posted
I was reading through a few older postings on here about 504 plans and IEP's for children with Lyme.
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?
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
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!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
We have a 504 plan for my Granddaughter. I had to get letters from our LLMD. Then submit it to the school.
I had a meeting with the counselor, Principal, school nurse and her Teacher. She missed 55 days of school last year.
They set it up so if she missed 3 days in a row they would send out a tutor for so many hours for each day missed.
This never happened. Her Dad would just go to the school and pick up her work and we would do it at home. I guess they figured I was a good tutor..........LOL.
Anyway, all I can see that the 504 did was to keep her from having to repeat the same grade over again as she tested at or above grade level and has all A's and B's. It also kept them off my back for her missing so much school.
The maximum days they can miss here is 20 before they say they have to repeat the same grade again. Don't know that they would do that with a child that has good grades though.
She is symptom free now, but when she gets fatigued I get paranoid that she will relapse so I let her sleep.
It was quite easy for us to obtain the 504, however, I have heard others say it was difficult. I think it depends on the school and how they handle it.
Good luck.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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bettyg
Unregistered
posted
amy,
print off the info from the other 2 or 3 posts you were looking at earlier.
to find them quickly; go to FORUM HOME,
click on at bottom of screen ....
LymeNet Flash Recent Visitors: 49
it will show you the last 20 posts looked at , and i noticed someone was looking at them earlier ...now you've told me it's YOU lol
lots of good info there!! hugs/kisses and good luck
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi Amy,
It sounds like you had an informal agreement with the school, but now would like to formalize it, to have better and more reliable services. Is that correct?
Generally, there are two ways to go: a 504 plan, which will provide simple accommodations to work around a child's disability (founded on Section 504 of the civil rights law), and an Individual Education Plan, or IEP, in which the special education department will draw up a plan to provide accommodations and additional services to educate a child with disabilities (founded on the Individuals with Disabilities Education Act [IDEA]).
An IEP costs time and money for a school district, which is why they are not always enthusiastic in providing one. What you will need is a signed letter from your children's doctor describing the disability and suggesting what would be needed for your kids to get an education.
If accommodation is all that is needed (sitting close to the front, a midday nap in the nurse's office, extra time for tests, for example), then a written 504 plan may suffice. If more comprehensive services are needed (tutoring, home study, modified tests, different graduation requirements), then an IEP is warranted.
Big note: school administrators are not doctors. They cannot tell you your child does not have Lyme. If I were you (and I have been), I would not focus on "proving" that your children have Lyme, and only assert that your children have educational needs as defined by their doctor. The school is bound by law to provide for those needs until the doctor says they are no longer necessary.
Sharon
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
If your child tested gifted, then is he classified as such?
I ask because if he is already under the "Special Ed" umbrella,
It is a lot easier to get accomodations made for him.
Such as home schooling.
If he tested gifted you should pursue this classification.
Makes everything a little easier.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Shosty
Unregistered
posted
We got everything we needed through a 504 plan. It was easy and flexible. Our team was the principal, dean, nurse, me and our daughter.
I wrote it myself (one year with the help of a lawyer, which cost $150 for that one appointment). The American Diabetes Association has a good sample 504. There is no set form. Start with name, grade, date of birth, school, and reason for 504, with date of diagnosis and names of MD's. The value of writing it yourself is that they do tend to sign it, and then they are committed. If they write it, the plan may be more limiting.
The Office of Civil Rights at the Federal Dept, of Education is very helpful, and I also called them all the time. They will back you up, and even come to the school to raise consciousness a little.
MD notes are needed simply to document the disability.
We opted not to have a tutor, partly because we expected the problems you had, and also because we could not predict whether the tutor would arrive at a good time health-wise in the day, or not.
This is what worked for us, and your children sound capable, so it may work for you (it was suggested by the lawyer when the school could not figure out what to do, and offered as a helpfullegal suggestion, with a smile):
Make a sheet that says "Daily Work for (your child's name)
Have headings such as:
"What was done in class today? (Please attach any worksheets, reading materials, and homework papers)"
"What is the homework assignment?"
"Were there any tests or quizzes today?" (Please attach)
"Are there any grades missing in your gradebook?"
The last one helps you and your children keep track of things. Teachers can be disorganized and cannot always keep track of what your child has done or not done. This avoids that problem.
Our school had ALL our child's teachers fill this out EVERY DAY, even if she was there. This is because the teachers would forget to notice if she was there or not, and the principal felt it was just better to do it all the time.
Also, this enabled her to go in and out of school/class at will, even within the school day. So she might go up for 2 classes, come home and rest, then go up for one more.
Also, we made sure she could participate in extracurriculars like music concerts and drama, even if she was not in school. The principal agreed that this was important for emotional development, and made an exception to the policy of required attendance for this participation, and it was in the plan.
We wrote that our child could miss class, be late to class, leave a class early or for a break; she had extensions if needed to finish work (she rarely used this); she could take test, quizzes and exams at home if needed; she had a scribe when her hand did not work; she got notes on class lectures from other students but this was organized by the teachers. Other things too.
Make sure you have a high school child apply for accommodations with College Board tests, and start early with this. Someone from the school should do this for you.
Our daughter excelled despite her illness, and is now happy at a top Ivy League school. She still has some health problems, and we are working with the disabilities office there too.
Our daughter does not like accommodations and would, of course, prefer to be "normal." But she has learned to pace herself after having such high standards for years. However, if a professor gives her a week extension on a paper, she will get it in in 2 days. It helps a lot with credibility. Noone has ever doubted that she needed whatever accommodation she got, because she so clearly does not want any!
One other thing: schools can have a lot of flexibility with middle schoolers. At one point our daughter was out for awhile with horrific cognitive problems, and when the class was studying China, we went to the library and looked at pictures!
High school brings higher stakes, and more requirements on the school to maintain standards.
Oh- and I have Lyme too, as does another child who did not need accommodations at all.
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posted
Thanks everyone! I am working on a list of what accomidations they will need. Everyones ideas are very helpful!
Geneal, yes he is labeled as gifted in the schools. 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.
Thanks!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Wow.
What type of accomodations are you looking for?
I would think that with a diagnosis of Asperger's,
The school would also rush to accomodate you.
They don't do 504 down here anymore persay.
It is now called a SAT meeting.
I sat through two about my youngest who was struggling last year.
He has congenital Lyme.
Good news, being I started as a ST in the Public School System,
I knew what the law says the school has to provide for my child.
I went in. I had written down my son's strengths and weaknesses.
Questions I wanted to ask and have addressed.
Request for an OT screening and suggestions from this person.
Peer counseling if available and more.
I basically started the meeting, carried the meeting and ended the meeting.
I am sure they are hoping to not see me again this year.
Mind you I love the school, teachers and principal.
I voluntarily opened car doors every morning, rain, shine or snow (1 day)
Until I went back to work in May full time.
However, they didn't expect me to know my rights as a parent,
Nor my child's rights under PL 94-142.
I am not sure who was more relieved that he progressed well
And passed kindergarten. Them or me.
Hugs,
Geneal Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Amy, one of the accomodations we needed in HS was "a variance from the HS attendance policy."
In our district, only 14 excused abscenses are allowed.
Check with your school district about their attendance policy. May save you from major headaches later.
Also with some districts, a child needs to be out 5 consecutive days before a tutor is set up and sent out. We had in writing that after 3 days out with knowledge that she would be out longer a tutor would be sent.
email is invaluable with teachers at the mddle and hs levels.
i attach information about lyme and how it impacts learning to the 504s, and teachers have to read and sign off on it.
i had a lyme awareness teacher in service for the school
teachers thanked us (many have lyme themselves)
So far we have used 504's for all 3 children.
Since we had the 504 in place in HS, our now college age daughter was able to get assistance with her school's "Students Accessability Service" which is helping with certain modifications at the college level.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Shosty
Unregistered
posted
Forgot to mention that the school nurse collects those sheet (with classwork, homework, tests etc.) at the end of the day. She, or, if needed, the principal, enforces compliance.
I strongly recommend AGAINST working with teachers directly, for parents. Over time, this can cause a lot of interpersonal stress, since parents can end up making demands that the teachers resent. Much better for the whole policy to be enacted by the principal, nurse, and other school personnel.
If problems arise, there should be a central person to work it out with, usually the principal, with the nurse also involved.
We always had a meeting at the beginning of school with teachers and the team, and provided written educational info(our daughter has several other health problems besides Lyme, one of them potentially life-threatening during the school day).
We preferred to maximize attendance, meaning, even if our child could only go one hour, she did that. But there were times when this was not possible. Nevertheless, since she closely followed the curriculum and assignments each day, with the use of those sheets filled out by teachers, the school treated her as if she was continuously enrolled, but just doing her work at home.
This made for a seamless in and out movement, and made it easy to return full-time when she could, without drama or unease.
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