We would go full of optimism and pride at how well Deane was doing, ready to list his accomplishments since our last visit. I left every time and dissolved into sobbing tears.
Deane was born two months premature and for the first year of his life was followed by the preemie clinic at the hospital. The physiotherapist who was in charge had been a great resource while Deane was still in the hospital. Although she had a very straight-forward manner, I remember her being encouraging and supportive.
Once we started seeing her in the clinic setting, her attitude didn’t change, but her role did. While previously she had been trying to teach Deane how to suck, now her job was to measure how he was progressing. So each meeting we went in as proud parents only to be told how far behind the traditional milestones Deane was. She was objectively recording the development of the premature babies. I understand why she was doing it, but it was a crushing experience.
In a recent article in The Globe and Mail, this issue of measuring accomplishments was linked to a new(er) approach of helping disabled children master various skills. The focus of the article is a program at Toronto’s Holland Bloorview Kids Rehabilitation Hospital that uses traditional physio, speech and occupational therapy as well play. A early childhood educator goes to the child’s home to teach parents how to play with their child in a way that can help them learn such things as grabbing and releasing a toy or developing pincer control with their fingers. The ECE profiled avoids questions about where the child should be in his development, preferring to say that the child is “on the right path.”
The article cites a paper by Dr. Peter Rosenbaum, the Canada Research Chair in Childhood Disability, that argues that we – the medical community and families – should emphasize what’s possible and not what is broken. His attitude is to stop talking about trying to “fix” disabled children and instead focus on using fun activities to help them develop.
At the same time that we were going to those disheartening preemie clinic visits, we also enjoyed the services of a physiotherapist and a person we referred to as the “play lady.” Our play lady used a similar approach to the one described in the article, encouraging Deane to reach for things, hold on to them and to find ways to support himself.
While we had some of the services involved in the Holland Bloorview program, how we got there was rather happenstance. I can’t remember how we got connected to the physio who came from a government funded program. Our play lady worked for Easter Seals. She referred us onto an excellent preschool, also run by Easter Seals, where she continued to follow Deane’s progress. Unfortunately, at the end of his first year there, Easter Seals cut the play lady program.
I thought then, and still think, it was a short-sighted decision. It had to do with an internal realignment of services, but it was unfortunate that no one picked up the program at the time. She had been one of my few life lines in the first years of Deane’s life. She came into my house and reassured me that, regardless of the milestones other children were reaching, my son was doing just fine.