It seems Owen’s increased tone was in fact due to the clonazepam withdrawal. He’s back on his previous dose (after consultation with his physician) and almost instantly, he returned to his old self. What a relief! I feel much more confident about the quality of his communication assessment next week – he’ll likely be in a ‘regular’ state so that we can best determine what he needs.
For Owen, expressive communication will likely require some kind of physical involvement – a gesture, a mouse-click, an eye-gaze… So in order to support him for physical movement, he needs appropriate seating – or in his case, an appropriate wheelchair. His current one (Zippie by Quickie) has been ok, but with his fluctuating tone and spasticity, he tends to break the various metal pieces, like his side laterals and headrest. He pushes so much that the metal wears away over time and eventually snaps or wears through. Through Bloorview Kids Rehab (here in Toronto), we’re going to trial a new chair that is ‘dynamic’ – it moves with him. Should help prevent breakage, and will also support him better. (Typically, once the reflexive behaviour is over, he lands in the wrong position. This chair apparently will put him back the right way.)
Here is the promotional video for the chair, about 5 minutes long:
Well, that video teared me up a little… not for perhaps the ‘expected’ reason (“oh those poor dear children”!), but because the researcher kept saying “the kid”. I found that so upsetting! Anyone in that room should have said, STOP, we have to do another take – his name is STEPHEN. Start again.