Group Project: Ideas for EDS Testing!?

[Guest guest]

In a message dated 8/29/2004 8:56:05 PM Pacific Standard Time,

stacey8127@... writes:

There was also the huge 'fight' in my last year of high school to

get me a key to the elevator as the school was 3 floors and the

elavator was locked except for students and teachers really needing

it. I did eventually get it but endured quite a few accusing

glances from teachers. Also I missed so much school for illness and

was outright teased and bullied about that from teachers and peers.

{{{Stacie}}}....I've stood beside my own kids & seen this same ...excuse my

french....Shit....day after day. Didn't help that at one time, her friends

knew she took karate before puberty hit.....& then her whole body fell apart.

In

8th grade, she only got to attend class for 31 days in 9 months. Only her

math teacher was on our side...because her own niece has Classical EDS and is an

invalid at age 23. STILL we couldn't get the elevator key, the PE excusals,

even the duplicate sets of heavy books until 3 months into the school year!

Tomorrow she starts high school. Because they don't assign the hospital

home program teachers for 60 days, she is DETERMINED to make it on her own.

The nurse won't meet with me yet, so no meds, notes, anything will be there for

her this first week. The doctor won't even sign a note for stuff until we

see this week what things we'll have to add, to save me treking to his office

over & over. It's 4 AM, I can't sleep, I'm listing every little thing I can

think of for her to give each teacher in the meantime....can you tell I'm

scared??!! She's worked SO hard all summer getting better & stronger....and I

am so

afraid it could come crashing down again, especially if we have to wear

ourselves out fighting for what she needs. Pray she makes it....getting to have

a

normal high school experience as much as possible means the world to her!

Liza

[Guest guest]

Liza

Good luck to you & your daughter. It is to bad we have to fight so hard to

have something so normal.

Betty

Re: Re: Group Project: Ideas for EDS Testing!?

> In a message dated 8/29/2004 8:56:05 PM Pacific Standard Time,

> stacey8127@... writes:

> There was also the huge 'fight' in my last year of high school to

> get me a key to the elevator as the school was 3 floors and the

> elavator was locked except for students and teachers really needing

> it. I did eventually get it but endured quite a few accusing

> glances from teachers. Also I missed so much school for illness and

> was outright teased and bullied about that from teachers and peers.

>

>

> {{{Stacie}}}....I've stood beside my own kids & seen this same ...excuse

> my

> french....Shit....day after day. Didn't help that at one time, her

> friends

> knew she took karate before puberty hit.....& then her whole body fell

> apart. In

> 8th grade, she only got to attend class for 31 days in 9 months. Only her

> math teacher was on our side...because her own niece has Classical EDS and

> is an

> invalid at age 23. STILL we couldn't get the elevator key, the PE

> excusals,

> even the duplicate sets of heavy books until 3 months into the school

> year!

> Tomorrow she starts high school. Because they don't assign the

> hospital

> home program teachers for 60 days, she is DETERMINED to make it on her

> own.

> The nurse won't meet with me yet, so no meds, notes, anything will be

> there for

> her this first week. The doctor won't even sign a note for stuff until we

> see this week what things we'll have to add, to save me treking to his

> office

> over & over. It's 4 AM, I can't sleep, I'm listing every little thing I

> can

> think of for her to give each teacher in the meantime....can you tell I'm

> scared??!! She's worked SO hard all summer getting better &

> stronger....and I am so

> afraid it could come crashing down again, especially if we have to wear

> ourselves out fighting for what she needs. Pray she makes it....getting

> to have a

> normal high school experience as much as possible means the world to her!

> Liza

>

>

>

[Guest guest]

Liza

Good luck to you & your daughter. It is to bad we have to fight so hard to

have something so normal.

Betty

Re: Re: Group Project: Ideas for EDS Testing!?

> In a message dated 8/29/2004 8:56:05 PM Pacific Standard Time,

> stacey8127@... writes:

> There was also the huge 'fight' in my last year of high school to

> get me a key to the elevator as the school was 3 floors and the

> elavator was locked except for students and teachers really needing

> it. I did eventually get it but endured quite a few accusing

> glances from teachers. Also I missed so much school for illness and

> was outright teased and bullied about that from teachers and peers.

>

>

> {{{Stacie}}}....I've stood beside my own kids & seen this same ...excuse

> my

> french....Shit....day after day. Didn't help that at one time, her

> friends

> knew she took karate before puberty hit.....& then her whole body fell

> apart. In

> 8th grade, she only got to attend class for 31 days in 9 months. Only her

> math teacher was on our side...because her own niece has Classical EDS and

> is an

> invalid at age 23. STILL we couldn't get the elevator key, the PE

> excusals,

> even the duplicate sets of heavy books until 3 months into the school

> year!

> Tomorrow she starts high school. Because they don't assign the

> hospital

> home program teachers for 60 days, she is DETERMINED to make it on her

> own.

> The nurse won't meet with me yet, so no meds, notes, anything will be

> there for

> her this first week. The doctor won't even sign a note for stuff until we

> see this week what things we'll have to add, to save me treking to his

> office

> over & over. It's 4 AM, I can't sleep, I'm listing every little thing I

> can

> think of for her to give each teacher in the meantime....can you tell I'm

> scared??!! She's worked SO hard all summer getting better &

> stronger....and I am so

> afraid it could come crashing down again, especially if we have to wear

> ourselves out fighting for what she needs. Pray she makes it....getting

> to have a

> normal high school experience as much as possible means the world to her!

> Liza

>

>

>