As parents who have traveled the world seeking early intervention for our daughter, Sarah (spastic CP), we feel uniquely qualified to share our observations, and advocate for the need of early diagnosis and intervention from birth. It is the availability of such a program, Conductive Education, that is the sole reason for our family’s move to Grand Rapids in 1999. Sarah was born with premature lungs at 36 weeks. She spent 8 days in the NICU in Memphis, TN discharged as a healthy baby just over six pounds. Though she was not making her milestones, her pediatrician had every reason for this. Some babies never crawl, you know, they go straight to walking. If only we knew she was at risk. It wasn’t until well after he first birthday that we started seeking help.
Sarah began Conductive Education at the age of two and a half. She languished nearly a year in traditional PT, OT and Speech Therapies. While these professionals were very caring, loving and well trained, they were all in different buildings, at different times, stressing different things. They seemed to lack the discipline, structure and time that we expect to spend on developing a new skill. As amateur athletes, my husband and I saw that this fragmented approach was not in keeping with the way we live and train. We began to search for something different. This is when the traveling started! Our discovery of Conductive Education brought us to a parent and child summer camp in Washington, DC that had a very organized structure and routine.
As each new challenge was met, a more difficult task was added. This, coupled with the rhythm of songs and counting, gave us a predictable, fun and rewarding group experience. Instead of spending three afternoons a week alone at a separate therapy, all forms of therapy could be integrated in one morning, with a group of kids her age and ability level. Doing this five days a week soon showed measurable improvement. She could now sit independently. This gave her a sense of accomplishment and control that she had never felt. Where she had always been a happy child, her confidence began to show.
The next challenge was to secure full-time Conductive Education. We traveled from Spokane, WA to Budapest, Hungary, stopping back in Washington, DC and Picton, Canada. We met families from around the world on the same journey. What an affirmation of our beliefs!
With early intervention and complete integration of traditional therapies, our child is developing the skills necessary to live an active and independent life. Sarah is a nine year old with spastic CP who continues to progress physically without any surgical intervention thus far. We saw the rewards of a medical collaboration between the Pető Institute and local hospitals first hand during the four months we lived in Budapest and use that as a model for managing her care.
It is our hope that this concept can be allowed to take root in Grand Rapids and serve as a model for other US cities and states, just as the Pető model is successfully used in many counties around the world.
Kathryn and Shawn