"Research shows that classmates of a handicapped child will often defend the child instead of teasing him if they know what is happening to the handicapped child."-- The Psychology of Duchenne Muscular Dystrophy by Jos Hendriksen, Ruben Hendriksen,
Justus Kuijer and Elizabeth Vroom
We've made it a tradition to educate Rain's classmates each year about him and about his Duchenne. They are first graders now, somewhere in between the sweet dreaminess of younger days when they wouldn't have even noticed that Rain is different and the more conscious and curious days of middle childhood when kids left to their own devices can be stunningly irrational and cruel. I am in favor of information and education. I believe that even very young children can have tremendous compassion and dignity when they understand what is going on around them.
And sometimes it just makes sense to strap heavy weights to their arms and legs.
The class gave me about 20 minutes of their time during the first week of school. Here's what I told them:
* Rain has Duchenne Muscular Dystrophy. It is something that he was born with. It is not contagious. It's just part of who Rain is.
* Duchenne means that as Rain's body grows bigger, his muscles grow weaker and weaker. This can make things feel really heavy to Rain and he might get tired more easily.
* Rain uses his wheelchair to get around when he has to go a really long way, like to the lunchroom or recess, because he gets tired on a long walk.
* A person's wheelchair is a little bit like a person's shoes or pants. It's ok to say, "hey, I like your pants." But it would be really weird if you suddenly put on someone else's pants in the middle of the school day! So we don't sit in Rain's wheelchair. If you want to touch Rain's wheelchair, you need to ask him first and he might say yes or he might say no.
* Because of Rain's Duchenne, he has a really big "personal space bubble." We need to make sure that we don't accidentally knock him down or jostle him too much. Especially when he is getting up and down from the floor, Rain needs plenty of space so he doesn't fall down and get hurt.
* Rain is a really fun guy and people should play with him! He's smart and he's funny. He has some special toys that he can bring out to recess if he wants to (bubbles, sidewalk chalk, little toy cars, card games). If you would like to play with him, please do! But remember that you may only play with Rain's toys if you are playing with Rain.
* Sometimes Rain likes to play running games too and that's fine but there's a special way to do it. (This is the part of my presentation that Rain loves because he gets to demonstrate with me.) I ask the kids if they think that I can run faster or Rain can, and of course, they think that I can. I tell them that they are absolutely right and then Rain and I demonstrate by each running as fast as we can as though we are in a race with each other. Then I point out that when I run as fast as I can, I might win the race but oh no! I'm accidentally not really playing with Rain anymore, am I? So then Rain and I demonstrate a race where I'm careful to run as fast as Rain can, not as fast as I can. I ham it up and overplay my "running" and let Rain win but only by a little bit. I point out that when I run as fast as Rain can, we are really playing together and it's a lot of fun. Rain always obliges by giggling uproariously and clearly showing that he thinks this is the funniest game in the world. It's hilarious.
At that point, my remarks to the group were finished and I asked the kids to come visit me one at a time so that they could try on the weights to get an idea of what Duchenne might feel like.
I make a point to speak to each of them while I strap the weights on. I am very careful to remind them that the weights are a tool we use to help our imaginations to understand what Duchenne might feel like. I remind them that only a person who actually has Duchenne can truly know what Duchenne feels like from the inside.
Most of the kids agree that the weights are really heavy. As soon as they feel their arms and legs drooping, they are usually very clear on how it could make a person extremely tired to feel that way all the time. I ask them to walk a little, to try to lift their arms, pick something up off the floor. I ask them to imagine wearing the weights as they walk to the lunchroom, to the library, out to recess. Could you put your backpack up on one of the pegs in the hall? Could you carry one of the big bins of crayons in the art room? What about brushing your teeth?
There always seem to be a couple of boys who feel some kind of compulsion to show off. They declare that the weights are not heavy and that they could do all of their usual things without trouble. I look them in the eye and tell them to imagine the weights doubling, tripling as time goes by. I tell them to imagine having those heavier weights all over their whole bodies, day and night, all the time getting heavier. When I'm patient, there almost always comes a moment when their guards drop and they realize that I am really not kidding-- that this is something in deadly earnest which I am trying very hard to convey to them.
Rain has never had any trouble with bullying or teasing. Part of that is the wonderful culture of the school he attends, but part of that can only come from inside a person. They're good kids at heart.