Hello, everyone! We are getting ready to revise our son's IEP next week. One thing we need to change is the goals for PT. Originally his IEP (a carry-over from preschool) included some things that were no-no's like stairs. We had good communication with this year's PT and were comfortable making changes verbally. Now, we need to get things in writing for next year. The difficulty is coming up with measurable goals. I'm hoping some of you have some good suggestions of what you did. A little info on the stage my guy is in may be helpful. Matthew will be in 1st grade next year. He already falls often and had great difficulty getting up off the floor. I appreciate your help.
Danelle

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Hi Danelle,
My son is 7 and finishing up 1st grade. He has had a great PT who has set goals to maintain his flexiblity of hamstrings and heelcords as well as symmetry of his spine and pelvis. She works with the gym teacher to create ways he can participate that are fun and meaningful but not creating fatigue. His class has gym 2x a week so the PT works with him one of those times so he dosn't have to have gym 2x. A few other things his PT has been very good at is advocating for him in all of his school settings/classrooms. Instead of using stairs, he can use the elevator--he gets to pick a buddy to go with him each time. They place him in a classroom that is strategically located as near as possibly to the other places he needs to get to frequently. And she goes into every classroom and adjusts his desk and chair height. Have your PT find chairs and desks that adjust--it helps his posture tremendously while sitting. Also, at circle times, they set up a few chairs around or use risers that he can sit on and not have to get up off the floor. The extra chairs allow his classmates to choose sitting there also and he dosn't feel "different". They don't push him, at this stage, we let him choose.
I hope that's helpful!
Cindy
Our son is in fist grade now. Our school PT has helped us with finding seating that enables proper posture and keeps his feet flat on the floor (or a chair rest) so as to avoid constant pointing while dangling from the chair. She has also helped us get a stool for use in floortime/circletime actiivies so he doesnt have to go all the way to the floor and has something to hold onto when standing back up. In preschool we did like cindy mentioned and got 3 chairs, so any student can choose, but now we just have Dylans special stool and chair. He likes them and doesnt mind being the only one at all. He finds them helpful. We just explain to his peers that they help with his muscle problem.

We have as a goal to teach him to self stretch. That way the PT works on stretching as well as teaching him things he can do himself. To implement this goal they have added a yoga/stretching routine to the start of class for all of the kids. They all love it, it only takes 5 minutes and calms everyone down before class starts. They have no idea that they are doing it for Dylans benefi (nor does Dylan). The PT comes periodically to teach the yoga and to make sure Dylan is doing the stretches appropriately, but most mornings the teacher just follows the routine, which at this point all the kids know. They have a poster board displaying each yoga position. They stick to yoga moves which are appropriate stretches for DMD and that dont involve isometric, excentric or strengthening activities. Sometimes they have to modify the stretches further since dylan has difficulty with some of them, sometimes a techer aid or PT puts a hand on his back or whatever to help him hold the stretch.

Dylan does not participate in PE since we prefer to not push him and value voluntary play during recess over drills and forced play at PE. Anyway Dylan recieves some other services (ie reading) that we schedule at PE time. That way he doesnt miss valuable class time for reading help. Next year we will try to get a slant board for the resource room that he can stand on during computer, drawing or reading during his resource time so that he can get in an extra heel cord stretch.

Good luck with your IEP

Carrie

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