Ben is twelve, going on seventeen. He is hairy, smelly, eats more than I can afford, and likes to laze around on his bed, watching YouTube videos and listening to music. He also whinges when I tell him to practise his bass guitar, but then plays for hours at a time. He regularly walks in the house with the mud dribbling off his soccer boots onto my (inevitably) recently vacuumed hallway.
He goes to our local primary school, in Grade six, but soon enough, it will be time for high school. He’s excited about the prospect. We’ve looked at a few schools together, but the one he loves is the one I went to, as well as his Nana, Great-Grandma and Great-Great-Grandfather. I suspect he’ll be the first of the fifth generation at the school. The principal told me he thought Ben would be “an asset to the school”. He’ll also be the first with Down Syndrome.
He’s not scared at all. I’m terrified. The kids at his local primary school have known Ben since they were all little, and they knew no different. They might have noticed he didn’t talk much, and that he had his own pillow in the corner of the class so he could have a lie down at the end of a long school-day, but occasionally some of the other kids would use it too, in Grade one or two, at least.
As he’s grown up, the birthday party invitations have slowed down. A lot. He doesn’t have a clique or group that he hangs out with at lunchtime. His best friend at school, the most beautiful girl in the world, Riley, enjoys his company, but in the words of Dave Hinsburger, an American disability advocate, “You will always be more important in the life of someone with a disability than they are in yours.” Ben has had a crush on her for years.
An occasional comment from an unthinking teacher at his school however, reminds me that Ben doesn’t have many friends at school. And they might subtly discourage him from playing school sports, but we work through these things, and there are enough great teachers and kids there, that I don’t think he’s bullied or teased any more than the other kids.
But here’s the thing. These kids have all grown up with Ben in their lives. When he starts at high school it’s going to be a whole ‘nother ball game. And they’ll all be teenagers. And they’ll be nasty, and cruel, and he won’t have any friends, right?
For a kid with Down syndrome, Ben has pretty good manners, he speaks relatively well, can hold a conversation, throw a basketball around and read and write enough to send me a text to remind me to update the credit card details on my iTunes account. I credit a great deal of his skills to having been educated in a regular class in a regular school with an hour or so each day of extra help.
This is where I get scared. What will happen once he turns up at a school full of “typical” kids who’ve never met him, who don’t know that he’s a bit of a wuss if a ball hits him, who isn’t very good at “nose maintenance” when he’s got a cold? Will they laugh at him? Will they set him up as the fall guy, and teach him to do stuff that will get them a laugh and land Ben in trouble? Will they scrunch up their faces, point and run away from the “tard”? Will he be lonely?
I’m terrified for my boy. My beautiful, loving, kind, generous boy who has never hurt anyone. The alternative of course, is to find him a special class, or a special school. Some of them have behaviours that will scare him, or worse, he’ll copy. And I don’t reckon they do projects on immigration, and government, or do chemistry experiments in special schools. Ben loves that stuff. And research has shown, convincingly, that kids with Down syndrome educated in mainstream classes finish high school academically (and language-wise) nearly three years ahead of their peers in special classes.
I’m not worried about Ben out of school hours – he has his scout troop, his Special Olympics and best mate Charlie, who also has Down syndrome, but so much of our teenage years are spent in school. Is he going to be OK – the only kid with an obvious intellectual disability at the school?
Sam Paior has tried many things, from pulling beers, going to uni to become an architect, Crisis Communications, managing a hospital switchboard, running for Parliament, writing and supporting parents of kids with disabilities. She enjoys www.ParentsHelpingParents.org.au which she started with a few other parents of kids with special needs.
As parents of “typical” kids, have you ever spent time talking to your teenagers about disability? Would your son or daughter find it within themselves to make friends with a kid like Ben? Would you encourage them?