Finding a World Big Enough for My Twice-Exceptional Kids
Every day, when my kids come home from school, the first thing I ask them—like most parents do—is about school. But unlike most parents, I do not expect my kids to say that school was fine.
This is a monthly column by Katie Rose Pryal about family life, mental illness, and raising disabled kids as a disabled parent.
You’re face to face with greatness, and it’s strange
You don’t even know how you feel
PleasePlease tell Nine to be more aware
Be more aware?
playhang outcome over
Just yesterday, I got an email from Nine’s writing teacher. Nine has been back at school for one week, so I suppose it’s about time, once again, for me to start getting emails from teachers. This particular email told me that Nine struggled during journal writing time. The prompt was this: If you could have only one wish, what would it be and why?
Every day, when my kids come home from school, the first thing I ask them—like most parents do—is about school. But unlike most parents, I do not expect my kids to say that school was fine. I expect there to have been problems. Ever since school has started for my children, there have been problems.
Yesterday, when Nine walked in the door, he said school was merely okay. I looked at his face and saw the sadness there. So, I grabbed the dog’s leash and he and I headed right back out the door to take a walk. On dog walks, Nine likes to collect acorns, look for cicada shells, and tell me secrets.
Nine told me that he was supposed to write about a wish, but he couldn’t do it. “There were just too many wishes,” he said. “How could I pick just one?”
Like I do so many times a day, I felt in awe of my child. How, indeed. He’d recognized that the task was impossible.
“I get it,” I said. “I really do.”
“I could think of a thousand wishes,” he told me, kicking a rock down the sidewalk. “So I couldn’t write anything.”
In my head, I quickly ran through the options. Should I teach him to play the game? To invent a fake wish to write the fake essay?
Then I thought about the struggle he described—how he wanted to wish for all the children to have food, and for all the lost pets to have homes, and for all of the unhappiness in the world to be made happy—and I knew I would not have narrowed his choices down for anything. My son wishes big, and that’s a good thing. There were just too many wishes. I really did get it.
Were he a little older, I would have convinced him to wish for more wishes, like I would have done at his age. At his age, I would have wished for Aladdin’s lamp. I would have written, “My wish has five parts, and here is part one.” The point is, I would have melted down, too, but perhaps a little differently.
When we went to bed last night, to make his teacher happy, Nine decided to wish for a new a kitten. I allowed myself to feel a small prickle of disappointment.
My job as Nine’s mom is to give him as many open doors as I can. I can’t give him unfettered access to a computer, so I got an old set of World Book encyclopedias. (They’re often easy to find on Craigslist, or at your local thrift shop.) Discussing the out-of-date information is a great parent-child learning experience. And the books are nearly infinite in their knowledge—for Nine. When he’s older, and needs something more, we’ll be ready.
A World Book is cheap. Easy. Familiar, too. After all, it’s what my husband and I both read during our own awkward childhoods. The same entries, even. Horseshoe crabs. Sharks. Malcolm X. Cats. What isn’t cheap is the new private school where we send Nine and his brother Seven, a school for twice-exceptional kids like mine. Where I expect a teacher to be able to recognize the kind of roadblock my kid hit yesterday.
On our walk, I asked Nine what happened after he came up with too many wishes in his head and was unable to write.
“She gave me two warnings. And then I started to cry.”
I kept my expression clear, but my brain churned. The teacher gave him warnings? Why? Couldn’t she see, given that she has only three students and Nine’s anxiety diagnosis sitting in a folder on her desk, that he wasn’t being disobedient, but rather something else entirely? Couldn’t she see that he was suffering?
How much money do I have to pay, how far do I have to go, how much do I have to bleed for the world to be sympathetic to my children?
How far do I have to go, how much do I have to bleed for the world to be sympathetic to my children?
After the dog walk, I arranged a phone call with Nine’s teacher. When we spoke, she was receptive. It was apparent that she meant well. She went out of her way to get strategies to work with Nine. In the past week, the wishes weren’t the only roadblock he had run into in writing class. And unlike so many teachers we’ve had over the years, she listened to me: She asked even more questions after I stopped talking and she didn’t act like she knew more about my kid than I did.
When I talked to my husband about the call, he asked one question about the one thing that bothered me: “What did she say about the warnings, though?”
“She didn’t mention those at all.”
My husband was silent, waiting.
“I had to make a choice,” I told him.
He agreed, knowing something about compromises.
I chose to let it go. For now. But I still remember the moment when my own world shrank to the size of a nutshell, when I asked my friend to play and realized there would be no more playing. I had to spend the next twenty-five years expanding my world again.
So I will never be the one who says to my children, You must dance to the beat. I will never be the one who says, You only get one wish. I will lay my body down so they can pass over the space where they must be bounded. I will do everything I can so they never have to stop wishing.
At the resort in the mountains, I remind myself how much I love Nine’s dancing. He is an energized particle, and I am in awe. I think of the dance parties we have at home, when I play Nine’s favorite songs on our family computer and we dance all over the kitchen, the four of us, Nine and his little brother Seven dancing around each other while their father and I dance together like we did when we first met—a little bit of swing, a little bit of cha-cha-cha.
I spread my arms wide, creating a spot in the middle of the resort’s dance floor. We’re going to need a little more room. I ignore everyone else around us. My husband helps me. Together, we create a place where Nine can safely carom to the music.
Katie is an author, speaker, an expert on mental disability. She is autistic and has bipolar disorder. She's the author of more than fifteen books that center mental disability, an eclectic mix, including an IPPY-award-winning series of romantic suspense novels and four essay collections on mental health and trauma (two of which won national awards). After earning her master's from the Johns Hopkins Writing Seminars, she earned her law degree and doctorate in rhetoric. She works toward accessibility for everyone. A professor of writing, she lives in Chapel Hill, NC, with her family and horses.