I am sure this has been discussed before and I am sorry that I could not look over discussions enough to find an answer. After we returned from seeing Dr. Wong in November, I let the teacher know we needed an IEP. We are still waiting. But I did find out today the Jared will be assessed and that assessment from the school personnel (not sure their title yet), will have major bearing on what the IEP will say. Needless to say, I think that is ridiculous, and I am concerned that we will not get the proper IEP set up for his adaptive PE as he can do so much even though he shouldn't. His teacher is great and she helped advise me that goals are generally set up for each IEP and she was really only familiar with Academic IEP. But she agreed in Jared's case, it is backwards because we are not really trying to help him achieve anything but are trying to prevent further damage to his body. I would really appreciate advice on how to be better prepared for this meeting so we can do this right and based on the knowledge I have gained from the Dr's, PT's and from all of you on this website. Thank you

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Kari,
talk to Jill Castle and call me! 985-713-1634. I did Riley's IEP at the end of last year and we just had an update meeting before the Christmas break. I can fill you in about what I did, 'cause you know me and I MADE the system work for us! LOL!

The assessment is probably being done by the Educational Diagnostician (spelling?), the School Psychologist, and someone else, possibly the PT. They will all have input into whether or not he qualifies for services. We had the argument too about Riley not having specific educational goals, just maintaining muscle funtion, but we worked it out. Remember that even though they are the 'experts' and will determine his eligibility, YOU...let me repeat, YOU have the MOST say so about what Jared needs. Also, look to see if there is an advocacy group in your area that will assist you with the IEP. They will typically sit and explain it all to you and go with you to meetings to ensure everything that needs to be done is happening!


I am the one that sat with the APE teacher, the PE teacher, and the PT and as a team the three of us determined what was best for him at school. I REALLY got them on my side and ever since then it has been smooth sailing. Riley does not have any learning disabilities, so his IEP is solely physical (and we included social interaction since he struggles with that).
Call me! I'll tell you what all I did and I hope it helps you!!!
Rhi
Kari,
It is a scary process, but remember that you are in charge. You are not required to sign off on it until you are satisfied with what is written. If the group is unfamiliar with DMD, you may have to do some education. Be prepared and bring literature. An IEP is a binding contract with the school. They have to honor it. You have the right to call for changes, evaluations or team meetings at any time if you feel the IEP needs modification. It is an ever changing document and you will revise it many, many times as your boy gets older.
I agree with what was written above that you want to make sure that the goals for APE and PT are to maintain flexibility and range of motion.
Also be prepare to add in seeing the school psychologist periodically. As changes begin to occur, your boy will have a couple of what we refer to as "Oh Shit Moments" where they realize the changes and what may be coming. It is good to have it already set up in the IEP.
Keep in mind that the school is a business. They have a budget and desperately try to save money. They tend to fight new costs. Our boys get expensive for them over time. You will need to push back to ensure you get what you need. Never take no for an answer!
Find someone within your district who has gone through this before, or preferably an advocate or administrator you can trust. They will help you with the methods and the vocabulary. Schools tend to have their own language with special ed., and if you can learn their phrases, it makes a huge difference.
We had a teacher once who was horrible with our oldest. We tried to make a change, but found it was difficult to complain about someone with tenure. Then used the term "not a good fit" with the district and suddenly it was all changed. go figure...
Send me a note if you want more assistance. My oldest is graduating this year, so I have been through it all.
Ed
Hi Kari,
First the federal law states that at any time a parent can call for an IEP meeting and/or assessment. I am going to be generous and say that due to Thanksgiving and Christmas breaks, that is why you are still waiting. Having said that, you need to call the person over elementary Special Ed at your school district and ask for a definitive date for the assessment. AND, I would assume that should be within the next couple of weeks. (I am a special ed teacher, so while every school district and state is different, the law is the same). i would be really surprised if Jared is not assessed delayed in his physical assessment.
Before recommending anythign for the IEP..how old is Jared, does he have behavioral issues or cognitive issues, etc....
I would be happy to share my son's IEP if you like....
Lori
I am going to jump into this as I've been really struggling with almost exactly the same thing but on the academic side. My son is in 1st grade and he's had a 504 plan up to now to accomodate his physical needs but last year, we noticed he was struggling while learning to read and some other basic skills and this year, it is very apparent that he has some difficulty. I truly believe that it is a question of how he learns versus what he knows and in my ignorance, I thought these tests might give me some insight on this but really, they just give a pretty black and white assessment of where he is in each area and as we already knew, they showed he had difficulty with phonetic processing (among other things). We have not yet had the IEP meeting where we put the plan in place but I'm really struggling to know what it is he needs and while my school is wonderful about giving us what we need-- I'm not at all confident that they will know what he needs either. I've read everything I can get my hands on about this and the one thing I know is that this is a critical time for him to get some help in this area and if we miss this window, he will struggle all the more down the line. I feel almost desperate for information but really don't know where to get it--If anyone can point me in the right direction, I would be very very grateful.
Kari, forgive me for jumping onto your request without offering any advice, I can tell you that Lucas has been under a 504 plan (which I thought kids with only physical limitations and no educational ones had--I thought the IEP was specific for educational issues?) and our PT set it up that one of her scheduled times with Lucas was during PE class and she has worked with the PE teacher to modify any activities that were planned, really, for the most part, for the whole class so that Lucas doesn't feel different. In cases where they were doing things he shouldn't be doing, she would either modify the activity for him or that was when she took him to do stretching, etc. It has really worked out well and actually next week, Lucas and the PE teacher are going to "teach" the class about stretching! Lucas is psyched. You need a PE who gets it though for this to work!
Linda
See if your local MDA office would have someone come to the meeting with you. I found that having them there helped. It wasnt' just mom saying he needed this. MDA also has come to my sons school every fall and talked with the staff about DMD. We found that neccessary after a teacher said something stupid to my son when he was in 2nd grade about goofing off , not walking fast enough down the hall. The priniciple at our school has asked them to come back every year to educate the staff. For the IEP they can qualify under " other health issues" if they don't have any academic problems.
Hi All,
First of all, I would like to thank you all so much for your ideas and offers of help. I am going to need it. Here again someone thinks I'm crazy; the APE (Adaptive Physcial Education) Assessor Josh had his little meeting with Jared last week and had him do a bunch of physical activities. I was not allowed to be there and not told when it would be. Jared just told me over the weekend this occured. So, I mentioned to his teacher about it as she has been very supportive, but Josh apparently asked her why he was even seeing Jared because Jared of course could do everything he wanted. Apparently, he has no concept of what MD boys need which clearly from our discussion is maintaining flexibility and keeping him ambulatory for as long as possible by not overdoing. So, I just left a message for Josh to discuss this with him, I emailed the MDA Health Coordinator to consider being there in the IEP meeting with us, and now I am wondering if I can see some of your IEP goals etc. so I can better educate myself on this process and the next step which is getting this IEP done correctly. I am not surprised. People look at Jared all the time and see nothing wrong and thankfully he is still doing so physically well, but I want to keep him that way as long as possible. Thank you all for any help you can give me.
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.
I don't really feel that there is an alternative. He is an only child and he loves his friends at school. I need to work but I work at home so perhaps one day I can home school him. I will have to consider, but as of yet we just don't have an alternative. Private school here is too expensive. Thank you for your reply.


Jerry Dallapè said:
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
Attachments:
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
Joshua is only in kindergarten but before he started, the principal, resource worker, and the teacher came to our house and had a meeting of what to expect from him and what he is able to do in the school. Since then, we have had three meetings at the school. At one of them though, our CFS, CSS, SMD, principal, resource worker, myself and his dad were there as well. Every time something comes up whether it's medical or behaviour, we send notes to the school so they have it on record and they do the same. The lines of communication stay open on both ends so everyone is aware of everything that goes on.
Open contact between yourself and the school can make a huge difference. If you are involved in any organization for funding or disability, get them involved as well. The more people on your side and can 'speak the language' the better and the more support you will have.

Naomi
Kari said:
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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