changing routines for a child

August 4, 2009

Its of course going to depend on the kid and situation, if there is any

condition that you can't generalize in it seems to be CMT.A prominent

neuromuscular pediatric doctor summarized CMT by saying " No general statements

can be made " .

Gavin was coming home after school everyday and falling asleep in his dinner due

to trying to do it all, run around, play soccer, wallball etc and do all his

school work. He was doing too much for the energy he has, he was in 24/7 pain

from his back . He lost weight from not eating enough by missing dinner...We

changed up his whole schedule to make sure he's doing what's important..playing

little league etc. with his buddies, not wasting what energy he has on basic

things where he can get help.. He uses an electric chair to go long

distances and save energy but then parks it and runs around his friends.

All these accommodations have made a huge difference in his daily

life...he's happier, more independent, less exhausted, able to go back

out after dinner and play with friends in the park, scouts etc,

otherwise he would be asleep at 6 every night and not able join in,

isolated from the group due to sheer fatigue.

His friends view his chair as his personal car and are

supportive..one boy refers to it as his 'luxury ride'. They just know

that these things help. Some days it seems like every kid in the school

recognizes him and says hi...Other parents have told me that the boys think his

chair is cool and its cool that he uses a laptop to type notes instead of hand

writing. They have no concern about him having accommodations and treat him

like any other kid...they don't bat an eyelid that he drives the 4 blocks to the

baseball park, then jumps out and gets into position. Weare lucky with this

group. Gavin is giving his all to be a part of the gang and respect that.

Cheers

Sally

Recommended Posts