I fear that cerebral palsy will hinder me as a father. My son shows me otherwise.
My 2-year-old son, Noah, glanced at me in his dance class last week and said, “Daddy! Use both hands.” It was circle time and parents and young children were participating in a welcome song that involved waving from side to side while singing in unison. I sent my left hand into the air but kept my right in my lap because I have cerebral palsy My hands are usually closed.
I wish I had talked to him about my CP there. I wanted to describe how I have muscle weakness on my right side, which is why I have to buckle him into a car seat with one hand, drive with adaptive equipment, and take twice as long to change his diaper.
The moment passed. This was not the right time. The chapter began to stretch and Noah flopped onto his stomach. Talking openly about my cerebral palsy is as new as a toddler—but I’m learning how to explain why I do things differently through our daily routine.
Overcoming my fears as a parent
Noah has the same schedule every day. By sunset, he was pushing a foam toy boat with an opening propeller into the bathtub. I wash Noah’s hair with one hand and ask him about his afternoon at nursery. Noah usually gives me a rundown of his day. “Noah kicks the ball” or “Noah drops the blocks,” he says as I make sure the soap doesn’t get in his eyes. He then threw the plastic farm animals into the air until my wife, Lisa, went into the bathroom to check the amount of water on the floor. Most importantly, she will join us in rinsing Noah’s hair and lifting him from the sink.
Out of fear, I didn’t try to lift Noah out of the water for almost the first two years of his life. I thought it was too slippery to grip with my curled right fingers. Lisa scoops our son and places him in the towel I hold outstretched every night. Like many other babysitting tasks that require two hands, I finally decided to try it with Lisa by my side.
I knew Lisa was going out to dinner later that week, and rather than forego showering for the night, I told Lisa I wanted to try to pick Noah up — with her attending training first, of course. Lisa asked Noah to stand and I lifted him up as I do most of the day, my left hand tightly around his waist and my right hand closed. Carrying it is usually simple as long as I can get my disproportionately large left arm around it, but it was slippery this time.
“Daddy’s picking up?” Noah asked.
“Yes,” Lisa said. “We both want to be able to do everything for you.”
“Okay,” Noah said. “Did you read a book then?”
Noah was more prepared for this change than I was because I usually read him a book when he’s in his pajamas. He was ready to adopt a new routine.
I was a little uneasy, but we made it to his room safely when Lisa spotted me. I’ve approached these tasks that I thought were impossible before fatherhood one by one. Closing his coat, which I figured out by using my teeth to pull it up and put on his shoes, took methodical trial and error to complete, but now I do every day. I say “Daddy needs help” as I try to put a shirt over Noah’s head. He’ll use both of his little hands to grab the collar and pull out the messy brown hair.
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A day later, I got Noah out of the bathroom myself while Lisa was out. Noah knew exactly what to do when I finished washing his hair. Instead of raising his arms for me to hold while he sat in the tub, he stood up when I asked him. With my hands closed this time, I put my forearms under 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 into my pajamas, I combed his hair and reached for his glasses. We sat down in 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. Dada is disabled and needs extra help sometimes. Noah looked at me and said, ‘Help Dada.’”
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Noah learns about my cerebral palsy by observing me and I have become more transparent since the little boy’s arrival. 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’m disappointed even though I feel accomplished in discovering new mods. I would hide in the back of school events and his dance classes, afraid to shake hands with other parents and then have to tell them something very personal about myself when I wasn’t helping them. Noah would grow up seeing me shake hands with my left hand and stutter when my father told his friends I was disabled. It’s still uncomfortable for me to talk about my cerebral palsy even though I know that telling the truth also applies to Noah.
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Saying “I am disabled” takes practice for me. Lots of practice. There are times when I don’t reveal it when I should, and sometimes I want to talk about navigating the world with cerebral palsy all night long, but I start by introducing my son to this huge part of myself. I felt frozen the rest of that day in dance class thinking I had missed an important teaching moment but had already been presented with plenty of opportunities to share with Noah that I was disabled.
I wrestled with what it means to be a disabled parent every day. My CP won’t be as unadvertised as it was when I was growing up. I want Noah to accept himself, so I have to do the same.
Noah has a plethora of descriptions for me: “Funny dad.” “Fucking daddy.” “My father is strong.”
Yes, and he’s learning that Dad’s screwed up too.
Christopher Vaughan, journalist, lives in Tarrytown, New York. this Column first published in Rockland/Westchester Journal News.
This article originally appeared on NorthJersey.com: “Daddy is disabled”: How do I teach my son about my cerebral palsy?