Kai’s longtime occupational therapist, Emily, made a suggestion last spring that it might be time to think about winding down. She said she was running out of goals for him.
Emily has been seeing Kai since he was two. She came to our house when Kai qualified for Early Intervention. Ryan was weeks old. Kai is now old enough to say sarcastic things like, “Duh,” in response to a question. Ryan is tall enough to ride roller coasters. We’ve been doing this a long time.
I got kind of panicky when Emily suggested we might take a break. For one thing, he still needs…something. He needs heavy input. He likes to crash into the big pillows and roll himself through the squeeze machine. He gets a little bonkers if we skip a couple of weeks. And yet, we are running out of goals. We’ve been through coordination goals, catching and throwing, fine motor, shoe-tying, determining left from right on yourself and somebody else. Emily said she was reaching this summer—they’re working on keyboarding.
Emily lives in my neighborhood, so she knows what a slog it is to get out to the therapy center. It’s a four-hour endeavor, and most of that is spent in the car. I whale through audiobooks—last summer I bought them according to length (I spent 95 hours on an exhaustive biography of Elvis Presley). There are a lot of days that I struggle to stay awake on the drive and have roll down the windows and sing or call Scott and make him talk to me until he has to run to a meeting.
“Think of all the free time you’d have,” Emily said.
And it’s true. Four hours is a long time.
Especially since we go to the center not once a week, but twice—on Thursdays, we go for group therapy. The group that Kai attends on Thursdays has a parent component to it, where we are supposed to talk about our kids’ struggles with ADHD. Last Thursday, however, I hijacked group time to talk about no longer doing OT.
“Who am I if I’m not doing this every week,” I asked. “And he still needs…He still needs help.”
The director of the group suggested that it might be time to find Kai ways that he can get heavy sensory input by himself through sports, which we would have time for if we weren’t always hauling ourselves to therapy.
All of that was true. Kai does need to begin to take ownership of his needs, and we would have time for things like Ninja training, which is what Kai calls martial arts. Or swimming lessons. Or whatever. The director said that her son found that he could get a lot of his sensory needs met by skateboarding and had me almost convinced that turning Kai loose in the world on a piece of wood with wheels was a good idea.
I still felt a little lost, though. Is it really time to be done? Kai’s not…I mean, he can’t…But…
My attachment to the center and this course of therapy—is it habit? Muscle memory? What if everything falls apart when we take these things away?
“We’ll still be here,” the director said, “if you need us.”
I nodded. I guessed that we could try some form of tapering down. Besides, we would still be coming to the center for speech.
After group was over, Kai’s speech therapist said she wanted to talk to me.
She thought Kai was ready to take a break from speech, too.
A few days later, I was on the phone with some folks from Rush Hospital’s autism treatment center. They were looking for some kids Kai’s age to participate in a social skills study which would, in essence, be free therapy. Plus it’s only a few blocks from my house.
A research assistant was asking me questions about Kai, like when was he diagnosed and is he on any medications.
“And what is his highest form of communication?” he asked. “Would you say he’s nonverbal, nonverbal but uses assistive technology, has some words and phrases, or speaks in full sentences?”
There but for the grace of God, I thought. “He speaks in full sentences,” I replied.
“Can you give me an example of a full sentence?”
I drew a total blank at this. Kai talks. He asks for what he wants and will give you a full description of any dinosaur. You can ask him if he knows what the opposite of nocturnal is because you have no idea, and he will tell you that it’s diurnal, and then you’ll ask him how he knows that, but he can never find his shoes, and he’ll laugh and say, “Good one, Mommy.”
I didn’t know what to say, so I said, “When he has to go to the bathroom, he’ll say that he needs to see a man about a horse.”
The research assistant was quiet on the other end. “Is that your answer?” he said, finally.
I said that I supposed it was.
After I hung up (Kai qualified for the study—the effect of oxytocin on social skills) I was thinking about Barb, Kai’s speech therapist at the center, saying to me that Kai has so much language that he was ready to be done for a while.
“How do you feel about that?” she’d asked me.
The truth of it is that I always fear that people will take Kai’s services away, that he’ll rock school so much that they’ll take away his support. But then, that’s what we want, isn’t it? And Barb isn't school, for whom Kai is a budget line item. Barb knows Kai, she likes him. Her eyes got a little watery talking about saying goodbye.
“It’s a good thing,” Barb had said.
And it is. It really is.
But, he still needs help. He hasn’t made a single friend at camp. One of the kids stole his hat, and in the process scratched his forehead, leaving a one-inch gouge in his skin, and Kai couldn’t tell who had done it.
He still needs…
He still has autism.
Friday was “bring your bike” day at summer camp. I, of course, completely forgot and had to go back home and get the kids’ bikes. This was no small feat considering it was 250 degrees out, their bikes are heavy and awkward. They both still had training wheels.
I sort of hated to bring Kai’s little-kid bike to his big-kid camp. I wondered if he would get made fun of for his training wheels. Later that day I called this special needs recreation place in Aurora that gets special needs kids riding, and left a message. I thought about bargaining with Emily, that I would consider taking Kai out of OT after she got him riding a bike, and not a moment before.
When I picked the kids up that afternoon, I asked if they’d had fun. They said they had.
“My bike is so heavy,” Kai said. “It’s hard to go uphill.”
“You know what would make it feel much lighter?” I asked.
“If we took off the training wheels.”
Kai seemed to consider this.
“Tomorrow,” I said. “We’re going to do it tomorrow.”
So we did.
And this happened:
Suddenly, Kai could ride a bike, and as I watched him pedal away from me, I found to my surprise that rather than having any sense of sunrise-sunset nostalgia for a little boy who just discovered freedom, I was deeply, profoundly relieved. I could begin to imagine that we could, maybe, begin to let go of our old routine, our old notions of what we need.
In group last week, I took a moment to wallow in self-pity.
“The thing about autism is that there’s nobody steering this ship but me. How will I know what our next steps are?”
The director, who has her own, grown, special needs son, was kind enough not to judge me for my brief lapse into whiny petulance. “That’s the case with any disability,” she said. She said we’d figure it out. That Kai would figure it out.
So I don’t know what we’ll do in the fall. I think Kai still needs social skills groups, and I’m trying to find one. He needs massive help managing his ADHD. There’s that oxytocin study. I told Scott to get Kai a skateboard. And as Saturday became Sunday and we found ourselves back at the park, Kai whizzing past us on his bike, the brim of his hat peaking from under his helmet, I realized that I was beginning to feel a glimmer of freedom, too.
“When I ride my bike really fast, it feels like I’m flying,” Kai said later.
I pulled him close and kissed him on his cheek and he giggled, too elated to remember to be embarrassed by my kiss.
“Are you going to tell the kids at camp that you don’t need your training wheels anymore?” I asked.
“Naw,” he said. “I’ll show them next year.”
And I imagine that he will.