& a round of applause for all of y'all.... ..

[EmersonAilidh]

Today I talked to a teacher about a 504. She's my AP World History teacher & she's the best. She's a breast cancer survivor, so she's incredibly understanding & she's a great listener. I basically asked her how it would look. I haven't sought help from the actual school since the sixth grade when asking for "an alternative testing room" landed me in the special ed room without them so much as warning me. Anyway, she said that she was shocked I didn't already have one & told me that for the most part, at least in our district, teachers are more than accepting of 504s, especially for students so obviously impaired but who still make good grades like me. <3 After that, went & talked to the counselor who said that as soon as I got letters of documentation for P.A.N.D.A.S. &/or Lyme, we could get the ball rolling & have the plan put into effect in anywhere from two weeks to two months. In my district the meeting is just my counselor, all of my teachers, & my principal. All but my principal are fully aware of what's going on, & my principal is a great guy anyway, so I have very very high hopes.

Still need advice for 504 accommodations that have helped all your kids though!! Please get back to me.

 

Last week my Mom & I were sitting in the lab getting my co/secondary infection blood tests drawn & I made a comment about how we've made more headway medically in the past six months than in the past five years. She thanked herself, which I didn't agree with much, & I told her it was because of the forums. If I had never logged on here I'd still be sitting at home, another lonely, confused P.A.N.D.A.S. kids. I'd never have made an appointment with the doctor who ran the Lyme test, I never would have known to pursue Lyme even though the second test was negative, & I never would have had anyone to ask all of my questions to. ######, I wouldn't even know what Lyme WAS! & I sure wouldn't know anything about 504's or anything like that. So, thank you all. We get sad on here a lot, so I thought it was time for an upbeat one. I know y'all have a lot on your plate, but consider me another P.A.N.D.A.S./Lyme/WhateverElse kid under your wing, cos you guys have been awesome Moms to me. <3

[peglem]

Thanks, but, its okay (and probably to your advantage) for your mom to feel good about it, too. She's paying the bills and helping you get to the appointments, so go ahead and share the credit with her! And honestly, parenting a PANDAS kid isn't the easiest thing in the world, so kuddos to your mom too! A long, long time ago, I was the kind of parent who just relied on doctors to figure things out and tell me what to do... so, cut that woman some slack!

[chodnett]

You are an amazing girl. I cannot believe all the self advocating you have done and you are only 15. I have a fifteen year old son who does not even understand what is going on with his sister. You are going to do something Great in your life!

[SarahJane]

I agree that you are going to do something GREAT in your life. And in some ways, you're already doing it. You make terrific contributions to the forum here for sure. To be so self-aware at your age is rare & to be able to be so motivated to get well when it's likely that all you wanna do is lie in bed sometimes is awesome. You are an amazing kid!

 

I don't have any 504 advice for you other than to think about what specific issues you have at school & what could help make them better. It sounds like you have some good teachers on your side & that you'll be involved in the creation of the plan. Maybe you could somehow get and extended number of medical absences in there so that's not an issue. I'm sure you'll get some good advice from others on here & even using Google once you have your issues determined may help you define accomodations.

 

GOOD LUCK!

[Worried_Dad]

Congrats, EA! Here are some quick examples you might consider for your 504 (although you know much better than we do what aspects of school are the most painful for you).

 

• Reduced workload (only essential homework required)
  
• More time to finish assignments, tests, quizzes. Possibly allowance to take some tests / quizzes home overnight.
  
• Permission to leave the classroom when necessary by providing agreed-upon "signal" to teacher.
  
• Right to use a calculator on math assignments / tests / quizzes.
  
• "Safe zone" provided somewhere in the school (office, private area, etc.) where you can take refuge from the chaos when/if necessary.
  

 

Those are accommodations we received from our local school for our PANDAS son at various times over the past 3 years. There were many more, especially since he remained primarily homebound during that time. Just some ideas for a starting point. You're the expert on what would be the most helpful for your own situation.

 

Best of luck. Great job pursuing this!!!

[wornoutmom]

Emerson:

 

I echo worrieddad that you yourself know best what you need. Ds has all of the above accomodations plus a few more. Here are a few additional things in our son's IEP that may or may not be helpful to you.

 

- Tardy policy waived for 1st hour (since mornings are the hardest - it reduces the pressure)

- unlimited pass to counseling office and unlimited bathroom breaks

- word banks & formulas for tests/quizzes to aid recall (in case of brain fog or test anxiety freezing)

- alternate setting for tests/quizzes if he wants

- 2nd set of notes provided if he requests (definitely would ask for this if you are falling asleep in class still and missing things)

-preferential seating

-extended deadlines when/if home meltdown occurs (cause you just can't always predict when a meltdown is going to shut your brain down..)

- large projects/assignments broken down and assessed in smaller sections (as to help him feel less overwhelmed)

 

Also, I don't know how much anxiety plays into your school experience, as you most often talk about your physical symptoms. But if it is an issue, there are some suggestions on worrywisekids.com that make great sense. They are written for younger kids but can be applied to the high school level. Best idea is to write down a list of everything you might want and can possibly think of before you go into the meeting, and make sure your parents are on board with the ideas as well. Then figure out which ones on the list are most important to you, in case you get any push back from the school, you can stand your ground on those items. Also might not be a bad idea to write a letter explaining how PANDAS/lyme currently effects you in the school setting and at home. In my personal experience, the school won't be offering up ideas, but will give you what you want if you back it up with a reason. Best of luck with this. You are inspiring in your self-advocacy!!!

[kferricks]

Everytime I read your posts, I sit here in awe of you. You are truly an inspiration and I have no doubt that you are heading towards a great future. Do you keep a journal? Maybe someday you can write a book about your struggles as an actual Pandas teen.

[lynn2]

DS who is a freshman this year has the following

 

Extra time on any test where he needs it.

Unlimited bathroom breaks with no questions asked

No penalty for bad handwriting/ability to use a computer on exams and homework.

 

He is in a specialized high school where they don't get a lot of 504s but really, it makes a big difference and I don't see any stigma. The guidance counselor goes around and tells everyone what the problems are and what they are required to do about it. DS doesn't have to explain anything. I highly recommend it.

 

Good luck Emerson!

[Mary M]

I can't offer any practical help with the 504 Emerson but I'd like to congratulate you on, yet again, taking initiative and advocating for yourself. You are moving mountains, not just for yourself but for all who will follow. Thank you!

Mary

from Michigan