I can be pretty scared by change, especially when it comes to adding to a mobility/rehab formula that has served MM well for nearly seven years. But starting at the International Seating Symposium (ISS) back in March, I noticed that proper positioning during sleep — aka, nighttime positioning — was getting a lot of attention.
It was at ISS that I met Sue McCabe, senior occupational therapist for the Centre for Cerebral Palsy in Perth, Australia. Sue — who’s interviewed in this month’s “24/7 Positioning” feature — specializes in working with children who have CP and has specifically worked on attaining proper positioning during sleep for these clients. From Sue’s presentation, I learned more than 80 percent of children with CP have some kind of sleep disorder that makes it very tough for them — and their caregivers — to get a good night’s sleep. Eighty percent! Poor positioning at night can exacerbate existing medical conditions, plus the resulting exhaustion can cause postural problems during the daytime. Kids may not have the strength and stamina to stay in their wheelchairs as long and may be less functional in them. In their weary state, they may learn less in school and benefit less from therapy.
Not to mention the wear and tear that poor nighttime positioning can wreak on caregivers. Sue told a heartbreaking story of a single father who seemed devoted to his teenage son, who was non-verbal and severely affected by CP. Despite the father’s apparent interest in caring for his son, he perpetually failed to show up for appointments with his son’s therapists, even when the therapists called to remind him shortly before. Those therapists eventually discovered that the father spent every night sitting in a chair next to his son’s bed. His son frequently stopped breathing during the night, and the father had trained himself to awaken whenever his son’s breathing audibly changed. The father would then jump up to reposition his son so he could breathe, then go back to his chair and wait for the next episode.
Imagine knowing your child could suffocate if you didn’t notice his distress, wake up and reposition him in time. Imagine sitting in the dark for a dozen or more years, listening for your child’s breaths, trying to fight off your own need to sleep. I imagined it and knew MM had to start treating nighttime positioning with the same devotion we show to seating & mobility during the day. It’s now clear to me that the effectiveness of postural intervention via wheelchairs and seating systems can be compromised if those clients aren’t properly positioned during sleep, as well.
By the way, that story has a happy ending: The rehab team worked with the father to create a nighttime positioning system (and helped attain equipment to help the son breathe more smoothly). One night thereafter, the father was again startled awake by a strange noise. He hurried to check his son and discovered that unusual noise was the sound of his son breathing deeply and consistently for the first time in many years.
What a terrific bedtime story — and success story — for that rehab team, that devoted father and his healthier, happier son.