will be closed and never opened again.
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