Fibromyalgia Support Group

Okay, My daughter is 8 years old and she has FM. The school is giving me a VERY hard time about her missing school alot and more often being late for school. She wakes up stiff and hurting and we go to the chiropracter for acupuncture and chi stuff and then go to school. By the time she gets to school she is late but it is not avoidable.

So now I have a meeting with the school on Monday March 23rd at 8:15. Basically we are going to write a plan for MaryBelle. It will have specific things for MaryBelle and FM and special things she needs. Well I am calling on all of our friends here to help me to make sure I come up with all I need to address at the meeting.

If you know something I need to add to this plan please tell me. I already have these things:

1) extra set of books to have at home because her backback is too heavy.

2) excused tardies

3) excused absenties

I will tell you that MaryBelle has a VERY hard time remembering how to spell her spelling words. She can read something and understand it but she has a hard time memorizing stuff...She also gets very tired during the day and sometimes starts hurting for no reason or her legs start spazing for no reason.

PLEASE TAKE TIME TO THINK OF YOUR WORST DAY AND HELP ME SEE AROUND CORNERS AND WRITE A GREAT PLAN FOR MARYBELLE.

It sux that I have to write a special plan to make them respect and listen to MaryBelle but I do!!

Thank you in advance for your help!!

as a family advocate, my best advice is to get an advocate for her and you. This is someone who works in her best interest and fights for what you know she needs. Call ARC in your area and see if they have advocates. These people should not charge you.

I would fight for having someone come to your home to teach her a few days a week. Then, you only have to schedule a couple of mornings to have her in school on time, and the in-home teacher can come on a later schedule.

Just don't take no for an answer if you know there's something she needs. Fight till you get what you want. It's a long haul with disabled kids- I've done it for my own kids and as an advocate. It's hard, but keep up the fight and it'll work out ok. Make sure when you have the IEP meeting that your daughter is there, or any meeting for that matter. Let her have input for what she thinks might help.

Good luck to you.

Cornbread: I take MaryBelle to the meeting? I didn't know that. I am going to see if I can get an advocate to go with me. I am willing to fight for anything she needs I just need to know what she needs. I need suggestions. A friend suggested the extra set of books or I would have never thought of that. But now that I think about it of course her backpack is too heavy...so if you can think of anything you would ask for yourself if you were 8 please share with me. I don't have FM so I really don't know what all she is going through...Thank you so much!!

Hey, Lisa. I'm so relieved to hear from you. I was getting worried! How did the sleep study go?

Off the top of my head, I would add that she needs to be able to tell the teacher if she's too tired. She should be able to just let the teacher know and go to the nurse's office to lay down and rest.

I'll ponder it throughout the day and see what else I can come up with. The books were an excellent idea!

Tell Marybelle I said, "Hi." Are you going to take her to see the new Hannah Montana movie? Don't tell anyone, but I really want to see it, too! Taylor Swift is in it as well. Hubby laughs at me, but I do want to see it.

We don't actually go to the movies (fm) so I'll have to wait for the dvd, but I can't wait! It looks really good!

She has the legal right to be at any meeting about her care or education. YES!!! Take her!!!They can say no to the extra books, and tell you to get a rolling backpack. She should have a tutor to help with memory issues and learning on her own speed. If that means "special ed" you have to demand that she not be removed from her classroom. They can put an aide in class with her. Have her make a list of the things she has trouble with during school and take that to the meeting too. You will want to invite her dr. as well as any therapists or teachers. If they cannot attend, have them send a letter with their impressions and suggestions. Have all of her medical records with you, tell the school nurse to show up too. You have to go in ready to fight, and I'm sorry, but it could get ugly. Just remember who you're all there for, and don't let it get ugly from you. The nicer you are, the more likely you'll get the help you need. Now, keep in mind, the squeaky wheel gets the grease, you just have to squeak carefully.

Cornbreads advice is GREAT, and I love the set of extra books at home. You definetly need to get a "middle man" like she suggested. Schools can be a pain getting what you need, trust me, I have my own war going on with my daughters school. A plan is a great idea, I think both you and MaryBelle have proven that she wants to be involved as much as she can, and they should be applauding that and helping in any way they possibly can. If I think of anything I will for sure let you know, and please let us know how its going.

If it was me I would tell the school to bite it get an advocate or do home schooling. But thats me I'm mentaled

I can't give you any better advice than cornbread has already given you. Just remember that they HAVE to accommodate her disability. She is protected by the IDEA. They may try to say no to the extra books, but you can make them do it anyway. Her doctor's input is crucial to getting her what she needs. Just so you know, if the meeting does not go as you would like because of lack of time for preparation, you can request another meeting at any time. They won't like it, but you have the legal right. MaryBelle doesn't have to attend the meeting, but she has the right to if the both of you want. Be prepared for them to say no to pretty much everything you ask for, just don't take no for an answer.

I would also ask for a more comfortable desk and chair for her, to be allowed to take breaks to move and stretch when needed, to be excused from PE activities as needed. If they don't have a cot or bed in the nurses station for her to lie down I would request she have access to one. If she has bladder issues or IBS she should have standing permission to take a restroom break when needed. And she should have a supply of whatever pain medication she takes(tylenol, motrin, whatever it may be) with orders and permission for it to be given. You are allowed to bring anyone you like to the meeting. It's a good idea to inform them of who is coming, but I don't think you are required to. You can also record the meeting as long as you inform them you are doing so.

Does she need anything special as far as physical education is concerned?

Might be worth too taking someone with you for your support, who knows the script you want to put over, and who might keep objective notes of what's happening. You know best how Marybelle might feel about being present, although that might include being in the middle of heated conversations.