Gail

[Guest guest]

gail,

i just gotta confirm, that GUY WAS HOT. lol and of course we drooled. :-) i bet

inside you were too, just weren't gonna let becky see ya drooling. hehehehhe

and i will admit ashton and i are very close and on many levels more like sister

and sister than mommy daughter. everyone always assumes i am her sister and not

her mother....... olol works for me...... no matter what she is i love her...

and gail is a hoot.. i can't wait to catch up wither again. i have now met

donna, gail, joan, laura, carol-trishas mom and ummmmmmm GOING to see

char this summer so zeb and ashton can line up videos...... lool

[Guest guest]

Hey Irma!

No, I call that Mama Lion power! LOL I'm sure glad Charlyne gave me the

strength to lay down the law to the district. LOL I'm still shocked they

jumped

to and gave Seth the things he needed so quickly. Come to find out, the

Rifton chair has never been in his IEP, yet he has used one for four years.

Seth

won't do anything if I'm in the classroom. I watch through the door or hide

in the room. All I had to do is put a sheet of paper over my face and Seth

didn't know I' was there. LOL This year he is more aware, so I stand outside

the door. I didn't let him go to school until everything was set up in the

classroom. That's why they threatened to report me. Like it was MY fault they

weren't prepared? LOL I had the support of the teacher in that decision too.

There are only 5 kids in the class, but after I took Seth in to visit the

class and meet the teacher, she agreed that without the Rifton and PECS, it

would

be wasted time for all of them. LOL His teacher is very nice and very open

to suggestions. We talked 3 or 4 hours about what he likes, dislikes and how

to handle situations. She has done everything I have asked. Looks like we

are going to have another good year! YIPPEE!!!!!!!!! Hope s year goes

well too.

Gail :-)

> Hi Gail,

>

> WOW!!

>

> Call that " Parent Power. "

>

> You go girl! Boy, did you tell the superintendent. Glad Charlyne was

> able to help you out. I say she is Queen of IEP/School district

> guru.

> May Seth have a good school year.

> Gail, what have they told you in regards to getting the class set

> up? Are you going to have to volunteer your time to set it up.; )

> Bet, Seth would love to have his mom in the classroom. Don't want to

> waste precious time. ; )

> I'm shocked and happy you took some action. I know you hate battling

> but hey gotta work as a team if possible.

>

> Congratulations on your new computer, glad you're back. : )

>

> Irma,15,DS/ASD

>

[Guest guest]

Hi Gail,

WOW!!

Call that " Parent Power. "

You go girl! Boy, did you tell the superintendent. Glad Charlyne was

able to help you out. I say she is Queen of IEP/School district

guru.

May Seth have a good school year.

Gail, what have they told you in regards to getting the class set

up? Are you going to have to volunteer your time to set it up.; )

Bet, Seth would love to have his mom in the classroom. Don't want to

waste precious time. ; )

I'm shocked and happy you took some action. I know you hate battling

but hey gotta work as a team if possible.

Congratulations on your new computer, glad you're back. : )

Irma,15,DS/ASD

[Guest guest]

In a message dated 9/22/2003 1:27:40 PM Pacific Standard Time,

smilinggail@... writes:

> Rifton chair

What is the Rifton chair? It is so encouraging when you find a wonderful

teacher who will listen. Hope this year is fantastic for you Gail and Seth.

Louise

[Guest guest]

Hi Gail,

" Mama Lion power " , grr.......indeed!

Yes, you would of had a case if the PEC was not used. That is

awesome that you and the teacher had your talk. I highly recommend

that written down of what Seth likes or dislikes and keep it on his

files. A student profile.

Yippee on the teacher!

Go Seth!

Hugs!

Irma,15,Ds/ASD

[Guest guest]

In a message dated 9/22/2003 9:23:39 PM Eastern Standard Time,

LOUANDY@... writes:

> What is the Rifton chair? It is so encouraging when you find a wonderful

> teacher who will listen. Hope this year is fantastic for you Gail and Seth.

>

> Louise

Hi Louise,

A Rifton chair is a kind of constraint. I don't think of it that way, but

that is what it's considered. Seth's is a chair on a wheel base, has a

positioning cushion, a tray and a belt. I feel it gives him MORE independence,

not

less. He can feed himself in it, focus on a task put in front of him and he

seems settled safe, and comfortable in it. If we didn't use it for meals, he

would be all over the place and I would end up redirecting him back to the table

through the whole meal. If they didn't use it for circle time at school, the

same thing would happen and nothing would get accomplished. Those are the

only two times I have approved of it's use for Seth in the classroom. I don't

want it over used or used just to restrain him to make life easier for the

staff. Yes, Louise, it sure is nice when you get a teacher that thinks what you

have to say is worth considering!

Gail :-)

[Guest guest]

In a message dated 9/22/2003 5:37:06 PM Eastern Daylight Time,

ICANFIELD@... writes:

> Yes, you would of had a case if the PEC was not used. That is

> awesome that you and the teacher had your talk. I highly recommend

> that written down of what Seth likes or dislikes and keep it on his

> files.

Yes, and get it in writing on the IEP

Charlyne

[Guest guest]

At 09:36 PM 9/22/2003 -0400, you wrote:

>A Rifton chair is a kind of constraint. I don't think of it that way, but

>that is what it's considered. Seth's is a chair on a wheel base, has a

>positioning cushion, a tray and a belt.

If you do not use the chair as a " restraint, " then it isn't one. If Seth

can get out of the chair (assuming it's safe) at most any time--even if he

has to request it--the way you describe it's use is not as a constraint or

restraint. It is providing the support he needs to focus on tasks such as

feeding and writing. We use an all terrain wheel chair with Andy. He likes

to havve the belt on when we're going about, but he is able to ask to stop

and get out at any time. It has made him feel safe in crowds and expanded

his world. That is important. When he was younger and I took him to 1-1

therapy, he PREFERRED a chair with a tray....a wooden one at that. He liked

it.

When a chair--any chair--is used improperly, a child is put there when they

are out of control and then restrained while they fight against it. This is

inhumane and wrong.

There is a great deal of difference here.

Joan

[Guest guest]

We also have a Rifton chair. We only use it for meals. Never to

restrain JJ. I am using it for a feeding table for the little one I

just started watching. We have a large stroller that is JJ's 'safe

place' when we are out. He prefers to be in it with the belt on.

On Monday, September 22, 2003, at 06:46 PM, Joan Medlen wrote:

\

[Guest guest]

What am I doing wrong? If I change the subject name the email doesn't go

through at least I didn't get it. Here is an example when I sent the email

below. Louise

Subj: Re: Re: Rifton chair 

Date: 9/22/2003 8:27:52 PM Pacific Standard Time

From: <A HREF= " mailto:LOUANDY " >LOUANDY</A>

<A HREF= " mailto: " > </A>

Thank you Gail, I learned something new today.  Louise

[Guest guest]

Allright talking about restraining chairs this is my story this week.

We are at a new school this year and on Wednesdays we arrive to school late

as Hannah has private therapy in the morning. So when we get to school they are

at circle time and I got Hannah a carpet square and down she sat. The teacher

stopped teaching and said " oh my gosh she's actually sitting " and I'm

thinking ok, what's the big deal here. Well, after circle time they went to the

tables to work and they put Hannah in a chair with a velcro belt around her

waist.

I asked her if they always restrained the kids this way and I honestly can't

remember what she said. I asked her if they had any chairs with arms on them as

that is what they used last year and it was very helpful in that Hannah could

push herself up out of the chair and when you push it in to a desk it does

give a little bit of containment. No, they didn't have any of those chairs. So I

called her Kindergarten teacher to see if I could get Hannah's chair from

last year and it'll be on it's way over with a video showing Hannah at circle

time last year clearly sitting on her own accord without being restrained. Sorry

to go on and on, but golly, my kid's not an animal.

Bummed,

a

(Hannah 6 1/2 DS/Aut)

[Guest guest]

a:

Good for you. We never used the belt when Andy was in the " work chair " that

he liked at the tutors and we took the tray off immediately when he wantd

to get up.

I think people are simply lazy or tired of trying to redirect kids or tired

of making desk work actually interesting and motivating. Andy sits when it

intests him and if it isn't interesting, why do it???

j

[Guest guest]

I think "Gill" is my alternate personality. LOL No problem. You would think after 38 years I could spell my own name! That or my spell check would have caught it!

Gail

Gail

Hi Gail,You signed your post Gill, so sorry but I thought that was your husband. I think you just hit the wrong key. I knew gkimball was your email, anyways I am tired. About Isabella.....I know I don't even need to ask this but could everyone please respond to Lori about Isabella? She is very worried about her and she is little like , 6 months old. We spoke yesterday on the phone. Thanks everyone. Night Night!

[Guest guest]

-

Morning Arthur,

-- In oxyplus , " aluckower " <aluckower@n...> wrote:

> i was thinking about your situation

## Thanks, somehow it's nice to be thought about.

>

>> also, clay baths might work for you in soothing and also drawing

out toxins that are in the sores or just below the skin. clay is

powerful in its own right and might be an equal to ozone.

## Actually, I am starting to have very good results with this diet

I've been on, which I will post about in another post. It's pretty

awesome.

>

> another thing that might help is trying some of these raw fats in

high doses. supposedly these will draw toxins through the bowel

bypassing the liver and not causing further strain. and maybe it

could help take some of the sting away from the rashes.

## Yeah, I get lots of good fats on this plan. All kinds of stuff

like butter, avocado, olive, coconut and various nuts.

>

>>

> are you able to do any liver flushes or is it too difficult? have

you talked with mr tracy. maybe he might have some suggestions.

## Yeah, I've done a few. I'm kind of tired of flushing now, tho.

>

> i am not 'officially' recommending marijuana

## Say what???!!! LOL

Gail

>

>

>

>

>

>

[Guest guest]

Gail,

I have finals this week, but should have some more time next week to put my thoughts on paper in re: to the medical portfolio.

I know we can come up with a simple, standard format that will help out a lot.!!

Thanks for agreeing to help!

talk soon,

HRH

[Guest guest]

Gail,

I have finals this week, but should have some more time next week to put my thoughts on paper in re: to the medical portfolio.

I know we can come up with a simple, standard format that will help out a lot.!!

Thanks for agreeing to help!

talk soon,

HRH

[Guest guest]

Sounds good!

Lets talk then

HRH

[Guest guest]

Hi,

How did it go today? Hows ?

I wanted to ask if you could forward some articles on Vater Syndrome to me, when you get a chance.

in Wyoming would love to speak to someone on the phone about all of this. Her babe is only 10 weeks old, so she is real new to all of this.

Let me know when you have some free time...(lol) and maybe you can exchange telephone #'s with her.

Thanks alot Gail!

sincerely,

HRH

[Guest guest]

Well, I don't know if I would say "it can't be any worse...." but after looking at it, I would say that the Cervical neck ring is the "old version" of the what 's brace has. I mean, has a TLSO with a Cervical extension on the Left side which pushes her head to the right. And, aesthetically, it is a much nicer looking piece of equipment. The Cervical collar that you sent looks way too mechanical.

I would HATE to have her wearing that!

Gail

Gail

GailHere is a picture of a cervical neck ring I found while looking into the Milwaukee brace. I know it looks horrible but it can't be any worse than the brace is currently in.http://milwaukee.brace.nu/Head/CervicoThoracic.jpgCelia

[Guest guest]

Can I put a pic of up on the photo collage? She isnt in a cast, but who cares...

I would really like to see our little "bowler" up there, so pls consider..

talk soon,

HRH

I want to put up all CAST Support Group kiddos, so pls think about it.

[Guest guest]

Of course I don't have a problem with this. You can list and Mo as the "token" Congenital kids in the group. LOL

I will send you one if you like of in her brace.

Gail

Re: Re: Gail

Can I put a pic of up on the photo collage? She isnt in a cast, but who cares...I would really like to see our little "bowler" up there, so pls consider..talk soon,HRHI want to put up all CAST Support Group kiddos, so pls think about it.

[Guest guest]

Thanks for the kind words. My husband was sick for a couple of years and seeing many specialists. They just never tested him for Hep C until it was too late for treatment. He told me as soon as he knew and I got tested and had a biopsy. There was no fibrosis at that time. I'm scheduled for another one in November because my viral load has increased according to the last blood tests. I'm trying very hard to quit the alcohol, have even signed up with a few web groups of people struggling through the same thing. I think I have good doctors now so the rest is up to me. It has been good to read the posts here and learn how others cope. I keep reading and try to do a better job responding.

Tina

-----

[Guest guest]

,

I am sorry you are having such a hard time with the drs! Sounds like you made a great choice to switch.

My has torticollis as well as the Congenital Scoliosis. She, too, has hemivertabrae and fused ribs.

The offer still stands if you need/want some help.

Gail

Gail

Gail,thanks for the idea. I really should write a letter to her original ortho. She took the first x ray, which we had to beg for. HEr only recommendation was to get an MRI for tethered cord. HEr curve was 24 degrees at 6months old. She did not notice her ribs being fused or anything, my husband noticed this when I showed him the xrays when we got home. After the MRI, she said we didn't need to come in (through her nurse of course) She was not able to explain the x ray or anything. that is why we switched. We had been referred to PT, we had been stretching her neck for torticollis, not knowing that she had the hemivertebrae in her neck. I almost wanted to throw up knowing that we had been doing all that stretching when the bones were abnormal. The MRI clearly showed the cervical HEmi, but the reader DR. did not notice it. I did not know how to look at the MRI at the time. etc....anyway, the PT at the time suggested that we write her a letter. I never did, but, maybe I should just write her a letter and ask for the original x ray on a cd. I do have a copy, but then I am making copies of copies and I worry about the quality. I will write a letter, I just have to make myself.Thanks,

[Guest guest]

Hey Gail;

My best to you and - please stay well for all of the rest of your family. My thoughts and prayers are with you all.

~guin

[Guest guest]

I already did. The insurance won't pay for the meds, so we're trying to get my without it. I'll be fine. I'm a survivor and I am kicking some dragon ass -- just not always enthusiastically!

De

Faith is the ability to not panic.

-----Original Message-----From: Gail Deveaux [mailto:gaila@...] Sent: Monday, November 22, 2004 6:11 AMHepatitis CSupportGroupForDummies Subject: RE: Fw: New Drug Approved by theFDA/...Adult material...Caution

Keep the faith girl you will make it.Your in our prayers.Talk to the doctor about meds for the low hebagloban.

Gail