I spend a lot of time explaining Henry’s disability to people — teachers, coaches, other parents. I try to do this proactively, before there is an issue or a problem, because I want to be sure that everyone understands that I’m not making excuses for him. He occasionally needs specific accommodations in order to succeed, but beyond that, I don’t want anyone letting him off the hook just because he’s different.
But it can be hard to distinguish an explanation from an excuse, and Henry and I are both having to work to see the difference.
The summer before sixth grade, we took Henry back to the psychologist who initially diagnosed his ADHD (when he was five) for another round of testing. This time she gave us a slightly new set of labels to work with: generalized anxiety disorder, disorder of written expression (or dysgraphia, if you’re old school like I am), ADHD (again) and sensory processing disorder. Taken together, she told us, it added up to Asperger syndrome, and she gave us some recommendations on ways to talk with Henry about being an Aspie, as well as resources and strategies for helping him connect with other kids like him.
We had known two things going into this round of evaluations: the first was that we would need to talk with his teachers about his quirks and how they affected his ability to function at school, both socially and academically. The second — and in our minds, the more difficult — part was going to be talking to Henry. Because the last thing any kid wants to hear, particularly in middle school, is that he’s different from his peers.
We had already talked with Henry about his ADHD. When he was in third grade, my husband read “The Lightning Thief,” the first of the Percy Jackson and the Olympians books to the boys. Percy, the main character, has trouble in school; he is dyslexic and has ADHD. Of course, it turns out that he’s really a demigod, the son of Poseidon and a human woman; his dyslexia comes from a natural inclination to read Greek, rather than English, and his ADHD is a sign that he’s hardwired for battle, not for sitting in a middle school classroom. Either way, the novel gave us the opening we needed to talk with H about his own ADHD and how it affected his brain and his behavior — and how, while that made him different, it wasn’t necessarily a bad thing.
While Percy Jackson was an easy way to open the discussion about ADHD, there aren’t any wildly popular adventure novels for tweens that focus on demigods with anxiety and poor social skills. So we just had to plunge ahead and figure this one out ourselves. I eased my way in by talking with Henry, early in the school year, about his handwriting; I told him that his English teacher had given him permission to type his vocabulary homework rather than requiring him to write the words and definitions and sentences by hand. We talked about why his handwriting was so bad and why writing was so hard for him. “You’re not lazy or sloppy,” I told him, “your hand and your brain don’t communicate properly. It’s a neurological condition. It doesn’t have anything to do with what kind of person you are.”
“So I just can’t write neatly?” he asked.
“Right,” I told him. “But that doesn’t mean you can’t do this work. You just need to do it differently from the way everyone else is doing it.”
In other words, accommodations were important, but excuses would not be accepted.
For Henry, middle school has been all about figuring out when and how to ask for help. I want him to understand that there will be times when he needs to ask for special accommodation — for a alternative assignment or an adjusted due date or extra time on a test. Sometimes this is an easy thing to do: He types all of his English and literature homework now, rather than hand writing it (although often that means that he dictates and Wade or I do the actual typing, because he’s still nervous about the keyboard). We’ve talked with his teachers about having him take essay tests in the computer lab next year, rather than writing them out longhand in class. He wants his own laptop, and we’ve told him that as soon as he can type proficiently, on his own, we will get him one. I’ve found typing tutorials he can do this summer, and he says he’s ready to start working on them.
But managing his dysgraphia is only one piece of the puzzle. This winter, Henry struggled with an assignment where he had to read and summarize slave narratives; no matter how many times the teacher and I talked it through with him, he was unable to do it. In the end, he took a zero for the assignment, without complaint, although it clearly didn’t make him very happy.
Later, when I told our therapist about this, she reminded me that Henry struggles with pragmatic language. He’s not able to draw out the salient points in a conversational narrative like the ones he was assigned. He wasn’t being stubborn about the assignment — he honestly couldn’t do it. This was a case, she told me, where I should have asked for an alternate assignment. Instead of summarizing the narratives, she said, he could have looked at the cargo lists from the passenger ships and written about those. That kind of factual document — how many humans, how many animals, how much other cargo — would be easy for him to understand and make sense of, unlike the verbatim stories of the slaves.
That had never occurred to me, honestly. I know that there are things Henry struggles to do, but I am extra cautious about making sure he never uses his disability to get out of anything. There is a fine line between explanation and excuse; while I hope he is learning to explain how and when his neurological differences make it necessary for him to ask for accommodation for some tasks, I do not ever want to hear him say that he cannot do something because of his diagnosis. And so far, he hasn’t. But I’m learning that sometimes, he — and I — need to do just that.
Making this even more complicated is the fact that we’ve had to learn to recognize the everyday things that Henry cannot do because of his disability. His anxiety makes travel almost impossible; his ADHD makes it hard for him to plan ahead. His room is a mess, he only eats ten foods, he does not like new places. We have come to understand that things that seem simple to us are sometimes overwhelming for him, and we make allowances for that. But it can be difficult to explain to people who are not familiar with Henry and his issues without sounding like we’re making excuses, for ourselves and for him.
What strategies do you have for explaining your child’s disability to other people? How do you handle it when other people clearly think you’re just making excuses?
Subscribe to blog via RSS