Disability²

First, Happy Birthday Heather! My baby is 18 today.

We drove up to Rocky Mountain Village, the local Easter Seals camp to drop off my two younger kids for a week of camp. (Heather goes in a couple of weeks). I was in my 12 year old’s cabin, helping her get settled when one of the other girls, asked incrediulously: “are you really her mom?”

“Yes.”

“But you use a wheelchair?” The kiddo was also a chair user. She must have been 10 or 11, although she may have been a bit older. “I’ve never seen a mom in a wheelchair,” she said. She just chattered away for several minutes with many questions. At one point she asked, “could I be a mom?” Clearly her counselor was uncomfortable with the question, but I just plowed headfirst into an answer,

“Of course!” The girl still had a million questions, but I needed to finish settling my 9 year old. My 12 year old was tugging on my arm.

Asiza was nonplussed. She couldn’t figure out why this girl wanted to talk to me so much, and she was more concerned with getting me to just go, go out the door. At almost 13 she isn’t particularly interested in me talking to her friends, but she was utterly confused. She didn’t get what the big deal was.

All my kids were older when they were adopted, but none of them have articulated anything about me using a wheelchair or not. Now, all three of my kids have cognitive disabilities, but this is the kid who would have articulated something. In her case, her bio sister was adopted by a family with a crip mom too, so I think for her, the concept of a disabled parent is completely normal.

The interaction, however, made my heart feel empty. While I am glad it happened, it continues to bother me that girls (and boys) with disabilities grow up and don’t think parenthood is possible for them. I know it happens, but it still makes my heart empty.

So Eden, of course you can. You can be whatever you want to me.

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.

After Thanksgiving, I sat my soon-to-be-nine and twelve year olds down and told them that Santa Claus was not real. The nine year old was relieved.

Two years ago, at her first Christmas with us, I did the whole Santa thing with her. She was almost 7, and we baked cookies for Santa to eat, made reindeer food, set out stockings, etc. I took her to the mall to see Santa, and she was chattering up a storm, until the moment she sat next to Santa. She refused to say a word. I questioned her about that in the car as we drove home.

“Were you afraid of Santa?”, I asked.

“Noooo,” she said defiantly.

“Were you nervous?”

“No,” she said with her head shaking. I asked her why wouldn’t she talk. Initially she refused to answer, but I pushed the subject a bit, and she said, “He doesn’t come,” and she refused to tell me what she wanted.

Well, that about broke my heart. I doubt she remembers her first couple of Christmas’, both spent in the hospital, and she doesn’t remember much about her birth family. I am pretty certain her earliest Christmas memories are from her foster home, the home where she had no toys. The home where her foster mom told me that she didn’t need toys because she wouldn’t play with them. The home with the foster parent who refused to let her have a power chair because she didn’t want wheelchairs in her house. The home where she shared a bedroom with an older teenage boy. The home with the chain smoking foster parent who propped bottles for infants, and “let them cry it out” whenever they were upset (and this was her behavior when the social worker and I were in her home visiting my soon-t0-be daughter). It didn’t surprise me in the least to hear that Santa didn’t come to see her in her foster home.

She still wouldn’t tell. It became clear that she was testing the Santa theory, and was refusing to tell us what she wanted. I kept assuring her that Santa did come to our house, but he couldn’t read minds, so she needed to either tell Santa, or write him a letter. After quite a lot of coaxing, she did finally tell us what she wanted — Elmo. She got her Elmo that year, and was positively silly with excitement when she did. Over the last two years, she became more skeptical again.

When I told her Santa wasn’t real, she looked positively relieved. No longer does she have to think the benevolent guy who brings toys to all kids let her down, but rather the stinky adults who were in her life.  That is an easier pill to swallow.

The twelve year old was a different story. She didn’t look disappointed or anything.  She just nodded her head in agreement.   I could ask, “Is Santa real?” and she would dutifully answer “No,” but she doesn’t believe me.  Throughout the Christmas season, she would make comments that indicated that she really believed in Santa.  She asked to sit on his lap, asked to write a letter.  She asked to set out cookies.  We skipped all that symbolism this year, but even last night, she went right to sleep so that “Santa could come.”

On one hand, I understand that she may believe forever, due to her developmental and intellectual disabilities.  It’s pretty ingrained in her.  On the other hand, she looks very typical.  Her disability is quite invisible on the surface.  She spends most of her school day with typical peers.   I know she will experience continuing grief from her peers if she expresses her belief.  I feel like I have to give her this grasp at normalcy.  If she doesn’t get it, I can accept that, but as her parent, I have to try to help her grow and develop in this way.  So, we will see what next year brings.