Mama and Dad

A wonderful social worker here at Holland Bloorview sent me a list of commonly asked questions by parents. 'How to explain your child's disability' was at the top of the list.

This made me wince a bit because when my son was younger I was more proactive in explaining his differences -- both to him and to others. But somehow I seem to have lost my touch.

Because of Ben's communication problems I've never been forced to answer questions because he asks them. When I do bring up the topic it's intentional and from my perspective. I probably don't talk about some of the harder aspects of his condition in a way I would if he was to question me directly.

I honestly don't know how much he thinks about his differences or whether he just accepts that he is different. The only recent question I remember is Ben asking when Darcy and I grew tall. He has severe short stature.

When Ben was young I explained his differences in a simple and functional way. For example 'he knows what he wants to say but his muscles won't listen to him.' Or 'he doesn't grow the way other kids grow.' Or 'he uses sign language to talk.' Or 'that's just the way his ears were when he was born.'

I had a more sophisticated explanation ready for the later years. I would explain that our genes are like an alphabet that when put into words and sentences tells the body how to work. But Ben is missing a couple of letters. So his body isn't getting the right instructions.

I've only used this explanation once, when one of my daughters had questions. But in general my other kids don't ask questions about Ben. And sometimes I think that's because they know it's still a painful subject for me.

I know it's my job to educate and reassure them. But sometimes I just don't have it in me to be upbeat and okay with his syndrome.

There's also a part of me that sees Ben as 'different' but not disabled and somehow lacking, which seems to be the common public understanding of the word disability. So there's a part of me that bristles against putting the focus on his disabilities when talking with him, his siblings or others. I’d much rather talk about how many fish he caught at camp or how his being fills us up so full that when he’s away our chests hurt. The first couple of days, we kept thinking we could hear him and had to remind ourselves that no, he was gone.

And perhaps there is even a part of me that wants to deny some of his disabilities. For example his intellectual disability. Maybe there's a part of me that believes that if I just don't talk about it, it isn't real.

Ben wasn't diagnosed with an intellectual disability until he was 13. He is hard to test, and the first thing the psychologist said when she finished was: "He doesn't have mental retardation. He has the ability to reason." Then he scored worse on the tests than she expected.

When we were preparing for his life plan day, one of the descriptors he chose to share was that he was smart (in addition to gentle and funny). And he is, in an unconventional way.

I was reminded of how I really don't like explaining Ben's disabilities the other day when I met with Gary Bunch, a scholar in inclusion at York University. Gary agreed to meet with me to talk about Ben's school placement next year.

Ben is not going back to his segregated school. He is going to a regular high school that has a unit for students who are deaf and hard of hearing. These students don't have intellectual or physical disabilities. They are quite typical other than their hearing loss. They have some classes in the unit and go with interpreters into regular classes as well. Ben wouldn't normally be placed in this program because our board groups children in special-ed by intelligence (I wonder if I’d developed my alopecia young if I’d have been placed in a class for only bald kids!).

The board is allowing this placement because I pushed for it and involved our school trustee and superintendents.

I have a lot of concerns about how Ben will do, but I know that I don't want him to live his entire life in a segregated setting and now is the time to prepare him for a larger future. As I spoke with Gary about the transition he reminded me of how important it will be for me to educate the teachers and students about Ben.
In the past I've never had to explain that it's hard for Ben to learn.

We never told Ben that he had an intellectual disability when he was diagnosed. I realize this probably goes against parenting and disability ‘best practices’ but a part of me didn't want to tell him that it's so much harder for him to learn. I was sick of the multiple health and physical disabilities he was already dealing with. Every time we got a new diagnosis, it felt like a part of him was being taken away. I didn't want to take anything else from him.

For some reason, talking about how his muscles don't work properly is so much easier than saying that his brain doesn't work properly. I don't want to tell him that, much less describe it to a class of high school students.

But I guess it's a part of coming to terms with my son’s syndrome, something I thought I had already done so long ago. It surprises me when it sneaks up on me, the grief and resistance that is still there after all these years.

Something miraculous happened last night.

My son Ben, 16, played a game of Scrabble with me. This was miraculous because Ben has a terrible time focusing, which makes game-playing challenging.

But this time Ben was interested. He even enjoyed moving his letter tiles around to look at word possibilities.

He came up with “ARM.” Then he came up with “ALY” – the name of his cousin, though she uses an “I.” I was ecstatic. Later he produced “ICON.” I don’t know if that was just a lucky guess because he couldn’t speak to explain it.

I had to keep score because Ben can’t add.

We had a lovely time, but I couldn’t help thinking that he would never be able to play at one of our family gatherings, with his cousins.

Just the day before, we celebrated my birthday at my mom’s house. Scrabble is a competitive game in my sister-in-law’s family. Ben’s cousins are brilliant students – one in second-year university already holds a prestigious research grant. My SIL rarely lays Scrabble tiles down without forming double words and knows all the obscure ones most people have to look up in the Scrabble dictionary. My other children joined in the game and it moved swiftly around the table, with words like ‘FEDORAS” and “FOLLOWED” filling the board.

Ben sat off on his own in a chair, reading an old picture book that had something to do with acorns and adventures and making the odd sounds he produces because he can’t speak. He couldn’t participate because of the fast pace and complex language.

And somehow I couldn’t help thinking that this Scrabble game represented the value our family had always placed on education and academic learning. And it made me think how I, too, in the past had revered intelligence and somehow felt it was an ability a person earned through hard work. To me it seemed to be a higher or more refined quality, let’s say, than physical beauty or athleticism. In fact, I once had an argument with a university friend who said if she had to choose between beauty and brains, given our culture, she’d choose beauty. To me that showed a certain superficiality and materialism that I didn’t associate with intellect.

But since my son Ben was born I’ve had to acknowledge that my intelligence had little to do with anything I ‘did’ or ‘‘worked hard at’ but was, instead, simply a gift bestowed upon me at birth. I was lucky.

My son was unlucky and will always struggle mightily to learn and to retain information and ideas in his head.

He can’t join in the family games of Scrabble and he won’t enjoy the intellectual growth, social life and freedom of university.

And while I was sitting there watching our family play Scrabble and Ben was babbling to himself and reading or playing with his Star Wars characters – no doubt with intricate storylines playing themselves out in his silent imagination – I couldn’t help remembering that when I was pregnant with him, my SIL had said: “We have to be careful not to compare our children.”

Sometimes I envy my brother’s life. His child-rearing is coming to an end and he’s able to take great satisfaction and comfort in his children’s burgeoning independence.

But rather than wishing that Ben could be more like his cousins, I think my real wish is that my family better knew the inner world of Ben. They don’t know his sign language and they don’t know how to interact with him. I don’t know if they’re able to see past his odd and anxious ways.

I wish I could tell them about how Ben came up with “ARM” and “ALY” for Scrabble and they’d be as excited as I was. I wish I could tell them that when I was prodding Ben to send an e-mail to his dad yesterday, he chose the correct “too” in “I miss you too” and my heart leapt. But we don’t have a common frame of reference anymore. We’re still playing Junior Scrabble and they’ve moved on to post-graduate work.

I assume they feel sorry for us. I think that’s how I would have felt about our situation, before it happened.