posted
My daughter is 6 years old and is in first grade. She was diagnosed 3 years ago with LD.
Her kindergarten year was not so bad, but she is having more symptoms as well as myself(I have LD also).
The school is giving me a hard time about attendence and some of the teachers and school nurse are not being very helpful, even down right mean about things.
Kind of the attitude of "well she looks OK and she's OK one minute and then not the next" so they are not believing us I guess.
Anyone have any suggestions on how to handle this situation? I have an appointment to initiate a 504 plan for her, but am going to run
into all kinds of trouble with the school nurse I can tell already. Any suggestions on strategies/articles I could take to the meeting with me next week?
She has done everything in her power to make things difficult for us. I am soooooo frustrated.
posted
is she seeing an llmd? My daughter has missed a TON of school. For many years. She is in 6th grade now and we started this battle in 2nd grade.
We take her to Dr. J in Conn. and he feels that they need to stay home if they are battling lyme. It is counter productive to send a sick child to school only to probably struggle and do poorly. He will write a letter and even speek to the school if necessary.
I lucked out that my school is EXTREMELY understanding of the situation and her teacher this year even had lyme herself.
THe school hired a tutor to come to our house 2 days a week to keep her up on her studies.
Is it possible that your doctor can do something similar for you?
I understand the whole "some days she is fine and some days she isnt." You just never know literally hour to hour how they are going to feel. And yes a lot of the time my duaghter looks well when she is feeling terrible.
go to this link and read what Dr. J. has to say about the children of lyme. Maybe print out his info and give it to the school.
I am so sorry to hear about your daughter's struggles at school. It is an age old battle. My daughter is 15 and diagnosed a year ago, but has been ill since age 4. She has always attended an hour of school maybe two at best, often is totally homebound. We had her on a 504 plan for 1-3rd grades and then got her an IEP which she still has in 10th grade. She has always gone to school for what she could manage (not much) and relied on home tutors to do the real teaching. You really do need to help the school see that this is an illness that is an invisable disability. They aren't going to be able to "see" it. Usually a good letter from your doctor saying what the illness is and what the school needs to do will go a long way to getting what you need. Our doctor always encouraged us to have my daughter maintain as much time in school as she could due to the socialization. This has been sage advice and truly has helped her to stay connected to her peers. I won't say it is easy, but she has friends and has been able to partake in some of the normal activities she would have missed if she had not been enrolled. I know families who have gone the home school route, and that is fine, I thought of it myself. But if you want to keep her in school for whatever part of the day she can handle, then don't let the school talk you out of that. In Elem school my daughter would go in for social times, like read aloud, or sharing time, or more social lessons. In 3rd-4th grade she only went in for lunch, but NOT in the cafeteria. She ate with several classmates in a quiet room. She truly felt connected doing this, and it made it easier to ease back in to other classes when she was able. This year she is doing 2 classes at school, which is a lot for her. And the tutor does the other 2 and we do independent study for 2.
I have worked with many parents and families of kids with CFS to get the school issues worked out, and rarely are they successful without a battle. It appalls me that they can not just stand behind a 6 year old and do whatever that child needs...
In setting up your plan you need to map out what she needs! My daughter had extended time, no PE, a home tutor 5 hours a week (10 in middle school and High school), a handicapped permit (for when I dropped her off) no attendance requirements, the right to come to school strictly for socializing when that was all she could do, to name a few. Some kids with cognitive issues benifit from educational accomodations more like use of a calculator, class notes given, preferred seating in the front of the room, natural lighting, no perfumes, books on tape, to name few. She also had a pass to go to the nurse whenever she needed to.
I hope this helps. Sorry you are having a problem. I think the doctor's note is crucial to getting the plan in place. The ABCs of Lyme Disease by the LDA is also excellent and has 5-6 articles on lyme and kids to hand out to teachers and administrators. I always found the more information I could share. Though it was under another diagnosis we functioned for a long time, the educational issues are the same.
Good Luck,
Posts: 55 | From USA | Registered: Sep 2005
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lyme_suz
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posted
I think that you should look into getting an IEP for her. Under "other health impaired"
My kids have 504plans, which give accomadations for amount of work and time in which to do it.
Problem we are running into is that we don't have a caseworker or someone who will take responsibility to communicate to team. Kind of falling thru the cracks.
With IEP, goals are made and reviewed so there should be some accountability for her to get the help that the team approves.
posted
we did a special ed 'other health impaired' route for my son. I believe this set-up has more clout than just a 504.
Posts: 758 | From now TX | Registered: Mar 2001
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