Wednesday, February 3, 2010

The child who never grew

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.


What a beautiful post this is, Louise. You have articulated so perfectly the way I, myself, essentially feel about my daughter Sophie. I especially like the sentence "How many of us can say we've walked through life without pretending to be someone we're not?"

Thank you for posting this.

Wonderful post Louise! You address a question I ask myself often -- would I choose to have Oscar live free from PWS if I could? When he was first born, the answer was an unequivocal yes. My pain was just too great and I would have chosen any escape route. I've been noticing lately that I no longer dream of him not having PWS. He is, like Ben, just so awesome as he is -- I know too he is stronger and more pure in his intentions in the world. And of course we are all better off for having him, just the way he is, in our lives. However, I still would choose Oscar without PWS if I could...because I know he could live his life more freely and follow his dreams more easily if he wasn't burdened by this disorder. I don't grieve my life as much as I used to -- but I do grieve his and the restrictions he will always live with.

Still hoping to be able to watch the rest of the TVO Panel Discussion "When your Child has Special Needs" were great (!!), until my computer stopped downloading.

Your post moved me in so many ways. I always come back to feeling that everything would be alright with Gabriel if society would let it be. Does this make sense? My most difficult memories when trying to cope with Gabriel having a life long disability involves other people. I've learned that my perceptions are dependent of being socially accepted. And I'm working on changing it.

When you write: "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."

I feel that, too!

I know how hard it is for Gabriel to zip up a zipper or grasp a crayon or stutter through a sentence because we ask him to say sentences. My son will work harder all his life in hopes that somewhere in this life, he'll have a life of his own.

I must read Buck's memoire. Funny enough, I've read two of her books but didn't think to research more of her own story! She's a brilliant writer and I think of her as an artist with words.

Thank you Elizabeth! It's great to see you here Mary!

Mary, you wrote: However, I still would choose Oscar without PWS if I could...because I know he could live his life more freely and follow his dreams more easily if he wasn't burdened by this disorder.

I think Oscar is verbal (right?) so perhaps you have a much clearer sense of what his dreams are (and perhaps of how his condition might interfere). Because Ben can't articulate his dreams clearly to me, I don't assume that he can't follow them (or that he has an internal sense that he is not able to follow his dreams). If he didn't have his genetic condition and related intellectual disability and way of looking at the world, he wouldn't be Ben, and he probably wouldn't have the same dreams.

I certainly wish I could eliminate all physical pain and any feelings of exclusion from Ben's life. But I guess I'm not convinced that his life would be better or richer if he didn't have an intellectual disability. I just think it would be different. I realize some will think that is just my way of rationalizing the fact that he has an intellectual disability.

There is part of me that feels that Ben is who he is and perceives the world the way he does partly because he has an intellectual disability -- and in a good way. But perhaps I am just deluding myself or am influenced by feeling like I don't want to betray who Ben is by suggesting that there could be a "better" version. Again, I'm focused on learning disability here, not physical problems (as I certainly wish he didn't have to experience any physical pain).

Hi Lianna -- I'm always happy to see you here. I think social acceptance is the number one barrier our kids face.

But it's also really hard for us parents when we feel our kids aren't being accepted. Before I had Ben, I cared too much about what other people thought -- I was too influenced by how I felt others were perceiving me.

So it was a big deal for me when I sensed that other people felt my son was a tragedy. Early on, I actually thought I could control what others thought about Ben, and whether they were judging him. My radar was on high alert to see whether people were looking at him, or treating him differently.

Fifteen years later, I can say that most of the time now I don't care what they think. To a large degree, I'm not looking to see what others are thinking of my son because it doesn't matter to me (unless they're doing something that's making him feel bad! -- then look out).

Part of the process for me has been giving up a lot of what I now see in the past as being trying to project an image I thought others wanted to see of me. I was a perfectionist before my son was born, but I had no concept of how distorted and limiting a way of looking at things that was.

Part of the great gifts of my son (and I'm sure of Gabe) is that in accepting our kids for who we are, we can more easily accept ourselves, just as we are.

And it's so true what you wrote about the real challenges our kids face with doing things that the rest of us take for granted. I never knew, until my daughter was born, how effortless typical development was. They learn everything by osmosis. Their skills are largely gifts. And I recognize this in myself now. How much I was just given in life, and how little I had to work for it.

Buck is a beautiful writer but I didn't "love" the Child who never grew. It was more that I wanted to read it, finally, because I had been so scared of reading it early on. Hope Gabe is feeling better soon!

What a beautiful post! Thank you for sharing so eloquently. I too mourn more as my son gets older, but lately I've been giving his autism a lot of thought.

Would I trade it in? Though I'd love to take some of his pain away, that would also mean taking away his amazing gifts, and I don't think I could do that.

I don't expect anyone to read this it's obviously a comment long after the fact. But I don't think it's just denial or rationalization, to feel like someone would be different without a disability.

Disabled people of all kinds have mixed opinions on the topic. But basically -- no matter what kind of disability someone has, if there are people with that disability who are able to communicate their opinions in a way other people understand, then at least some people with that disability will be saying "We wouldn't want to be nondisabled because it would mean being someone else." That includes people with assorted developmental and cognitive disabilities including intellectual disabilities. That includes people who spent a lot of their life hearing that because they had a (real or presumed) severe intellectual disability they'd never communicate in words, but later learned to say things through speech, typing, signing, picture symbols, etc.

So I would imagine that people without (at this point in their lives) reliable language, have the same mix of opinions on the matter that other people with disabilities have. And in many ways it's better for us if we know our parents accept us as we are -- no matter how we ourselves end up feeling about the matter.

Also people confuse the way society treat us with the way our bodies work. Like: There is nothing about my body that make an ICF/DD or a nursing home exist, not even anything that makes one necessary. Those are ways other people choose to respond to the existence of people like me. They aren't the result of our existence or the form that existence takes. Treating these things as sad but inevitable just makes them more inevitable. And to the extent that they cause, worsen, etc. our suffering, that suffering isn't all about our bodies either -- who we are, what type of person we are, how our bodies work, does not cause this.

And I think you're very right that we'd be someone different without being disabled. Being disabled almost always means huge differences in how your body works. Which is a huge part of who all of us are. Some of us see that more than others. And it certainly isn't all of who we are. But it's important when people realize it's not separate.

(Understanding that we are, first and foremost, human beings, does not mean pretending our disabilities don't exist. It just means not confusing our entire personhood with what we can or can't do, things like that. It's hard to put into words the difference. But there is a difference. People, including most people with disabilities, often think there's one of two choices: See our disability, and don't see us as a full human being, and don't see our disability and therefore see us as a whole human being. There's a third option (and doubtless fourth, and fifth, etc.): See our disability, and don't let that stop you from seeing it in the context of us being a full human being. And there's nothing about this that conflicts with the quote, "We're people first, disabilities second" which comes from the life experience of being treated as a walking brain malfunction with the humanity gutted out. Which I can say we are most certainly not.

And yes, I do have developmental disabilities. (I've been officially labeled with several, the individual labels don't matter much here. Unofficially labeled with others.) And other disabilities. And some days all I wish is that people could see me as a human being. But in order to see me -- to see anyone, truly -- you can't ignore a big piece of how my mind works, how my body works. And trust me each of us has a mind, has a heart, has a body, and has a soul -- even if they sometimes look different, even if they sometimes are different, they're never missing.