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Permalink Reply by Teresa Wood on November 10, 2009 at 3:25pm

Hello. I have had similiar questions regarding my sons school. At first they were reluctant to give him additional help or even test him. I had to go up to the school everyday and become the "squeaky" wheel. Finally, they decided that he should have 30 minutes of reading and math extra each day. This is not enough. I finally got a hold of a parent resource network in my area and they sent me wonderful information and form letters that I could redo and send to my son's school. I did just that and now they have agreed to give him special ed testing as well as speech and occupational therapy evaluations. All i had to do was send it in writing. THey were not going to just give it to me. We as parents of children with Duchenne's are their only voice and we have to fight. I knew what i wanted for him and I went out and got it. Once you hand them the written request they have 60 days from the day you authorize testing to give him that testing. Originally I could not beg for an ARD meeting but now after the testing is done I am getting one for my son. Keep up the fight. You will win in the end.
Teresa

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Permalink Reply by Kelly Bruhl on November 12, 2009 at 12:49am

You can receive services under the orthopaedic impairment umbrella. If he has learning issues as well, it will be easier to get those services once he has an IEP. Good luck!

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Permalink Reply by Joshua's mom on November 13, 2009 at 12:28am

I know it may be different for us since we're in Canada, but when we went to his first IEP meeting, my husband and I went with his physiotherapist, his occupational therapist, his speech therapist, our rep. from the Society for Disabilities, and our rep. from Children's Special Services. We all met with the principal, the resource worker, and the secretary at the time. It was much easier to get what he needs when everyone can voice and not everything was just sent on paper. Everything that was spoken was typed and a copy was sent to each one of us. We have had absolutely no issues with the school since everyone was able to tell their concerns, including the school, and everyone also knows... because everything was said... where everyone stands. I hope / wish it could be done everywhere with everyone who needs it.
He hasn't had to have a second IEP meeting because everyone is told of any changes needed, and everyone listens to what is needed and makes the changes without a blink of the eye. I hope you can too.

Take care,
Naomi

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Permalink Reply by cheryl cliff on November 13, 2009 at 7:50am

Hi Bill,

We too live in Cal so assuming that not all school districts function the same it might be wise to go directly to the district office and get a list of services that San Jose Union offers. Then, decide if you want to register your son as a 501 (might be 504 but I can't remember). This designation will provide for your son instead of having the IEP process. I have heard school districts will be resistive to this designation and may not actually tell you it is available. I understand it allows more flexiblity for making necessary changes in behalf of your son and might even decrease some hassle and paperwork.

Then, you might want to download the PPMD Educational information at this website which provides direction for your son's educators. Probably you will have to stay on top of his teachers along the way and make sure they fully comprehend what DMD is, what it does, and how best to work around the complications and changes in his condition. You probably already know what your son can and can not do so this most likely should be communicated to his teachers, every teacher, every year. I would expect most teachers and administrators haven't come across anyone with DMD before because this disease is very rare.
It's a huge responsiblity, but with DMD nothing is ever easy.
Much luck!
cheryl

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Permalink Reply by Bill Cain on November 13, 2009 at 5:50pm

Thank you everyone for your replies. The IEP went well, it did not get changed over to a Sct 504 and some of the changes that we talked about in the IEP have already been put in place. It is not that I feel we should be getting services that he doesn't qualify for but since our school district is financially lacking then they are not forthcoming in any way to tell you about services. Even if you go to the district office they just reroute you back to the case manager and you dont get anywhere. We were happy with the outcome, and feel they have Calum's best interest at heart and it is not a financial obstruction that he is not receiving OT, PT, or speech, it is he just does not qualify at the moment.
thanks for the help and advice
have a great weekend.
Bill

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