Like many kids with cerebral palsy, Crystal Chin’s childhood revolved around a single goal: learning to walk.
The 23-year-old can list off the interventions she’s received with dizzying speed: orthotics, bracing, physio, Botox therapy, heel-lengthening surgeries, occupational therapy.
“Everything was about ‘If we can just get you to walk. If we can just get you to walk, people will think you’re normal,’” says Crystal, a member of Holland Bloorview’s youth and family advisory committees.
From an early age, Crystal learned that walking in our culture meant more than mobility, it conveyed a certain social status.
In fact, in a recent Holland Bloorview study, standing and walking were identified as signs of worth, dignity and autonomy by children with cerebral palsy and their parents.
Both parents and children recognized this social importance of walking, says lead scientist Barbara Gibson, and this affected parents’ rehab choices and perceptions of success.
Six children with cerebral palsy and six of their parents were interviewed in the pilot study.
All parents described independent walking as the long-term aim for their child, and reported doing everything they could to advance that goal. They often experienced anxiety and guilt when choosing to forgo or stop interventions. Many reported feeling they hadn’t done enough if their kids’ therapies weren’t successful.
Barbara says these attitudes can lead to an over-emphasis on walking in therapy. While she agrees it’s important for children with cerebral palsy to work at strengthening their muscles and keeping fit, she cautions that focusing too much on walking detracts from kids’ development in other areas.
“[Therapy] consumes a tremendous amount of energy, resources, time,” she says. “It leaves less time to just be a kid.”
Crystal agrees. She says she dedicated so much time to therapy that she was oblivious to activities popular among other kids. For example, as a young child, Crystal says she wasn’t aware that kids had birthday parties. At home, board games like Connect Four were used as forms of physical therapy, not fun.
While overall she’s thankful to have had access to therapy, Crystal wishes she’d spent less time fixated on learning to walk. For her, focusing on what she couldn’t do led to a feeling of inadequacy.
“It made me feel like I wasn’t good enough because...there were people trying to help me and I couldn’t even help myself,” she says.
Crystal and Barbara point to the need for candid, ongoing communication between families and professionals to alleviate feelings of inadequacy in children and guilt in parents and help families understand what goals are achievable.
“It would be great if clinicians felt comfortable saying ‘This is what the child is
going to be left with, and you’ve done a great job of getting to this point, but it’s okay to stop,’” Barbara says. “I think parents need to hear that.”
Barbara says that many parents, particularly those who’ve just received a diagnosis, may have trouble processing the information given to them by doctors. At the same time, some physicians and therapists may avoid providing a prognosis about walking because they fear dashing parents’ hopes.
To parents struggling with how much emphasis to place on therapy, Barbara recommends focusing less on walking and more on mobility. That’s because certain ways of moving are more useful to childrenin particular situations.
For example, some children find wheelchairs work best at recess or play times because they allow kids to keep up with their friends. Others may like crawling in private spaces because they’re able to navigate physical obstacles more easily.
Barbara says that parents of older children reported that they became less preoccupied with their child walking over time, as they became more comfortable with their child’s disability.
For Crystal, mobility with her wheelchair has taken precedence over walking. She says she only walks about 30 per cent of the time now and likes her wheelchair because it allows her to be independent.
When asked if all of her therapy was worth it, Crystal says it taught her to transfer independently from her chair, which is an important skill.
“Yes, there were some gains,” she says, “but I think there needs to be more of a balance. And I can understand how hard that can be for a family that wants something so desperately for their child.”