It's hard to believe now that there was ever a time when autism wasn't a part of my life. It's been over 14 years since I learned of my son's diagnosis, and this after two years of begging, pleading, and arguing with doctors that I knew something wasn't right when he was a tiny infant.
I was also scared because he had been born with a normal-sized, normal-shaped head, but after about age four months, it began to grow very quickly, enough that I noticed a difference in its appearance in a matter of weeks. Even more alarming, it was starting to look like mine did in my baby pictures--wide, bulging forehead; bulging occipital (back) end. Even so, no concern was ever expressed by his pediatrician, and his head was never even measured, in spite of the fact that his doctor knew about my neurological history. I knew "hydro" was not generally genetic, and I am the only one (how lucky, huh??) who has it in my family, but...what if...??
As time went on, he began to "grow into his head," and it was less obvious that it had been large at an earlier point in his life, but...his behaviors continued to baffle me. He appeared to be deaf, not acknowledging my voice, especially when I told him to stop taking the frozen chicken fingers out of the cart while shopping, or even when he was proceeding to run into the street. He became a nightmare to take anywhere, constantly throwing tantrums or refusing to walk, and I was always trying to ignore the stares, glares, and (often loud) comments about my crappy parenting skills. Through all of this, I was still "assured" (read put off) by his doctor that "he's just a boy," "boys develop differently," "you can't compare him to your precocious daughter..." etc., etc. It simply didn't matter that I lived with this child--not any of them--and that, as the eldest of five, a veteran babysitter, and mother of another child, I had a good idea of what was "normal" and what was not, and I knew that something was "off" with my son, though no one else seemed to notice.
A breakthrough in my frustration would come at the grocery store one day when Drew was about 18 months old, and, as usual, getting into the food and driving me to tears of despair. In a sea of shaking fingers and heads, comments (and loud accusations) of "Why won't you get control of that kid?" a savior came forward. She was a middle-aged woman who was, she said, a retired special education teacher. She engaged Drew, talked to him, tried to get him to smile, and then said that she "didn't want to pry," but had I considered getting him evaluated for autism?
At that point, I had a much better idea of what was wrong as I went on to read--voraciously!!--about autism and its classic behaviors. It would be another year before I would succeed in getting a diagnosis for him, and we would endure several more months before truly useful services would start, but I would learn that he was, indeed, a smart little boy who caught on quickly and thrived in the therapies he was given, in spite of another diagnosis he was given at 5 1/2: Chiari Malformation, which is the protrusion of the cerebellar tonsils in the lower back of the brain. Chiari can also aggravate the issues he has with autism, such as sensory integration dysfunction, expressive language difficulty, and processing issues.
Today, I went to a meeting at his school to discuss getting his Office of Rehabilitation Services (ORS) paperwork started so that he may some day be employed. I still don't know what he'll do, and it may be a long time before we know how well he'll manage, but I still have hope that he will attain some degree of self-support. He amazes me every day and changes, grows, and matures constantly. While I think life will always be a struggle for him, I also believe he can make his way. Autism doesn't have to mean despair and fear. There is hope. I know. :)
