My journey from pregnancy to the birth of my son, Tyler, was unremarkable. I had no issues getting pregnant, the pregnancy was uneventful and my delivery at age 32 was enviable. His first year of life was not without challenges, but being my firstborn, I didn’t suspect anything was “wrong.”
He wasn’t typical by any means, but I didn’t suspect anything was up until after his MMR shot at 14 months. It was then that he stopped eating everything. He wouldn’t interact with any of the children in my weekly mom’s playgroup. He was exceptionally bright and talked at 14 months. He was obsessed with things that went “around and around” (his first words, by the way). His was picky with his food choices, he was annoyed by certain sounds that led him to inconsolable fits and he was aggressive toward other children and didn’t like to be touched in certain ways. He was overly clumsy, hard to put to sleep and had trouble adapting to any change. At some things, he excelled. At others, he was way behind. He didn’t feed himself until age 2.5, and didn’t potty train until 3 years and 4 months.
At the age of 3, I enrolled him in preschool. Although the people there were wonderful, his challenges to conform were too great. I was told to find another place for my child. My journey led me to a private school for gifted children; an IQ test administered by a psychologist during our divorce custody evaluation indicated he was quite bright. Later on, I would hear the term “twice gifted.”
As Tyler journeyed through elementary school, it was anything but smooth. His struggles increased. Every first teacher conference of the year was met with dread. “We think your son has ADD,” came the first diagnosis from his teacher. The next year, it was ADHD. The following year, Sensory Integration Disorder. Social Anxiety Disorder. Oppositional Defiant Disorder. For every suspected diagnosis, I paid for an evaluation out of pocket.
By the end of second grade, we’d worn out the little private school and my son was kicked out with only ten days left in the school year. With urging from my dad, a public school teacher, I enrolled Tyler in public school. He said I could get help for Tyler there. During the first year, of course, his struggles continued. I asked the school to do an evaluation. Their response was, “He’s not struggling academically so there is no need.” They just assumed he was a difficult child, probably in need of better parenting. But by grade six and after many meetings with me, they figured out that I was not a negligent parent and that there may be something going on with my son.
Evaluations were ordered. I sought out the counsel of yet another psychologist. I kept thinking to myself, There has to be someone who can get inside this kid’s head and understand what’s going on in there, because I cannot. And finally, I got someone who quantifiably put it all together into a diagnosis of Asperger syndrome. There it was — my son explained. I, of course, went through the push-pull struggle of wondering what this would mean for my son to have this label. Would it stigmatize him for life, or would it get him the help he so desperately needs?
I think there comes a time in every ASD parent’s struggle when you have to realize your child will never be so-called “normal.” Later on, I would come to understand that at the root of these issues was a neurologically-based disorder; he wasn’t a bad child. I wasn’t a horrible parent, (although we all go through this as our kids make awful displays for all to see). I finally came to the realization that Tyler would not be like other children. There would be no playing team sports, no proms, no homecoming dances because he had no interest in those things. So what was important here, really? My consensus was this: as long as my child is healthy, happy and can make a life for himself, that’s what’s important.
I’m happy to report that as Tyler is about to turn 23. He has a full-time job as a programmer. He secured that job after two paid summer internships at that company. He did several years in college, doing well in the technical classes but failing at the general education classes. Tyler was challenged when it came to writing papers. His interest in computers, however, was his saving grace. I never limited his access to them; I could have tried, but he was smart enough to circumvent any controls I might have thought I could set. On his own he learned to build, repair and program computers. His passion proved to later serve him as his profession. He now lives in a brand new town home he bought with the help of his father. His kind heart is allowing his younger sibling to live there rent free, as long as she cooks, cleans and shops for him.
During childhood, my youngest child complained miserably about Tyler’s sometimes aggressive nature during play, and I would constantly get complaints that I wasn’t hard enough on Tyler. As any ASD parent will tell you, discipline is difficult. First, traditional approaches don’t work. Second, anything you thought you knew about parenting a child like this goes out the window. And third, they are so smart they can outwit you many times, thus teaching you a thing or two. The good news is that a few years ago, when my youngest was about to turn 17, I heard, “Mom, I’m so glad you had this kid.” That’s the most heartwarming thing a parent could hear. The two of them are so close now, and Tyler takes care of his sister.
These children are not easy to raise — that is true. You question yourself and wonder if you’re doing the right things. However, there are so many gifts that came with Tyler. He taught me that things I thought were important — like dressing up for a theater outing — were not really that important. In seeking help for him, I’ve found my own passion: I left the IT world and am now finishing a Master’s in Acupuncture at age 55. It’s never too late. As an adult, Tyler has acknowledged how difficult it must have been to raise him. He has shown great gratitude to me for all the time, money and energy I put toward getting him where he is today. What more could a parent ask for?
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.