Part 6 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series is being re-shared and posted here on the weekends (plus Mondays) through the month of October 2012, as part of the 31 for 21.
I thought it was a good idea.
Natalie and Drew, two of Jessie’s classmates from preschool, have been taking gym classes once a week during the year and they love it. They get to run around, climb and clamour, jump on trampolines, and balance on beams raised to incredible mom-defying heights.
Now I know running is something kids just do, something most parents try to control. But for Jessie, even though she took her first step at a relatively young age, running is not something she just does. Fast, now fast she’s good at—fists clenched tight, knees stiff, eyes concentrated and fierce and her little feet barrelling across the expanse of open space. But if you don’t lift your feet up high an risk that moment of balancing one foot, you don’t run. You kind of, well, waddle fast.
And if you don’t or can’t run when you’re a three and a half year old, you miss out on all kinds of opportunities—like being the first on to the tricycle or being part of a game of chase.
So gym class, besides leading us to this very definite goal, would be fun, right? Jessie thought so. We went to visit the gym club and she stood riveted to the window as she watched other children bouncing on the largest trampoline she had ever seen, climbing up the tallest ladders, and rolling and balancing in brightly coloured tunnels. “My turn?! My turn?!!” she kept signing and saying as I tried to explain to her that we were just here to watch. I promised that we would come back to “gym” and she could have a turn. As I watched her, I knew this would be a great idea.
I called the club and registered her for a Thursday morning class. I explained that she had Down syndrome, liked to go fast and climb high, and used sign language. No problem they said. I breathed a sigh of relief.
I still get tense when I make phone calls like that. I used to first explain that Jessie had Down syndrome and then ask if we could participate—not knowing what kind of attitude I would run into. Instead of being reactive, I’m now more proactive: her we are, how can we do this? And to be perfectly honest, I have yet to run into a problem—but I’ve always picked our activities carefully—the Y, the library, places that I knew were guided (at least in theory) by inclusive philosophies. Places that I knew wouldn’t or couldn’t slam the door in our faces.
So we go ready for gym class. I bought Jessie new shorts and a top, we practiced jumping and talked about the big trampoline. The big day arrived. I had Jessie so pumped up she tried to leave the house before breakfast in only her diapers. “Jessie! Where are you going?” “Gym” she replied as she marched out the door. Dan rescued her and then we let him go to work, promising to call later. We did the dishes and played trolls waiting for it to be time to go. Finally, we headed out the door to the car. Which wouldn’t start.
I should have gone back to bed right then, but having convinced Jessie that gym class was her destiny, and myself that the first class is always the most important, I blithely marched in to the house and called a taxi.
When it arrived, she wouldn’t get in. “No taxi, no taxi! Gym! Gym!!” I tried to explain that we were taking the taxi to gym. But in Jessie’s mind a taxi ride was a taxi ride and gym class was gym class. Mommy drove the car to gym and a taxi ride, well, a taxi ride was just foreign territory. I wrestled her into the car, the taxi driver just gritted his teeth and drove. Jessie fell in love with not sitting in a car seat. When we got to the gym club, she refused to get out. “No out. No out. Taxi! Taxi !!” I wrestled her out of the car and left the driver with a big tip and a big grin.
Inside Jessie thought she had died and gone to heaven. All this stuff just for her! There were at least six other classes going on at the same time and Jessie had a hard time figuring out where she was supposed to be, who her teacher was, and what she was supposed to be paying attention to. I stayed to sign and to try to keep her with her class.
It was impossible. The last thing Jessie wanted was for me to direct her, and it seemed that the last thing the teacher wanted was to have to deal with Jessie in addition to five other three year olds. Jessie wanted to jump and explore all the equipment; she had her own agenda and was not going to be swayed. I wasn’t sure what to do. Half way through the class, having battled with Jessie for most of it, I carried her out kicking and screaming. I couldn’t blame her for wanting to try everything, but that wasn’t the way the class was set up. I sat her down in the grass by the fence, turned my head away an started to cry. Out of anger, out of frustration, out of fear.
We’ve had such an easy time of it up to now. Everyone welcoming Jessie’s presence and really trying to find ways to include her. Gym class felt like the beginning of the end. Reality hitting us in the face.
It’s fine to say that your program is open to people with disabilities, but you have to do more than just open the door. You’ve got to find ways for them to participate in a meaningful manner. I was angry. Angry at them for saying “no problem,” when in fact Jessie posed a problem. Angry at them for putting her in such a confusing situation, for not giving her the time to explore or finding ways for her to follow her class. But more importantly, I was angry at myself for not doing more preparation, not going I in to talk to them about Jessie and her needs, for assuming that when they said no problem, they meant it.
We haven’t gone back to gym. We’ll find some other place to run and jump and climb.
Addendum: I was so timid then! And didn’t know much about 2 year olds I guess! Reading this now, Jessie’s behaviour doesn’t seem so different than that of any other two year old! And just in case you’re wondering where we went to run and jump and climb … it was back to that gym club, where Jessie participated until at least grade 4 or 5, along with her friends from preschool and elementary school. And we had stellar teachers and great adaptations. What happened that day? I’m not sure. What brought us back? Other parents from preschool who were convinced that all our kids should do gym together and we’d find the right teacher. Ah, community!