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How do I get a 504 plan or appropriate helpffor my son?

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I would like to have an official legal plan in place for my son who is starting 1st grade end of august. I havent a clue where to start. I looked at the massachusetts website and honestly its waaaaaaaay too confusing. It might as well be in french. What do I do?


Some things I would like


Extra bathroom breaks as needed


Ability to visit the nurse as needed


I would like to send a letter home with classmates to notify the teacher who will notify me of any confirmed strep




any other ideas??


how do I go about this?

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I would contact the special education department of your school and request getting him tested. My son is on an IEP (his OCD drives him nuts enough that he has trouble focusing). They tested him and he has been on the IEP for 3 years. He will be up for testing again next spring. At that point they will need a diagnosis of some sort to keep him on. He tests average in everything, but up until now they use the term "developmentally delayed" to have him on the IEP. After 3rd grade I guess there needs to be a formal diagnosis of some sort. So we got a letter from Dr. B of the PANDAS diagnosis and from our neurologist with an OCD diagnosis. That is all they will need. His accommodations are more academic, however. But either way, IEP or 504, I believe you have to contact the special ed department and request testing. I don't have much experience with 504s though....



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While I know that each state . . . even each school district . . . will have some differences with respect to their 504 Plans, I think the basics all still stand. How you proceed may depend, to some extent, on the receptiveness and procedural "bureacracy" of your local district. With ours, because the 504 Plan does not entail any additional expenses to the school in terms of services, they were relatively informal about it at the elementary school level. As our DS got older, the 504 got a little more complex, so there was some increasing formality about the process, but early on, it was considerably more light-handed because the school was fully on-board.


In your case, because your DS is just entering school, chances are you'll have some "proving" to do in terms of your son's verified need for the accommodations. So I would 1) contact your district about beginning the process and inquire as to how they typically proceed, 2) get your "professionals" lined up, gathering letters from your ped, your psych or therapist, etc. attesting to your son's needs for the accommodations due to his condition, identify and briefly define the condition (I'm assuming PANDAS/PANs), and 3) put together your own little packet with some of the key PANDAS documentation, including some of the "in the school setting" pieces that have shown up here on the forum and probably other venues, as well.


As for the accommodations you're thinking of requesting, they look good and pretty typical so far as I can recall my DS at that age; if his small motor skills are impacted by exacerbation, you might want to add something like extra time for written/drawing tasks, scissor-cutting, etc. And in terms of notification regarding strep in the classroom, at the elementary school level, the school typically informs all families when a case of strep is found in the class via a letter home with your child.


Good luck!

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Luckily my son is above grade level in everything despite missing 35 days in kindergarten. I had some unofficial agreements with his teacher about letting me know about strep, and extra bathroom breaks etc.


Maybe I should try this route again and if it works so be it and if it doesnt I can go ahead and get a legal plan.


he is dx with PANDAS, Lyme OCD ADHD, anxiety, insomnia


He was half day last year and this year its full day. I am afraid this is going to be too much.



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I would encourage you to go ahead and push for the 504. I did the same as you and had unofficial agreements to accommodations with my DS teacher last year in Kindergarten. He goes to a Charter School, which must abide by public school rules. Near the end of the school year I told his teacher that I would like an official 504 so that we could make all her her great accommodations "legal" because he would have a different teacher and no one can guarantee staying in the same school. She contacted the ESE coordinator and we met and made it happen. There does not have to be any testing, but team members (ESE coordintor, school psychologist etc) may want to observe your DS). I was told that I needed a medical diagnosis on doctor letterhead, which I had- Dr. M dx my DS with OCD (pandas related), transient tic disorder (pandas related) PDDNOS and ADHD. More than enough, lol! You just need to show that your child needs accommodations or a major school life activity (in our case, learning) will be impeded. Your child does not have to be failing, in fact my DS is great in academics. But his learning will be impaired if accommodations are not made. Does that make sense? PM me if you want more info. I will be more than happy to send you a copy of his 504.


Edited to add list of accommodations:


Seated next to a positive role model

Cue student to stay on task

Check comprehension of directions before beginning task

Write assignments on the board, check for them in planner

Reduce homework as needed

Extra time for assignments and tests as needed

Provide a wide variety of lesson presentations

Arrange for breaks between assignments and as needed with a safe space or person

Bathroom breaks as needed

Teacher to explain sensitive topics that may induce OCD behaviors 1:1 after lesson (DS obsesses over topics like Stranger Danger (he is scared of being abducted) or like if you eat too many calories you will be "fat" (he is way too skinny already!)

Notify parent of strep or other serious illness in the classroom

Individualized Behavior Support Plan

Edited by MomtoJake

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