Re: Re: school support

[Guest guest]

Our now high school senior started with a 504 (freshman year) then we went

on to an IEP (junior year) after she became chronically and ill and was

unable to keep up. The LLMD wrote her a note to say she needed to be kept

home from school due to chronic illness. The school allowed her to go into a

home and hospital program, this has been a life saver for our daughter.

She does not physically attend school but is working with a tutor - provided

by the school. She does some classes on line and the other classes with

her tutor. The tutor liaises with her case manager at school who sets the

pace and load of the work with her teachers. Her work load has been cut to

allow for the brain fog, fatigue etc. As the IEP falls under special

education the teachers should not have a problem modifying the curriculum. Her

LLMD insisted she was unable to be in school due to the fatigue, compromised

immune system, brain fog etc. etc.

Do a little reading on the home and hospital and see if you can connect

with one person on staff who is sympathetic to the situation. If you can

find one person to champion the way it certainly helps break through the

educational wall! If not print up the info. on Home and Hospital and ask to

meet with her case manager and just lay it out for them. Be sure and provide

something official in writing from the doctors office supporting your

request to lighten the load.

Feel free to contact me directly if I can be of any help,

_mglenn@..._ (mailto:mglenn@...) .

In a message dated 2/17/2011 6:44:02 A.M. Pacific Standard Time,

nmoiseyev@... writes:

my daughters have pretty much unlimited time to make up work after an

absence.

My younger one also has a late start and does not go to math at all, or

school

until 10 am. We teach her math at home and she has a tutor.

Natasha

________________________________

From: Diane Biel <_dkbmama@..._ (mailto:dkbmama@...) >

_ _

(mailto: )

Sent: Thu, February 17, 2011 6:21:59 AM

Subject: Re: [ ] Re: fathers

I am wondering - my daughter that had a 504 in eight grade and now a IEP

under

OHI at her high school.....I would like to know what is put into the

wording of

this......my daughter really only has an extra five days after an absents

to

make up her homework - anyone have anything that lightens the load for

these

kids at all or do they still expect them to do all the work even though

they are

not able to attend school all the time?

thanks,

Diane Biel

________________________________

From: Mildred Reagle <_mildge2@..._ (mailto:mildge2@...) >

_ _

(mailto: )

Sent: Thu, February 17, 2011 7:45:54 AM

Subject: Re: [ ] Re: fathers

Responding to the second part of your message...We have had some issues

with

school as well. This being my daughter's first year in middle school i

didn't

know what to expect, so I asked for a meeting last summer and explained

that we

needed a 504 plan (medical, not learning plan). At first the school

hesitated

since E wasn't really " sick " at the moment. I used her " extreme " anxiety

as the

issue and then asked to add the lyme just in case it " flared " . I had to

find

words the school would understand. The counselor was great. Even changed

some

of E's classes so she would have friendly faces in her classes. Then in

oct E

did get sick and missed a month of school. The 504 plan went into effect.

It

was the best decision I had made...to go to the school our the summer.

Without

the plan I'm not sure how E's grades, or her confidence would have

suffered.

There was no way she could have made up all that work. Since the teachers

were

aware of her situation " most " of them were great. Finally after many

e-mails,

phone calls, and visits I think we have all her teachers on board. Next

year

she gets a whole new group of teachers...hopefully the same counselor:)

________________________________

From: ktdommer <_ktdommer@..._ (mailto:ktdommer@...) >

_ _

(mailto: )

Sent: Wed, February 16, 2011 6:20:00 PM

Subject: [ ] Re: fathers

I get the Venus Mars thing when it comes to men and women dealing with

chronic

illness. The men are fixers and sick kids can't be fixed overnight. I have

had

to lower my expectations of my husband. He just can't get there

emotionally/mentally. I married an engineer. I got him busy doing what he

can

do- fix good meals, take the sickest out for a smoothie, play cards, get

the

best price on vitamins and research herbs etc... My husband had to start

working

from home so he got to see my sickest child at his sickest for hours at a

time.

That helped his compassion a bit. He now schedules the nurse and infusion

company drop offs.

We are so hopeful that we are coming out of this and that the family

dynamics

can someday be back to normal.

On a different note but in a response to another post about it would be

easier

if our children had cancer and I have thought that many times. I started

using

those words with the school. Last year when the wanted Nate to make up 5

weeks

of work, I asked them what they would do if Nate had cancer. Things

changed and

the amount of work was less that he had to do. Today at an IEP meeting a

biology

teacher is marking Nate down for work not turned in. He just started back

last

week. I asked her if she would do the same if Nate had been out for 5

months for

cancer treatment. That changed her tune. I made sure it was written in

that he

would not be docked due to laste assignments resulting from health issues.

I

have to say thought that today was the best IEP/IAT meeting I have had in

3

years.

I'm so glad that we can support eachother even if only online.

Thinking of you all,

Kari

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]