‘Dadda is disabled’
How I teach my son about my cerebral palsy
My 2-year-old son, Noah, glanced over to me at his dance class last week and said, “Daddy! Use both hands.”
It was circle time, and parents and toddlers were participating in a welcome song that involves waving from side to side while singing in unison.
I sent my left hand into the air but kept the right in my lap because I have cerebral palsy and my hand is usually clenched shut.
I wish I had talked to him about my CP right there.
I wanted to describe how I have muscle weakness on my right side and it’s the reason why I buckle him into his car seat with one hand, drive with adaptive equipment and take twice as long to change his diaper.
The moment passed.
This wasn’t the time.
The class started stretches and Noah flopped onto his belly.
Talking openly about my CP is as new as the little boy — but I am learning how to explain why I do things differently through our daily routine.
Noah is learning about my cerebral palsy by observing me, and I’m becoming more transparent since the little boy arrived. He pays attention to the differences in the way Lisa and I approach his routine, and over time, he has learned to be patient with me. Conquering my fears as a parent
Noah has the same schedule every day. By sundown, he’s pushing a sudsy toy boat with a wind-up propeller in the bathtub. I wash Noah’s hair with one hand and ask about his afternoon at nursery school.
Noah usually gives me a rundown of his day. “Noah kicks ball,” or, “Noah knocks down blocks,” he says as I make sure not to get soap in his eyes. He then pitches plastic farm animals into the air until my wife, Lisa, enters the bathroom to survey how much water has splashed on the floor. More importantly, she’s joining us to rinse Noah’s hair and lift him from the tub.
Out of fear, I hadn’t attempted to hoist Noah out of the water for almost the first two years of his life. I thought he was too slippery for me to grip with crooked right fingers. Lisa scoops our son and places him in the towel that I hold outstretched every night. Like many other child-caring tasks that require two hands, I finally decided to attempt it with Lisa by my side.
I knew Lisa was going out for dinner later that week, and instead of forgoing his wash for the night, I told Lisa that I’d like to try to pick up Noah — with her present on a practice run first, of course. Lisa asked Noah to stand and I hoisted him as I do most of the day, my left hand tightly around his waist and my right hand closed. Picking him up is often simple as long as I can put my entire disproportionately large left arm around him, but this time he was slippery. “Daddy pick up?” Noah asked.
“Yes,” Lisa said. “We both want to be able to do everything for you.”
“OK,” Noah said. “Momma read book then?”
Noah was more prepared for this change than I was, as I usually read him a book once he’s in pajamas. He was ready to embrace a new routine.
I was a little unsteady, but we made it to his room safely as Lisa spotted me. I have approached these tasks I thought impossible before parenthood one by one.
Zipping his coat, which I figured out by using my teeth to pull it up, and putting on his shoes have taken methodical trial and error to complete, but I now do each every day. I say “dadda needs help” when I try to pull a shirt over Noah’s head. He’ll use both of his tiny hands to grab the collar and tug through messy brown hair.
A day later, I lifted Noah from the bath by myself when Lisa was out. Noah knew exactly what to do when I was done washing his hair. Instead of raising his arms for me to pick him up while he was sitting in the tub, he stood when I asked. With both hands shut this time, I actually placed my forearms underneath his shoulders, lowering him to stand on the bath mat so I could grab his towel. Another new adaptation that worked for us. After Noah helped me put on his pj’s, I brushed his hair and he reached for his eyeglasses. We settled into our comfy rocking chair to read “Goodnight Moon” for the third time that week.
I turned to him and said, “Thank you for being so helpful. Dadda is disabled and needs extra help sometimes.” Noah looked at me and said, “Help Dadda.”
I’m opening up, and he’s learning
Noah is learning about my cerebral palsy by observing me, and I’m becoming more transparent since the little boy arrived.
He pays attention to the differences in the way Lisa and I approach his routine, and over time, he has learned to be patient with me.
But of course I disappoint myself despite feeling accomplished figuring out new adaptations. I’ll hide in the back of school events and his dance class, dreading shaking hands with other parents and then having to tell them something so personal about myself when I don’t offer a right hand. Noah is going to grow up seeing me shake with my left hand and fumble when I tell his friends’ parents that I’m disabled. It’s still uncomfortable being forthcoming about my cerebral palsy, although I know stating the truth is also for Noah.
Saying “I’m disabled” takes practice for me. A lot of practice. There are times when I don’t reveal it when I should and occasionally I want to gab about navigating the world with CP all night, but I’m starting by introducing my son to this enormous part of myself. I felt frozen the rest of that day at dance class thinking I missed an important teaching moment, but plenty more opportunities have already been presented to share with Noah that I’m disabled.
I’ve wrestled with what it means to be a disabled parent every day. My CP won’t be unspoken like when I was growing up. I want Noah to accept himself, so I need to do the same.
Noah has a slew of descriptors for me: “Daddy funny.” “Daddy silly.” “Daddy strong.”
Yes, and he’s learning daddy is also disabled.
Christopher Vaughan, a journalist, lives in Tarrytown, New York.