Raising Autistic Child Seems Like a Juggling Act

ecember 24, 2006

Are these the shadows of the things that Will be, or are they shadows of the things that May be only?” Ebenezer Scrooge asks the Ghost of Christmas Yet to Come.

Surely fans of Charles Dickens’ “A Christmas Carol” find this scene the scariest in the story. It touches twin nerve endings: our fear of the future and our dread of death.

Unfortunately for me, I’ve experienced this moment, oh, upwards of 65 times, for “The Muppet Christmas Carol” is my autistic son Walker’s favorite film. For years, from the day after Thanksgiving until sometime after New Year’s when I have the courage to put a stop to it, Walker plays this video nearly every day, the words and songs serving as a background to whatever else is going on in our house. I’ve learned to tune it out, but when Scrooge reaches that moment when he begs to know the future, I cringe, if only a little.

As the years race by, Scrooge’s question becomes more and more urgent. My wife, Ellen, and I are 57; Walker is 21. His autism is so severe that he can’t–so far–converse or do productive work. He can’t safely leave the house alone. He can’t tell a doctor what’s wrong when he feels sick.

What will happen to Walker when we’re gone? Or, in the blunt words of countless friends and acquaintances, “What’s your plan?” (It’s amazing how frequently we’re called upon to make casual conversation about our inevitable demise.)

“What’s yours?” and several other not very snappy comebacks teeter on the tip of my tongue but are never uttered. I know that the question is a natural and obvious one, the elephant in the room. But the real answer I want to give is complicated, for the future is only one element in the juggling act the two us must perform as parents.

The short answer is, “We’re doing our best.” While not impoverished, we never seem to have an extra dime. So we work feverishly with a private foundation to establish a group home for Walker and other kids like him, a neighborhood residence where he can have his own world and do his nearest approach to normal work. All the while we do this, we are astonished at the lack of interest that state and federal governments have in a problem that will someday explode in all our faces. According to figures from the National Centers for Disease Control and Prevention, autism now afflicts up to 1 in 166 children and the numbers are getting worse. What will happen to all these children as they reach adulthood? Where is the No Adult Left Behind program that will face this problem honestly?

The future is only one ball we must keep aloft. Another, contradictory one, is hope–Walker’s dreams for his own life and ours for him.

No one is sure what causes autism or how it can be cured, but solid scientific knowledge about it grows steadily. So we persist in trying new medications–he now takes two new Alzheimer’s drugs that seem to have helped him with his concentration and following through on tasks–and trust in his own incredibly positive spirit.

He works hard and happily at writing sentences on his computer. He goes off to his special school each day with a grin and a spring–I should say, leap–in his step. And he tries every waking moment to say things to us, to make his thoughts known. And yes, he does improve, slightly, all the time.

The third ball, for us the trickiest one, is the challenge of valuing Walker as he is, here and now. He can be difficult. He’s a strong, 6-foot-3-inch young man who can suddenly, explosively jerk away from me and run through the mall laughing and shouting “french fries!” to the shock of everyone around us. He can, playfully but incessantly, repeat one-word demands until people feel like running screaming from the room.

But he’s also a charming, flirty, engaged guy who can suddenly turn off the “Law and Order” episode his parents have seen three times before, fall giggling onto the sofa, and with a gleam in his eye shout, “It’s a party all the time!”

Walker is rewarding to live with. Contrary to a recent theory that says autistic people lack empathy, he’s the emotion barometer of the family.

The real challenge that Ellen, Walker’s brother, Dave, and I have is empathizing with him, getting at the motivations and thoughts and needs of a young man who often seems like a kidnapping victim with duct tape over his mouth.

Years ago I saw a circus performer on TV juggle–successfully!–a flaming torch, a sword, and a bowling ball. It was dangerous, it was “impossible,” but most of all, it was funny. This is how my juggling act as a father often feels: risky, contradictory and absurd.

But as Walker cheers happily for the quadrillionth time at the end of his favorite movie and looks into my eyes for my response, I cherish Dickens’ words about the resurrected Ebenezer Scrooge: “His own heart laughed: and that was quite enough for him.”

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