New Mito patient question about school

[Guest guest]

Pat-

I would reccomend you get a 504 Plan for your daughter before school starts.

[Guest guest]

I am hoping that someone can give me some help. My daughter

will be starting high school in a couple of weeks. She will probably

be in and out on homebound like the past few years. My question is

what do I need to let the schools know about her condition. She has

a complex I defect. Should I call Dr. Cohen's office and have them

send a letter for the school? Should her primary doctor do this? I

know is high school her attendance will be a bigger issue. The

middle school was wonderful with her. I am just confused on what

needs to be done. Any help would be greatly appreciated.

Thanks

Pat

[Guest guest]

Pat,

If you do not already have an IEP for her, get one. Her credits now count. We hired an attorney to help us with getting Kira's needs me. She is in dual programs for high school. She starts this year. She is set up with Independent study for some of her course work she goes in twice a week to have teacher time, and then she attends her elective classes when she can on the high school campus. When she can't be at school a home bound teacher is sent to us. She has been provided with a lap top computer for her to connect up to the school on line programs as well by the district. This is our first year doing it this way, so we will see how it works. Anything has got to be better than her Jr. High years of very poor experience.

Yes, Yes Yes, get a letter from DR Cohen for the school. This will greatly help in the IEP process. Our attorney recommended we tell all Mito patients that they do not settle for just a 504, I highly recommend you do not allow them to force you into a 504. A 504 limits what the school must provide for her even though they will tell you it doesn't, it does. Under an IEP she is intitled to more help and services and it is monitored more closely for compliance issues. If you can only get a 504 for her, do it and work on getting the IEP for her. With an IEP when she goes to college it will also entitle her to some assentive services.

I hope this helps. Sorry It took so long for my response I must have missed your post.

HUGS!

O and crew - Kira, , and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

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