The answer came to me slowly over time. I wasn’t going to. This is the fork in the road where my opinions often vary from those held by other special needs parents. Please remember that I am only presenting my approach and opinions gleaned from living with my particular kids. Your approach may well be different. But it’s my party and I’ll cry if I want to. (Just kidding). And actually I have become quite at peace with it. Some (not by any means ALL) of the situations that used to make me wish the earth would open up and swallow me because I was so horrendously embarrassed that we weren’t fitting in have become downright funny, now that I look at them with a different perspective.
A few months ago I was sitting in a kickoff meeting for parents for a teen religious education program. Everyone was pleasantly discussing the challenges they faced with their teens, nodding and commiserating with each other. I grew conspicuously quiet, and all of the sudden I had this weird visual that I was sitting in a puppy obedience training class. Everyone there had a puppy, but there I sat with a chicken. I like my chicken, don’t get me wrong, and wouldn’t trade him for a puppy, but the issues that were being discussed were COMPLETELY unlike the issues I was facing with my teen. Some of their issues were harder, some easier, but they were definitely NOT the same. It is sometimes hard for me to be objective since I am not, and never will be, the mother of a neuro-typical child. But it became clear pretty quickly that they were figuratively walking around that block while I was out in a barnyard spreading feed somewhere. Concerns of dating, sports competitions, popularity, and poor grades are not even on my radar. In some ways this is a good thing. But all the banter really didn’t bother me now. Years ago I would have probably felt sad and wished we were encountering some ‘normal’ problems too. But sitting there then it suddenly occurred to me that this was really quite funny. I felt like an ‘imposter parent’, who snuck into a meeting where I didn’t belong.
Similarly, in the past I would probably have driven myself (and my son) nuts when I took my son with profound autism bowling, trying to show him how to do it properly. He uses both the ‘cheater ramp’ and bumpers, so we’ve already lowered the bar almost all the way to the ground. The way he bowls is this: He goes up and oh so carefully moves the ramp back and forth a fraction of an inch, aligning it just right in his mind. Then he goes back to get his ball, shuffling because he hates to wear the bowling shoes. He must be ABSOLUTELY sure he gets the same ball he bowled with last time. Then he aligns his fingers correctly in the holes. He carries the ball up to the ramp, takes it in both hands, and watches intently as it slowly rolls down the ramp onto the alley. When it hits the alley he laughs and dances like crazy. He never looks to see if it hit any pins. He never even sees if it makes it all the way down the lane, which it usually doesn’t, necessitating assistance from the management. He LOVES bowling, on his own terms. And that’s fine with me.
I have finally learned that my kids don’t necessarily like the things I myself liked to do as a child. Not necessarily because they are autistic, but because we are not the same people. Just because I would enjoy a certain social situation does not mean that I should force inclusion for them. It might not be their thing. We quit trying to get Santa pictures once I FINALLY figured out that it was ME who wanted the Hallmark-quality Christmas card. They wanted nothing to do with it. And some of those Santas are actually pretty creepy looking anyways, aren’t they? Be honest.
I have lots of friends to have coffee with now that my children are older and do not need to accompany me wherever I go. It is easier to form friendships with other moms when our children’s personalities do not necessarily have to mesh. My kids don’t do sports but we have much to enjoy with future Robotics events, recounting of Dungeons and Dragons strategies, the John Maloney Open Gym project at Collegiate school, the special needs Sunday School at St. Benedicts, Life Teen at St. Mike’s, and Richmond Young Writers competitions and classes. We have more free time as a family than many ‘typical’ families due to their slightly unusual interests. (So do ‘typical families’ even exist? I’m starting to doubt it, whether their kids have special needs or not). And in their own quirky ways, our kids DO fit in. Many people in our community love them and are kind to them, and accept them just as they are. They might not quite understand them, but that’s okay because frankly, I don’t always either, and I have been living with them 24 x 7 for a decade and a half.
I would tell you more of our adventures, but I have to go ‘feed my chickens’…
Cindy Szymonik is the mom of two really great sons. A teen with VERY high functioning Asperger’s Syndrome, and an almost-teen with rather profound Autism.When Cindy has some free time she likes to do volunteer work: sewing for Days for Girls International, and assisting at Historic Richmond and Full Circle Grief Center. She is an avid cat lover and enjoys pet sitting with her son Cole.