By Diane Kay
About a year ago, I contacted Canadian researcher and developmental pediatrician Dr. Peter Rosenbaum. I wanted to ask his advice on the pros and cons of walking in children with cerebral palsy.
My son Alfie, 7 (above centre), has significant challenges because of cerebral palsy. He wants to walk, despite using what many call an abnormal pattern of movement. Alfie LOVES walking with our support or a walker. It isn't functional, we’re told, but his slow and excited steps give him a hard-to-beat feeling of independence that he may not experience when he's older.
Our government-funded physios say walking is bad for Alfie's hips because his tight muscles pull him into an unusual gait. They say Alfie should spend most of his time in a seating system or wheelchair or use a standing frame (which Alfie hates). On the other hand, private physios say Alfie should have a walker because he can take steps and enjoys it.
In trying to decide whether we should encourage Alfie to walk, Peter suggested I read a paper he and a colleague had written called The F-words in childhood disability: I swear this is how we should think!
The F-words are function, fun, friends, family, fitness and future. The words are based on the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), which is a way of thinking about health that applies to everyone, not just those with disabilities.
The ICF framework is a diagram that shows how body structure and function, activity, participation, environmental factors and personal factors are interrelated and influence a person's health. No one factor is more important than another.
Peter and Dr. Jan Willem Gorter took these concepts and translated them into the simpler, family-friendly F-words, which they argue are also connected. These words convey what’s important to children with disabilities and their families in a way that I could relate to.
For example, if a family is having emotional or financial problems, this can impact on a child’s ability to function and have fun.
If a child isn’t able to get a key piece of technology, it has ripple effects on what a child can do.
And sometimes fun is just as important a reason for doing things as function. It was this description in Peter's paper about the word function that gave us confidence to support Alfie’s walking, even if it isn't the most efficient way for him to get around:
“We used to believe that from a very young age children's everyday activities… had to be done ‘normally,’” write the authors. “We have likely inhibited children's development by stopping them doing things considered to be outside the normal—literally ‘abnormally.’ One need only think of preventing children with cerebral palsy from pulling to stand and walking in a crouched gait or expecting children to communicate only with spoken language… Performance improves with practice, and hence our primary emphasis in counselling and intervention should be on promoting activity.”
And in writing about the importance of fun, the paper says: “…do not worry about expecting children to do things ‘normally.’”
It notes that youth with disabilities participate less in sports, hobbies or even hanging out at the mall than their peers. The simple answer is to ask children what they want to do… “It is the doing, rather than the superior level of accomplishment, that is most meaningful to most children,” they write.
We had always erred on the side of “if Alfie enjoys it, then why not?”
But reading these words in black and white in a research paper made us realize that it might be better for Alfie all round if he does do things—in whatever way he can.
I wonder whether professionals consider the effect that function has on having fun and participating and making friends? Or the way having fun can help build abilities?
The F-words, and how they’re interconnected, make sense to me, but I haven't seen the ideas applied by professionals with Alfie as much as I would have liked.
In thinking about my role negotiating with service providers, I decided to create an “F-words agreement” that we would share with professionals. This laminated print-out would be Alfie's document: he owned it, and he would show it at clinic visits as a starting point for discussion. To me it represents an informal but serious pact between the child and whoever they rely on for support. I see the F-words as a minimum standard, especially when decisions about services and interventions are made.
For example, under Function in Alfie's agreement it says: “I want to do stuff. It may not matter if I don't do it like everyone else.”
Under Family it says: “They know me best and I trust them to do what’s best for me. Listen to them. Talk to them. Hear them. Respect them.”
And under Future: “Tomorrow is what I make of today. I don’t want opportunities to pass me by. Help me achieve what I can today.”
We used the agreement for the first time when Alfie needed surgery to reduce his spasticity.
During a pre-op physio assessment, we shared why we thought it was important for Alfie to regain his pre-surgery skills.
“But Alfie won't be able to keep up with the other children on the playground if he's walking,” one of the therapists said.
I said we thought it was also up to other children to adapt their games to include Alfie.
We showed them the agreement, but to our surprise, the therapists didn't respond. There was a loud silence.
More recently I wrote to Alfie’s multidisciplinary team to ask for their specific feedback on the agreement, but I haven't heard anything.
Being cynical, I wonder if there’s a reluctance to implement these ideas because it would commit service providers and funders to doing more?
I hope other parents will create an F-words agreement with their child—one that could evolve with a child's development and interests. My initial idea was that you could issue it to your child like a passport in a plastic wallet or holder or on a keychain.
The message behind the F-words is that children with disabilities have a right to a future. The future may be tomorrow, but what determines its quality is what our children do today. Now when we're told something Alfie wants to do “isn't functional,” I'm confident in my reasons for saying “Sod functional, it's fun!” And I have the evidence in the ICF to back it up.
Diane Kay lives with her husband and two boys in North West England. She’s a volunteer for a charity that provides advice on special education and disability discrimination. Diane co-presented a workshop called “The F-words in childhood disability: Why is it so hard to do in the real world?” in Pisa, Italy. Her son Alfie goes to the same mainstream school as his brother Laurie, 5, with one-to one support. In addition to walking, Alfie loves swimming, music and going up and down in elevators. Watch a video of Peter explaining the F-word concepts.