When my son was just a baby and I was madly surfing the net for anything about child development, I came across this book title: The Child Who Never Grew.
I didn’t know it then, but it was a seminal book about raising a child with mental retardation, published in 1950 by Nobel- and Pulitzer-prize winning author Pearl Buck at a time when intellectual disabilities were hidden. Buck writes about her daughter who never developed past the mental age of four.
Early on, the book title terrified me. I wasn’t sure if it referred to children who didn’t grow physically or developmentally. Growth is highly valued in our culture – whether in height or intellect – and I questioned whether happiness could coexist without it.
“Couldn’t we still be a happy family?” I asked my husband when Ben was three days old, and we were waiting to learn what syndrome he had.
Fifteen years later, I’d say “yes,” but I believe my understanding of happiness has changed, as well. I used to think happiness was the absence of pain; that you could somehow manoeuvre around pain, outsmart it, so that it never touched you.
Now I think of life as being like cookie dough with equal parts joy and sorrow, and the two inextricably linked. I’m not afraid of sadness the way I used to be, because I take it as an essential part of life. And I know that the ability to feel and appreciate goodness is heightened when we’ve experienced pain.
Buck, in The Child Who Never Grew, talks about “the inescapable sorrow” that attends parents of children with intellectual disabilities. When I saw the words “mental retardation” ascribed to my son in an evaluation at age 11, I railed all night, unable to sleep, and wept in my boss’s office the next morning.
But was it sorrow for my son – who had not changed one iota since the night before – or sorrow for the stigma of mental retardation that had befallen our family? Of all disabilities, intellectual disability is viewed as the most tragic and despised – even within the disability community.
“It was getting harder all the time for another reason,” Buck writes of her daughter. “The child was older and bigger and her broken speech and babyish ways were conspicuous.” While saying she herself felt no shame regarding her daughter’s lagging development, she soon observes two American women (she lived in China) who stare and refer to her daughter as “nuts.”
Dealing with people’s reactions to our children – and the inevitable comparisons that show up their differences – is wrenching.
At a Christmas get-together, I couldn’t help comparing my 15-year-old son, who doesn’t cope well in group situations because of his hearing loss and anxiety, with his four-year-old cousin. His cousin could play a card game that Ben couldn’t follow. My brother-in-law noted that it was time to teach his son how to tell time, and I couldn’t help thinking, will Ben ever learn? Then at one point Ben got anxious and began picking his nose. Those moments are always awkward. There’s a part of me that fears others are judging Ben, and a part of me thinking: “Obviously my parenting skills have been less than stellar!” Because I was brought up in a family that valued manners, I feel an extra twinge when my son can’t follow social mores.
Reminders that Ben won’t be doing what his peers do sting. Like when one of my daughters asks: “Will Ben learn how to drive next year?” In a way, I don’t want him to turn 16 because the older he gets, the more behind he appears. When I filled out his camp application, I didn’t want to write “16” where it said “age of camper next June.” I fear the time when he starts “aging-out” of programs.
But it is only in academic and social comparisons that my son comes up short. He amazes me, on a daily basis, with his spirit, his sense of humour, his sensitivity, his capacity for joy and his curiosity.
And he has a rare gift: he accepts himself and others exactly as they are.
“He can’t try to act like someone he isn’t,” says my husband D’Arcy. “When you meet Ben, there’s no guile, no disguise. He is as he is. That means I don’t have to put on a disguise either. I can be me."
There are no pretences with my son. In that way, he is more able, more evolved, than I am. How many of us can say we've walked through life without pretending to be someone we're not?
I don’t take anything about Ben for granted. When he signs “What do you want for Christmas?” my heart bursts – because I know how hard it is for him to communicate and to initiate a question like that. I've seen how effortless language is for my typical children. As Ian Brown says in his memoir The Boy in the Moon when describing his son's smile or their shared language of tongue clicks: “Everyday occurrences for a normal child. But I know their true value.”
While Buck says “Had I been given the choice, I would a thousand times over have chosen to have my child sound and whole,” I can not say that I feel the same way about my son. Ben wouldn’t be the person he is – with his own mix of strengths and vulnerabilities – without his intellectual disability. Part of his essence, his way of interacting in the world, would be altered. Something genuine and irreplaceable would be lost.