Re: School and Flares

December 5, 2004

> Dear Emilie,

I'm sorry to hear about 's flare. Regarding the 504 plan...this

is the way it's supposed to work:

The process starts with a letter from you to the principal of the

school requesting an evaluation for accommodation under Sec. 504 or

for an IEP under Other Health Impaired. If you child needs additional

instructional assistance you might want to ask for the IEP. The school

has to respond in writing setting the appointment for the meeting

after your letter requesting the meeting. To prepare for the meeting

you will need letters from all of your child's doctors who deal with

the disability stating the nature of the disability and how that

disability impacts them during the school day. My best advice is to

become familiar with the laws and have a list of the accommodations

you and your child feel are essential before you meet with the

school.: some accommodations that usually go along with arthritis are

the following:

Section 504

Accommodations

Arthritis

These strategies can help accommodate children with arthritis.

· Provide a rest period during the day.

· Accommodate for absences for doctor's appointments.

· Provide assistive devices for writing (e.g., pencil

grips,

non-skid surface, typewriter, computer, and so on).

· Adapt physical education curriculum.

· Administer medication.

· Arrange for assistance with carrying books, lunch tray,

etc.

· Provide book caddy.

· Implement movement plan to avoid stiffness.

· Provide seating accommodations.

· Allow extra time between classes.

· Provide locker assistance.

· Provide modified eating utensils.

· Develop health care plan an emergency plan.

· Make available access to wheelchair and school van for

transportation.

· Provide time for massage or exercises that may be

needed.

· Adapt recess time.

· Provide peer support groups.

· Arrange for instructional aide support.

· Arrange for someone else to take notes.

· Install handle style door knobs (openers).

· Record lectures and presentations.

· Provide outlines of presentations.

· Issue Velcro fasteners for bags, shoes, coats.

· Obtain padded chairs.

· Provide a comfortable style of desk.

· Adapt attendance policy if needed.

· Provide a shorter day.

· Furnish a warmer room and seat student near heat.

· Adapt curriculum for the lab classes.

· Supply an extra set of books for home use and keep a set

at

school.

· Let student give reports orally rather than written.

· Provide an awareness program for other students.

· Monitor any special dietary considerations.

· Adapt the curriculum as necessary.

· Provide individual counseling.

· Make any needed bathroom accommodations.

· Accommodate for writing with a computer and note-taking

with

a tape recorder.

Also, if you need further help, a good person to contact is Professor

Carol Kaffenburger at Mason University in Virginia. She has

done extensive research on children with chronic illnesses and how the

schools should support these kids to be successful students. She is

on top of the latest laws and can help you. Her email is

ckaffenb@...

Good Luck to you.

( 12 systemic)

> Does anyone have any advice on how to deal with flares while in

> school? is in a complete flare. Her knees constantly hurt,

> along with her neck and back on and off. We went to the rheumy on

> Thursday and because she is on an antibiotic we were holding off on

> the enbrel. The rheumy told me to give her two shots within a

> couple of days of each other and then we are going on weekly shots

> again. My biggest concern is that when she says she hurts in

school,

> that the nurse is not going to listen. She already missed last week

> because she was sick and I do not want her to miss another week.

Her

> fevers have been bouncing all over creation too. I asked the

> principal about a 504 medical plan and she said that it has to be

> suggested by the teachers. Does anyone know how that works? I am

> going to take her to school tomorrow and talk again with her

> teachers and the nurse. I'll willingly take all advice on this,

it's

> uncharted territory for me..

>

> Thanks.

> Emilie (Ashl

ey 6, poly)

December 5, 2004

We just recently did a 504 with Hunter's teacher. It has been wonderful - no

more having to call the doctor if she is sick to get a note - if she is stiff

in the AM and needs the extra time she is excused to do so. It can cover

many things and it is designed to protect our children's rights. It is not an

IEP talk with the teacher or the nurse - our school nurse was great in

implementing this for Hunter - of course she has arthitis too- so many people

just do

not know what our children endure. Good luck hope is feeling better

soon. Sandi Ken Hunter (6 Systemic)

December 6, 2004

Everyone so far is correct. But if all else fails you can contact your local

congressman by mail and then the school will start jumping through hoops to

accommadate you. I had problems with one of my other children with the school

and once my congressman was involved it was amazing how smooth and easy

everything went. The school system and administrators don't want to make their

congressman mad, it will run like clock work.

zellierothenheber <h.skidmore@...> wrote:

Does anyone have any advice on how to deal with flares while in

school? is in a complete flare. Her knees constantly hurt,

along with her neck and back on and off. We went to the rheumy on

Thursday and because she is on an antibiotic we were holding off on

the enbrel. The rheumy told me to give her two shots within a

couple of days of each other and then we are going on weekly shots

again. My biggest concern is that when she says she hurts in school,

that the nurse is not going to listen. She already missed last week

because she was sick and I do not want her to miss another week. Her

fevers have been bouncing all over creation too. I asked the

principal about a 504 medical plan and she said that it has to be

suggested by the teachers. Does anyone know how that works? I am

going to take her to school tomorrow and talk again with her

teachers and the nurse. I'll willingly take all advice on this, it's

uncharted territory for me..

Thanks.

Emilie ( 6, poly)

December 6, 2004

Alesha.. thanks for the advice.. Hopefully they will cooperate with out bringing

my congressman into it.. but if they don't that will definately be one avenue to

follow.. Emilie