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Oh, Kari. Is there any other alternative for you other than this school? Public schools are a nightmare anymore, and doubly so for our boys. We took Ewan out of school at the end of September and started homeschooling him. He has already completed all of the work for second grade and is starting third grade work. I know homeschooling isn't right for everyone, but it seems like Jared would be better served in just about any other environment than in that school district. Don't be afraid to look for alternative answers to your questions. I do hope it all works out for you.
Kari and others,
I am a special education advocate and consultant who also has a son in 4th grade with Duchenne. First I want to say that if you would like me to help you, please send me an email at kmajmiller@hotmail.com. I will attach my card that also has a phone number you can call if you would like assistance (free for Duchenne families!).
Generally speaking, you want an IEP, even if your child either doesn't have or is not yet demonstrating other cognitive, behavioral, or social difficulties. If you get a 504, that is only protecting your child from discrimination or lack of access due to his disability. It does not guarantee an individualize plan for him or any specific services, such as adapted PE. The school may give you APE and provide services under good faith, but they are not required to do so under a 504. They don't even have to put it in writing if they don't want to. Getting an IEP now will enable you to add services as your child needs without too much fuss and/or delay in time.
Now, Kari, did the school provide you with a written plan for evaluation/assessment? They have to obtain your written consent before beginning any assessments. If they have not, then, I would put your request for evaluation in writing and submit it to the special education director of your district and/or the principal of the school. The school has 60 days from your written consent to complete the evaluation and present the results to you. Once you have the results, the school will convene an eligibility meeting (with you present) to discuss the results and either accept or deny services based on the results. In your case, they can not deny services because your child already qualifies under "orthopedic impairment". However, I will advise that sense your son is young, you ask for every test possible to be done so that you have a baseline of information. It is known that Duchenne can cause some cognitive impairments that don't really have to do with intelligence, but rather focus/attention, verbal processing, and social skills. Having data on all areas will help to build the foundation of an individualized plan that grows with your son through the years. If you do not agree with the school on the test results, you can also request an independent evaluation from an outside neuropyschologist of your choice at the school's expense. Anyway, even if there are no other issues now, you can still get an individualized plan for your son that addresses his physical needs, such as:
Adapted PE
Physical Therapy
Occupational Therapy
Technology that relieve fatigue of writing, such as a laptop
Typing/writing software
Seating modifications for spinal support
Access to a motorized scooter, if there is a big campus
Transportion services
Textbooks and assignments that go home on disk to help relieve fatigue
An aide to help on field trips and/or in the classroom/school (can also be used for attentional issues as well)
Oral dictation instead of writing
Those are just a few services/modifications that can be addressed in the IEP. There are many more that address the common cognitive/behavioral implications of DMD. Please contact me if you would like any further help, I would be glad to provide any assistance. Regarding pulling your children out of public school, that is always an option, but then you will fight even harder to recieve the type of assistance you can receive in the public school system. Our children can be successful in the public school, it's just a matter of how much time/energy you are willing to put into advocating and educating. Just my two cents!
Kelli
Wow, Kelli, Thank you. Your information you have provided me is astounding. I did sign the assessment. But I just signed. I did not really understand what that was all about and that is how Jared was evaluated by the APE last week. Anway, I will review and get in touch with you as you suggested . Thank you.
Kelli Miller said:Kari and others,
I am a special education advocate and consultant who also has a son in 4th grade with Duchenne. First I want to say that if you would like me to help you, please send me an email at kmajmiller@hotmail.com. I will attach my card that also has a phone number you can call if you would like assistance (free for Duchenne families!).
Generally speaking, you want an IEP, even if your child either doesn't have or is not yet demonstrating other cognitive, behavioral, or social difficulties. If you get a 504, that is only protecting your child from discrimination or lack of access due to his disability. It does not guarantee an individualize plan for him or any specific services, such as adapted PE. The school may give you APE and provide services under good faith, but they are not required to do so under a 504. They don't even have to put it in writing if they don't want to. Getting an IEP now will enable you to add services as your child needs without too much fuss and/or delay in time.
Now, Kari, did the school provide you with a written plan for evaluation/assessment? They have to obtain your written consent before beginning any assessments. If they have not, then, I would put your request for evaluation in writing and submit it to the special education director of your district and/or the principal of the school. The school has 60 days from your written consent to complete the evaluation and present the results to you. Once you have the results, the school will convene an eligibility meeting (with you present) to discuss the results and either accept or deny services based on the results. In your case, they can not deny services because your child already qualifies under "orthopedic impairment". However, I will advise that sense your son is young, you ask for every test possible to be done so that you have a baseline of information. It is known that Duchenne can cause some cognitive impairments that don't really have to do with intelligence, but rather focus/attention, verbal processing, and social skills. Having data on all areas will help to build the foundation of an individualized plan that grows with your son through the years. If you do not agree with the school on the test results, you can also request an independent evaluation from an outside neuropyschologist of your choice at the school's expense. Anyway, even if there are no other issues now, you can still get an individualized plan for your son that addresses his physical needs, such as:
Adapted PE
Physical Therapy
Occupational Therapy
Technology that relieve fatigue of writing, such as a laptop
Typing/writing software
Seating modifications for spinal support
Access to a motorized scooter, if there is a big campus
Transportion services
Textbooks and assignments that go home on disk to help relieve fatigue
An aide to help on field trips and/or in the classroom/school (can also be used for attentional issues as well)
Oral dictation instead of writing
Those are just a few services/modifications that can be addressed in the IEP. There are many more that address the common cognitive/behavioral implications of DMD. Please contact me if you would like any further help, I would be glad to provide any assistance. Regarding pulling your children out of public school, that is always an option, but then you will fight even harder to recieve the type of assistance you can receive in the public school system. Our children can be successful in the public school, it's just a matter of how much time/energy you are willing to put into advocating and educating. Just my two cents!
Kelli
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