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Hi both my children have diagnoses of pandas/lyme I have a medical diagnoses note for the school and have tried explaining the situation, sending links for the principal to read. She seems close minded and unless sees an outside evident illness such as cancer she is clueless. My children are always late for school, can not get there on time and it appears as if she believes its a behavioral/parental issue. Has mentioned therapy more than once and says if I dont agree that its whats needed how can the school and home be on same page. They dont know how to help. She dosent seehow she can put lateness into a 504 plan. My diagnoses letter says to excuse latemess on it. So does anyone have a 504 for lyme and whats included in it. Who can i contact above this close minded individual. i have also asked for speech for my son since kindergarten, he will be in 2nd grade next year and nothing was done. any help greatly appreciated!

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Tamistwing-

 

So sorry you are having a hard time. I have to admit, our schools have been extremely supportive, so I don't have first hand experience with difficult administrators, but this is what I do:

 

First, both of my girls see a neurologist (for pandas) and a psychologists (to help deal with pandas symptoms). So, I urge you to consider some therapy with a psychologist. For us, it didn't need to be long term, but it was very helpful in coming up with strategies for myself and the school (if needed). I march into school prior to the start of the year with a simple letter of diagnosis from the neurologist, and a more detailed letter of symptoms/accomodations from the psychologist. I act confident, knowledgeable, in control, and matter of fact- this is my kid's illness- this is what is going to happen- in a nice way.

 

My kids both have gone through 2 years without a 504, although I do plan on getting one in place by next year for both- it is just a good idea. Most accomodations we have needed are absences, lates, checking in on them throughout the day, and some other minor things. This can usually be handled with open communication with the teacher, and letters to the office. I have been blessed with wonderful teachers.

 

I do think a letter from a psych would quiet any questions down- I can't imagine the school questioning requests in writing from a medical prof.

 

Stay firm, give the principal Saving Sammy to read :)

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Wow, this sounds exactly like our former principal (she's still there, but we left the school). We had a terrible time last year trying to explain PANDAS and simply get them to meet with us to discuss a 504 Plan. The school seemed extremely skeptical and kept telling us that their kids with cancer were eager to come to school and have great attitudes despite their terrible illness. I don't have a lot of advice on how to get through to her - we weren't successful. Our principal, after about 4 months of stalling, brought in the assistant superintendant to oversee our request and they never explained why. They finally met with us in May, but by then my son had stopped going to school, mostly I think because their attitude toward him was scaring him (his teacher called him a cry baby at one point, in front of some classmates). They had to send their psychology intern to observe him at home, instead of in the classroom, and he cowered in his closet the entire time she was here. Our psychiatrist wrote two letters, one explaining PANDAS in detail and one laying out specific accomodations. She also spoke with the assistant superintendant, on our dime. But at the 504 meeting, they explained in a long document that their was no evidence that he had "severe anxiety due to PANDAS" and so they could not give him a 504 Plan.

 

At the beginning of this year we moved him to a small Christian school where he is getting any and all accomodations they can provide and most of all, an understanding, patient and nurturing environment. They do things like giving him a Pokemon card if he's on time to school (I buy them). They let us sit in the child care room if he's too anxious to go up to class, that way he's on the school grounds and has a higher likelihood of getting into class on that day, and he's not sitting at home where he's more comfortable reinforcing a bad habit. They alert me if there's a case of strep at the school. The teacher is in email contact with us when he's having a hard time getting in, and will bring or send his class work downstairs to us so he can stay caught up. He's also allowed to go to the bathroom as often as he wants and she's just generally aware that his illness can cause "bad" behavior such as being late, talkativeness, inattentiveness, saying inappropriate things, etc. So while she does give him consequences, its done in a compassionate way.

 

Also, we engaged a lawyer after the meeting last spring and may end up being reimbursed for the private school tuition. In some ways, I wish we'd gotten advice from the lawyer much earlier in the process. By chance, we found a lawyer who's son has PANDAS (he's 19 now), so she understands the issues with the schools from a parents perspective.

 

Good luck with this. I know how frustrating it can be, on top of everything else you're dealing with.

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