Providing a Quality Education for A Teen w/CF

Discussion in 'Fibromyalgia Main Forum' started by terash, Nov 13, 2006.

  1. terash

    terash New Member

    Hello, I'm wondering if anyone has run into the problem of providing a quality education for Teen's with CF?? My daughter was diagnosed with CF in Nov of last year. She also has ADD, and Sensory Integration Dysfunction, Alergies, Asthma and a fast metabolism (I can't keep weight on her).
    I'm struggling with providing her with a quality education, especially with her memory problems, attention problems, the Public Schools don't know much about CF, I have provided the school with extensive CF info from the CDC, including the newest research symposiums in Europe. But she isn't receiving an education, missing too much school to learn,.... any suggestions or guidance here??? I'm facing a teen who want's to drop out because of all this!

    Mother of teen daughter w/CF/ADD/SI
  2. nerdieduckie

    nerdieduckie New Member

    I'm a teen with FM, allergies, and asthma and it has been really hard for me to keep up with school this year. My school was really cooperative in setting me up with homeschooling taught by one of my teachers, but that teacher has had problems in her own life and hasn't been able to visit me. So, I'm pretty much on my own when it comes to my education.

    If your daughter didn't have ADD I would say to let her be homeschooled. There are many good (although expensive) programs online my family has been looking into. They provide an independent study curriculum that most colleges accept, if that's what your daughter is looking for. With the ADD, however, I don't know if that would be the best thing for her. Also I'm not very familiar with SI so I don't know how that would affect home learning choices.

    See if your daughter's school offers homebound services or adjusted schedules. If your daughter has bad mornings they can put all her important classes later in the day.

    It's really frustrating trying to get school to fit into this puzzle of life we've all been given here, lol. I'm currently having to try to teach myself and there's no way I can do that with my brain all mushy as it is. I really don't want to go back to high school next year, I'd rather finish out my schooling online because I'm afraid of being held back this year, but my mum keeps hope that I'll have a miraculous recovery and be caught up on a whole year in 7 months.

    I can only say just to keep hope and keep searching around. Maybe find your daughter's strong points in her health and work with those, then adjust with her weaknesses. Don't let her drop out just yet, there are many options out there, you just have to search really hard for them.

    I hope some of this information was useful, since I'm at the teen viewpoint I may not have been much help :p

    Good luck,
  3. karinaxx

    karinaxx New Member

    i have a son with CFIDS/ME and myself also.
    he is beeing homeschooled partly and partly tutions.

    the program i am using is Calvert School , a homeschooling programm worldwide and the most famous one.

    the thing with ME/CFS is that all of this normal homeschooling programs are to vast and to much.

    i am in contact with Jane Colby of the, which specializes in helping children with CFS/ME/CFIDS and has a program online. it is a virtual school , teachers are knowledgeable in teaching kids with it or are, have been ill themselve.
    i dont use this online virtual school jet, because it is very expensive and my son was to young for it.

    if i would be you, i would contact Jane, she is very helpfull, has ME herself and is the leading SPEZ. IN EDUCATION OF KIDS WITH ME.
    she is a former headteacher and can realy guide you!
    they just had a course online, how to teach kids with cfs.
    if you contact her, just add in the subject box, help needed with child with cfs.
    hope that was of any help.
    if you need more info, just post for me
    hugs karina
  4. llcornwell

    llcornwell New Member

    As other post stated, homeschooling really helped. It was set up by my school so that if I missed a day of school, a tutor/teacher would come with missed assignments, lessons and ect. I think that all school systems should have a plan in place, but do not ask the school. Trust me, they don't want to deal with it unless they are told they have to. Call the school board. Homeschooling in addition to reg. school made it easier on me. I didn't have to worry about catching up when I missed class after I returned and I was still able to have some form of school life without the overwhelming stress of trying to make it to every class when I felt horrible.

    I wish your daughter all the luck and good health in the world. It has been along time since I thought of my high school days (1997 grad) and I thought of how I felt trying to make everyone understand. There really is alot of stress she is feeling that she does not even express. Just being a teenager turning into an adult was hard enough much less with CFS. Tell her to keep fighting. And please keep fighting for her. Do not stop until you find a situation that best suits her because these are very formable years. I don't know what I would have done without my mom. She fought for me when I just wanted to give up and hibernate. I wasn't strong enough to fight so she did it for me and I will owe her forever for that, considering I am now a college grad!
  5. terash

    terash New Member

    Jen, Thank you for your reply post! You are an inspiration, I will inform my daughter, 15, that there are other teens with similar challenges in education due to health issues and that she is not alone. Your imput has been very helpful. Again Thank You!
    Teri, Mother of Teen with CFS/ADD/SI
  6. terash

    terash New Member

    Jill, Thank you for your reply, and your assistance. I will follow up with the information you provided. I will continue with the searching. Your information has been helpful, again thank you!
  7. terash

    terash New Member

    Karina, Thank You for your post, I appreciate all your information it has been very helpful and I will continue to research the optional educational modes you have provided. Again thank you!!
  8. terash

    terash New Member

    Lori, thank you for your post, it's an inspiration to see a student so successful, thank you for your insite! I will keep researching the sites for one that fits my daughter. Again Thank You!!
  9. lrgatplay

    lrgatplay New Member

    I also have a 15yr.old dealing with the education problem right now. It is early yet so I'm still debating whether to just let him rest a while longer and see what happens, or do what the system wants and try to make him do as much as he can.
    Be good if I could get him talking to other teens like your daughter.
    My thoughts are with you both.
  10. terash

    terash New Member

    Thank you for the info. it is helpful. I appreciate the input. I've encouraged my daughter to signup also so she can talk directly to teens and others for support with her challenges. her ID is koolaide.

    much appreciated!
  11. terash

    terash New Member

    Hello, thanks for your reply, a fellow Kansan I see, I was born in Eldorado, grew up in Newton (I still have family there).

    I know how your feeling! Take heart in knowing there are others with similar issues. We did Hospital homebound for her last semester last year, not an education!!!! very disapointed. We are doing full time this year, but she has missed more days than she's been there....not beneficial to an education. The next step will be checking into a Virtual school along with part-time enrollement in the public school so they can remain her primary educators.

    I'm struggling with getting the school to understand Chronic Fatigue, and how it directly affects her ability to learn, process, and retain information. I'm lucky that her school nurse also has CFS, and fully understands what she is going through.

    Private schools are too expensive, grants are too little, It's the public schools responsibiltiy to educate, so I will keep pushing till I feel she is getting the education with tools in place to learn. Keep up your spirit!
  12. Liz919

    Liz919 New Member

    The first thing you should do, if you haven't already, is make your case with the school to validate her disability whichever law it is that says they can't discriminate against us in the matters of education. I think it's something like a 506 or aomthing. After that you can get them to tailor the curriculum to your daughter as well as the attendance policy. I personally was only required to do the importatn assignments, ie papers, test etc. No stupid coloring maps or excessive worksheets. I also didn't have to make up the time I missed completely. However I'm not sure how that will work for you guys. I personally had more of a problem with pain (as I have FM) than fatigue or memory loss. So I could still achieve A-B average even though I only attended school every now and then. I hope you guys figure out someway to keep her education going. I also now that if you can't get to school enough then they're supposed to find you tutors for at home or online classes. Good Luck!
  13. terash

    terash New Member

    Liz919, thanks for the reply, My daughter is always tired, her memory is greatly affected, she also struggles with anything that requires extensive reading with memory and extensive writing.
    I tried to get the medical health plan but because my daughter is also ADD, it falls under OHI, which superceedes the medical health plans. so we put things in medical form and issued to all the teachers, The school nurse also has everything I've given to the school. so far the school is requiring her to do everything with limited modifications.
    Thanks for your input! It's much appreciated

    [This Message was Edited on 11/14/2006]
  14. foxglove9922

    foxglove9922 New Member

    Hi terash,

    I haven't posted in a long time but your concern for your daughter's education caught my eye. Your daughter, by the way is absolutely beautiful.

    I too am the mom of an absolultely beautiful 19 year old daughter who has ADHD, Raynaud's, and severe CFS. We accuactly moved from our small home town to about and hour and a half away in order for my daughter to complete her high school education.

    She was so debilitated by CFS that she would go to school for 2 days and then miss 3,,,,she was failing miserably and the school she was in didn't have the accomodations to help her long term.

    We found a school district that could provide home bound tutoring. She opted for partial home bound as she desparately wanted interaction from the other kids. She only went to school 2 hours a day (when she was well enough) and a tutor came to our home for the rest of the classes she was missing.

    She graduated 2 years ago and was able to walk across the stage and receive her high school diploma. My family sat with tears in our eyes knowing the struggle she went through to get to that point. Much of her schooling was done at her bedside and we wheeled a computer up to her bed. When she was strong enough, sometimes she was able to sit at the dining room table and have class.

    We live in New York state and this state mandates that all children receive an education.

    She is now taking 6 credit hours at the local college per semester and is finding this quite taxing,,,,,at this rate it will probably take her over 10 years to get a degree but she is determined a cure will be found in her lifetime and wishes to pursue her career endevours in the hopes of being able to be employed someday.

    It's horrifically sad to see how much she misses out on....things other kids just take for granted like going to the mall, church, parties, etc.

    Best of luck to both of you.......foxglove
  15. butterfly83

    butterfly83 New Member

    Terash - I had to switch into home schooling during 7th grade because of the same problem. It wasn't that I couldn't do the work, but the early schedule and the long days were so grueling for me, I just couldn't keep up my attendance with my symptoms. My parents and I choose to go into homeschooling. You can purchase schooling progams that provide you with curriculums, books, tests, teachers, etc., just like a regular school, and you will get the same credit that you get from a normal public school. It really made a huge difference for me, because I was able to concentrate and do the same amount of studying in 4 hours that I would do during an 8 hour school day, and I could choose which part of the day my mind was most alert to work. It made a huge difference in my health, and my state of mind, not to have the huge pressure of having to deal with teachers and classmates who didn't understand or believe that my illness was real. I would definately look into this for your daughter, as an alternative to dropping out altogether. It IS possible to complete high school with CFS. You just have to get a little creative. :) Hope that helps, and i'd be happy to answer any other questions about homeschooling if you have any.
  16. terash

    terash New Member

    Foxglove, thank you for your reply and thank you on your comment on my daughter, she aspires to be a model. The information you have provided is helpful. She too misses more than she's there. Last semester of last year she was in hospital homebound, this year we were trying full time, it's not working. When she started back to school she did ok missed 9 days in 8 weeks, then she started getting sicker, missing part days to full days 3 to 4 days a week. I appreciate your daughters success story with her education. Thank You!

  17. terash

    terash New Member

    Butterfly83, Thank you for your inspiration. I have thought about homeschooling but my daughter and I butt heads to much, she doesn't like to listen to me! A teen at 15 thinks she knows more than her parent.
    Thank you, if I think of anything I will definitely message you back.

  18. dani78xo

    dani78xo New Member

    I'm 16 (almost 17) and I have both FM and CFS.

    Last year, when I first got sick, I pretty much had to take a medical leave from school. I tried going back, but I couldn't stay.

    I'm better this year, though the cold weather is getting absolutely brutal.

    The biggest thing that helps me is the 504 status that I got. Most students at my school have it only for ADHD, so I think your daughter would definitely qualify.

    One thing on it is that I have excused absences. After last year, when I kept getting sick and having to stay out for weeks before trying another day, I was getting reprimanded for my absences. My grades were going down because of it, and I couldn't do anything.

    So this year we got a note from my doctor explaining that I WOULD be out sick a lot, and that I shouldn't be marked against for it, because I had a legitimate illness.

    It's helped TREMENDOUSLY. I've already missed probably 15 days so far in the two and a half months we've been in school, but as long as I get the makeup work and complete it, and not fall behind, I don't have to worry about my absences anymore.

    I also have extended time on assignments, when I need it.

    There are other things, too, like being able to have water all the time--some teachers won't let students drink anything in their classroom, but it definitely helps with nausea, and if it's cold it takes the edge off of the fatigue.

    There is always the option of homeschooling, but in my personal experience, when I tried at home tutoring last year (after I gave up on trying to get to school) it didn't work out. I couldn't see my friends anymore, so I didn't get the normal high school experience, and it basically forced me into a severe depression.

    It's different with everyone--it just wasn't for me.

    Anyways, 504 statuses really help, because schools are legally bound to help students with 504s in any way possible--within reason, of course.

    Since I've gotten the 504, I haven't had too many problems with the school itself, only keeping up with the work. (Some classes, like Geometry or Language classes, are extremely hard to keep up with if you're out a lot.)

    And there's a really good forum specifically FOR youth with OI/CFS/FM/other things, it's active and has A LOT of REALLY helpful information for parents of kids with these illnesses.

    It's called You have to create an account with EZboard (it's free) to gain access to it, but it's really helped me with a lot of my school issues. It has specific sections for students grades K-12, a college/adult section, a seperate section for each FM, CFS, and I think OI.

    It even has private forums for teenagers or parents.

    Anyways, hope some of this helped just a little =].
  19. joyfully

    joyfully New Member

    Hi. I just emailed my friend who home schools an ADHD daughter who also has dysgraphia.

    When I get the information, I'll come back and post it.
  20. terash

    terash New Member

    Danielle, thank you for your reply. I will make sure my daughter reads it, it might help her a bit.

    We have all the paperwork in place, except the real 504, because she is OHI with ADD and Sensory Integration Dsyfunction, it overrides the 504, but we have put in place mach 504's so the teachers will understand it better, but most think she's lazy and doesn't want to be in school (we both know it's not so, it is the CFS but with the frustration of falling behind, kids and teachers not understanding CFS, she does want to drop out).

    It's frustrating for her, memory problems, muscle aches, stomache pains, allergies, asthma, ADD, SI, struggles with exhaustion brought on by carring too heavy of a backpack(we have a partial set of books at home to prevent as heavy of a backpack ... still over 15 lbs), walking up and down the stairs at school(environmental, mental and physical stressers), getting sick all the time(mainly from sick teens at school), glands always swollen, taking the meds(She's with a Dr who is running a trial with Valtrex 3x day and Rantitadine (now replaced with Prevacid because of constant stomach pains), depression( don't understand)....list goes on!!

    She first got sick at 1 month, chronic ENT infections, Asthma attack at 3 months, hospitalized at 1 yr for chonic infections/dehydration, at 5 with mono(out of school for 3 months), Tonsils out at 6 and underwent Allergy testing at 6(shots for 5 years), had repeated viral infections(2, 3 sometimes 4 a month with no known cause), diagnosed with ADD & SI in 4th/5th grade, 14 diag. with CFS, and retested for Allergies and Asthma.

    Her Dr. believes she actually contracted the CFS at 5 years and because it went untreated for almost 10 years, it is not curable, she will have to live with it the rest of her life!

    Maybe the two of you can talk sometime, I think it will help her.

    Again thank you for your inspiration!!


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