Finding a World Big Enough for My Twice-Exceptional Kids

This is Mom, Interrupted, a monthly column by Katie Rose Pryal about family life, mental illness, and raising disabled kids as a disabled parent.

We’re at a fancy resort in the southern Appalachians, a sprawling hotel built by ancient hot springs. We come each summer for the swimming pools and the space for my kids to run. Here we don’t have to worry about cars and the other things you worry about when you have kids who tend to run just a little too far and too fast. Tonight, we’re at a barbecue the resort had to move indoors because of a late-afternoon southern thunderstorm. I’m watching my son Nine move on the dance floor. A kid-oriented cover band is playing “You’re Welcome” from Moana, and my son is dancing like he’s the only person in the room. Except every few moments, he turns and throws me a grin.

You’re face to face with greatness, and it’s strange 

You don’t even know how you feel

The other kids and a few parents at this WASP paradise are dancing, too. As it gets later, the dance floor starts to get crowded. And as the crowd grows, I start to feel uneasy. We don’t tend to spend too much time indoors at this place.

After a few songs, Nine runs up to the lead singer and requests a song by Imagine Dragons, his favorite band. It’s an odd request given the Disney-heavy playlist of the evening. No one else has made a request of the band. But Nine isn’t talking to the band because he’s fearless. He’s doing it because he has little sense of what is socially appropriate.

Take his dancing. He’s flinging himself around the dance floor, only occasionally encountering the beat. No one could doubt that he has joy for the music. As I watch him, I see his left arm fling slightly out of control, just a little too close to the woman in the boat-necked sweater. I see how close his sneaker comes to landing on that fellow’s loafer. My worry over Nine’s proximity to others—especially these particular others—leaves me almost unable to appreciate him. Almost. I catch his father’s eye. Please, I say to my husband with a glance. Please tell Nine to be more aware.

Be more aware? I repeat to myself, a question this time. Is that really what I want? Do I really want Nine to gain awareness, to dance stiff-armed, to rein it in?

No, I tell myself. That’s what I’ve been trained to want for him. By his old teachers before we left to homeschool last year. By camp counselors who say he talks out of turn. By the piano teacher who dramatically quit after three lessons with my sons. Really, the last thing I want is for him to rein it in.

I want him to let all of his exuberance fly. On the dance floor. When he’s talking to strangers about dinosaurs and sharks. When he’s designing robots that his robot kit wasn’t intended to make—the Dogbot will be an AD-AT, whether it was meant to be or not.

As his mother, I have to find bigger dance floors. People willing to listen to his ideas. And more robust robot kits. Nine’s capaciousness is not the problem. Finding a world big enough for him, however, can be a serious challenge as his mom.

*

When I was Nine’s age, I was similarly socially oblivious. I was similarly overly boisterous. My obliviousness didn’t go away as I got older, finishing elementary school and entering middle school.

My mother, whom I’ve always thought of as a refined person, one aware of things around her, used to talk to me about my deficiency in “social skills”—her phrase. Her tone was usually exasperated, and sometimes, to my young ears, mean. To this day, even as I enter my forties, when I hear the phrase social skills I want to curl into a ball and protect my soft middle. But my mother didn’t have all of the information when I was nine, ten, eleven, fifteen and sixteen. What she didn’t fully realize was that although I appeared physically older than my age, and although I was academically advanced for my age, I was decidedly not socially on par for my age. Quite the opposite.

When I was eleven—starting sixth grade—I appeared fourteen, could read and talk like I was sixteen, and acted eight or nine. On the first day of middle school, after a long summer apart, I ran up to my best friend in the lunch line. I was so happy to see her, I couldn’t contain my joy. And why would I? “Do you want to come over and play after school?” I asked.

She looked at me, uncertain. The other girls around us laughed. I didn’t know why, not until later, when my friend explained to me in private. We don’t play anymore, she explained. We hang out. Or just come over.

I’d embarrassed her, I realized. I’d embarrassed myself. For the first time, I felt the knife of social wrongness.

My mom wanted me to learn social skills for my sake. She wanted to save me this pain. But she didn’t know how.

I’ve never forgotten how hard it was to fit in as a child, to do it so poorly and with so little help. I want to be able to help my kids. So I’ve worked hard to learn about the three ways that children mature—physically, academically, and socially—and how these types of maturity can be completely unrelated.

Like my own kids, I was always the last one to get the joke. I was always afraid at the scary movies. I always had the worst social skills. I don’t blame my mom for being frustrated—she didn’t know any better. But I refuse to be angry at my children because of their social immaturity.

I’m lucky that I had the experiences I did, so I can better help my own kids now. I know what it’s like to be the one who dances weird. I know what it’s like to feel the crushing weight of self-awareness when it finally hits. I won’t force that self-awareness on my kids. When it comes, it comes, and it will come soon enough. But it will not come from me.

I know what it’s like to be the one who dances weird. I know what it’s like to feel the crushing weight of self-awareness when it finally hits.

*

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.

Here, I think. You have space here, for now.

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