Sunday, July 25, 2010

Thrill seeker

Often people comment on how difficult it must be to have a child in a wheelchair. While I certainly wish I did not have the experience to say this, like anything else in life, you just adapt to the circumstances. However, one thing that continues to drive us crazy is the wheelchair itself. Not the “thought of” having a child in a wheelchair, but the actual piece of equipment.  Maggie’s wheelchair is a pain.
That may be a bit unfair. Maggie’s chair is quite amazing.  Like a Timex watch it takes a licking and keeps on ticking. Maggie is hard on this chair. Her body never stops moving and she is generally extending her muscles against the head or foot rests. She snaps both off regularly. The last time Chris, the wheelchair tech, said he made the headrest “Maggie proof.”  She takes that as a direct challenge, so we will see how long this repair lasts. So far, the bolts have held, which is to say they havn'e snapped clean off like before (though she has worked the various tightening bolts and screws loose a few time).  
Making a chair work for Maggie is a difficult proposition. She does not have any trunk support and needs a fully supported seating system to keep her upright. The chair both reclines and tilts in space, which means you can angle the seat back without actually reclining the back. We use the tilt a lot. When Maggie is having any respiratory difficulty, we can tilt her back and the change in position helps her right away.  Though I originally thought we would use the reclining feature to change her in the chair, it turns out we rarely use it. It is too difficult, you need more than one person because all the straps loosen when the chair is reclined, so it really is not safe to use that feature.  
Despite all the bells and whistles on the chair, though, all the safety of the chair comes down to the straps. There is a harness across her chest, two straps on her hips and one across her waist. There are seven buckles holding the straps in place. The harness has four, hips have one each and the lap belt has one.
One of Maggie’s favorite things to do is to unhook all those belts. Maggie, it seems, is a thrill seeker.
She has been able to undo the bottom of the harness for a couple of years now. Every time you look over that thing is flapping in the wind, or occasionally she has lifted it over her head completely and it is hanging down behind the chair, useless. I refasten them if we are on the move, but she is safe in the chair without those on if she is staying in one position. The buckle on the lap belt used to have a lock on it, so Maggie could not open it, but Maggie broke that. Now we cover the latch with duct tape so Maggie will not undo it.   All the action is in the hip belt. If her hips are stable, the rest of her will be safe.  Of course, she figured out how to undo the hip belts this year.  That is not good
The first picture is the way it's supposed to look and the second one is the way is looks when she's "fiddling." (and then falls asleep from the hard work)

If her tray is on the chair, she generally will not bother with the buckles because she has to reach under the tray to get to them. Usually if the tray is attached, she is using her talker so she has plenty to do to keep her busy. She cannot have the tray on while riding in the car, though, and there is nothing worse than hearing that “click” of the buckle opening when we are driving.  I am driving in heavy traffic knowing the only thing holding her in the chair is a loose lap belt with the latch covered in duct tape.  This tends to make a mom a tad nervous.
Steve is working on a new configuration of the belts to make the “Maggie proof.”  I am sure she will take this on as a direct challenge too, and we will have to keep adapting to Maggie’s ever-evolving sense of adventure. 

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