Help from Connieaag, nerdieduckie, etc about school

Discussion in 'Fibromyalgia Main Forum' started by lrgatplay, Dec 9, 2006.

  1. lrgatplay

    lrgatplay New Member

    Sorry to bother you guys, but you seem to be ahead of me on the learning curve. I have to write a letter to the school this weekend and request a formal IEP or 504 plan. I also need to try not to be emotional, angry about it when I do.

    I thought the homebound would be enough, but as my son can't come in "as agreed" to the Charter school as they have set up, He (they) are getting ready to "file a truancy report".
    They say I have not made contact; I have. I agreed to "try".
    However my son can't at this point, and really can't concentrate on the work right now for more than maybe 15 minutes at a time. Particularly math stuff.
    I was really trying to just let it go through the holidays and see how he feels later.

    We have been able to get his sleep, wake schedule somewhat stabilized, but still makes it difficult with my work schedule. So will have to make more adjustments there.
    He says he has maybe one hour of good per day, usually in the early evening.

    I've dealt with an in-school IEP before for my youngest who had speech delay.

    Anyway, at this point I don't know what to ask for or expect from them. I need info. on the 504. I will continue to dig through here.
    I am also signed up at the pediatricnetwork but have not posted yet so can't get into the restricted areas.

    Thanks in advance, and I'm so sorry for all that have had to deal with this situation.
    I was just sprinkling fairy dust over my son. Maybe a magic wand.

  2. nerdieduckie

    nerdieduckie New Member

    Sorry that your plan isn't working out. I can't believe they are wanting to file a truancy report. It's not your son's fault that he can't make it and you said you have tried to contact them.

    I know what it is like to not be able to work more than 15 min. at a time. For the past few months, I haven't even been able to get out 5. Trying to teach myself math was the worst.

    I'm really at a loss here for advice, because my 504 (albeit a really bad one) states that absences don't count against me, I can come into school whatever time I can, I get to use the elevator (which is useless), and things like that. Now since I'm homebound...well, that's a different situation.

    Obviously since your son's good hour is in the early evening, it wouldn't be easy for him to make it into school. Have you explained this to his school or are they not choosing to care? We have people that care, they just don't know what they're doing. You may want to change the homebound plan so that he's allowed to stay home full-time with no penalty. I'm not really sure what you currently have set up.

    I hope that was at least a little help, my brain isn't inside my head today (I checked ^_^ ), so I wasn't able to come up with many good things.

    Best of luck to you though, and I hope your son feels better soon.
  3. lrgatplay

    lrgatplay New Member

    I guess I do need to get the 504 set up so absences don't count against him. We had set up with the local Charter School, which is attached to the alternative high school. Basically it's for the problem children, and the principle is obviously not used to sick kids of this nature.
    I get attitude whenever I try to talk to them.
    My son is supposed to do the schoolwork online, but come in to do the testing and assessments.
    I have given them info on CFS, but they don't seem to understand. Then we got the West Nile diagnosis, which I assumed would give us more credability.
    I will be spelling it out exactly in my response letter to the truancy notification.

    Praying for miracles. It is Christmas. May you all be blessed.

  4. connieaag

    connieaag New Member

    PLEASE do a search under my username at the top of the message board. Type in connieaag and the search by username.

    Go to the posts from April and May and read them all. Hope2001 helped me so much. She doesn't post much anymore, but she had so much good advise.

    A couple things I would do:

    Go for the IEP. That's what we have under the OHI category, Other HEalth Impaired. It is my understanding that it holds more weight than a 504, and we have had no problems. This is our first year with an IEP. Kathryn had been going from 8:30-1:30 and missing the 9-week special and PE. She got a really bad flare in late Oct. and about a month ago we went HB. I assume you read on the other post how easy that was to do since the IEP was in place.

    One thing we will add next year (it's up for review each year) is that her attendance can not count against her classroom participation or notebook grade. That has been a problem with Math since he takes a notebook grade each week, and she missed 3 weeks, and didn't have a chance to copy notes form someone else!

    Read my posts, and then fire away with questions! I am MORE THAN HAPPY TO HELP.

    PS, The Pediatic Network doesn't have much action I have found! I had a horrible time getting on to in at first too, so don't feel bad.

    If you have a dx from his doctor, it should not be too much of a problem. Does your school corp have a special ed department that just does this stuff like ours does? Sounds like from Nerdieduckie that they don't all have this.

    Have you had a Neuropsych evaluation done? We did it on our own, our insurance covered it instead of relying on the school therapist to do it. They gladly accepted the one we had done, and they didn't have to pay for it. That way, you as a parent can really talk to the psychologist and make sure it's done by someone who knows what FM/CFS are and how they affect a child's cognitive issues. We also found, that even though Kat was on AD, she was extremely depressed and had suicidal thoughts with no intent to act. We got her into a psychiatrist and a child psychiatrist right away to change her meds. It was a HUGE help. As we knew but they reiterated, depression has to be under control before any healing can take place.

    [This Message was Edited on 12/09/2006]
  5. lrgatplay

    lrgatplay New Member

    Maybe some suggestions here to see if I'm saying to much or leaving anything out. Don't want to cause more trouble.
    Copy of letter below.

    In regard to your certified letter dated Dec. 6th, 2006, received Dec. 8th, 2006, requiring response by Dec. 11th, 2006. Subject Truancy report with the Sedgwick County District Attorney's office.

    My son has been experiencing health problems related to chronic sinus for the past year or more, and had been on repetitive antibiotics and steroids. During this last episode, around Aug. or Sept. he also contracted West Nile Virus. His doctor signed a Homebound instruction dated 10-01-06 for 12 weeks with a note saying that may have to be extended depending on how pt. is doing.

    In your letter you stated that I said his health was such that he could come in at least once per week to take tests etc.. I don't have detailed notes on our conversations, but do recall saying that his health was such that we would 'try' to come in once a week to take tests, but with his illness, it would be hard to say an actual day and time. This was on Nov. 27th, 2006. Your letter states that I had not contacted you since Nov. 8th, 2006.

    We find it impossible at this time, due to the severity and variability of his symptoms, to come in to do the work required, or even at this time, to do the work at home.

    I'll explain further. Earlier I presented you with some information regarding Chronic Fatigue Syndrome. This was before the West Nile diagnosis, but the same symptom criteria still applies.
    His daily schedule includes about 12 hours sleep and maybe 2 to 4 hours napping or resting. We have just recently gotten his sleep schedule regulated to around 11:00p.m. To 11:00a.m.. His other symptoms include: sore throat, headache, muscle and joint pain, blurred vision, nausua, dizziness, and brain fog. This is on top of the never ending tiredness. The sleep he does get is non refreshing and highly fragmented. He experiences moments of extreme anxiety, adrenaline rushes, and racing thoughts, as the illness causes Central Nervous System and immune system dysfunction.
    He has not left the house since Halloween and before that only for doctor appointments and occasional visits with his father. He had to miss two family functions for Thanksgiving. When he does have outside activity, his symptoms become worse for several days. As if they weren't bad enough.

    I am of the opinion that we should give him as much time as possible to try and recover at least a little from some of these symptoms, before pressuring him to resume school responsibilities. Even then, some adaption may need to be made in order for him to continue. For example a home tutor or teacher for the tests or allowing him to take those tests from home without the in school requirement. Also a reduction in the amount of work required per assignment if he exhibits an understanding. He has a particular problem with math at this time. We will be pursuing formal IEP and/or 504 plans. I cannot at this time predict what he will be able to do. I am presenting copies of this letter and your letter Dec. 11th, 2006 to the proper representatives at the administrative offices for the district.

    I do hope that we can come to some sort of understanding in the best interests of Jordan's health and education. And that I do not continue to receive truancy threats and negative attitude from those who are in position to help Jordan.
  6. carouselsb3

    carouselsb3 New Member

    I was reading your post regarding school for your son and was wondering how old he is. My daughter is 9 years old and in the 4th grade. I am looking to find other support for parents of children with CFS. I am finding this very hard considering that most information/drs/treatments, etc is aimed at adults.

    Thank you,
    [email address removed as per rules]
  7. connieaag

    connieaag New Member

    I AM SO SORRY! I just read your post. We were gone for 2 weeks, and I wasn't on the board much. How did you make out with the school? Then I will comment more.

  8. lrgatplay

    lrgatplay New Member

    Sorry I missed your post in Dec. and sorry to hear about your daughter. My son is 15 and not officially diagnosed with CFS or FM. Since doc found West Nile that seems to be where he stopped and said it could take up to a year for him to recover. However at our last doc visit we asked about the joint pain etc. and he said that is other than the West Nile so ordered more blood tests. Don't know what for yet. That doc moves pretty fast, and next thing you know you're in the lab giving blood.
    Had meeting yesterday with the school people and am still mighty confused by that. But did get tutor pending arrangement. got email address too. This is very difficult indeed for us as parents.

    Hope your trip went well for you and family and that your daughter benefitted from it. They don't feel it's time yet to set up an IEP or 504 plan. I had to mention the 'other health impaired' when they stated that IEP were only used for students with certain disabilities like autism, ADHD.
    Like I said, I'm still processing everything we talked about and will definitely need to jot it all down.

    Yes I did finally get a doctors note following the truancy thing. They still didn't seem to find that clear enough.
    That he didn't need to be doing anything that would be detrimental to his progress. Thanks for your concern.

    Well, I'm supposed to be working.
  9. lrgatplay

    lrgatplay New Member

    Hi Prickles

    What a ball and chain that must be!

    I am the one guilty of smoking. And do need to "take it outside" more often. I have tendency to sit late at night on the computer and, ya know. Doc wants me to try a new thing to stop smoking.
    Jordan tends to spend most of his time in his room. We call him 'cave boy'. There are a few sightings that can be missed if not paying attention. Lately he has been spending more time with the family, but finds his little brother and stepfather highly irratating sensory wise. I do too. They are genetically loud and boisterous. I will try to get some sort of ionizer or air filter for his room.

    Since his sinus had gotten really bad since we moved to the 'country', I'm hoping the move back to town will tone down the seasonal aspect somewhat. I'm keeping him on a low dose of Biaxin daily and will recheck with the doc monthly, but last time the infection was cleared up.

    PS doc just ruled out RA by a blood test and diagnosed the FM. He didn't do any tender point test though. Still confused between the CFS and FM, as joint and muscle pain appear in both. I was leaning toward CFS as diagnosis, but glad doc acknowledged FM. Even though, as with the West Nile, he said there is no treatment. He is working with us on sleep/pain issue via amitriptyline and will review its effectiveness in the next month.

    Thanks for all you do here Prickles.
  10. lrgatplay

    lrgatplay New Member

    I was really hoping you didn't mean 20 pounds! I totally forget about the currency.

    I haven't been to EBAY for awhile.
    Don't know anything about ionizers. Although I did buy a tiny one supposed to be for the bathroom.

    I like your site by the way. Good job.
    You're a busy women.

    [This Message was Edited on 01/11/2007]

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