Wednesday, August 21, 2013

Isolation and Inclusion

Today my son started first grade. There was no busing today, just hundreds of parents and kids in their various spots along the school. Nico was happy to walk from the car to school (it was a longish walk due to parking hundreds of parents) and was willing to leave the playground alone, but got very upset when we approached the line. He yelled. He resisted. I was carrying his backpack and some extra bags, so picking him up (when resistant) was difficult. I felt eyes turn to me and Nico - as happens because when someone shouts wordlessly and loudly, you turn to look - then slide away. There was no way he was going into the scrum/lines of kids and parents waiting to go into class, so we eventually found a spot at the edge and sat down, bending in the middle to hide his face.

I sat with him on the asphalt for a few minutes as around me parents and children chatted happily. He was quiet, so no one was looking at us, and gradually the special ed teacher and his aide came and found us. As the second graders went inside, Nico stood up and took my hand and told his aide, "Bye." After a few false starts and some re-collapses to the ground, but no more shouting, He finally took his aide's hand and walked inside with her, though not especially joyfully.

Eventually, his actual class followed.

This is hard. Shame and embarrassment, mixed with defiance (how DARE you look at me kind of thing) are normal responses for parents of kids with disabilities. I generally reject these emotions, but am allowed to feel them when everyone stares at my child. I get over that quickly.

The real issue is that Nico chooses to sit apart, isolated on the asphalt, waiting to go in, making no contact with other parents and children. I don't know a single name of a single parent of any of Nico's classmates. They all seem to know each other. I don't know the kids' names, though many seem to know Nico. Somehow I need to make these connections, I need to help Nico make these connections to the extent possible.

Of course, in the end, he took his aide's hand and walked inside to the first day of class, where right now everything is hopefully going pretty well. 

I sometimes get angry when people deny the disability aspect of Down syndrome - the "just different" rah rah rah cheery folks, because it can make you feel ashamed when things get really hard. We need to own the challenging stuff too - recognize it, discuss it, ameliorate it, empathize, and avoid twee sympathy and platitudes. Things get to be hard. We get to be tired. We get to cry. We get to complain. Doing these things does not make us bad parents, ableists, or somehow devalue our children's existence. We get to look straight at the hard thing, agree that it was challenging, then try to find our way through or around it. That's my goal anyway.

And this morning was hard.