If there is anything predictable about children, it’s that they are unpredictable. One thing they have in common, though, is unbridled curiosity. Recently published booklets from the Christopher & Dana Reeve Foundation, authored by experts from Kennedy Krieger Institute, help answer questions children might have when they encounter people with spinal cord injuries.
Authors Emily Montag and Janet Dean of Kennedy Krieger Institute spoke with Baltimore Fishbowl about the kinds of questions children might be prompted to ask whether they have a sibling, parent, friend, or teacher with a spinal cord injury. Montag is a child life specialist with the Child Life and Therapeutic Recreation Department who works on in-patient care. Dean is a pediatric nurse practitioner in the International Center for Spinal Cord Injury dealing with in- and out-patient therapies.
The Christopher & Dana Reeve Foundation asked for and funded the booklets and provides them to anyone who requests them free of charge, as are the online versions. Montag and Dean researched and created the content for the booklets.
“See What We Can Do, See Where We Can Go!” is written for preschool-aged audiences, and “Some Walk, I Roll. Let’s Learn Why.” is written for school-aged audiences. Even though the booklets are written for children, they spotlight people of all ages with spinal cord injuries. Dean relayed that only about 20% of spinal cord injuries occur in children.
“I’ve been sort of giving it to adolescents and saying, ‘Do you have any younger cousins?’ so that they can look at it too,” Dean said. “We have lots of pictures of people with spinal cord injury that are doing lots of different things in their lives. We wanted to show a whole spectrum of people with spinal cord injury so that young kids could see that you can grow up to be a doctor. You can grow up to go sailing on sailboats, things like that.”
Montag sees patients of all ages, but as a pediatric nurse Dean can see patients up until the last day of their 21st year.
A common concern Montag hears from caregivers and children with spinal cord injuries is that other children may not understand them.
“They’re not sure how to explain certain things about their body, or maybe they use a piece of adaptive equipment,” Montag said. “Maybe a classmate assumes they can’t participate in gym class and they can. It just looks a little bit differently.”
She sees these concerns surface as a patient gets closer to going home and realizes they will be leaving what Montag calls a “rehab bubble” where there are others around them who have injuries and caregivers who understand them.
“But then once you are back home or back getting back into your routine, families are really worried about explaining things,” Montag said. “I feel like kids a lot of times do an even better job than their caregivers, but a lot of times I’m working with patients … sometimes we’re role-playing or practicing if your friend asks you about something, you can answer it or you can tell them that you don’t want to share it.”
In addition to teaching children about the spine, spinal cord injuries, and how someone might move through life with their adaptations, the booklets help their audiences learn how to handle interacting with those with spinal cord injuries with respect and sensitivity. Throughout the pages, there are special text boxes that explain things like which questions are appropriate to ask, and which are not. They help children understand that personal space includes someone’s adaptive equipment, and never to touch it without permission from the person using it.
The children Montag and Dean work with helped with this, telling them things they really wanted other people to know; questions people would ask them they wish they wouldn’t. In this way, many adults would benefit from reading these booklets as well, so they can help their children, or the kids around them behave appropriately towards people with spinal cord injuries.
Most of all, Montag views the booklets as conversation starters.
“They’re both broad books,” she said. “Spinal cord injury can look different for many different people. But I think it’s a nice starting off point. So, if there’s a caregiver that wants to have these conversations with their child or the sibling or family members, it’s a nice way to start the conversation.”
“[Kids] may not realize that their friend is going to go to college and can do all these things,” Dean said. “Hopefully that will help to break down barriers and say, ‘Oh, my gosh, look, did you know that you can go skiing and things like that?’”
To request a free copy of the books, visit the National Paralysis Resource Center website at www.ChristopherReeve.org/Ask or contact an Information Specialist, available Monday – Friday, 7 am to 12 am EST, by calling 1-800-539-7309.
