My 3-year-old son, River, sat in my TiLite wheelchair, pushing around our house. He’s becoming a good driver, crashing into walls and furniture less and less. As I cozied into our couch, River asked me, from across the room, to help him reach his monster truck that fell off his lap onto the floor. I told him if he wanted help, he’d have to bring me my chair. “Momma, just walk,” he replied. When I told him I couldn’t, he encouragingly replied, “Try harder!” I chuckled and explained that I already tried hard, but my legs don’t move. He got quiet, wheeled toward me, and asked, “Why?” I hesitated.
Even though I had answered this question a hundred times, to strangers at Starbucks and to kids at the supermarket, explaining my disability to my child felt different. My instinct told me to be straightforward, so I told him that I had been in a car accident and hurt my back. Because my legs don’t work, I use a wheelchair. He had a lot of follow-up questions, so I threw in some details, like I had been taken to the hospital in a helicopter ambulance, which he thought was cool. Content, he climbed down from my chair, pushed it to me and said, “Momma, let’s play Legos.”
I thought about our interaction for days. River has only ever known me to use a wheelchair, it’s his norm. When he comes in our room in the morning to wake me up, he doesn’t say, “Momma, get up.” He says, “Momma, get in your chair.” But now that he’s getting older, he’s starting to understand what being in a wheelchair means.
As parents, how we frame these conversations can have a lasting impact on how our children perceive disability and how they interact with other people with disabilities. In talking to fellow parents in chairs, I learned they had similar advice when it came to discussing disability with their children.
Honesty is the Best Policy
At the top of the list is the simplest advice: Be honest. Don’t try to hide or sugarcoat your disability, keep it simple, and explain what they can understand. Yasaman Best, a C7 quad who lives in Vancouver, British Columbia, has a 3-year-old son named Alex. Like River, Alex recently told his mom that he wanted her to stand up and walk. “The comment seemed to come out of nowhere while he was standing on my footplate washing his hands in the bathroom sink,” says Best. “I looked in his eyes and said, ‘Love, that’s not possible. Mommy can’t walk or stand. Mommy also needs help with a lot of things because Mommy’s hands don’t work well. But Mommy loves you very, very much, and you and I make a great team. We are gonna have so much fun together.’” Alex smiled and hugged her as she kissed his forehead, and they continued to wash their hands and laugh.
Keith Polischuk, who lives in Marietta, Georgia, has three boys that are 5, 3, and 5 months old. His oldest son is really into science and robots, so Polischuk, a C6 quad, explained his spinal cord injury in a way he could relate to — by comparing it to the wires in a light bulb. “I told my son that if those wires were cut or damaged, the electricity wouldn’t be able to get through to turn the bulb on,” he says. “And how, in a similar way, the brain sends messages through the spinal cord to tell different parts of the body what to do, and if the spinal cord gets cut or damaged, the signals can’t get from the brain to the rest of the body.” Polischuk also found the Dr. Seuss book Inside Your Outside helpful. “It’s a fun book about the human body and how it works,” he says. “And there’s a page about the spinal cord.”
Recently, Polischuk and his family were at a cousin’s birthday party when a little girl asked him why he used a wheelchair. “My son jumped right in. He told her about my spinal cord and how messages don’t get through anymore,” he says. “It was really funny.”
Polischuk has also explained to his sons that he may do things differently because of his injury. For example, Polischuk uses his teeth to help him open things and pull apart Legos. “I noticed my son was also starting to pull apart Legos with his teeth,” he says. “I explained to him that he should use his hands, and why I did it the other way.”
Priscilla Hedlin, a L1-2 para and the voice behind “The Wheelchair Mommy” blog also has three boys. Hers are 13, 10 and 7. “They’ve always known I was in a motor vehicle accident that left me unable to walk,” she shares. “But it’s never been a big deal and not something they just asked me about one day out of the blue.” Hedlin thinks it’s important to be open to your children about the realities of your disability. “My feet swell, so I sit on the couch and put my feet up,” she says. “I explain to my boys what I’m doing and why. They see the swelling and see how putting them up helps. They always see my transfers and even help put my chair into the van.”
Share the Positive
Recently, River asked me to stand up and do jumping jacks with him. When I reminded him that I couldn’t stand, he looked disappointed and started pulling at my legs to help. I explained to him that even though I don’t stand, I can still do jumping jacks. I just do them differently. Then, I began to bounce my upper body while I swayed my arms together and apart. River smiled, started to giggle and joined in.
Polischuk, who in addition to his three boys, has 19 nieces and nephews, also thinks it’s important to share the positive when talking about your disability. “With all of the kids in my family, I get asked questions about why I use a chair a lot,” he says. “I explain that even though I can’t walk, my wheelchair helps me get around, and there are so many other things I can do.”
Kristina Rhoades, a T5 para and life coach who lives in New Mexico, said that her 6-year-old daughter, Kamryn, gets asked questions like, “What happened to your mom?” from other kids. “Often she’ll answer the questions,” says Rhoades. “But sometimes, when they ask about my wheelchair, she does something else that is pretty clever. She’ll say to me, ‘Hey, Mama, pop a wheelie!’ or ‘Show them the lights on your wheels!’ In an instant, kids go from being nervous about my differences to thinking I’m pretty dang cool, and they’re back to playing.”
Coping With Obstacles
The toughest thing I have had to explain to River about my disability is why I can’t do something with him. Recently, we were visiting family who live near the beach, but to access it you have to go down a steep hill. River really wanted me to come, but I had to stay up at the top. As I watched him playing on the beach below, I felt sad and left out. But then I saw how much fun he was having, and that made me smile. Polischuk has experienced something similar. He has a swing set in the backyard, but the terrain around it is rough and he can’t get to it. “My son will ask me to push him on the swing,” he says. “It’s really hard, because I wish I could.”
“The great thing about kids is that they are so adaptable and amazing,” said Best. “Alex and I were playing hockey in the living room, and I wasn’t fast since I couldn’t grab the stick and it kept falling from my hand. I nodded to my husband to come and play with him, because I felt bad. Alex grabbed the stick and gave it back to me and said, ‘Wait your turn, Daddy!’ I love that he is so close to me and accepts my limitations and tries his best to make it work.”
I recently came across the children’s book Mama Zooms by Jane Cowen-Fletcher. Written in 1995, the book tells a story of a mom who uses a wheelchair and her son. Because of her “zooming machine,” they go on lots of adventures together. Sitting on his mom’s lap, they become a racecar, a train, a ship at sea and finally, on the last page, “Mama zooms me right up until bedtime. Then Mama is just my Mama, and that’s how I like her best.” I get teary-eyed every time I read it because it beautifully captures the special bond that I feel parents with disabilities have with their children. A bond that will influence them for the rest of their lives.
“One of the most meaningful parts about being a parent with a disability is Kamryn getting to be a part of the incredible disability community I’m so lucky to be connected with,” says Rhoades. “She’s able to see I’m not different from everyone else, but that diversity is normal and wonderful. She learns so much about the human spirit by watching people like us do things every day that most of the world thinks is impossible. She doesn’t look at us like we’re broken or vulnerable. It inspires me so much to know that she will go out into this world with that outlook and understanding for others.”
One night, as I tucked River into bed, he told me his favorite part of the day was when his friend, Tara, came over to play. He talked about how they ran in our front yard and made sandcastles out of dirt. And then, he very factually declared, “TARA’S MOMMY DOES NOT USE A WHEELCHAIR.” Amused by his observation I replied, “Yeah, not all mommies use wheelchairs.”