Wyatt will be aging out of the early intervention program in our state when he turns 3 in Aug. The school did his eval and said that at this time he would not qualify for PT or OT. I guess I thought with his diagnosis that he would automatically qualify atleast for someone to monitor him at school and making sure he is doing okay through the day. He will not be going into the school system til he is 5 because he is at a great little school he goes to now, which is very small and he is watched very closely. Just trying to get my thoughts together.

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Jessica,
His diagnosis DOES qualify him for an IEP! He may not need services yet (which I doubt!), but he should have an IEP and be 'in the system'. I waited to do Seph's for when he got to Kindergarten, but the school system was calling me to see what our plans were when he was 5 so that we could put it together. If he does not qualify for anything, how did he qualify for Early Steps?
Lori
Well he qualified for Early Steps with his diagnosis and we do have an IEP but they said it would not include PT or OT because he would not need any services yet. I just didn't know if he should have someone who checked in on him at school to make sure he was getting around, or needed help with writing, etc.

Lori Ware said:
Jessica,
His diagnosis DOES qualify him for an IEP! He may not need services yet (which I doubt!), but he should have an IEP and be 'in the system'. I waited to do Seph's for when he got to Kindergarten, but the school system was calling me to see what our plans were when he was 5 so that we could put it together. If he does not qualify for anything, how did he qualify for Early Steps?
Lori
I guess at this point that would be the Sp Ed teacher who 'owns' the IEP and his regular Ed teacher. I would make sure they are both well educated and communicating wtih not only each other, but you. If they feel that issues are creeping up, then you can reconvene the IEP to include PT and OT. I will tell you that up here, they wanted the PT and OT on the IEP to monitor (no services) as it makes it easier to include when it is needed...and we know it will be at some point!

Lori
Jessica Rownd said:
Well he qualified for Early Steps with his diagnosis and we do have an IEP but they said it would not include PT or OT because he would not need any services yet. I just didn't know if he should have someone who checked in on him at school to make sure he was getting around, or needed help with writing, etc.

Lori Ware said:
Jessica,
His diagnosis DOES qualify him for an IEP! He may not need services yet (which I doubt!), but he should have an IEP and be 'in the system'. I waited to do Seph's for when he got to Kindergarten, but the school system was calling me to see what our plans were when he was 5 so that we could put it together. If he does not qualify for anything, how did he qualify for Early Steps?
Lori
One of the thing my wife got into our son's IEP before he was actually in school was a goal that he is able to do self-stretches. At the time when putting the OT and PT goals in place they didn't make sense because we could not make an achievable goal in terms of meeting peer standards, and something along the lines of 'maintaining flexibility' was not considered a goal. So I think that rework of the goals helped to keep getting him the OT & PT through the intermediate unit... I can ask my wife for a better understanding of how this all went down if you'd like.
Did his doctor recommend PT and OT at this point? Shouldn't the doctor be the one who decides if he NEEDS these at his age? I am quite confused by this subject, when do you start doing PT, even before the neuro doctor decides that the boys need it?

Also, wouldn't his teachers inform you if he has any physical or academic problems while at preschool/daycare?
Hi Ofelia,

If you have a good doc, and I assume you guys do, he/she would be the one to advise when to start and what to do. Nobody knows your son better than you and your doc. In my area the local school district likes to take over student/patient care and while I appreciate the need some families have for this, it isn't always in every child's best interest. Duchenne is so rare I can't imagine they (speaking of my school district here) have much experience with this disease in the classroom. Some educators may notice physical or intellectual differences among kids and some may not. Some may keep parents informed and others won't. There is no guarantee what you may come across so it's up to parents to get advice from their docs.

Ofelia Marin said:
Did his doctor recommend PT and OT at this point? Shouldn't the doctor be the one who decides if he NEEDS these at his age? I am quite confused by this subject, when do you start doing PT, even before the neuro doctor decides that the boys need it?

Also, wouldn't his teachers inform you if he has any physical or academic problems while at preschool/daycare?
Jessica- I am from PA, so my suggestions may not apply, but this was my experience. I struggled a lot with lack of knowledge about Duchenne, inappropriate goals, some of which were actually harmful to him. I tried my best to work the system to get what I needed and luckily, found a supportive person (our service coordinator) who was willing to be educated about Duchenne and change the goals as they were set on the IEP. Before then I was getting quite frustrated. You have the right to challenge their conclusions as far as services if you see fit. I am a teacher, so I know that is an option that you have. I think you either don't sign or there is a space to sign where you say you don't agree. I have a very good friend, whose son has Asberger's, and had many difficulties with being mis-diagnosed, inappropriate services offered, etc. Her advice to me was "sign nothing, agree to nothing until the IEP gives the services that you feel are appropriate and merited." It is your right as a parent. I hope this makes sense. If I can help in any other way, please let me know.

-Joanna
Jessica, also remember, you dont' have to sign the IEP if you dont agree with it....

Joanna Johnson said:
Jessica- I am from PA, so my suggestions may not apply, but this was my experience. I struggled a lot with lack of knowledge about Duchenne, inappropriate goals, some of which were actually harmful to him. I tried my best to work the system to get what I needed and luckily, found a supportive person (our service coordinator) who was willing to be educated about Duchenne and change the goals as they were set on the IEP. Before then I was getting quite frustrated. You have the right to challenge their conclusions as far as services if you see fit. I am a teacher, so I know that is an option that you have. I think you either don't sign or there is a space to sign where you say you don't agree. I have a very good friend, whose son has Asberger's, and had many difficulties with being mis-diagnosed, inappropriate services offered, etc. Her advice to me was "sign nothing, agree to nothing until the IEP gives the services that you feel are appropriate and merited." It is your right as a parent. I hope this makes sense. If I can help in any other way, please let me know.

-Joanna
We had an IEP meeting before Joshua started kindergarten. His principal had a relation with DMD and knew the disease pretty well. Joshua doesn't have a TA this year but may have next year. This year is more of a trial run as to how well he does in a classroom. We keep in close contact with the teacher, principal, and resource worker. He does have physio in the classroom while the others have circle time because it's too hard for him to sit that long. He participates in circle time from where he has physio right behind them. He is taken out of the classroom for maybe 20 minutes per day for learning letters, words, numbers, etc. Next year a TA will be with him as he is a little behind in most areas. They will be adapting a keyboard for him and making any accommodation he needs. The most important thing we've done though is keep in touch with everyone regularly and on a positive note. The schools can only do so much until their hands are tied so the more we do on our part, the more info they have to work with. When we had our IEP meeting though, we had the principal, teacher, resource worker, CFS, CSS, SMD, myself and my husband involved. Everyone had something to say and add for suggestions. There was no negativity and many changes were made afterward because of it. Keep it positive and more positive notes will come of it... even if you disagree, disagree politely!

Naomi
Thanks Cheryl. This is exactly what I have thought. That is why I did not get the part about the school deciding what and when he needs. I also think that the parents (assuming they have a good relationship with his teachers) and doctors can see if he has academic problems and cannot keep up physically with his peers. Regarding the physical part, it is more a question of when; we all know that soon enough they will not be able to do what their peers do.

We go to both Cincinnati and Columbus Children's (Wong and Mendell) with our son. He is almost 18 months old now. Both Drs agreed that he doesn't need PT or anything else at this point. So far his development is similar to any non-DMD boy. This is one reason why I said that for us, being diagnosed through newborn screening, helped only for family planning, which is important nonetheless but doesn't help in terms of my son's progression.



cheryl cliff said:
Hi Ofelia,

If you have a good doc, and I assume you guys do, he/she would be the one to advise when to start and what to do. Nobody knows your son better than you and your doc. In my area the local school district likes to take over student/patient care and while I appreciate the need some families have for this, it isn't always in every child's best interest. Duchenne is so rare I can't imagine they (speaking of my school district here) have much experience with this disease in the classroom. Some educators may notice physical or intellectual differences among kids and some may not. Some may keep parents informed and others won't. There is no guarantee what you may come across so it's up to parents to get advice from their docs.

Ofelia Marin said:
Did his doctor recommend PT and OT at this point? Shouldn't the doctor be the one who decides if he NEEDS these at his age? I am quite confused by this subject, when do you start doing PT, even before the neuro doctor decides that the boys need it?

Also, wouldn't his teachers inform you if he has any physical or academic problems while at preschool/daycare?
Naomi- I read in your reply that your son struggles during circle time. This is also a difficult time of the day for my son at kindergarten. We are having various other behavior issues with him this year. In fact he is in the process of a psych eval through our school district to try and figure out what the issue is. Any suggestions or thoughts you could give me would be appreciated.

-Joanna
Joanna,
First we tried having him sit on a chair instead of the floor because his legs would cramp and he would become very uncomfortable. He was getting up all the time and going to the washroom in the classroom, but just walking there, standing at the door and listening to the class, then walking back. We went to a chair and it helped some, but having the physio right behind the kids and still being able to participate has worked the best. The physiotherapist comes in once per month and teaches the TA's, who do have education in physio, exactly what he needs. All together they end up spending almost 30 min. on him while the other kids sit. Circle time is 45 min. so after his physio he sits on his chair without a problem. He has relaxed from the physio and can concentrate much better because of it for most of the morning. After that, he gets his beans. I hope this helps.

Naomi

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