Hello again everyone! it's been awhile since I wrote and happy to say my son has been doing well with his transtion to the Middle school. He lost is ability to walk this last Dec. age12 and has been using a powerchair since the beginning of this school year. he has a wonderful aide in school all day who helps with his physical needs and social ones too. However, I can't help wondering or worrying what the future holds for my son in a school that isn't very familiar with Duchenne prognosis or possibly uncable to accommodate my son's increasing needs for the future? I would like to know if anyone has a son in High School and is it possible to academically success in a public school? What accomodations have you used for academic success and daily functioning, such as: note taking, writting, toileting, transferring and other things that I can't think of because I am not at that point yet that might come up in the future? any thoughts?

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Hi Pamela, I happy to hear the trasnsition to middle school is going well for Jacob.  We always had difficulty with transitions no matter what the source.  I can only share with you my experience and hope that gives you some insight as you process through your future concerns.  We had a great experience in our public school system in regard to making accomodations for my son academically, physically, and socially.  However, it took a lot of education, advocacy, and team work.  In our system, we did not have to resort to intense arguments about his "rights" to get the accomodations we were seeking.  That is not always the case as I have talked to many parents accross this country.  Yet, I tried to educate myself as best I could on the IEP process and my sons rights to make sure I was advocating effectively for my son.  I would try to bring solutions to the table, even strategies, for helping my son in the classsroom.  For instance, I brought his physical and occupational therapists into IEP meetings to help educate the teachers and aides on how to work with my son and meet his needs with accommodations.  They even made themselves available to take calls if they had challenges.  I felt it not only helped my son, but demonstrated I was part of the care giving team for my son, and wanted them to be successful at school helping him as well.  I needed people to "invest" in my son to get the greatest result.  For us, the public school system seemed to have the most resources to handle the physical accommodations, and were required to by law.  My son had classroon aides to help with acedemics, transfers, and toileting for instance.  The IEP is where all this planning comes together.  I know Jill Castle does a lot in this area and you may want to contact her.  She is a PPMD member and strong advocate.  But to go on, my son did very well in High School and many accomdations were made that kept him growing academically and socially.

Hi Pamela.  I have two sons who have DMD.  Matthew graduated from high school last year and just finished his first year of college.  Patrick is about to finish his junior year in high school.  Both are doing well academically and had enough support in school. Both use power wheelchairs for mobility.  Matthew is much weaker, yet has always been motivated to do well and doesn't let his disability get in the way of being involved.

It should be part of your son's IEP or 504 meetings to discuss the accommodations he needs to be successful in the general curriculum.  Topics to discuss include are whether he needs help taking notes (Neither of my sons did.), a separate set of text books at home to avoid dragging them back and forth in their backpack, access to all classes and activities, an evacuation plan, assistance with coats, lunch and using the restroom.  Students often helped my sons get their books and lunches from their backpacks, so they fed themselves.  A male aide or paraprofessional as well as the nurse may be trained to help with using the toilet.  Teachers can share notes or a reliable student can be in charge of sharing notes and the use of a laptop is also helpful for notes.  This is a short list of of possible supports needed. 

Encourage your son to be involved in clubs, student government and social activities.  It is a great way to build a social network and all students should participate in some activity. 

Brian

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