Another day, another walk through the minefield of annoyances that autism brings.
When you’re the parent of a child who’s “on the spectrum,” as they say, life is always a little off-kilter. If you’re like me, you’re one of the lucky ones — your child is considered “high functioning” (a phrase that sounds more appropriate for computers than for children), so in a broad sense, your life isn’t strikingly different from the lives of other parents.
But life isn’t lived broadly. It’s lived in detail, in day-to-day challenges and frustrations, and that’s where “high functioning” starts to seem like a misnomer. Especially when you listen to parents of typical kids, with their typical worries: playground drama, dating dilemmas, whom to invite to birthday parties, how to pay for college.
You nod and feign sympathy, but deep inside, you’re screaming. Playground drama? Not for a child who plays alone. Birthday parties? You don’t have them for your child, because you’re afraid no one will come and you can’t bear to see his heart break. College? You’re not even sure he’ll make it through high school. And instead of wondering how many grandkids you’ll have someday, you lie awake at night and worry about who’s going to take care of your only child — the only person of his generation anywhere in your extended family — after you die.
For appearance’s sake, you take a deep breath and try not to dismiss other parents’ concerns as petty. You remind yourself that the child who for many years barely spoke at all now can talk a mile a minute. Sometimes, you even wish he didn’t talk quite so much, given his inarticulateness, his social cluelessness and his complete inability to understand that words can hurt people — especially other kids, who aren’t as likely as adults to forgive and forget. You wonder how many times you can email various parents to apologize before they get sick of hearing the autism excuse.
You deal with various “therapies” that are only marginally useful, because you can’t even come close to affording the only therapy that has been scientifically shown to make a real difference. You’re astounded that parents of typical kids assume this kind of thing is covered by insurance. Not in Kansas, now or ever. You listen to state legislators rail against proposals to require coverage, and you wonder what they think is going to happen when these kids grow into adults who no longer have family members to care for them.
But just when you think you can’t take it anymore — the stares, the confused looks and the pitying glances from strangers — you hear an uplifting story. You read about several high schools in your area where the students elect teenagers with disabilities or developmental delays as homecoming royalty: Blue Valley Northwest, Blue Valley Southwest, St. James Academy. And they really mean it; it’s not a cruel joke, as you at first feared. One of those teens has a diagnosis identical to your son’s. You smile.
And you realize that truly, you are fortunate. Your child walks, talks, laughs and lives an exuberant life. In your journeys through the “special needs” world these last few years, you’ve crossed paths with children who will never do those things — children who are tethered to tubes and monitors, prone to severe seizures and only dimly aware of their surroundings.
You recall once seeing a young father tenderly fussing over a severely disabled child, a boy about your son’s age. You wondered whether that father was daydreaming about his unborn son’s future during those same months, 10 years ago, that you were daydreaming about your own unborn son’s future. You gave him an encouraging smile, and he smiled back briefly.
But you knew that deep inside, he was screaming.
Sarah Smith Nessel, a 913 freelance columnist, writes The Bubble each week.