“Turn, Timmy, turn.”
Tim is still learning to ride a bicycle. He’s just like every other kid who ever learned to ride a bike—a mess of uncoordinated limbs flying down the street, headed straight for that curb.
“Turn, buddy!”
THUD.
Tim hits the curb. The bike falls, and Tim tumbles. He hops up, checks out his scrapes, and looks at us for approval. I give him a thumbs-up, and he gets back on the bike. Rinse, repeat. I’m slowly getting used to seeing him airborne at the end of each of these runs. But the thing is this, I thought by this time, I would no longer have to watch these aerobatics.
Last year, by the time the bikes went into deep storage for the winter, Tim had mastered turning his bike. So—silly me—I just assumed that when we picked up again this year, Tim would pick up right where he had left off. The bikes came out of storage, we headed to the park, Tim climbed on the bike, and promptly tipped over.
“Daddy, you’re so fat I couldn’t see how you beat me in Smash Brothers,” Isaac said to me the other day.
“Uh, what?” I asked him.
“You’re so fat Daddy, you beat me,” Isaac said earnestly.
“Do you mean ‘fast’, Isaac?” I asked.
“Yes,” he said and rolled his eyes at me.
“Fa-s-s-s-t,” I reminded him.
“Fa-s-s-s-t,” he repeated.
I thought for sure that we had had this “S” thing nailed by now. Isaac has been getting that middle “S” for a few months.
“I am fast,” I told him, “and I’m not too bad at Smash Brothers.” I don’t want Isaac to feel disappointed in this turn of events, so I redirect the conversation.
“What level do you want to play next?’ I asked him.
In therapeutic circles (whether PT, OT, DT, ST or some other T I’m forgetting), what happened to Tim and Isaac is known as a setback.
As a parent of children with special needs, I think that setbacks are often the most discouraging part of our children’s journeys. We can go for days and weeks and months watching them make progress and believing they have mastered a skill, and during these periods, we begin to convince ourselves that all of the challenges are behind us. But just like Icarus, I tend to fly too high, and allow myself too much complacency. When the setback occurs, I tumble.
It’s not that the boys have done anything wrong. In fact, it’s not even that the setback occurs. When setbacks occur the boys don’t let it change their outlook on life. But after having spent months working with the boys on difficult skills, and then believing that the skill is mastered and we can move on, it is difficult to watch setbacks take place. They often make me feel as if I have failed as a parent; that I could have or should have done more or done better. Sometimes I feel like I’ve been punched in the stomach, and I can’t breathe. And then I get angry. Angry with life for being hard. Angry with life for making my sons walk a harder road than most. Angry with myself for not being the perfect parent giving my kids a perfect life.
The problem I face with setbacks is that my expectations have stopped being grounded in the reality of my children, and have started straying into the realm of “What If?” (the fantasy world where life is easy, and my kids don’t face struggles). “What If?” is a dangerous place for me to reside, because it is a selfish place. “What If?” robs me of the truth, which is that my sons are wonderful, and quirky, and silly, and loving, and smart, and hard working. Without the challenges they face, they wouldn’t be anything like the young men that they are, and those young men I wouldn’t trade for the world.
Setbacks occur for any number of reasons. In the case of my boys, it is often because a skill has been out of practice for a while. And so I’m starting to teach myself that setbacks aren’t a reflection of the boys and their abilities, but instead, are signposts that can help us focus on where their needs are at any given moment. It isn’t easy, but I’m slowly learning that setbacks can be a tool to help me reconnect with my sons, and build a deeper relationship with them.
Just as my sons have challenges that they face on a daily basis, I am working on the challenge of getting out of my own way, and meeting my boys where they are, not where they could be. And just like my sons have setbacks in their progress, I have setbacks too, and stumble and fall. Thankfully, as a family, we are learning and growing together, and making a perfectly wonderful “What Is.”
“What Is” beats “What If?” any day.
As the proud father of three children, as well as an MFA graduate and published author, John spends most of his time trying to balance the demands of being a writer and a parent all at once. Most of the time, it’s an uphill battle. As the parent of a child with special needs, John tries to use his talent for writing to bring inspiration and hope to his readers.
For more information about John Will you can visit his website at the Writing Dad, Here and Facebook page Here.
Cover Photo: Gizem Vural