How much physical therapy is to much for a child with DMD

My child goes to therapy at a learning center on Tuesday's for pt well on the same day he has pt at school. The school is trying to tell me that that's too much therapy for a child. Well I didn't mean for therapy to be at the learning center the same day as the school, after we started the pt at the learning center all of a sudden school is like well we have pt at school that same day. PT is at 10-11 and then at school at 12-12:30. I don't think 1 hr and a half is gonna hurt anything. I really would like to know if anybody know's how much therapy really is to much because I just don't know what to do I'm having a battle with the school and just don't know what to do. The doctor refered me to the learning center for extra help. The school tries to say that I shouldn't be taking him out of school period.

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My boys are 16 and 14 and I have heard and been through the schools trying to tell me what is best for my children. My sons have personal aides and I have been there. I would request the IEP meeting and I would take with me the doctors referral to the meeting and I would also take the information on muscular dystrophy for the meeting. They are not in charge of making decisions the decisions are made by us the parents and they need to know and understand that they work for us and we do not have to make our decisions based on what they think is the best for our children. Those meetings are for us the parents to design the best care for our children and their education. Of course not all of the staff will agree but you will be able to build alliances with certain staff members that will support and back you. Always contact those individuals that are above the teachers and the principles. You start from the top and they will take care of the needs of your child. I cannot tell you how many times I have dealt with Special School District Supervisors. It has been worth it in the end. Main point to let staff know of is that when you have those meetings your are in control of the meetings and they cannot sway your decisions when it comes to your child. I really hope I have given you good advice.
Hi Everyone,

I feel compelled, as a public school teacher, to remind you that you are in control AND, most importantly, you have the law on your side.

Amanda, this goes beyond your initial question, but remember, in the end, the school MUST have an IEP for your child due to his disability, but you don't have to, nor should you sign an IEP until it is satisfactory. Consult with your doctors and trust your own instincts as to what that satisfactory means for you.

The point is you are entirely in the driver's seat - and I know, from being on the other side of the table, that the LAST thing a school wants is to be faced with legal proceedings or to be asked to pay for an outplacement (which will run between $25,000 - $100,000). Don't sign, get the proper documentation from your doctors for services required and wait - the school will come your way. Guaranteed

Before you pull your child out of public school, use the laws that exist to your son's benefit. Get an advocate if you're not comfortable doing it yourself. You risk losing a lot of great services if you voluntarily take your son out, so I would encourage everyone to think hard about that before you do it.

Jerry Dallapè said:
Ha! Try telling them that you intend to take him out of school permanently. They have no right to tell you that you "shouldn't" do what you feel is best for your son. We took Ewan out of school about six weeks ago (for other issues entirely) and have been homeschooling ever since. He is now doing the work that his class will be starting in Jan/Feb. When we took him out, we asked the principal if it might be possible to skip him a grade next year if we decide to put him back in school (part of the problem was his steroid induced frustration over his classmates not being as smart as he thought they should be). We got a flat out "no", so we may just keep him out and keep homeschooling. Maybe give him his GED when he turns 16 and send him straight to college classes.

Public schools drive me nuts anyway, but the way they turn a blind eye to boys with DMD sometimes just makes me want to puke. Amanda, I know not everyone is set up to be able to homeschool the way my wife and I are. If you feel you can, I would totally support you, but I know it's not realistic for most parents. My point in this little side rant is to just encourage you to fight to get what you think is best for your son. Don't ever feel intimidated by beurocrats into doing what THEY want just because it makes it more convenient for them.

As for the question of 90 minutes being too much, I will agree with another poster here in that it depends on what kind of PT. Also, I would say it depends on your son. Only you know what he needs and what he gets out of PT. I will say that we don't do PT outside of the home at this point. Ewan is 8 and his heel cords stretch to 90 degrees. We either do manual stretches (30 seconds on each side five time each) or boots for one hour. We try to do one or the other every night, but realistically it ends up being about five times a week. So far, he has maintained his 90 degree angle. We don't plan on changing anything so long as he maintains this level of flexibility. Would that be the right decision for every boy? Probably not, but it has worked for us so far.
There's no exact science. I never allow therapy in school and outside school on same day so that I don't overdue it for the boys. [But we have 5 days a week from Board of Ed.] In fact you should figth for more and shorter seessions each time exactly becuase you agree with them. Take their point and use it against them.
Correction: I thought you were talking about PT only. Disregard. Sorry.

sam johnson said:
There's no exact science. I never allow therapy in school and outside school on same day so that I don't overdue it for the boys. [But we have 5 days a week from Board of Ed.] In fact you should figth for more and shorter seessions each time exactly becuase you agree with them. Take their point and use it against them.
We love the private PT work we are doing for our 5 year old. We are learning how to strengthen his core muscles and teach his brain proprioception with as many concentric exercises as possible. Now, this of course works for us, but school... yeah they are more interested in helping him with behavior problems than with overtaxing his fine motor skills. So we are updating his IEP this week.

I'm a little ignorant in this but what is the real benefit of PT in school? How does this improve his educational success? I easily see why OT is helpful. So, can someone help since our IEP mtg is this week?

Thanks, Liisa
I'm 27 with dmd honestly the only worthwhile physical therapy to me seemed to be range of motion to prevent contractions but 1 hour and a half is a bit much in my opinion... i do pretty much do 20 mins half hour it really depends on whats right for you and your son

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