Thursday, July 3, 2014

When language fails

By Louise Kinross

I was trying to explain to my therapist how having a child who didn't speak had let me off the hook in terms of answering tough questions about his disability.

I was expressing concern about my son's future as an adult, but feeling stuck in terms of how to discuss it with him.

While I had talked a lot about how his disability affected him when he was little, I hadn't in recent years spelled out clearly that he wouldn't be able to drive, or live alone, or do some of the things he'd identified as dreams in his Life Plan day a couple of years ago.

When he was little we talked regularly about his Langer-Giedion Syndrome, but we hadn't done so recently.

In fact, when I thought about it, I didn't clearly identify him as having disabilities in everyday conversation. I hadn't talked openly about disability and asked him how it made him feel.

I had taken advantage of the fact that he couldn't pester me with questions like a speaking child. A part of me felt that he saw himself as different, but not disabled, and I didn't want to hurt his self-esteem. I knew I was supposed to be nurturing a self-advocate, but our communication barrier, and the sadness in my heart, got in the way.

When he was little, we talked about disability in terms of how it affected him functionally: he didn't grow like other kids/"good things come in small packages;" he needed hearing aids to hear; he knew what he wanted to say, but his muscles wouldn't listen to him; he needed physio to help him learn how to walk; other people speak, but he would talk with his hands or a machine; he grew bumpy pieces of bone on different parts of his body but they weren't usually a problem. And if they were, they could be removed.

I'd always had an explanation for his random genetic condition ready, but I'd never used it (in fact, when I think about it, I've only ever shared it with one of my daughters, when she asked for a more sophisticated answer).

The plan was to explain that everyone has genes that are like letters of the alphabet. The letters are put together in words and sentences that give your body instructions on how to take care of itself. But in my son's case, he was missing two genes, or letters. He had a deletion on the long arm of Chromosome 8. This meant that some of the instructions to the body got jumbled. There wasn't any reason that he had this condition and the rest of us didn't. It was a random error (I'd have to work on the language there). Just something that happened at conception. It wasn't fair. It wasn't just.

I was trotting out this explanation dispassionately with my therapist when I surprised myself by breaking down. "I don't want to tell him that he's missing something," I said, sobbing at the word 'missing.' "I don't want to tell him that everyone else has these letters and he doesn't."

What followed was a discussion about how it was important that I talk more openly about his disabilities and how they would shape his life options.

"He knows he has a disability," she said, "but it can provide a great deal of relief when someone's condition is explained in detail to them." 

And then, she said, I would be able to list all of the amazing qualities that make up my son, the things that seem bigger to us than what is missing.

So I told my son last night that before he went on the iPad we were having a talk. I got out a piece of paper and wrote Langer-Giedion Syndrome on it.

Do you know what that is, I asked?

Yes, he nodded.

It's the genetic condition you have. 

I jotted down a few of the symptoms: hard of hearing, bumpy bones, you don't speak, your muscles are weak. I ran my hand over a large bony growth that had appeared on his leg in the last year. Your bones are bumpy, but usually they don't cause a problem, I said. And if they do they can be surgically removed.

He gasped and pretended to hyperventilate, his way of telling me that he hates hospitals and operations.

We went through the other symptoms.

Your body has lots of genes, I said. Genes are like letters, the ABCs. When you put them together they spell words that tell your body how to take care of itself.

Two of your genes aren't working properly (in the moment I managed to avoid the 'missing' word). So sometimes your body doesn't get the right messages and it causes problems.

How does it make you feel that you have disabilities?

He looked at me but didn't respond. My son's attention for this topic had reached its limit.

It must be very frustrating, I said. And it probably makes you feel mad sometimes. And sad.

To my great surprise, my son started laughing. He'd just been watching a Jackie Chan Adventures cartoon with his brother, and I can only imagine that his mind had moved on from our serious and dry genetic discussion to the lighter fare of the silly cartoon caper.

I began to write out the list of my son's amazing qualities: Funny. Kind. Caring. Curious. Sensitive. A good friend. Smart. Gentle. Courageous.

I read them out loud.

So even though you have Langer-Giedion Syndrome, you have all of these other things, I said.

It's a small start, I told myself. But an important one. Next on the agenda: a talk about the future.


Huge hugs, Louise. I can only imagine what this is like. As you know, I'm already getting those questions and I thought I'd have more time to prepare. Jokes on me. I love Ben and you. I know I don't like to hear this but you really inspire me. You're always so upbeat and wonderful to me and the girls! I know we all have these days and I'm so glad you blogged about it so we could give you the love and support you give all of us. <3 Don't hesitate to reach out if you need anything at all!

Hi Louise, I send you a deep, loving and gentle hug. I have had these conversations with Nick and later, he had them with a social worker/therapist. There are some areas of body image and sexuality/life dreams that he finds very difficult to talk about (and the make him very sad) but the fundamentals about his disability are OK. That said, he doesn't want a mirror in his room. Nick's personality is naturally optimistic and it sounds like Ben's is too. Our challenge as Mothers having this conversation with our boys is to always remember that we are not them. Nick and Ben were born with their disabilities and have never known being someone else. That makes them much better at handling the reality of their lives than we are. Nick likes to start from a position of bravado - always. So, we talk often about the benefits of a disability as a way of exorcising the demons of despair. So, next week he has a backstage for the WWE courtesy of March of Dimes. We talked about that as one example and we joke (jokes can take you only so far when bad things happen) and I say in a queue, I'll say loudly "Scuse me, Scuse me, going to the front of the line cuz my son has a disability, Scuse me!!!" I don't know what I'm trying to say here - maybe just that our kids are more OK with who they are (sometimes) than we are, when it comes to the big discussions about the future. Perhaps Ben (and Nick) are OK living in the present and they're OK with the invitation to have the future conversation if they ever want it.

Hugs Louise. I know the on-going heartache of a child's dreams not fully lived. And having communication lapses is totally normal. We don't want them to wallow in their labels. Yet we need them to know the limitations that label gives them. That's the hardest part, because when you think of becoming a parent, you tell yourself that you will remove obstacles and encourage your child to reach for the moon. I think that's the part that makes me saddest -- having to readjust that vision for the future. Super hugs.

My son is dysgraphic. It's not even close to what you're dealing with - but he struggles with everyday tasks like tying your shoelaces and buttoning clothes. He took months to learn how to ride a bicycle - and I'm not sure what I'm going to do when he has to learn how to drive. He also struggles socially - and marks himself different from the other kids. I try to highlight his achievements - but I do need to talk with him regularly about the things he has difficulty with. It's an important conversation. Thank you for the reminder.

You all are great parenting examples with all love and struggles for your families. I'm not dealing with what you are but my family struggles as well and to hear your stories helps to bring hope for us even more each day. Thank you for sharing your stories and thank you for the reminder to ask our supper stars what they think and feel about it all as well.My son get's really up set with me when I talk to people about his special needs or that he even has special needs but I don't know how else to support him if more people don't understand it's not that he's a bad child/teen just one with more health and well-being issues than the adveraged child/teen and it's harder for him to manage most days with daily tasks,peers and authority figures,etc. Thank you for your blog.