Disability²

It was Christmas as usual (and unusual) at our house this year. My 17 year old had a cold as usual. I couldn’t find aides to work as usual. I burned part of Christmas dinner, as usual. It was unusual in that it was my 12 year old’s first Christmas at home (we went out of town last year for her first Christmas since joining the family). It was unusual in that we had a White Christmas with a record-setting almost 10 inches of snow. Typically Denver does not get that much snow, and it is very unusual to have White Christmas’s two years in a row. Kids here are more apt to be able to ride their new bikes on Christmas day, rather than use their new sleds.

My 17 year old got her usual gifts — a new slinky, a new set of handbells, and some electronic v-tech toy that lights up and vibrates. And, per usual, she had no interest in the gift wrapping or unwrapping. She has no joy in unwrapping gifts, and will explore them only after they are unwrapped and handed to her, provided she doesn’t have something better to do like sleep. I’ve finally stopped trying to create parity in numerosity and value between her gifts and the gifts her sisters get. She doesn’t care that I can buy her slinky off the dollar rack, or that her bells cost less than $15. They are the things she enjoys, and that is the point of gifts. Of course I do wrap up necessities like socks, toothbrushes, and new pajamas like I do for her sisters, but that is for our benefit, not hers. I always try to come up with a gift that is something she will enjoy, but that is new and different. This year it was a bead curtain. She enjoys it, but doesn’t get the gift part.

For years I have felt guilty over the inequality of her gifts, her lack of excitement, and even my attempts to force her involvement in the trappings of Christmas. I think I am over the guilt about the gifts, but I feel like I am walking a tightrope, balancing between letting her be herself, and accepting who she is, and pushing her to be more socially involved. I never know what the line is between letting her be herself, and allowing her to withdraw into her own world without interacting with the rest of us. Sometimes that line is bright. On Christmas morning, when she refused to wake up for gift unwrapping, it was clear she was choosing not to participate, and there was nothing I could do about it. I put her back to bed, and left her gifts under the tree until she woke in the afternoon. Sometimes she has to participate in something because the rest of us are — like Christmas Eve services at church. At other times, there are glimmers of enjoyment. She seems to enjoy me reading ‘Twas the Night Before Christmas, especially as my signing skills have improved, and I don’t have to skip parts because I have no idea how to sign things like reindeer. She definitely enjoys going to the Nutcracker.

The tightrope feeling remains about so many other things, at Christmas and year ’round. I am not sure where that line is of including her, forcing her involvement, and allowing her to have some measure of self determination that is appropriate for a young woman who is nearly a legal adult.

This entry was posted on Wednesday, December 26th, 2007 at 8:01 pm and is filed under kids with disabilities, on parenting with a disability. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.