At the center where Kai gets occupational therapy, there are kids who are there for all manner of special needs—speech, behavior, physical therapies, even help eating. The parking lot has three times the usual number of handicapped spaces. They are always full. And not with the compact sedans you see when you go to the mall of the grocery store, either, but big conversion vans that have motorized ramps. Parents push high-tech-looking wheelchairs containing children with twisted limbs through the lobby and into therapy rooms.
I would like to say that I am good at acknowledging these children and their parents, that I smile and say, “hi,” like it were any other mother and any other kid, but that’s probably not true. I discovered recently that I actually needed a lesson in how to interact with someone with a profound disability. And that lesson was delivered brilliantly by my son.
:::
Kai bounds into the center like a rabid wolverine, running in front of strollers and past grown-ups, shedding coats and boots and snowpants in wet, slushy piles. He trips over other kids as he lunges for the bowl with the stickers. I run behind him. “Kai,” I say, more to have said it than because it does any good, “pay attention to where you’re going.”
Last week, he ran pell mell into a young man in a motorized wheel chair. He had a service dog with him, and before I could even get the word “Stop!” out of my mouth, Kai had both hands on this dog, tickling and scratching. The dog licked Kai’s face.
“Kai, you need to ask before you pet someone’s dog,” I said. I didn’t know this guy, had no idea if Kai was making him uncomfortable, if we were breaking taboo.
“What’s your dog’s name?” Kai asked.
I realized that the guy had a computer screen in front of him, and he was somehow typing on a keypad. I say “somehow,” because I actually don’t know how he was doing it. Certainly not with his fingers.
“What’s your dog’s name?” Kai repeated, louder.
“Kai, wait,” I said. “He’s typing.”
When the man was done, the computer speaker spat the name “Caleb.”
“His dog’s name is Caleb,” I said to Kai.
I was freaking out a little, to be honest. I didn’t want to disturb this guy, I didn’t want Kai to make him feel weird or call attention to his handicap or otherwise do something awkward. I realize that this isn’t Kai’s problem, it’s mine. It’s the way we (I) look past someone with a handicap thinking that we’re being polite, not staring or even acknowledging what makes someone different. Kai, however, has no such compunction.
“What kind of dog is he?” Kai asked.
The man started typing again, but apparently he was too slow for Kai.
“I SAID,” he shouted, aiming his voice in the man’s ear, “WHAT KIND OF DOG IS HE?”
I died a little inside.
“Kai,” I said, placing a hand on his arm, ready to yank him down the hallway if I had to, “this man’s typing on his computer.”
“Not sure,” were the words from the computer.
Just then, to my immense relief, Emily showed up.
“Is Sam showing you his dog?” she asked Kai. She was, of course, perfectly at ease around Sam. She sees kids like him all the time. “Caleb helps Sam turn on lights and all kinds of stuff.”
“My dog is Elliott,” Kai said to Sam, and before Sam could reply, Kai flipped the joystick on Sam’s chair and it started to roll away.
:::
Later that same visit, another kid in a chair, a kid named Brian, showed up in the sibling playroom. Brian is also non-verbal, but he has no computer. At least none that I could see. He gestured to get my attention, and then gestured to the TV.
Assuming he wanted to watch a video, I jumped up and busied myself trying to find a tape to put in the VCR, rejecting Veggie Tales as being too religious and the Lion King as too traumatic, finally settling on “Animals of the Arctic.” I shoved the tape into the player, but it wouldn’t go in all the way. I pulled the tape out, and peered inside the VCR, as though anything I saw in there might somehow make sense to me. I tried to shove the tape in again, but it wouldn’t budge.
“I’m sorry,” I said, “I think the TV’s broken.”
Brian turned to me and gestured once again to the TV.
“I’m sorry, it’s not working,” I said, a note of panic in my voice.
Brian wheeled his chair around to face me, his expression expectant, and I realized that it was this that I feared—not being able to communicate or help, of not knowing what to do. Yes, I have a special needs child, but really, in the grand scheme, his needs aren’t that special. Eventually, Kai and I can have a mind meld and land on whatever it is that he needs from me. But Brian. I had no idea what to do. I couldn’t make the TV work. Brian faced me with an expression I couldn’t even read, unless it was amusement, because that’s what I saw in his eyes.
A man appeared in the doorway.
“Brian,” he said. “What are you doing in here? Let’s go!”
Brian wheeled his chair around and followed his dad out of the room.
But before he turned the corner out of sight, he turned and gestured to me. It was a wave goodbye.
:::
It is probably little wonder that most of us have no real experience being around people who are profoundly disabled. Or maybe you do, and it’s just me. But when I was a kid, children with special needs were all shoved into one classroom called “special ed.” They walked or wheeled together to the lunchroom or to gym, and as I look back, I wonder if that’s where Kai would have been 25 years ago, lumped in with this band of children who looked different and walked different and learned differently than I do.
Today, the Least Restrictive Environment (LRE) mandate lets families put their kids in general ed classrooms if they can find a way, through supports, to do so. Kai is in a classroom with 26 neurotypical children. I worried about this, of course. These kids are so much more socially sophisticated than Kai, but it has somehow worked out. Kai comes home every day with a new one of those rubber band bracelets that someone has given him. He gets invitations to birthday parties and personalized valentines. He has kids that sit with him at lunch.
And maybe Kai is teaching them something, too.
:::
We saw Sam again yesterday. Kai went running up to him
“Look at my tooth,” he said, shoving a baggie into Sam’s face. Kai had lost a tooth right before we left for the center.
“Cool,” Sam typed.
Kai chatted at Sam, taking care this time not to move the chair. He asked Sam questions about his key screen. Sam never really had a chance to answer.
“Sam,” I said. “Kai just loves you.”
Kai threw his arms around Sam’s neck. “I love you, Sam,” Kai said.
“Kai!” I shouted, once again not wanting to do anything to hurt or upset Sam, not wanting to break a taboo.
But Sam leaned into the hug, the muscles in his face relaxing into a smile.
“Thank you, Sam,” I said, as Kai skipped down the hall for his appointment.
Later, while Ryan and I were in the playroom, Ryan announced she had to go potty and bolted out the door.
I shoved my phone into my purse and slung it over my shoulder, and by the time I rounded the corner after her, she was gone.
There were two directions she could have gone, two bathrooms down two different hallways. Sam sat in his chair in the lobby. He would have seen which way she went. I felt my eyes land on him and then, out of habit, out of some crazy notion that passes for politeness, quickly away. And then I took a breath and looked not past him but at him. He must be in his early 20s. I thought he might have cerebral palsy, but of course, I have no idea. He is nonverbal, his limbs too unreliable to type. He types some other way, probably by moving his head. He is handsome in an early 90s way, with longish hair brushed back from his face and a scraggly, hipster beard and a flannel shirt. Take away the chair and the computer and hand him a guitar, and he would look like a musician from Seattle.
Sam had looked away the same time I did, as though a lot of people see him and then see past him.
Or maybe that’s just my own interpretation, my own realization that sometimes I see, but I don’t really see.
When he realized that my eyes had come to rest on him for real, he jerked his head toward the right, pointing down the hallway.
“Thanks, Sam,” I said as I jogged past.
For that was indeed where I found Ryan.
And I found myself, as I often do, in awe of my son—my sweet, quirky, strange son who, for all that he as autism and is so socially challenged, is the first one to throw his arms around someone that I don’t know how to interact with.
I’m going to work on that. And I’m going to bring Caleb some milkbones. And the next time I see Sam, I’m going to say “hello,” and give him time to type his reply.
Hopefully, though, he won’t ask me to figure out how to work the TV.
Comments