“Kids are the experts about themselves,” says Gail Teachman, occupational therapist at Bloorview Kids Rehab. “They’re the ones attending all of the therapy. They know a lot more than we’re used to giving them credit for and have a good sense of what’s working and what’s not.”

Children’s opinions are now sought with their parents in surveys by therapists to identify rehab goals at Bloorview and beyond.

“Parents tend to be focused at the impairment level, at wanting their child to do things in the typical way, and doing whatever is possible to ‘fix’ the disability,” notes Cynthia Tam, an occupational therapist and clinician investigator with the Bloorview Research Institute.

Children simply want to participate in life like their peers, Gail says. “They want to be part of a peer group — to go to the neighbourhood school, to a friend’s house, to birthday parties, to camp. They’re not nearly as focused on their differences.”

If children are able to participate in everyday activities — even if they don’t carry them out in a conventional way — they’re usually satisfied, Gail notes. The child with poor fine-motor skills who has wobbly writing is more concerned about what he or she has written — the actual story — than its legibility, Gail says.

Sometimes, society’s norms about how we do things create the real barriers. For example, Cynthia has studied how children with weak hand skills learn keyboarding. Typically, they’re put through endless hours of typing drills in the hopes that they’ll learn the traditional approach of touch-typing — which relies on memorization of the keyboard and use of all fingers. But few can master it because they have trouble co-ordinating their fingers and need to visually track where to place them.

Most children in the study got so frustrated that they gave up, Cynthia says.
Those who eventually had success broke with convention and used a ‘hunt and peck’ method. This involved typing with one or two fingers, so they could visually keep track of where to place their fingers. While they weren’t fast, these students could get their schoolwork done and “felt good about their own way of typing.”

Parents need to question whether inordinate amounts of a child’s time are spent in therapy that doesn’t translate into improved participation.

“There is ample evidence that just changing the impairment doesn’t correlate with a change in participation, which is the assumption that parents make,” Gail says.

“If the child’s goal is to play a gym game with the other kids, achieving a 10-degree difference in range of motion doesn’t mean the child will be able to play. Inclusion might require changing the game rules for all players, changing the environment, or using some kind of assistive technology.”

When we don’t listen to our children’s feelings about therapy, we run the risk that they’ll develop passive personalities and low self-esteem, internalizing the message: “I’m not okay the way I am,” Gail says.

Gail and Cynthia encourage parents to take a close look at their own goals for their children, and to ask kids how they feel about therapy on an ongoing basis.

“For some parents, there may be areas of therapy that are deal-breakers, where they feel they can’t give their child a choice,” Gail says.

“But it’s helpful if they can identify other areas where it’s not as big a deal and let the child know he or she can make decisions about those areas.”