Hi!!! and HELP!!!!  My family is moving back to the States in Jan. We've lived in Brazil for the last 8 years.....While we're excited to be going home, I'm feeling insecure about the kids school transition.

My son Lucas will be 11 in Jan. so the middle of 5th grade....I have read about IEP's and how you have to take charge from the beginning with the school systems to get what you need for your child...but I'm not sure what to ask for!!!! His school in Brazil was private and small..they took excellent care of him and whatever he needed on a day to day basis they provided....Lucas is still ambulatory...but enjoys the help of a scooter for long distances like the shopping mall...He is mostly a B student with a few A's and an occasional C......He can write well, but does get tired after a while....He can take care of all his personal needs..He. likes P.E., but can't do everything, He has a hard time with stairs......I feel blessed to have him still doing so well....but want to make sure I set up the best situation for him when we get to the States...{South Florida, would LOVE to get to know other families in that area}....I do not know anything about the laws...what he's entitled to....ect.... Any info you can pass along would be GREATLY appreciated!!!! Thanks!!!!Karen 

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Hello Karen,

Many people believe a student with DMD is automatically eligible for Special Education, yet this isn't always true. The fact is a student is eligible when a disability impairs his ability to benefit from the general curriculum and needs special education and related services. Eligibility is determined after evaluations are completed and interpreted by an IEP Team consisting of the parents, regular and special education instructor, other professionals who will work with the student such as physical and occupational therapist and an administrator who is able to authorize the Team's determination.

To begin the process parents will contact the school's Special Education Administrator and request evaluations be conducted that will determine the child's present level of ability. Evaluations include academic, physical and occupational therapy, speech/language, behavioral and psychosocial assessments. Once the tests are completed and the team determines the student does need special education and related services the IEP Team develops a plan outlining the services, frequency, goals and how often a child will remain in the regular classroom setting. The Team will also determine whether additional accommodations are needed for standardized testing are needed and what these will be.

Accommodations often needed for a student who has DMD include modified assignments limiting prolonged writing, access to a set of books at home, assistance with toileting, an evacuation plan, reduced homework requirements provided proficiency is maintained, preferential seating and desks suited for use with a wheelchair, physical therapy, adapted physical education, laptop for written assignments, assistance with books and jackets and other services based on need.

If the Team decides a student is not eligible, he may still receive services and accommodations under Section 504 of the rehabilitation Act. This law protects disabled students from discrimination and removes barriers that prevent a student from participating in any school activity including after school events.

To learn more go to: http://wrightslaw.com

Best of luck with your future plans.

Brian Denger
Karen,

Contact the ARC in Florida or in your County if they have one. (http://www.arcsofla.org/about_arc.html) They know the drill and can guide you and may even be able to provide an advocate to go with you. They now serve any people with disabilities.

Here is a list for Florida (for those of you in other states, start with http://www.nichcy.org and choose your State) http://www.nichcy.org/Pages/StateSpecificInfo.aspx?State=FL One of the education organizations listed is going to be a federally funded one meant to assist parents. In Colorado, ours is called the PEAK parent center. Not sure which one is the equivalent on this list.

Contact your local FACES chapter from PPMD and also check with the MDA office if there is one. The hospital which will follow your son for MD may also have some resources.

My son, who is now 20, was classified as having a physical disability but also having some educational needs related to the autistic-like behaviors found in some kids and their special issues with language and math. I think there is some material on this site about those special issues. Print out information on What Is for any of your son's conditions and don't proceed with any meeting until everyone involved has read it. Helps so much when they know his energy level will be variable and idiosyncrasies like that. I am not sure if there is a model IEP for Beckers/Duchenne.
(http://www.parentprojectmd.org/site/PageServer?pagename=caring_educ... ) Sorry, I keep answering my own questions!!! The Jettfoundation and mdausa sites also seem to have some information.

Keep a notebook of all your notes from the IEP meetings and copies of his IEPs, I try to communicate by email if I can. It gives you the time, date and details of what "was said," which can be very helpful.

Good luck,
Ginny

Jasna from aus, would like some advise my 4 year old with DMD in the process of enrolling him to a private catholic school and only have been diagnosed not sure if l should mention to the school of his disease. feel that if l do he may not be accepted.

Hi Michael, I personally would mention it because you will need support, and if they will not accept him now than maybe it is not the right school. Good luck!

Michael Baric said:

Jasna from aus, would like some advise my 4 year old with DMD in the process of enrolling him to a private catholic school and only have been diagnosed not sure if l should mention to the school of his disease. feel that if l do he may not be accepted.

Hi Karen,

I live in South Florida, my son is 14 (almost 15) and I will be able to help you with IEP advice here.

Please contact me when you move here.

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