504 plans...need help!!

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Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/26/2009 12:03 AM (GMT -7)   

Both my boys have Lyme. One is about to start middle school and the other high school. My younger one has more health issues then the older one. He was out with a tutor the end of last year.

She only came a few hours a week. I didn't feel he had enough work to keep him busy. He is very smart and actually tested gifted. Really not sure that he learned much at all during that time! So I don't know that we want to go that route this year? Plus I want them to get the opportunities like band, art and extra things that they miss while home.

I just don't know how he will be able to make it every day all day? Fatigue, insomnia, urinary urgency, vertigo, focus, concentration and memory problems to name a few.

So I am very very worried about all this already even though it's weeks away. I can't stop thinking of how much I dread it shakehead

I was thinking of requesting a 504 plan for both of them. I just don't know where to start and what to ask for?

I have Lyme myself and my cognitive issues are bad or I would just home school and save myself the worry.

Any advice at all would be appreciated!! Thanks!


--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/26/2009 12:20 AM (GMT -7)   
Hi Amy,

My daughter has ADHD and she was on the 504 plan while she attended school. I think you should ask that your boys be put on it. You can talk to the school about it. It's not hard at all. You have to fill out some forms and get their diagnosis from their doctor. Do it as soon as possible so that they can get the extra attention that they need. They get a longer length of time to take tests and have one on one with their teachers. There are more extras that I cannot think of right now since my daughter graduated two years ago.

You will also want to get a signed document from your sons doctor regarding the bladder issue. That way he will be allowed to leave class whenever he needs too.

I hope this helps you:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/26/2009 8:56 AM (GMT -7)   
I have 504's for both of my kids.
It has been a big help- if for no other reason, that when my son (is sicker than DD) has issues in Middle School-- I can always refer the teachers back to his 504.

I would never ever be able to home school and I am a certified teacher. My brain just doesn't work so good anymore, esp. in the planning and organizing sector :)

I posted here for help, so if you search through, you might be able to find my thread-- prob April 2008.... I'll also look for it and link it

I was able to have a meeting with the kids' principal, teachers, school nurse and a couple of other teachers who are part of the child study team.
I had a list of things I wanted included, such as extra time for tests, a HW buddy, allowed to lay down at nurse's office if fatigue, gym was allowed to be approached at their own level of comfort.

I was able to add some things to it as needed.

I can't think of anything else ATM, but I would definitely have them in place.
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


Pomfrey
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 7/26/2009 9:59 AM (GMT -7)   
Hi Amy - All kids are entitled to what the schools refer to as a Free and Appropriate Public Education under the law.  This could mean anything from extended test taking time to receiving home bound school services.  The thing to remember is that the school system is not going to advocate for getting the kids what they need.  It is up to you to ask for what you think they need and provide the documentation that supports your request.  I apologize if I sound cynical, we had to deal with one of the worst systems in the country when we needed a 504 plan for my kid.
 
Here is a website that we used to get a lot of ideas on what accomodations we asked for and how to ask for them in a way that they would be granted to us.  http://www.wrightslaw.com/info/fape.index.htm
 
Feel free to PM me if you want more ideas, I am not exactly an expert but we have gone through it and I would be glad to help you any way that I can.
 
Pomfrey
Pomfrey
 
DX - SLE, Fibromyalgia, Sjorgren's Syndrome, Raynaud's 1994.  Also Allopecia, Rosacea, Depression, GERD, Asthma, Osteopenia, pre-diabetic, Hypothyroid, Leaky gut, and low testosterone since then.  Positive bands for Lyme 2009.


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/26/2009 11:00 AM (GMT -7)   
Thanks everyone! I am working on a list of what accomidations they will need. Everyones ideas are very helpful!

My youngest son is labeled as gifted in the schools. (don't know if this is helpful or not to me?)
I knew he was but when I requested an IEP for Aspergers they ran every test in the book. Then they said, "Did you know your son was gifted?" Umm yeah! LOL

Anyways, they gave me a hard time about an IEP for his Aspergers. I refused to sign the form that said I agreed he didn't need it. I left it at that bc I knew something else was wrong with him. Then I figured out it was Lyme.

I am going to try the 504 route 1st and see how that goes. The end of last year we just went off of a doctors note only and they didn't give me any problems. So I am hopeful!

My older son won't need as many accomidations but he is going into high school so that makes me a bit nervous as to how they will help us.

Maybe I post a draft of my plan and see what everyone thinks?

Thanks!
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/26/2009 11:09 AM (GMT -7)   
Amy,

My daughter had no problems getting on the 504 plan in high school. As long as your doctor backs you up, you shouldn't have problems. If any problems occur, let the school board know.

Also, make sure you go to the meetings that are set up with their teachers. You willbe able to talk one on one with each teacher and express your concerns.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/26/2009 11:11 AM (GMT -7)   
Good news is that our new LLMD is more then helpful with the schools. His nurse said she would call then directly and that she had some letters she could give me. So that is a relief!
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 8/4/2009 12:03 PM (GMT -7)   
Anyone have a template for this or a sample I can see to help me get started? thanks
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 8/4/2009 12:45 PM (GMT -7)   
Hi Amy,

Try searching the net for parent advocacy groups in your area. I did this and found a couple of groups that offer to help parents with all this stuff. I think they did it free of charge! They may be very helpful to you and may already be familiar with your school systems and what they offer.

It's great that your doctor's office is so accomodating. I hope all goes well for you and your children.

Best wishes, bablymers mom
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