Initially the hubby and I had been put off by her. She had taken forever to return our calls and when we finally spoke, she dissed the expert we had consulted with at an independent seating clinic. She said she had different recommendations and bragged about her twenty-five years in the field.
But she won our admiration. She interviewed us and assessed C. thoroughly and expertly. She easily got me to divulge - reluctantly - that I leave C. in bed for far too many hours in the day. (Please note: I have no help!)
Yet instead of reproaching us, she suggested simple changes that will benefit C. Simple feasible changes that I'm already implementing: changing her lying positions periodically, sitting her in various seats other than the wheelchair, putting her in the Rifton walker for longer periods.
Most impressive was her encouragement of sitting C. without any support, M.E.D.E.K. style. I told her that I used to do that years ago but stopped because of time constraints. I considered walking more important and opted to focus on that. Independent sitting was gradually eliminated from our routine I had assumed the skill was lost.
Well, with Y.'s help we tried it again and lo and behold: a self-sitting C.! We seat her backwards in a regular chair and press on her thighs or knees.
C. was so happy she gave her "tip-of-the tongue" smile. And she chalked up twenty minutes of sitting!
We're looking forward to resuming this activity every day. E also suggested having her positioned with the television on the right to try and encourage her to tilt her head to that side. Her head is nearly always facing the left which, Y. explained, weighs her entire torso down in that direction. Good to know but why does such basic advice take eighteen years to reach us?
C.'s school physiotherapist, R, was present throughout the session, contributing nil. E politely used "we" for every assessment made, but it was clear that R is painfully incompetent. And we're still clueless about what she does with C. at her half-hour/week physiotherapy sessions. She has never dropped us a hint to help solve that mystery.
I know, I know: why not just ask? I guess I'm confident she doesn't do much. So why pin her down?
2 comments:
Some links you might be interested in:
Nothing About Us Without Us
Adaptations for Wheelchairs and Other Sitting Aids
Full disclosure, both books are about assistive aids for people in third world countries--but the basic needs are the same. (And it sounds like the doctors in your life aren't very good about supplying needed information...)
Perhaps the biggest plus: you can make everything in these books with stuff from the hardware store, for a tiny fraction of the cost any medical supply store would charge! ;-) Granted, making some of this stuff is NOT for beginners, but it shouldn't be that hard to find someone local to give you a hand.
Corinn, thank you for this wealth of accessible and valuable ideas. I look forward to reading the material fully and will post the links on my blog for other readers' benefit.
C.'s new wheelchair equipment should arrive in five days and I can't wait. The impact of proper seating on a person's general welfare is sometimes underestimated.
C.'s demeanor was so much calmer and more content when we tested out the sample inserts on her; I'm hoping that once she's permanently seated that way we'll see progress in myriad areas.
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