I never thought of Maddie as having a disability, even after her Asperger’s diagnosis. So it came as a surprise to me when she used that word to describe herself.
When she started at the special private school a few years ago, she would come home and tell me “Ruby has ADD” or “Michael has dyslexia.” It reminded me of what it might be like to go to prison. “What are you in for?” I thought it was kind of funny, and I also loved the fact that the kids weren’t embarrassed to share these parts of themselves. They could be fully honest about their challenges and not fear being stigmatized or bullied or ignored. How refreshing!
So a year or so ago, when she referred to herself as having a “disability,” I was taken aback. “Disability?” I said. “I never think of you like that.” I really don’t. She is a kid who functions in a certain way, and has trouble in some areas, but I think it’s the prefix “dis” that really bothers me. It implies “can’t” and I have a hard time thinking that she is fully unable to do anything.
I’m not entirely sure at the moment if my attitude has served me–or Maddie–well.
When Maddie was in sixth grade, she was still in public school. She had gone to our lovely neighborhood public elementary school since kindergarten and was in her first year at the public middle school. And then the shit hit the fan. Academically she was literally failing, and socially she was struggling as well. Then one day she got in the car after school and said, “I don’t want to go to school anymore.” My heart sank. She had never said that before, and I never wanted to send her back there again. Home schooling was out of the question, so I immediately sought out an alternative.
My first choice was a private school with a sterling reputation in a nearby town. It’s a small, sweet school that does well accommodating kids who have learning differences. I absolutely loved it. So I rushed to complete the applications, wrote a heartfelt essay, and scheduled a visit for Maddie. She also fell in love.
I waited eagerly for the acceptance phone call, keeping my phone attached to me so I wouldn’t miss the good news. Well, it wasn’t good news. The board of admissions felt they couldn’t adequately provide the support she needed. I should have known. Her essay was no essay at all. Her handwriting looked like she was in first grade. And who knows what her teachers had said about her in their letters? Her teachers loved her, but she was an especially challenging student, particularly because she wasn’t getting any help. I was devastated. I sobbed and sobbed, heartbroken for me and for Maddie.
And then, maybe 10 minutes after that disappointing phone call, I realized something: This is information. And that information is Maddie needs more help than I thought. It was a startling epiphany, and I felt new sense of sadness and pain. I felt guilty for not having realized this before. After all, I’m so in-tuned with my children. How could I have not been more realistic? But as I tend to do, I moved onto the next thing. No use dwelling in sadness. I had heard of a special ed school nearby as well, but I had thought she was too advanced for that. In fact, it was a nearly perfect fit. And that’s where she went the following year.
Maybe if I had equated Asperger’s with “disability,” I would have moved her to a new school sooner. Perhaps I wouldn’t have wasted time with the public middle school and then trying to get her into the other private school. Perhaps I would have better recognized what Maddie can and can’t do.
I’ve just always thought of these “can’ts” as “can’t yets.” It’s that hope thing again.
Certainly there are times when I realize she just can’t do it, like when I give her three things to do and I have to write them down to help her remember. They are usually regular, everyday things like: Take shower, brush hair, do math. You would think I wouldn’t have to add “brush hair” after “take shower,” but if I don’t, she will never think of it. She can remember all the states, but she can’t remember to brush her hair. She actually can’t, at least not yet. Is that a disability? I don’t know. Probably.
She can’t always do her homework, or get up in the morning. She usually can’t try new foods (scary!) or remember to wash her face or put her dirty clothes in the hamper or watch the clock. But I still think of these as can’t yets.
Often in the course of a day, I go from hope to despair and back again. And maybe back again. It’s an unpredictable, unstable emotional roller coaster ride of epic proportions. I suspect it’s a lifelong roller coaster. Can she or will she (insert abilities here)? It remains to be seen. In the meantime, I’m doing everything possible to get her to can.
The Year of Living Hopefully 