Re: It never ends!

[Guest guest]

In a message dated 2/25/04 12:55:39 PM Eastern Standard Time,

monica-jb@... writes:

<< As it looks now, neither one of my girls will graduate high school on

time. It's just so depressing.

>>

It doesn't really matter in the grand scheme of things, . What matters

is the kind of person your girls develop into. They will get to where they

want, it might just take a little longer. Hang in there.

Hugs,

Sue G.

[Guest guest]

Have you checked into http://www.educationdirect.com ?

It never ends!

Oh, how I wish I were a brilliant woman, and could home school my girls.

is back at school now, after a month of " home health tutor " - which

turned out to be a joke.

She's been complaining of knee and ankle pain for a few days, but has pushed

through. I get a call from the nurse, and was back in the health room,

with back pain, and increased knee and ankle pain. She's got a cold, and it

seems to me that whenever I get a cold, my pain increases. I'm thinking that's

what's happening with her. I don't know.

The nurse talked to me about getting her a shortened schedule. Just 4 periods

a day instead of 6. I'll have to talk with her counselor, but this may be a

good place to start. She just needs to be able to rest when she needs to.

is at the point were if she went back to the high school, she would be

totaly floundering. We are looking into the head start program at the local

community college, as well as home study courses, which she's taking one of now.

It's through BYU, and you do the assignments on the computer, then go in and her

counselor gives her the test. It gives credit for a full semester course. She

may be doing quite a few of these. It costs about $100.00, but it's worth it.

The head start program is free, as far as I understand it.

Oh, so, I do't know where we are at. Everything is so jumbled up, and I don't

know what's gonna happen.

Obviously, 's schedule has to change. She can't get through one week

without calling home. Poor thing. She's such a social butterfly, too, that it

really bums her out to not be able to be at school.

Well, I'll have to figure something out. As it looks now, neither one of my

girls will graduate high school on time. It's just so depressing.

[Guest guest]

The school nurse suggested I see if could get on a reduced schedule.

Just take the 4 main classes, then go home.

Has anyone done this? It sounds like a good place to start. I'll have to talk

with her couselor.

Just wondering if anybody's kids are doing this.

[Guest guest]

,

> The school nurse suggested I see if could get on a reduced

schedule.

> Just take the 4 main classes, then go home.

> Has anyone done this?

This is exactly what I did in the second 1/2 of my junior year.

My fatique and fainting started when I was 14 or 15. I missed a lot of

classes during my sophomore and the 1st part of my junior year. I failed

algebra because it was the first class of the day and I was barely awake on

the days I did attend that class and missed most of the class the rest of

the time. I was normally an A/B student and this was the first class I had

ever failed. I should have also failed history, but the teacher cut me a

break because the quality of work was good when I actually turned things in.

Most of the time, though, I just didn't get it done. 1/2-way through the

semester, I had started taking naps in the nurses office during my lunch

break and would go to my classes after lunch IF I woke up in time and IF I

felt up to it. Many days, I just went straight to the bus to go home after

my 2-hour nap.

I met with my guidance counselor regarding the F in algebra. We talked

about my absences, fatique, and chronic fainting spells. I had not been

diagnosed with EDS and the doctors were baffled by my fainting. He

suggested " drop out for a year and come back when you feel better. " That

was not an acceptable option. I told my friends about it, and they

suggested I speak to a different counselor.

The second counselor was much better. She went over several options with

me. The option we both thought was best was switching to 1/2 day classes.

I was able to go to my first 4 classes in the morning, then go home at lunch

time. By going home earlier, I was able to take a nap in the afternoon,

then get up and do homework. I was better able to get up in the morning

because I had more time to sleep by not struggling to stay up late to get it

done. I don't remember what my grades were that semester, but I didn't fail

any classes. My overall health was improved too because I wasn't constantly

exhausted. I continued to have dizziness and fainting, but the fatigue was

at least managable.

At the end of the year, the school passed out flyers for correspondence

courses and summer school. I signed up for summer school and completed the

5 remaining classes I needed to graduate over summer break. I didn't have a

Senior year and went straight into college.

I could not have gotten through high school without the modified schedule.

The lunch time naps were helpful, but the 1/2 day schedule made the real

difference between success and failure.

-Barb

[Guest guest]

Hi , Another option for is for her to go to school one hour a day.

This would be for her to check in with each class once a week. Then she would

still have the homebound teacher. Dylan tried that for a couple weeks, but our

school was just to big for him to manage. Perhaps two hours a day in school.

She can keep all her classes, if she has the discipline to do the work at home.

Going 4 hours a day was another potion given to him, but he just couldn't manage

it. Will they allow her to continue working on finishing through the summer?

Dylan worked with the homebound teacher all last summer to try to finish. There

are allot of options out there. They can only work through the summer if she has

a 504. If she has an IEP, they can't do it. Cindy C.

It never ends!

Oh, how I wish I were a brilliant woman, and could home school my girls.

is back at school now, after a month of " home health tutor " - which

turned out to be a joke.

She's been complaining of knee and ankle pain for a few days, but has pushed

through. I get a call from the nurse, and was back in the health room,

with back pain, and increased knee and ankle pain. She's got a cold, and it

seems to me that whenever I get a cold, my pain increases. I'm thinking that's

what's happening with her. I don't know.

The nurse talked to me about getting her a shortened schedule. Just 4 periods

a day instead of 6. I'll have to talk with her counselor, but this may be a

good place to start. She just needs to be able to rest when she needs to.

is at the point were if she went back to the high school, she would be

totaly floundering. We are looking into the head start program at the local

community college, as well as home study courses, which she's taking one of now.

It's through BYU, and you do the assignments on the computer, then go in and her

counselor gives her the test. It gives credit for a full semester course. She

may be doing quite a few of these. It costs about $100.00, but it's worth it.

The head start program is free, as far as I understand it.

Oh, so, I do't know where we are at. Everything is so jumbled up, and I don't

know what's gonna happen.

Obviously, 's schedule has to change. She can't get through one week

without calling home. Poor thing. She's such a social butterfly, too, that it

really bums her out to not be able to be at school.

Well, I'll have to figure something out. As it looks now, neither one of my

girls will graduate high school on time. It's just so depressing.

[Guest guest]

From: smginleyrn@...

Subject: Re: It never ends!

It doesn't really matter in the grand scheme of things, . What matters

is the kind of person your girls develop into. They will get to where they

want, it might just take a little longer. Hang in there.Hugs,Sue G.

**************************************************

Amen! Very well said Sue!

[Guest guest]

Hi ,

What has the school done to make the classroom

situation as good as possible for her? I am

thinking in terms of chair, desk etc. It just

occured to me that since she just got diagnosed,

maybe she has not got good enough help yet? With

a diagnosed disability, it could open some doors

to some rights...

Just thinking here. It may not be applicable or

suitable at all, but I am thinking that maybe it

can give some ideas, so I'll write a bit in

case...

Maybe if she wouldn't mind it, she could sit in

a good recliner type chair with her feet up and a

mini desk on her lap? With a heating pad which

she can use on sore back muscles... I know that

when I sit in my recliner, I am able to sit

comfortably a long time, while sitting on a

regular chair e.g. meeting room chairs as they

have in hotels, is torture. School chairs

usually are much worse...

Re. more " normal " chairs, many have had luck with

a chair called Hag Capisco in the US. It is made

here in Norway. The company, Håg, is very into

dynamic ergonomics and design - website at

http://www.hag.no/hag_us.nsf I have a Capisco

at work, and I love it. Since I got mine, the

office has bought many, for people with back

problems etc. It is especially good for the back

and hips, because it has a special seat which

allows you to sit in a lot of different

positions. You can also sit with the back in

front of you, and lean forwards towards it,

either in a stabile locked position or you can

sit and rock. It really helps many. You can also

have a high lift on it, so that you can use it as

a " stand-chair " , then with a high (or adjustable

height) desk. You can see the chair here

http://www.hag.no/hag_us.nsf/pages/hag_capisco I

know that another EDSer here on the list got one

after we talked about it here a few years back,

and she was so happy with it.

I have another chair from the same manufacturer

too at work, it is called Hag Credo, the newest

model which is a bit different than mine, is

called Hag Credo H04 - you can see it at

http://www.hag.no/hag_us.nsf/pages/hag_h04. That

one has a high back and a neck rest. I can tilt

it backwards and put my feet up, e.g. while

reading papers. It is really useful for me to

combine these two, variation seems to help a lot.

You can also sit really comfortably in this with

a lap desk or laptop on your lap. Before I got my

recliner, I had one also at home and when my neck

was at it's worst, with excruciating pain, I sat

in that chair to keep it steady and let it rest,

because the neck rest is really good. Also then I

put my feet up and tilted it backwards, which

shifts the weight off your spine, makes a really

huge difference both for the neck and back...

I also really love my recliner. It has a pressure

relief wheelchair cushion in the seat, the back

reclines electrically and it can also raise you

up to a standing position by pushing a button. It

also has a variable lower back support. I am

sitting in it right now, with my computer on my

lap. I have slept many hours in this chair, that

is for sure...

These are just a few thoughts, I am just thinking

out loud. It is also just a tiny piece of what

can be done in a school situation to make things

easier...

When it comes to rules and such in the US, I

don't know a thing... Well, I know one thing,

that a student who has a disability, has rights

when it comes to adaptation, both in the US and

in Norway...

If things like that has not been tried yet, it

may be worth a try... It might just change her

pain level and ability to concentrate quite a

bit. It must be awful for her to have such a hard

time at school as she is having now... Maybe if

the school could do good enough adaptations for

her, she would have a better chance at being able

to stay in school as much as possible, which I

guess is what she really would like to. It is

also so important socially to be there...

But I must say, your daughters are so lucky to

have you for a mom. First of all you know about

these things first hand by having EDS yourself,

and also you seem to be so good at learning all

you can for all of you...

Oh gosh... It is almost 1 a.m. and I am going to

work in the morning. I have been home for quite a

while, only started working again today. And I

have been so tired both at work and after work,

but typically I am awake now, now that I really

need to get to bed... Totally out of my " work day

routine " ...

Good night,

Aase Marit

[Guest guest]

Ooops.... I saw this header on top of the posting:

From: @ Home

To: ceda

Sent: Wednesday, February 25, 2004 12:15 PM

Subject: It never ends!

and thought the posting was from ... But it wasn't, was it?

Sorry for the confusion....

Aase Marit

[Guest guest]

I think I must be tired anyway, he-he... Now I saw the one line from

the other poster... So the posting I replied to, was 's after

all...

Sorry!!!!!

good night,

Aase Marit

[Guest guest]

Hi again ,

I forgot one thing I think is important... Have the school offered

her a room where she can get proper rest when she needs it? They use

this option a lot here. The room will have to have a

bed/coach/recliner which is suitable for her, one which offers her

the comfort she needs in order to get proper rest. It could also have

an electric heating pad for sore muscles and joints. And it should

have an option for relaxing music, either by having a CD player

there, or she could use a portable one. That way she could take a

time-out whenever she needs it, and withdraw to the room for a

rest/relaxation. Maybe she could learn some relaxation exercises she

could use when she takes a " time-out " , since they often give you much

more effective rest than just laying down...

Just a thought...

And now I really am going to say good night and go to bed, he-he....

Aase Marit

[Guest guest]

Thanks Barb.

I remember you telling me about doing this. I think it's really 's only

option now. It's much better than failing everything. I don't know if she

could get through with school as quickly as you did, but that doesn't really

matter, does it?

If she can pass 4 classes, and get the rest she needs, then that's much better

than trying to get through every day, and failing all her classes.

Thanks,

Mon

[Guest guest]

Her counselor is working on the 504 now. I have to go in to see her.

I think the 4 classes a day would be a better place to start. See how it works

for her.

She could come home at around 12:30, and rest. Then do homework, and still be

able to see her friends.

Ta,

Mon

[Guest guest]

Hi,

You are so right. I keep saying that very thing. In the grand scheme of

things, it doesn't matter.

Even if did graduate on time next year, she still isn't really ready to

go off on her own. She's too fragile. She doesn't even drive yet. Too ill

over the last year to get that done.

So, who really cares if she doesn't graduate on time? Not me. She will be 18

this Sept, so that means her whole Senior year, she will be 18. She can go to

the community college to feel like she fits in better. Then, it won't even seem

like she's failed in high school.

She's fine with it, really. She's a bit bummed, but it's unavoidable. And,

like I said, she's not dying to get out and get a job and move out of the house.

That'll happen when it happens. She's happy here at home for now.

(I had to leave as soon as I got out of high school. I was still 17, and joined

the Marine Corps just to get away!)

Not so with .

Thanks,

[Guest guest]

Well, I don't know.

We are working on her 504. I suppose it all depends on what her GP will write

up. We see him on Monday.

She has everything you mentioned set up in her bedroom.

She does the relaxation tapes sometimes. They really help with her anxiety.

I need to do them now. I just wish I could make one phone call, and have it all

worked out. The longer I sit and think about it all, the more anxiety I get. I

keep thinking " Oh my god! It's all so screwed up! " I get anxious, and worried.

Then I think " Oh well, it will all work out ok. "

The weirdest thing is that dad isn't even mentioning a thing about it all. It's

like he doesn't want to know anything. He has no idea about where they are in

school or what they are doing.

Well, if he deos mention it some day, and is surprised, then tough!

That's one bad thing about all this. I have to deal with it myself. I'm not

well, and so that makes it harder. I just want to sleep.

[Guest guest]

Hi,

Thanks so much. I try so hard to make them comfortable and happy.

I don't know yet what the school will do for her. I don't even know what her dr

will do for her. Won't know until Monday at the earliest. That really bugs me.

Now knowing. Being in the dark.

I'll let you know when I know. I do know they have to do SOMETHING for her.

She has to get her education!

Hugs,

Mon

[Guest guest]

Hi ,

In grade 10 I started doing 3 out of 4 periods a day for a year or

so, and then 2 out of 4 periods for another year. Then I developed a

chronic pain manifestation in my L knee that kept me flat on my back

for 6 months, and my other joints just never stopped getting worse so

attending school isn't an option. Now I've got 7 credits to go

before I get my diploma and I'm soon 19 :-/ I'm working on two

credits right now through correspondence schooling on teh internet.

This is a canadian group (I live in Ontario) and it works very well

for me: www.amdec.ca Its a very slow process compared with the

regular way...but eventually I'll get there.

It can be done! I'd try pearing down her school time a bit and see

if that helps!

Take care....

-Rhea