high school and dd help for my daughter

Discussion in 'Fibromyalgia Main Forum' started by minkanyrose, Feb 9, 2007.

  1. minkanyrose

    minkanyrose New Member

    I can't remember where I read it but I had seen somewhere that you could get tutor help for kids in school.

    my daughter has been very sick for 2 years now just got diginoised with muscularskelital pain and I suspect it will be diganoised Fm.

    my daughter had to drop out on medical leave in her 10 grade year last quarter. now a senior has failed all but one class this year and last year failed many classes due to migraines excessive illnesses and pains.

    I called the school yesterday and asked about special tutoring for my daughter and they can't help her unless her doctor say's she will be out more than 3 weeks.

    well she missed a month from Nov. to Dec. this year and the nurse said that doesn't count that is past. then she said they have special programs for kids with cancer, or serious illnesses like that but nothing for what my daughter is having.

    ANY help on who to contact from here! I wanted to give her apeice of my mind and more but just said who else can I talk to and she said she could talk to my daughter's doctor and see what he says but doubts there is anything she can do to help.

    IGNORANT PEOPLE AUGH!!!!!!! daughter doesn't have a serious illness.
  2. ravenpaige

    ravenpaige New Member

    This could be a very long post, but I'm going to try to make it short. Your best bet will be to try to enlist the aid of your doctor to specify that your daughter has a chronic illness that will likely necessitate sporatic periods of absence. Depending on the school, and the state where you live, that may or may not be enough.

    My daughter started getting sick about 5 years ago. At first, she was diagnosed with chronic tonsillitis, not caused by strep, which lasted about 6 months (at which time she had a tonscillectomy). About 2 months into her illness, I started to get nasty letters from the school because of the number of her absenses. I took her medical records to the school (really helps to have your own file), when through them with the principal, explained that she had been diagnosed with chronic tonscillitis and that they were trying to discover the cause, and that I really felt my daughter would benefit from an in-home tutor. The principal informed me that they could not authorize an in-home tutor unless they had a diagnosis. (I told her, "you have a diagnosis; it's chronic tonscillitis; you mean you want a prognosis, and don't we all!).
    A few weeks later, I got a letter referring me to the state's child wellfare agency. When I went to the appointment, with my growing medical file, the case worker ended up advising me that I might have to sue the school. In my state (IN), there are clearly laws on the books that require a school to supply assistance if a child is chronically ill. I believe this is also true for most states, but I don't know for sure.

    In that case, the tonscillectomy, as well as the end of the school year, somewhat resolved the problem. But the reception my daughter and I had received caused me to decide to move into a different school district. For my daughter, the change of schools was good, and she managed to stay in school enough the next year (and make up missed homework) that we didn't run into problems. However, the following year she came down with a chronic sinus infection that wouldn't resolve (about 4 mos this time) until she had sinus surgery. After that, she had various other problems (stomach, throat, etc.) and then began having serious problems with sleep and muscle pain. She was finally diagnosed with fibromyalgia about 6 mos later. (Actually, I have to say, I diagnosed her, suggested it to her pediatrician, who then refered us to a specialist in child rhuematology, who finally diagnosed her.)

    Since then, education has also been spotty. She attended school that fall with awful attendance, and was basically flunking most of her classes when the school suggested that she attend an alternate school that had class for about 3 hours a day, all on computer, and was self-paced, so she could pick up where she left off when she had to be out for a week with a flare-up. This has been an acceptable alternative, but not great. She should be almost finishing her junior year at this point, but she's actually only in the middle of the sophomore year, according to her studies. Before she became ill, she was an A/B student (more A's than B's, actually), and in accelerated French. Now, she complains that she often just "doesn't get" the subject (biology seems especially tough).

    Well, I'm sure this all sounds somewhat familiar to you, but the bottom line is that handling education for a child with CFS/FM is really tough. It's more difficult, of course, if you're like me and are also ill. I know many parents choose to home-school, which may be the best option (depending on your state laws and your personal circumstances). For me, being a single parent and still working full-time, home-school was not an option.

    If you need or choose to work with the schools, you should really try to find out the state laws for education of a chronically ill child, as well as what alternates the school might have to offer. And then go with that information to your doctor (assuming they are sympathetic) and ask them to supply medical information fitting the criteria according to the wording of the law.

    By the way, I'm neither a lawyer or a doctor, just a frustrated mother, so please do your own research and map out a plan that will work for you. Like many things about this illness, each situation requires individual attention, depending on the specific circumstances. Good luck and let us know how it goes.
  3. lrgatplay

    lrgatplay New Member

    We are having the same problems with my son.
    He was referred to the alternative school. Which he was also not able to handle.
    So we got a strickly homebound referral from the doctor.
    And they have provided a tutor who brings us 4 subjects. She comes twice a week.
    He still is not able to do much of the work. I have to work so am not able to be here to direct his limited activity.
    He was previously a self motivated mostly A student.
    At this pace he obviously won't be able to keep up his grade level. So I really don't know what to do either unless he recovers sufficiently to do more and then try to catch up.
    The school system has suggested we wait and see before trying to get an IEP or 504 plan.
    However at first they told me he actually didn't qualify, until I mentioned 'other health impaired'. Don't let them get away with that.
    We may in the end decide to do an online homeschool program. Several have been mentioned here. The American School seems reasonably priced to me. Although I hate for him to miss out on the whole highschool experience.
    I hated highschool but it's different for him.

    Then there is always the GED. But seems getting an IEP or 504 plan can set the stage for college.

    Still navigating this myself and wish you luck.
    One day at a time.
  4. pearls

    pearls New Member

    Lisa's advice not to let the schools get away with it is spot on. As a former teacher, I can tell you that otherwise well-meaning school administrators will take the path of least resisitance, which means they will not usually bend over backwards unless you make them do it. "The squeaky wheel gets the grease" certainly applies here. I can't tell you how it is in your particular state, but there are laws regarding these situations. Acquaint yourself with the those laws, and refer to them if you have to while dealing with the school. Most administrators are short of money and time, but that is certainly not your problem, nor your daughter's. Accommodations must be made in these circumstances, but they will only be made at your insistence.

    If the nurse is not helpful, talk to the principal. If the principal is not forthcoming, talk to an administrator in the district office. If that doesn't help, talk to the school superintendant. If that doesn't help, contact your representative on the school board. Enlisting your doctor is a very good idea, too. Be persistent.

    My best wishes to you and your daughter,
    Pearl S.

  5. suzannekart

    suzannekart New Member

    I have gotten 4 kids through school. My youngest daughter has real difficult ADHD. I was in a battle with schools the whole time she was in school. She is 20 and in college now. What I want to say to you is the school is required by law to give your daughter an education IN THE LEAST RESTRICTIVE ENVIRONMENT. In my experience with school districts is for some reason they fight you all the way. If you can get your daughter something called an I.E.P. [individual education program] she will have much more of a chance of getting the help she needs. An I.E.P. and a "504" are both under federal law and school districts not in compliance will loose their federal funding. In your district you should have someone in charge of special education. Call them. Tell them your concerns and that you are not being helped by the school. Sometimes them just knowing you know where to go for help gets them off their butts. Your district will be able to supply you with booklets covering the process both for state and federal laws. Your daughters dr. will be able to supply any proof you need. There are many kinds of problems these laws cover not just life threatening illness. If her illness is impacting her learning they must after proof is supplied give her the help she needs. If they still give you grief you need to call the federal office that is over disabilites. We live in southern Washington and our office is in Seattle. I talked with him many times and they will quickly act if a school district is not doing what they should. It is really something to see all the school people fall over each other when you casually let the paperwork be in view that you get from the federal office. It always made me laugh. I will look up the title of the federal agencies and post to you. I know this sounds like a pain to do but I will tell you a daughter is worth everything. I have tons more information and practical advice from my own war with the schools. By the way once you get these things in place your daughter will be covered untill she is 21. So if she goes to college she will get help... Please let me know what I can do to help you!! Suzanne
  6. ravenpaige

    ravenpaige New Member

    Sounds like I could use your advice too. I'm very worried about my daughter because she will be 18 in about another year. She held so much bright promise before she got sick, and now I'm afraid she will not even be able to finish hight school. I've thought about just putting her in home school, but since I work, that would be really difficult to manage.

    Any suggestions on how to best manage this, including who to call, would be appreciated. I've already had to call the Civil Liberties Union about this once, but they are overwhelmed, and when they got back to me, I'd already worked out a solution at the time. But hey! Why do we have to go through this? We just want to help our kids, and it seems like we're treated like criminals instead.
  7. findmind

    findmind New Member

    You might want to go to the National CFIDS Foundation's website: ncf-net.org, and ask for them to send you a few copies of their booklet for school nurses.

    Although you don't have a CFS diagnosis for your child, this booklet explains the many ways a chronic illness can keep a child from learning. It also explains what you need to do to get help for your child.

    Maybe you can take some of the symptoms listed there and apply them to your child, and that way find the words that will get the help your daughter needs.

    I'm so sorry your daughter is sick. May you find all the strength you need to do battle royale for her!

  8. cruz

    cruz New Member

    Hello - your best bet is to get a 504 plan which is a federal document required for ADA all over the US. In that document accomodations can be listed such as, less time in school, less homework, more time to complete assignments, require only 1/2 of the work, do oral responses rather than written, use a proctor, a tape recorder etc. GOOD LUCK. We do these all the time and the teachers and school staff have to follow the rules. It is a federal law and your daughter qualifies. Cruz (Special Educator in CA)
  9. ravenpaige

    ravenpaige New Member

    Thank you. I have never heard of a 504 plan, but then, the schools don't seem to be forthcoming with very much information. So I will definitely look into that.
  10. foxglove9922

    foxglove9922 New Member

    My daughter became very, very ill with CFS after a bout with mono at age 15,,,,she missed 48 days in her junior year and was failing almost everything.

    We moved out the rural area we were living to a larger city that had accomodations for disabled children. It is the LAW,,,,,,education must be provided to ALL children,,,even the disabled.

    We had home bound tutors come in and school her at her bedside. She was able to graduate in her senior year.

    Don't STOP.......Write or call your state's dept of education, legislators, school administrators, get letter from doctor stating she is unable to attend class like healthy children, etc.

    It's a battle but man oh man there's nothing like messing with my kid.....I become like a mean ole mama bear. Your child is sick and helpless,,,,,,,FIGHT!!!!!!!

  11. connieaag

    connieaag New Member

    Go to connieaag and username and keep looking until you get tothe posts regarding an IEP from April and May. Hope gave me SO MUCH good advise and it is overwhelming to read through the accomodations that your daughter is entitled to at school.

    We got an IEP under Other Health Impairment. It was the first in our county for FM. We could not have made it through this year with out it. It justifies the illness and gives you something to fall back on if it's not followed.

    Although Kathryn's health is not great and we had to go to homebound in November, it was a very simple process since the IEP was in place, and the school corp. is very accomodating and willing to work with us.

    Read through the posts and let me know if you have any questions. Connie
  12. suzannekart

    suzannekart New Member

    I don't know how much help I can be but I will tell you what I know. First of all you need to really understand that your daughter has a RIGHT to her education. I don't know how true this is but my belief is that the schools get rid of a lot of their responsibilty by making it difficult and then parents homeschool or foot the bill for privite school. I also beleive that to have their system work most smoothly for them they would like to fit every kid into the same mold. I also would love to know why, at least in all the districts I worked with for my daughter, there were FAR fewer girls getting help than boys. I could never find the exact numbers. Sorry for the rant. To get help get in touch with her school and tell them you have a concern your daughter is in jeopardy. There should be a form to fill out which should result in a "team meeting" with teachers, and special ed. Our dr. came to the first one we had for my daughter. He was great. I have never heard of another dr. doing that. If they need information from her dr. try to have it ahead of time. One of the most important things I can tell you is to keep a record of everything. I got a binder and had sections for whatever came up meetings, teachers, any testing she has and the most important section phone calls, time, person talked to and exactly what was said. This was my best friend. If someone tried to sidetrack me I always had the correct infomation right in my hands.
    Set a time limit for everything or they will keep putting things off. If you think a week or 10 days is good then thats it. I am not saying to be unreasonable but you must stick to your plan or the school year will be gone. If they drag their heals always have a plan of what to do next. If you do not get this meeting then call the district special needs director. Every district has one and get his name and number before you need it. The next thing would be the state. I skipped that and went to the federal goverment. Our state had those offices in Seattle and when I called they were great. Please don't think twice about calling them. The first time I called he sent me what they call non-compliance forms. I never used them but I will tell you I only had to ask any offical in our district if they could say non-compliance and the blood would drain from their face. I beleive an I.E.P has a clause in it that a child needs to be two grade levels behind but that is not always true. If you cannot get a I.E.P. then she will need a 504. They are both federal laws. I am sure this all sounds like way too much to take on. I can only tell you if you do each thing keep a record and stick to your timeline it will not be so hard. Your daughter will also be covered till she is 21. So college will have to adjust to her also. It took me years and good friends to learn all this. I hate the way schools treat people who need a little extra help. I will post the story of how I got these lessons sometime if they will let me. Some of the lessons I learned were very hard. In one district the school psychologist tampered with my daughters test scores so she would not get her i.e.p. In another the psychologist took away my daughter's i.e.p. not no one knew. It was totally illigal. anyway I am sorry for the long post. It really gets me going. Please let me know if I can help any more.
    P.S. The school district has booklets to explain all the laws. The other thing I forgot is that the federal office for this is under the education heading. It is the disabilities office. My fibrofog just kicked in and I have gone blank I will look it up an post for you
  13. ravenpaige

    ravenpaige New Member

    I really appreciate all the information. Yes, it is all a bit overwhelming. But I am taking down everything you have said and I will try to sort through it. As you probably know, this is really more difficult when you don't really have the energy yourself, or if you're like me, tend to forget a lot (I have to write everything down now, it seems).

    But it sounds like it is worth it. It really is maddening how difficult it is made for children who need help. But then, a lot of things about the dd are maddening.

    Thank you again,

  14. connieaag

    connieaag New Member

    We are in Lafayette. I know the school districts all seem to operate differently even within the state when it comes to Special Services. Nerdie Duckie is in southern Indiana and she doesn't have anything like Tippecanoe County offers the kids.

    You have to EDUCATE yourself so you know your rigths. Dr. Bell has a good book A Parent's Guide to CFS: Advocating for your child. And get the current Wright's law book. Both were a huge "educational" help for me. Also, go to the Pediatric Network site and look at their materials.

    I can give you a list of Kathryn's accomodations, but your daughter is older and graduation is at your door. Mine is just starting HS next year and we had her IEP meeting last week. I know HS gets tough!

    Best Wishes! Connie
  15. connieaag

    connieaag New Member

    I was looking for online courses and saw that IU has a complete online diloma and some of the credits will apply toward college. You might look into that since it would follow the Indiana Core 40 or whichever diploma track she is on.
  16. suejackson

    suejackson New Member

    We have been through all of these struggles with our two sons (now ages 9 and 12) who both have CFIDS. I won't bore you with all of the war stories, but if you're interested in learning more about what we've been through and how we managed, you might want to take a look at my blog, www.livewithcfs.blogspot.com.

    U.S. federal law requires public schools to provide accommodations for children who are unable to participate in school completely for medical reasons. This is her legal right. That doesn't mean it's easy to get schools to comply, but knowing that the law is on your side helps considerably.

    I highly recommend a book written by Dr. Bell and some colleagues called, "A Parent's Guide to CFIDS: How to be an advocate for your child with CFIDS." The book focuses on CFIDS but applies equally well to kids with FM. This book was invaluable to us in understanding our rights and guiding us through our many difficult meetings with the schools. Here's the website for the book (also available through amazon):
    [web site address removed as per rules]

    One of the co-authors of this book, Mary Robinson, is a moderator of the Pediatric Network, a message board for parents of kids with CFIDS, FM, and similar illnesses. You will find lots of great information on this site and through the forum and plenty of good experience from other parents going through the same thing. Check it out at www.pediatricnetwork.org. You have to sign up for the forum, but it's easy and free.

    As a quick summary:

    1 - You need a doctor's letter that states your daughter's diagnosis. Nothing else will happen until you have this.

    2 - You and the school work together to create a 504 plan (or an IEP plan - the book above describes the differences) that documents the accommodations the school district will make for your daughter.

    3 - The school administrators make sure that all teachers comply with the 504 plan (or IEP plan).

    4 - The plan is reviewed every year to make changes and keep it current.

    There are many different types of accommodations that might help your daughter. This is another area where the Parent's Guide book is invaluable; it includes lots of examples.

    For example, when our older son was in 5th grade, he was suddenly missing weeks at a time. Dr. Bell officially diagnosed him with CFIDS in December. In this case, we had a wonderfully supportive principal who had known our son for 6 years. She understood immediately that he had a serious medical problem because she knew what a good student he'd always been and she knew us. We worked together on a very simple 504 plan. It said that the teacher was responsible for getting make-up work to him, that he was responsible for making up the work before the end of the marking period, and that he'd have a home tutor to make up days missed when he got close to the district's maximum for absent days. This worked for elementary school, since our son was able to attend about 60% of the time and he was able to make up work pretty easily. The teacher wasn't thrilled, but we had the principal on our side.

    As another example, his 504 plan the following year when he started middle school was very different. We had lots of struggles with a new administration who didn't know him and a few teachers who felt he should be confined 100% to home. The fact that we had a previous 504 plan and doctor's letter helped tremendously. Finally, we ended up with a revised 504 plan. This time, it said that all district attendance requirements would be waived; that all non-required courses would be waived (that left 5 academic courses); that he would take 3 classes in school whenever he was able to; that he would be assigned a home tutor for the other 2 classes. There were also lots of minor accommodations, like allowing him to carry his bottle of Gatorade at all times (for treatment of OI), lie down in the nurse's office when he needed to, etc.

    Sorry this ended up being long, but I think those are the key points. Definitely get a copy of that book, and I'd be glad to help you in any way I can (you can contact me directly through my blog). It takes a lot of hard work and a thick skin, but you can get what your daughter needs. Good luck!!