Setting up an Education Plan for child with CFIDS/FM

Discussion in 'Fibromyalgia Main Forum' started by connieaag, Mar 8, 2006.

  1. connieaag

    connieaag New Member

    My daughter is 13 and diagnosed with CFIDS/FM 1-1/2 years ago. She is in 7th grade and currently attends 1/2 day. Last year she missed 63 days and went from 10-2 on the others. The school wants to develop a Plan and I do too before she gets to high school. She is an A student, but when a flare hits, misses 2-3 days, then plays catch-up for the next few days. She really needs flexibility in her school attendance based on her good days and bad days, and I guess this is the only way to do that. I have read various things on other sites, but am intersted in any first hand advice from other parents who have gone through this. I am in the process of compiling medical records, doctor letters, etc. and plan to meet with the school next week. Thanks
  2. NyroFan

    NyroFan New Member

    connieaag:
    If you run into any snafus you can always contact your State Department of Education and also your Senator.
    Reason: Years ago I helped a lady friend with getting her brain tumored son placement at the best program in their state. You may not need their help now, but know they can be reeled in if you hit a snag.
    Good luck and I am so sorry about your daughter. So young, how can she understand. And such a long life to live.
    You sound like a terrific mother. Keep up the good work.
    Hugs,
    NyroFan
  3. hope2001

    hope2001 New Member

    I am a child advocate through our state department of disabilities..
    That is who I, if I were you, would call...they have a full staff of attorneys and advocates who know what the law allows for your child and what she is entitled to.

    She should be getting at home teaching when she can not get to school...and tutoring...a laptop computer with a processing plan like Kurzweil or something similar...and/or a "dragonspeak" program...these help with the word find/organizational and brain fog issues). The laptop would fall into the category of ASSISTIVE TECHNOLOGY.

    she can even receive OT (OCCUPATIONAL THERAPY) (physical therapy) and whatever you may think will accomodate her "needs". I hope she has a separate set of books for home use and books on CD and yes all the text book companies do have these....they will try to say not because they can be a pain to get sometimes...

    Basically the laws about an individual education plan state that whatever is needed to accomodate your child's educational needs, including the physical things which may be helpful are what is necessary for her to recieve FAPE (free appropriate public education).
    You want to have an "IEP" AND A "504 PLAN". The 504 basically ensures her "access" to the buildings that house education the IEP guarantees her right to be educated (basically)...
    the 504 will carry over into college...

    she has a right to have UNTIMED TESTING (school tests and all COLLEGE BOARD tests like ACT and SAT, etc.,) She can have tests administered verbally and even answer verbally if the need arises (the option should be written into her plan so if she needs it for college it is already existing accomodation).
    There is just so much to do for her to make her life more triumphant.
    let me know if you have any other questions...
  4. connieaag

    connieaag New Member

    I have Dr Bell's book on being an advocate for your child and read tons of web sites, but a lot of the information is several years old. With FM awareness now being greater than ever, I want to go into this prepared to address FM/CFIDS issues that are really different from some of the others that a NDP (normal disabled person if there is such a thing) might need. She does have a set of books at home. The CD would be great for Science and English Lit where there is alot of reading involved. We have one for Math, but that is her best subject -- it's just the teacher making her do every problem, even when I ask if she can do evens or odds that is SOOOOO frustrating. She (we) try to choose reading books that come on CD, although her teacher doesn't know it :) The English teacher frowned on that idea when I asked about helping her in that area. I don't want to be deceptive to her school and teachers and don't think I should have to be. Hopefully the plans will take care of this. I didn't know if I needed both, but sounds like I do. We live in Indiana.
    [This Message was Edited on 03/08/2006]
  5. elliespad

    elliespad Member

    That was great hope2001. I was just going to say that my daughter was Dx. with fibro in her early teens. She too, was an A student and was missing 30 - 40 days of school each year. The only accomodation I asked for was an extra set of books to be kept at home.

    I insisted that her Rheumatologist let her use GUAI protocol. She took 2400 mg. per day and gradually improved. Also had her tonsils and adenoids out. This helped a lot. She improved so much that the Rheumatologist withdrew his own Dx. of Fibro.

    She is now 22, completed 4 years of college, has a Bachelors Degree. Took a year off to work and plans to go on to get her RN and become a midwife. She functions at the highest level, emotionally, intellectually and PHYSICALLY. She can hike, bike ride through mountains, goes to Spinning classes everyday. She takes a lot of the same supplements I do, and has for MANY years. She knows she has to be careful of pesticides and chemical exposures for the rest of her life.

    Please share this with your daughter. This is not always a life sentence. I will pray for her healing.
  6. connieaag

    connieaag New Member

    Thanks for the info. She had a bad flare-up right after Christmas that lasted until the end of January. She switched to Cymbalta and changed from Provigil to Concerta for her "border-line" narcolepsy and started leaving school 2 hours early so she could rest and not be so bombarded with trying to rest, do HW, etc after school gets out at 4:00. She was doing great! THEN -- Monday (3/6) she tested positive for Mono and she is home all week with that. I think God should make people with FM exempt from other illnesses! I will share all of the positive posts with her. She actually is more positive than me most days. I think as a parent you just wish it was you instead of your child.
    [This Message was Edited on 03/08/2006]
  7. Cromwell

    Cromwell New Member

    That you know all your rights. These are meant to be given you prior to the meeting in booklet form,

    You are entitled to have medical doctor there at school expense also the parent rep can be of your chossing and you can invite a ftriend or expert.

    Be very clear what you want and do NOT sign anything until you have read it properly.

    Do not let them dictate the meeting You are equal in rights and to be heard.

    SAnne
  8. dani78xo

    dani78xo New Member


    i can completely understand your daughters position.
    i'm sixteen and in high school, diagnosed a few months ago, and it's been awfully hard.

    a meeting with the school sounds like a good idea.
    that's what me and my mom had to do, though the school was less than considerate.

    they do have to help your daughter in any way they can, like other people said, and accomodate her illness.

    i really hope your daughter finds her way to being healthier again =], i know how hard it is to be sick when you're young.

    from what i've heard on this board though, the younger you are the better chances you usually have, so keep your hopes up =].

    just take it easy, don't try to force too much or she'll end up crashing. it'll all improve.

    one thing that does help me, is i got a doctors note from my PCP, explaining to the school thatthere would be frequent days when i'd be too sick to go to school.
    now those days don't count against me,
    but it is hard to keep making up work all the time when i'm out.

    anyways, i hope your school decides to give you what you need =] it'll all work out.
  9. hope2001

    hope2001 New Member

    Yes, Make very sure you know your rights, which is why you need to consult with an advocate well in advance and find out what you CAN have, SHOULD have and WILL ASK FOR....
    you really should let them know in a written letter (and CC the state dept. of education about the requests you would like addressed at the meeting.

    If you use key terms in your letter like:
    your child's right to FAPE
    and
    in order to adequately the educational needs of my child....

    etc., they will know that you know what you are talking about and try to pull less "&^%&^%&^%" on you.
    You do have a right to everything I mentioned earlier, those things are all addressed in the Federal law...
    Federal supercedes state law unless the state laws are more strident (offer more). So don't let them say, well that's not how we do it here.

    You really need to request an ASSISTIVE TECHNOLOGY evaluation do be done officially.
    and actually while you are at it request a FULL PSYCHO-EDUCATIONAL evaluation... This will give you a more clear picture of your daughter's cognitive issues, etc.,

    by law they have a set time limit to COMPLETE eachof these evaluations and you should state nicely that you are aware, per your written request - to be considered your authorization - that they have a specific time by which the tests must be completed..
    Otherwise they will try to stall starting those also...
    If she is ending middle and begining high..then they will TRY to stall EVERYTHING until next fall and let the next system handle it..
    don't allow that...it will drag on for 4 months after school starts and the year will be lost...

    ALSO... I suppose you know that with a 504 status your child has the right to remain in the state education system with all the benefits until and through the age of 21...she can also be doing college at the same time...

    and THEY provide the laptop and programs...

    Hope this all helps!
    Hope
  10. connieaag

    connieaag New Member

    She is in 7th grade and has 8th grade at the Middle School before going to HS. I spoke to a school board member friend and she agreed that I needed to get started now with one year left of MS so it would all be in place before HS. Really the only things I need are:

    1) second set of books and CD's
    2) lessen her school day on a permanant basis
    3) to not have deal with the tachers questioning every request for 1/2 of the problems or just what is necessary to complete the course -- and this is only when she gets behind because she has had a flare-up, not all of the time.
    4) for the teachers to respect her when she tries to talk to them, and for me to not have to intervene all of the time to "verify" that she's not faking it

    In reading all of this IEP stuff, I don't think it needs to be done, but I guess it does for the "unknown future needs she may have". I can see why so many parents home school!

    She should still be able to play volleyball and go part days to school, right? That is a big issue when they see her "acting OK" at school and then me trying to ask for extra circumstances because she missed a few days of school. Sometimes I wish these teachers could live a week in my shoes. When she feels good or even mediocre she is at school. But they don't see her when it's realy bad.

    Thx for the info
  11. hope2001

    hope2001 New Member

    Yes she needs an IEP AND a 504 status...tell them you want both..you don't need to understand why now, but they protect your daughter in different ways and I see people having big problems down the road if they don't have both (but needed them) and your daughter qualifies for both...

    also, if it isn't in writing then it isn't real...
    the only way you can avoid ongoing problems is to have all needs addressed, she may NOT use all the accomodations afforded in the written plan, but they will be there IF she needs them...

    DEFINITELY get this done before high school..

    YES despite what they might say, she has a RIGHT to extracurricular activities...Being sick shouldn't make her even more isolated.. Team sports are important...
    try googling fibromayalgia or arthritis or asthma and female athletes or just athletes and present them with the list of names at the meeting..
    it will prove your point adequately....also these days there are TONS of sports scholarships available to girls because of the fair play act (i think it was called) saying funds have to be split between boys and girls sports evenly...so they RECRUIT girls desperately for scholarships to stay in the "black" so to speak...

    she might end up with a volley ball scholarship one day...
    baby's crying if you have more Q's just askl...
    Hope
  12. connieaag

    connieaag New Member

    Thanks! I am gathering articles from FM Aware, etc.

    Connie
  13. Cromwell

    Cromwell New Member

    iN july 2004 new patrameters were added to IDEA. These include that every child has a right to research based eductional plan. IN other words if you can show research suggesting what she needs which will include the training of all teachers and staff she is being addressed by, then thee quetsion re teachers "not knowing" should never arise. Also, make certain you say dates, like Within the next 6 weeks all staff will receive training. Or within the next two weeks, ada[tive technology will be available. Or, transportation will be provided on time for her shortened school day. My son had a bus all to himself when he had a a shortened school day. The bus then went straight to the Catholic school so no big deal, it was passing out house anyway. WRITE IT ALL IN. Also dates, without them they can trail on forever.

    Good Luck

    Anne C
  14. hope2001

    hope2001 New Member

    buses are a common thing when there are adapted school days...

    also I have been thinking....
    she is doing great right now, but middle school is more project major grades, and group projects..
    when she gets to high school it is going to be READING, NOTETAKING in a big way AND EXTRA READING and reasearch...and it is DO IT YOURSELF.

    I would HIGHLY recommend that you request A FULSCALE PSYCHO-EDUCATIONAL EVAL...this is so basic and common... No good advocate would start at any other jumping off point. At the least it will give you a baseline for later to see how fibro is affecting her cognitive and organizational skills....
    but by the time this is done, completed and discussed it will already be 8th grade...you do NOT want to wait until the 9th grade crush to start that process...

    same thing for AN ASSISTIVE TECHNOLOGY EVALUATION...
    go on a list like LDONLINE or something of that type and start asking about ASSISTIVE TECHNOLOGY programs...
    You just have no idea how it could help her and what all is available...It amazes even me...
    This one thing in particular saved my son's highschool career.
    AND NOTES
    put in writing that she will RECEIVE ALL TEACHERS NOTES
    she may not need them in 8th but she will in 9th..
    the things lectured on WILL NOT BE in the textbook and she will be responsible for knowing all of it..
    AND YES THIS IS A VERY COMMON REQUEST.

    the lighter load IS GOLDEN for her...keep the half days, definitely.

    do not give in on extracurricular..it is important that she have AVAILABLE TO HER A GOOD WELL ROUNDED SCHOOL EXPERIENCE (bolding the key terms)

    and UNTIMED TESTS

    will be invaluable..What if she is having a bad month? most tests in high school are scantron (most parents don't know this) they may have 300 questions and answer sheet with A - Z, AA-ZZ, AAA-ZZZ
    if she is having fatigue and cognitive issues at that time she will forget what A-Z was by the time she reads through AA-ZZ.

    What if she can't sit through her PSAT and SAT'S? she can have untimed and do it at her peak performance times (which is her right to show what is truly indicative of her knowledge and intellect).

    yes to teacher/staff education...it is done for epilepsy students, asthma students, etc., all the time. but don't rely on fibro sources to tell you what accomodations are needed and what the law allows..
    GO TO A GOOD LEARNING DISABILITY SOURCE and use cognitive deficit guidelines..it is all the same thing where results show.
    Fibro can be like ADHD also..


  15. connieaag

    connieaag New Member

    Hope -- Can you comment on that? I'm feeling FM overload and I don't even have it :)

    Also, is there an explanation of the tests you mnetioned somewhere?

    The school has been very cooperative so far, but I think their patience is growing thinner with each flare, as I have mentioned.

    I let Kathryn read this thread last night -- or her brother actually read it to her because she doesn't like to read -- Yes, Cognitive, I know :). She was exited about the Voice Recognition software, and actually my husband use to use that for his weekly newslettter but it was an older version. I may go out and just buy it for her today.She thought it would be great for AIM! I told her that wasn't the idea, but it takes her mind off of pain since she's home all week with the mono.

    Reagrding HS, I have a son 15 months older who will be in 9th grade next year, and they wil have the same counselor, so I had planned to contact her. After seeing all of your comments, I think maybe I should wait on that so I don't get two schools involved.

    THX to everyone. Keep the ideas and thoughts coming. They are appreciated. I am interested in the Homebound even for the last 9 weeks of this year. Is that possible without an IEP? Maybe she just need to check out and rest for 9 weeks and through the summer. Connie
  16. connieaag

    connieaag New Member

    Hope you're feeling better soon. Maybe the Voice Recognition software Hope 2000 mentioned would help you if typing is the problem. I'm going to get it today for my daughter to use for AIM and to get used to it. My husband used to have an OLD version, and it was OK, but her Doc uses a newer version instaed of a transcriptioninst and loves it.
  17. hope2001

    hope2001 New Member

    I am not sure what her Homebound program is, call you state office for disabilities or advocacy for disabilities...or some wording of that..
    I do know that the newest version of dragon speak (google it) is VERY GOOD some older versions were more tempermental..
    and they are even used by medical and law school students..

    that is the one you should look for. It is supposed to be only around $75.00

    the Kurzweil is a speech to text/ text to speech software..reads things out loud, word processing.. you can scan tests into it to do them on the computer, even SAT's etc.,
    it was a wonderful thing for my son to use in high school. It is used in all grades and many colleges prefer it for their students with LD's.
    but it is very expensive and the school may want to offer a similar one if they don't have a contract with kurzweil.. but schools do provide it if at AT eval shows it would be beneficial to the educational needs of the student with a disability.
  18. Sheila1366

    Sheila1366 New Member

    I will try not to ramble on and on and give specific very important tips.

    My daughter was dx. at age 12.

    First off,make sure to let the school nurse know about her condition.Request a meeting with her and your daughters teachers.Bring info. about fm/cfs and exspress your concerns about your daughters continued education.

    The state I live in has IEP's for children with special needs which includes medical conditions like fm/cfs.I even had the school nurse call me at home and meet with me privately to give me info.that our school system put on for the schools to help them educate children with fm/cfs.See if yo can find out about that.

    GET A DOCTORS NOTE IN HER RECORDS....explaing the special help she needs.Assignments written up for here in advance incase she misses school.

    They need to give her 5 minutes to leave before end of class cause it takes her longer to get from classes due to fatigue and pain.

    There are laws set up to protect these kids.Learn the laws in your state,your daughter has alot of rights.

    You are here advocate and maybe only one when it comes to dealing with the school system.Make them hear you and do as I have done "rattle some cages" if they don't listen.

    My daughter first attack of fm/cfs was awful.Kept her down for a long time.But she did graduate( I did end up homeschooling her mainly cause teachers were not buying the whole fm/cfs story no matter the dr.'s note or info.)

    She has finished college and has a great job.She feels good most of the time.SHe is still very tired most of the time.She takes provigil to help with fatigue.She has pain mostly in her legs at night.It has always been that way.

    If your daughter ever wants to post on the board and talk to my daughter ,Amber would be more than willing to give her support.As a matter of fact we were just talking about this the other day.I was telling her how we are getting more young kids on the board.It helps to talk to someone that has been there.

    Oh, one more thing.The school must provide someone to come in your home and work with her when she cannot attend school.

    Give her hug for me,
    Sheila
  19. hope4today

    hope4today New Member

    As a mom who advocated for two teens with FMS I am sitting here gently clapping my own fibro hands for the info being shared. As a Canadian much of this advice wouldn't have applied to me but to Connie I say print this stuff out and follow it to the letter! This gets really tough in high school unless you have built the infrastructure to support your kid in ahead of time.

    My kids each did homebound schooling for two years in middle school and then graduated with their year in high school. One of the greatest achievements of my life!!

    A lap top would have been great. They also found working in a cushy recliner with a lapboard the most painless way to do homework. I read much of their work to them and sometimes even took dictation. Cleared it with teachers ahead of time. Now my daughter often works at home as an assistant editor of an independant arts magazine on her laptop in the recliner.

    My daughter graduated from university last spring (Honors) and went to England to work. Crashed with relaspe, came home and we are limping along at the moment considering new treatments. My son has had an easier life dealing with his stuff...less hormonal inflences although he has horrible sleep hygiene and eats awful as well. I'm just holding my breath on that one.( He's in his 3rd year of college - Dean's List.)

    Go Mom! You are making a significant difference ONLY YOU can make in the life of your child. I applaud your courage, tenacity and love. My kids have come to realize that my efforts to get them through Gr. 12 have given them options in living with this disease!

    Hope Always!

  20. connieaag

    connieaag New Member

    Over the last year we have done all of this. I just cringe when I read of another child though who goes through the teachers doubting everything they say. WHen it's A student, they are not faking it or lying. I can't begin to count how many times Kathryn has come and said, "can you talk to the teacher? They don't belive me." Even when I write notes to accept half of the math problems and she gets all of the ones she did correct, they give her a 70% for incomplete. Drives me nuts. OK, I've vented. thanks for the advise. Keep it coming.
    Connie