Gail

March 22, 1999

, we have about 6 articles that help with FMS and disability and

that's $2. and $5. is for the guidebook on CFIDS disability. FMS is looked

at by the gov. as ONLY pain and is put under CFS as identification. If you've

got CFS and FMS, it's better to go with the CFS and use FMS as another

condition that is disabliling you.

The application process and steps you should take, though, can be the same no

matter what the illness is, so the advice in the guide should serve you for

either/or.

Gail

March 22, 1999

Thank you for my papers Gail,

How come my papers are Hylighted in Bright Yellow under .. ....

Intestional gas, irritable bowel ?.....

Nice to have personalized attention ......

Susy dog......

March 23, 1999

In a message dated 3/23/99 3:59:05 PM Eastern Standard Time,

musharina73@... writes:

<< THANKS!!! -- Michele U. >>

You can do so little right now about CFIDS except suffer, that I sometimes

feel selfish wanting to help and feel better about it! You're welcome!

March 23, 1999

Thank you, once again, Gail!! You really have been so

helpful to me..and all of us...and I just want you to

know how much your help and thoughfulness is

appreciated!

THANKS!!! -- Michele U.

--- GAILRONDA@... wrote:

> From: GAILRONDA@...

>

> , we have about 6 articles that help with

FMS

> and disability and

> that's $2. and $5. is for the guidebook on CFIDS

> disability. FMS is looked

> at by the gov. as ONLY pain and is put under CFS as

> identification. If you've

> got CFS and FMS, it's better to go with the CFS and

> use FMS as another

> condition that is disabliling you.

> The application process and steps you should take,

> though, can be the same no

> matter what the illness is, so the advice in the

> guide should serve you for

> either/or.

> Gail

>

------------------------------------------------------------------------

> Ideas on how we can improve ONElist?

>

> Check out the Suggestion Box feature on our new web

> site

>

------------------------------------------------------------------------

> This list is intended for patients to share personal

> experiences with each other, not to give medical

> advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

_________________________________________________________

November 2, 1999

Hi Gail... I know you addressed your letter to Amber but I had to write. My

twins, Rudy (DS) & are 12, almost 13. went to every

therapy session with Rudy starting at 2 weeks old. While the therapist

worked on Rudy, I practiced on . Weeelllll, as a result, my baby

girl started walking at 8 months!! She has done everything faster and

earlier than my older boy, TJ, and of course, Rudy. But she has also been

Rudy's biggest encouragement and cheerleader!! It is hard to watch one

" prosper " and the other struggle but I'll tell you, to be perfectly honest,

Rudy's accomplishments are so much more rewarding because he struggles. He

got off the bottle at 12 months and was eating fairly well with a spoon by 2.

He still drinks funny but whatever works, right? It is about this age (6-8

mos) that you do really start noticing the differences more but Tara will

learn, it will just be on her terms and her time table, just like other

children. A good example is my oldest, who is totally devoid of any

afflictions, was almost 14 months old before he took his first step!!! I'm

rambling now but my point is, it will all come in time. Faith, love, and

patience will keep you strong. Take care.

November 25, 1999

G. McFadden wrote:

> gail, i don't agree with your methods in criticizing

> ampligen, but my self described note was not meant

> for the list and for that i am sorry. you are smart

> in other ways for sure.

Gail,

I know we all seem to have differing views on Ampligen, but there is NO question

that your history of the research of this illness is VERY beneficial to this

list (and to me). There are so many

times that old theories/research is dragged out and presented as " new " , or

presented as half-truths and you have been able to set it all straight. Your

recall and information (much better than

mine) has been invaluable!

Happy Thanksgiving to All!!!!

Marcia

April 23, 2000

Hope you had a great birthday Gail---and a happy Easter, too!

Marcia

Mom to Sara (DS) and 5 and Lucas 9

November 2, 2000

gail,

i think you have made the right decision on home instruction for

theoderea....... as the school says :-) i am astounded at the way school

officials and teachers, paras, ect can act and not be held

accountable........ what was he doing so bad that caused this hold.. i am

mortified,,,,,have you thought of going to the media?????? and exploiting

them..... noone should get away with this treatment...i wish i was there to

hug you, hold your hand, wipe your tears, pour your vodka, bash the school's

heads in, ect...... i tend to think of violent acts when i am pissed beyond

redemption....lollol but i am really a gentle soul....heheheh just knowyour

not alone and we are here for you in any ways you wish.....take care, my

prayers and thoughts to you and ted....... ps what state are you in

November 2, 2000

<<gail,

oh my god!!! gail, i am so sorry to hear about ted's day from hell and

yours

too!!! what behavior would be so bad to cause a three person hold and

abrasions....... jeez, did you take pictures to file charges and to

protect

yourself...... oh i just can't imagine what your going through.....did

you

send him to school today....what did the clinic say?????? you poor

soul....... take care and big prayers coming your way..........>>

Thank you Leah...

I am having a hard day. Everytime the phone rings, my stomach starts

to knot and I just generally feel very stressed. I did video tape it and

took

an instant picture. I also have the documentation from the urgent care

that

he did have abrasions on him. Tomorrow will be his last day. We have

asked for home instruction until they can put a plan that works into

place.

He had to be observed in that setting to write the plan...problem is ...

he is

absolutely delightful when being observed. Seems that when the " eyes "

are

off...who knows what the adults behave like. I'm going to be asking for

a camera in the room so I can log on and see Ted during the day. I think

we will be filing a due process soon. Do they really think they can get

off

with giving our kids any less!

Thanks for caring!

Gail, mom to Theodorea as he is listed in the school directory! gee can

they

get ANYthing right?

November 2, 2000

<<ps what state are you in>>

I am in a suburb of Cleveland Ohio. It is this particular district and

~personal~...I am not the only one with problems with this district.

There are 4-5 other families that are having difficulty. I don't know

them or any specifics...just getting the *picture* though. They have

this stupid form...for when they use a hold...and there is a place that

says " what happened before_______ well...they don't say what they

are supposed to...like what happened just prior to him having a behavior

they do not want. Instead they write " kicked, hit, threw shoes,

scissors,

crayons at teacher and vice principle " I have thought of calling this

station with a segment called 5 on your side...they are problem

solvers...hehe

I guess I think I'd feel foolish or something.

Gail, mom to Ted, aka Theodorea..hheheh

ps.vodka sounds good but only if I could be in a room with you all and

have fun!

January 23, 2001

Hi Pam ,

just had Bobby's 7 yr well visit to the doctor yesterday, so that's when

I just picked up Tara's lab slips, guess you can say, I'm draggin my

feet about this. I'm afraid she really does have celiac disease, and all

the work I'll have to do to find out how to " cook food " and buy food,

gluten free................but I'll get her blood work done probably

tomorrow...........not in the mood for this

Gail...........Bobby, Jillian, and Tara

>

> Hi Gail,

>

> The twins and my neice get along great. Especially

> Hannah and her. cannot walk and she is more of

> the type who likes to stay to herself. But Hannah and

> my neice just run and play all over the place. Hannah

> has learned alot from her. She tries to do everything

> Harley does. I love to watch them play. Hannah is

> really a Big Girl. (well she tries to be)

> I'm sorry your family doesn't come to visit. Some

> people I gyess are uncomfortable around " different "

> children. It's sad though when it's your relatives.

> Have you had the test done yet on Tara to see if she

> has Celiac disease? I hope she doesn't. Always

> something with our kids huh?

> Have a good day,

> Pam mom to Hannah and ID twins

>

> __________________________________________________

>

March 14, 2001

Hi Gail,

4 to 5 weeks in this one and then it's changed to a " broomstick " cast.

Apparently that's where the cast is real short and only on the top of the

thighs with a bar in between the legs. It doesn't include the part around

the butt and up the stomach and back. That means he will be able to wear a

diaper and sit up straight and lie down flat! YAY!!! LOL Hopefully, we

will be able to dump the hospital bed and the reclining wheelchair. He has a

Convaid stroller which we got a couple of years ago because he kept doing the

" drop " thing in parking lots, etc. Go figure! LOL

According to the doc, when he gets out of that cast, he will be in the brace,

which will keep his legs stiff and also has a bar in between, for some time.

I haven't asked

him HOW LONG some time is! LOL There are just some things I don't need to

know yet! LOL Thanks for asking. Terry

March 14, 2001

In a message dated 3/14/01 11:27:45 AM Eastern Standard Time,

Imaddenmom@... writes:

<< I haven't asked

him HOW LONG some time is! LOL There are just some things I don't need to

know yet! LOL Thanks for asking. Terry >>

Terry,

Do you figure he will be out of the cast by summer? That would be rough to

be in a cast all summer. What a long haul you have. I'll keep you in my

prayers.

Gail

March 19, 2001

How bad would I be if I took a large size dog cage and put Seth in it for the

night? LOL JUST KIDDING!!!!!!! LOL

Gail

ROTFLOL Gail! You are too funny! We have the same problem with as

far as taking him other places for the night although our problems have more

to do with his medical equipment and related needs and that he just isn't

comfortable in " strange " settings. " Strange " includes anything that isn't

home! LOL This won't help you for next weekend, but maybe long term... We

have been taking camping since he was 2 yrs. We started out with a

tent and he loved that! He was small enough then that we could sleep him in

a playpen. By the time he was big enough that we couldn't sleep him in a

playpen anymore, we had purchased a small trailer and we used a bunk bed

guard rail to keep him in the bed (besides being hooked up to an enteral

feeding pump all night) Over the years, we tried different models of

trailers and a couple of years ago, we found one that is perfect for us. The

" kids " beds are on the side of the trailer and built in - kind of like a

pullman on a train. put plexi-glass over the window and built a

" gate " that goes over the opening. loves it! When we want to go

somewhere for the night, we take the trailer because it's familiar to

and he does fine in it. If we didn't have it, we would never be able to go

anywhere! LOL

Terry

March 19, 2001

In a message dated 3/19/01 12:33:05 PM Eastern Standard Time,

Imaddenmom@... writes:

<< How bad would I be if I took a large size dog cage and put Seth in it for

the

night? LOL JUST KIDDING!!!!!!! LOL

Gail

ROTFLOL Gail! You are too funny! We have the same problem with

as

far as taking him other places for the night although our problems have more

to do with his medical equipment and related needs and that he just isn't

comfortable in " strange " settings. " Strange " includes anything that isn't

home! LOL When we want to go

somewhere for the night, we take the trailer because it's familiar to

and he does fine in it. If we didn't have it, we would never be able to go

anywhere! LOL

Terry

>>

Terry,

That's a great idea, and we have actually been out to look at some 24 footers

already. My dh retires in a few months and that's what we plan to do, if

money holds out! LOL I never thought about the set up you talked about

though with the bed. We may have to shoot for the trailer sooner. Hmmmmm.

Thanks.

Gail

March 20, 2001

Gail,

We have had 4 or 5 trailers over the years and I had never seen that setup

either. I think it's a Komfort and it's about 22 feet (I think). It fits

the three of us perfectly. As soon as I saw the bed setup, I knew it had

real possibilities! LOL The first thing I think about is will we be able

to sleep at night! LOL Good luck!

Terry

March 20, 2001

>How bad would I be if I took a large size dog cage and put Seth in it for

>the

>night? LOL JUST KIDDING!!!!!!! LOL

>

lol, i owuldnt tell,lol, my DH has often suggested we put one of those dog

shock collors on nathan, he never stays in the yard, we use to have to strap

him in his car seat just to mow the lawn, but now he is a big 9yr old so we

keep him busy on the yard swing or helping one of us mow. shawna.

>From: Imaddenmom@...

>Reply-

>

>Subject: Re: Gail

>Date: Mon, 19 Mar 2001 12:29:37 EST

>

Gail

>

>ROTFLOL Gail! You are too funny! We have the same problem with

>as

>far as taking him other places for the night although our problems have

>more

>to do with his medical equipment and related needs and that he just isn't

>comfortable in " strange " settings. " Strange " includes anything that isn't

>home! LOL This won't help you for next weekend, but maybe long term...

>We

>have been taking camping since he was 2 yrs. We started out with a

>tent and he loved that! He was small enough then that we could sleep him

>in

>a playpen. By the time he was big enough that we couldn't sleep him in a

>playpen anymore, we had purchased a small trailer and we used a bunk bed

>guard rail to keep him in the bed (besides being hooked up to an enteral

>feeding pump all night) Over the years, we tried different models of

>trailers and a couple of years ago, we found one that is perfect for us.

>The

> " kids " beds are on the side of the trailer and built in - kind of like a

>pullman on a train. put plexi-glass over the window and built a

> " gate " that goes over the opening. loves it! When we want to go

>somewhere for the night, we take the trailer because it's familiar to

>

>and he does fine in it. If we didn't have it, we would never be able to go

>anywhere! LOL

>Terry

>

March 28, 2001

In a message dated 3/28/01 7:20:05 AM Eastern Standard Time,

okieleah@... writes:

<< donna dont you use that iwth maddie sometimes

too!!!:-) you gotta do what works in these days!!! >>

Oh absolutely Leah. Last summer, I took many a late night car ride with

Miss Maddie!!!!

Donna

April 8, 2001

Hi Gail,

Your story reminds me of when Brook turned 3 and they didn't have an

appropriate program for him in our area. We made them create an appropriate

program for him because by law they have to. The Director of Special Ed

created a new preschool program in our town, hired a special ed teacher who

was wonderful and he had a great experience there. Before that we tried him

in a program that was for children with learning handicaps which was too

advanced for him and the teacher really fought against having him there. So

she was useless. Then we put him for just a few months in a program that I

thought was absolutely ridiculous and I kept telling them how ridiculous it

was all the time and they had no answers as to why they were proceeding the

way they were. They were transitioning the kids to a new room at the school

every 20 minutes. Many of the kids like Brook could not yet walk and many

had problems with transitions, by the time they settled down or even got to

the new room it was almost time to go to the new room. They had a room for

every different activity. They never got settled in to a self contained

classroom. It was very difficult and I spent a lot of time up there watching

what they were doing. We wrote very strong letters to the Director of

Special explaining how bad this placement was for Brook and what exactly we

wanted for him according to the law and FAPE. Also this ridiculous program

where they moved the kids around every 20 minutes at 3 years old they wanted

send Brook by bus one way 1 hr and 30 or 40 minutes. I ended up driving him

in the morning and they got a special bus driver to pick him up and drive him

home. As I said this only went on for a few months. That summer they had a

new special ed preschool with what I had asked for in place. Seven children

from our town were enrolled. One was not being served at all because she felt

like you that the program was bad and she kept her daughter at home. Anyway

I felt very proud of my achievement and the schools were always wary of my dh

and me ever since. So maybe you can make them create an appropriate program

for Seth and it could be for 4 hours also. Good luck.

Marisa

April 8, 2001

In a message dated 4/8/01 11:45:49 PM Eastern Daylight Time, poggim@...

writes:

<< hey were transitioning the kids to a new room at the school

every 20 minutes. Many of the kids like Brook could not yet walk and many

had problems with transitions, by the time they settled down or even got to

the new room it was almost time to go to the new room. They had a room for

every different activity. They never got settled in to a self contained

classroom. >>

Marisa,

This is what they said they would do with Seth. LOL They would take him out

of the *severe* room and send him to other rooms to meet all his needs.

NOT!!!!! They said that is appropriate placement because all of his needs

would be met. Well, it's not the *least restrictive* environment I don't

believe. I also feel that it's dangerous because he would be in a room with

very large 9 year olds that have behavioral problems. I DON'T THINK SO!!!!!

He's only 36 pounds. I am continuing the fight for a new classroom to be

added. They can't tell me every child they have is either severe or

advanced. I'm sure the fight will continue through the summer as they won't

give in easily. If they don't create a classroom for Seth and the other

middle kids, I will just continue to fight for one whether Seth ever uses it

or not. I just heard that the chairperson of the CPSE meeting visited all

the autistic classes on Friday and observed Seth for over an hour. Hmmmmm,

Maybe I am getting somewhere? I did meet with the director of special ed a

month ago. I thought it was a good meeting as I did stand my ground and

didn't end up crying! LOL Got no answers or solutions, but maybe I put a

little scare in them? Thanks Marisa. Knowing that someone else did it gives

me hope.

Gail

April 9, 2001

Gail,

I basically called every parent advocate I knew and read up on all the

laws, kept calling the school district, kept pressuring them and they were

finally ready to have a classroom just for him since they had to meet his

needs in an appropriate way and they also knew that we were well educated

parents who had done our homework and were not going to go away. If you could

get your own psychologist that maybe you would pay a doctor to write up what

he would require in order for him to learn a self-contained classroom, peers

his age, OT, speech, adaptive PE, etc., that would also help to get them to

create a new classroom or to change their plans. You have to show them that

his needs would not be met under their plan. They also only wanted Brook to

go 2 days a week, instead of 4 or 5 which I wanted, considering he needed so

many repetitions and consistency in order to learn, I thought that was a

terrible idea. So the new preschool program was 4 days a week instead of 2.

You need to say that he needs consistency and many repetitions, etc., you

have to learn the lingo and a parent advocate or someone from this group can

help with that too. That's basically what we did. Also I truly recommend

writing a really good strong letter stating what the laws require and that

you are asking for them to follow the law.

Also, guess what after we left the program with all the constant

transitioning they rethought the way they did things and stopped all the

transitions. I think I had a lot to do with making them rethink that

strategy. AS I said good luck again. I know you want to keep Seth home, but

as you have said you are also looking for reasons to keep him home, so maybe

if you can get him a really good program you would feel better about having

him go to school. Also when Brook was 5 years old he only went on the

kindergarten schedule which was something like 3 hours and 20 minutes I

think. Like from 8:00 to 11:20. He was at that time in a special day class

and also spent a lot of time in kindergarten with a great kindergarten

teacher who just loves Brookie. So we were pretty happy that year. She had

him in her kindergarten class for integration for at least 4 years. He

learned a lot that first year about socializing with other kids.

Marisa

Mom to Miles 14, Brook 11 and Genevieve yrs.

April 9, 2001