I'm on the fence about approving Aaron's current IEP. One of Aaron's tasks which is hoped to help him maintain flexibility/strength is listed as being able to "perform active squatting" to pick something up from the floor such as classroom objects, etc. Aaron doesn't seem to have problems picking things up from the floor (when he WANTS to) but the word squat just throws me into "BAD, BAD, BAD" mode. Am I wrong? Additionally, he'll be asked to hold the "Superman" position for 15-20 seconds, and they are concerned about improving his posture. Aaron is still relatively strong, but I can see that some things are getting harder for him. Are these OK to be asking of him? Will these activities cause damage?

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There's no way on earth I'd sign that with those in there. Go with your gut.
Hi Melanie,

I'd have to agree 100% with what Laurie just said. I'd never sign for what they are asking because it could possibly cause problems now or later. Even if it didn't end up causing any problems I wouldn't want to take the chance, thinking our boys have enough to deal with and not all school PT"s know how to deal with DMD. My son goes to private school until the end of this year (no formal IEP) but I tell them no pe, no prolonged standing (choir) , no lifting of books... and Alexander gets to decide (quality of life issue) when and how to be physically involved in school related things, pe, sports or what ever. So far so good, although it took awhile for things to sink in with them.

Your instincts are good on this one!
My approach to that question would be " how does that benefit him academically"? Secondly, with muscle loss the concerns that need to be addressed should be so that he maintains his daily strength for writing and other desk work activities. If they are concerned for his posture, then gently point out to them that their concern for the student should start with his desk and his reach, if he needs a cushion, etc. I had my son school build cutom desks for him that followed him through his school career. There are many ways to assist his comfort for his desk work than to try to incorporate a "perform active squatting" The safety issue alone should be a concern for alarm. Down the road they will need to focus on modifying his work to accomadate his daily strength. I had my sons 504 plan include when he was sick or missed more than 3 days that the school provide "home bound" education. His school worked with me on all levels. He had an aide in 4th grade and I am so thankful that we started there. He fussed, but she allowed him his space and addressed his needs. She was so GREAT that the county hired her to be the Nurse Coor for the district. Learned alot from her.

I have done alot of IEPS and 504 plans for my son and other parents, and I will tell you that the best way to start is always refer to your son as "the Student" it puts them on all equal levels of what they are entitled to and helps keep us less emotional (for the time) to advocate for our boys.
When in doubt, don't do it. Put together a plan, make it simple and realistic. Present it with confidence and positive words for the staff.

I have alot of sympathy for pt's trying to write goals for ours sons. They have to be written as something measureable. That's why the activity and a time frame are usually both listed. Last year, I worked at writing a few myself that I could suggest to our school pt. It's challenging. If you're uncomfortable with the goals, maybe you can suggest some alternatives.

PPMD has a video and book on appropriate PT for students with dmd. Squats would not be good. Posture, flexibility and symmetry are all important with this disease. A lot of reps are a no. Holding a stretch for 1-2 min good. I got the book for our PT and she liked it so much the school reimbursed me. DMD required untraditional PT. Stay on top of it if your school is unfamiliar with the disease. Check on PE too. This can be a "danger zone" too.
http://www.parentprojectmd.org/site/DocServer/TREAT-NMD_DMD_interim... gives some information on exercising also.
If your school district has a swimming pool availiable that might be one option for PE/exercise. My son was bused to the town swimming pool from 5th until 11th grade, twice a week with his aide. The swim "coach" was given direction by the school PT who luckily had experience with boys with dmd. My son had to stop after his spinal stabilization at age 18 because his center of gravity changed and he couldn't float anymore.
to me that is unreal squatting is very hard and will only get harder as he gets older as I read this I see it was posted a long time ago what happened? did the pt want this hope to hear your answer Penny
I too agree with Laurie. A site I sent to the school for Joshua's physio, which they watched and adapted, was a video from PPMD. Here's the link: http://www.youtube.com/watch?v=0_ecVd3kNtQ They too were beginning to ask him to do things "his body told him not to try". Once we sent the video, they passed it onto others in the same situation. It shows them what to do and why.

My son is only 5, so I haven't been thru many of these but have been lucky to work with PTs who were flexible. I've objected to goals that involved mobility on stairs and any kind of jumping, but am fine with some of the other goals that are more play related. Some of the things that have been added, like "frequent rest breaks" have been helpful from a recess and PE standpoint. James is in a Catholic school, and while they've been receptive to the public school system's IEP, they also appreciated my direct contact. I met with his primary teachers and with the PE teacher, giving them booklets from PPMD. I think a lot of it is knowing your son and understanding that most of the school system's staff have never dealt with DMD before. You'll need to be assertive, but it's also important to work as a team.

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