Re: (unknown)

October 21, 2001

Dear tammie

I posted my thought on our experience on oct 12. @ 11:24pm (sorry not

up to re-typing. plus I already deleted it. if you can't find my post, ask

me to write again.

yvonne and bryan

Re: [ ] (unknown)

>Has anyone done Dr. Goldberg's protocal? It makes

>sense to me but so does chelation.

>

>Thanks,

>Tammie

>

>>

>> __________________________________________________

>>

October 21, 2001

Tammie - This is from another , also with a Dr. G. experience - one and

a half years' worth. If you're interested, feel free to e-mail me. I feel bad

criticizing a doctor on a list, but not so bad one-to-one.

(in California)

October 21, 2001

Thank you for your post. I found it and appreciate

your experience. We are to go to Dr. G. in a couple

of weeks and I am having second thoughts. I believe

that he is only piece of the whole puzzle. I also

believe in supplements. I think that he is great at

working with gut issues. In your opinion would you

suggest still going to see him? Or, could a gastr dr.

do the same things? I have had trouble communicating

with that office and that has bothered me some.

I really appreciate your input.

Tammie

--- Marco <moncherie@...> wrote:

> Dear tammie

>

> I posted my thought on our experience on oct

> 12. @ 11:24pm (sorry not

> up to re-typing. plus I already deleted it. if you

> can't find my post, ask

> me to write again.

>

> yvonne and bryan

>

> Re: [ ] (unknown)

>

> >Has anyone done Dr. Goldberg's protocal? It makes

> >sense to me but so does chelation.

> >

> >Thanks,

> >Tammie

> >

> >>

> __________________________________________________

> >>

October 21, 2001

In a message dated 10/21/01 1:32:07 PM Pacific Daylight Time, ccmcphe@... writes:

Not the places I lost! Under my arms, chest, legs, and other places I

can't mention! Head hair still there (last time I looked)

-Clyde

Last time you looked? I find that I can go several days without looking in the mirror. (However, I'm a jobless female with a short haircut, so keeping clean is and tidy is all I need to do.) I view my current appearance as "being in costume" for a new role. I find that approach to be much more comfortable than seeing myself as a damaged version of "how I'm supposed to look." Maybe next month I'll get around to boxing up my fancy work clothes and high heels and sending them off. I've been saying that for quite a while, of course.

Harper (AIH 5/00)

October 21, 2001

Not the places I lost! Under my arms, chest, legs, and other places I

can't mention! Head hair still there (last time I looked)

-Clyde

October 22, 2001

I've done the fatty acid test...very helpful, except the dr's rarely know

how to interpret them. Purchase " THE ZONE " which talks about fatty acids

Kathy

[ ] (unknown)

> Hi,

>

> Has anyone here in the group had any experience with BodyBio? The

> tests sound very promising. The link is at

> http://www.bodybio.com/products.html

>

> Thanks,

>

October 22, 2001

In a message dated 10/21/2001 6:05:00 PM Eastern Daylight Time, flatcat9@... writes:

I view my current appearance as "being in costume" for a new role. I find that approach to be much more comfortable than seeing myself as a damaged version of "how I'm supposed to look."

Oh how I wish I had that outlook early on! Seven years & I'm still working on it! Thanks! I'll paste that one on the computer as a reminder.

Hugs

Judie

October 22, 2001

In a message dated 10/22/01 4:12:54 PM Pacific Daylight Time, JudieV@... writes:

:

I view my current appearance as "being in costume" for a new role. I find that approach to be much more comfortable than seeing myself as a damaged version of "how I'm supposed to look."

Oh how I wish I had that outlook early on! Seven years & I'm still working on it! Thanks! I'll paste that one on the computer as a reminder.

Hugs

Judie

Hey, I'm still working on it. This week I will visit relatives I haven't seen in a long time, and I feel strange packing those huge pants with elastic waists, big overblouses, and lace-up shoes I bought this year, instead of the little red skirt and heels I liked last year. I don't look forward to the look of surprise on their faces. My brain knows that's silly, but still - - -. Other times I feel pleasantly in disguise, as if I could go anywhere, see anything, without being noticed. I once heard Ella Fitzgerald, in her later years, sing Girl from Ipanema, lingering wryly on the line "but you don't see me." I'm working toward recognizing the freedom in being inconspicuous, or being noticed only as that fat lady with the sunhat. I can be a neighborhood character! And I'm alive!

Harper

October 22, 2001

I haven't got any miracles for you. But I can tell you that all behavior is

communication. Is your son verbal? Even if he's verbal he may not be able to

tell you exactly what is going on. That's the hard part about autism.

(my son, who is 11) is verbal, using mostly full sentences now (from just a

couple words 2 years ago), but he still doesn't volunteer information easily and

can't tell me when he's having trouble. Some times he acts out because the

material I am trying to teach him is too hard, some times it's because he's

bored because the material is too easy. Some times it's because of a break in

his routine (I just posted about something as small as me taking him to Sunday

school instead of his dad). Maybe your son is like mine, in that he can tell

the people that are honestly interested in him and want the best for him from

the people who are " putting in their time " and can't wait to be done.

I can't imagine a school suspending someone for behaviors. I would think you

have a case for not getting the free and appropriate education. That would just

prove that he needs a *qualified* person to be his aide, not someone off the

street, but someone who is skilled in handling autistic children.

I know I can't really offer any good advice, but just know I'm pulling for you.

I'll pray that this gets straightened out and you find out what's bothering your

son, and can fix it.

Loriann

Wife to Dewight

Mom to , 11 years, Down Syndrome, PDD-NOS and Celiac Disease.

, 2 years and Strong Willed

Both homeschooled.

October 22, 2001

In a message dated 10/22/01 8:26:33 PM Pacific Daylight Time, scott_p@... writes:

I like the idea of being in costume because this is not us.

I'm getting to the point where I can say maybe that is me, and that's just fine. It took a while, though.

On another subject, I spoke with my gastroenterologist today, following my every-two-months (now) lab tests. He said he advises that I continue at 5 mg Prednisone for quite a while longer, perhaps forever. He said that 90% of the AIH patients he's had who've stopped Prednisone have relapsed, and dealing with the relapse is always difficult, requiring higher dosages than before.

I asked him why I began Prednisone at 80 mg (with 100 mg Imuran -- supposed to be 150, but the pharmacy made a mistake), when I hear many people speak of much lower doses. He said he finds that when people are quite ill, as I was, it seems to work well to begin at a high dose, monitor frequently, and then drop as soon as possible.

Harper (AIH 5/00)

October 22, 2001

Ok, anybody have any thoughts. I am on the phone to our doctor regularly.

We are trying to find the right meds (if that's possible, I'm beginning to

wonder). I just can't believe this. From 2 1/2 years of successful full

inclusion to homebound to...what?

[Hochrein, Wayne]

Hello

In some ways this sounds very similar to our son, Zac, age 11.

Zac is a very nice kid, very happy, likes to please people and be helpful.

Not that he is always an angel. We began to notice un-acceptable behavior

during 3rd grade. Things like sitting down when asked to do something,

yelling, some aggressive things like pinching. School noticed some things as

well. It continued to get worse in 4th grade.

We got a behaviorist involved. We started by recording all inappropriate

behaviors and what was immediately before. We think in part he was

frustrated. I don't think he understood how long a task would be, when

doing something he would be doing forever, '5 more minutes' would mean the

same as '5 more years'. or maybe he just couldn't handle the 5 year wait.

Started rewarding good behavior. We struggled with the idea that we were

bribing him. We used the definition that if the reward is offered before

bad behavior it's a re-enforcement. For instance, if he comes in the door

from school, takes off his shoes, hangs his coat up, washes hands, then he

gets a juice box, that's a re-enforcer. So a reward up front is ok. Saying

'if you get off the floor' in the grocery store you'll get a pop is a bribe.

Another thing we did is set clear expectations. We made a visual list of

things that had to be done and then he would get a reward.

So we just made a list of things that he had to do, then would get his break

or his choice of activity.

We also but red dots behind the activities, and as he completed a task he

got to cover the red dots with green dots. When the dots were all green he

could move on. We also used allot of praise, like 'good job'. We had a list

of things to do before he got a juice box, after he put away his shoes he

got a green dot. Got him to check the list, hang up the coat, another dot.

etc.

In some ways it was more work, green dots here and there, but it was less

stressful and less of a power struggle.

We started this full force in around January of this year. The visual

schedule helped immediately in school. The dots for daily activities helped

but needed allot of reminders. I did notice an improvement when we did his

homework. He was more willing to sit down and do it when he knew how many

pages, what activities etc. This year in school they are using the dots in

a couple of places/activities otherwise he is working better for longer

periods of time. So we did this for about 6 months on allot of things. Now

we do it for things that we think might be a power struggle.

I hope this helps.

Wayne

October 22, 2001

Hi ,

I hated to even read your post as I felt I was reliving my year from ----

last year with my 8 yr old son Zeb. I was running back and forth to school

sometimes 15 times a week. I can feel your desperation . He also was in a

inclusive placement and was doing well until. Has the school done a

functional behavioral assessment? Have you asked for a behavioral consult? We

had many reasons for Zeb's behaviors, an inappropriate aide that fueled his

anger and a control issue. The teachers actually lost control by giving in to

his wishes rather than giving a few appropriate choses. The reward system was

not done correctly and not enough constant praise, no cueing of transitions,

not enough sensory breaks, no peer tutoring and I could go on. Anytime a

child is placed on homebound tutoring consitutes a change of placement which

is the most restrictive. Did you agree to this placement? Were you home to

see him try to hit the aide? What exactly happened, get answers. Zeb would do

whatever it took to get mom to school. I was his comfort and represented

security. He hated school and had all kinds of escape behaviors.He had been

very successful in prior years and I knew there were valid resons for these

behaviors. I thought many times of just homeschooling but I can't fill that

social void. He is a very social child and enjoys his classmates. You didn't

give very much information on what grade he is in and to what degree he is

included in the general curriculum. Zeb was actually made to feel like a

visitor in his classroom and this did nothing to help him feel self

accomplished. I have worked very closely with the school to develop a good

program but having the only elementary student in this type of placement in

our district is not easy. Our district has no program to model from. Does

your district have a set program? I think you need to find out what goes on

in that classroom and get specifics on the behaviors and when.The school can

suspend him legally for up to ten days but I would get as much info as I

could and call a PPT meeting.It is hard enough to deal and work with our kids

but when your battling the district it is sometimes more than anyone can

handle.I pray you find some answers.

Charlyne

Mom to Zeb DS-? 8

October 22, 2001

Harper,

Tonight I

was going through pictures as I am putting together a website of my experiences

with AIH and transplant. I am basically (in my mind) a regular, physically fit

person. Starting in 1992 I started blowing up then down (mostly up) from

prednisone. I never considered this blown up person myself, as I know who I am.

My sister and others have complimented me on how I coped with it. Actually I

ignored it because it isn’t me. I was comfortable enough with myself and enjoyed

being with people enjoy. I was not sexy and gorgeous anymore, but hat was ok, I

like the idea of being in costume because this is not us. It is the drugs, the

drugs that keep us alive. So relax, wear something comfortable and large and

have fun with your relatives. The point is you are alive! There is nothing

damaged about us. Just tired.

Patty aih

80 transplant 98

-----Original

Message-----

From: flatcat9@...

[mailto:flatcat9@...]

Sent: Monday, October 22, 2001

9:34 PM

Subject: Re: [ ]

(unknown)

In a

message dated 10/22/01 4:12:54 PM Pacific Daylight Time, JudieV@... writes:

:

I view my current

appearance as " being in costume " for a new role. I find that

approach to be much more comfortable than seeing myself as a damaged version of

" how I'm supposed to look. "

Oh how I wish I had that

outlook early on! Seven years & I'm still working on it! Thanks! I'll paste

that one on the computer as a reminder.

Hugs

Judie

Hey, I'm still working on it. This week I will visit relatives I haven't

seen in a long time, and I feel strange packing those huge pants with elastic

waists, big overblouses, and lace-up shoes I bought this year, instead of the little

red skirt and heels I liked last year. I don't look forward to the look

of surprise on their faces. My brain knows that's silly, but still - - -.

Other times I feel pleasantly in disguise, as if I could go anywhere, see

anything, without being noticed. I once heard Ella Fitzgerald, in her

later years, sing Girl from Ipanema, lingering wryly on the line " but you

don't see me. " I'm working toward recognizing the freedom in being

inconspicuous, or being noticed only as that fat lady with the sunhat. I

can be a neighborhood character! And I'm alive!

Harper

October 22, 2001

Wayne ,

Just wanted to thank you for sharing this information on what you're

doing with Zac , I read something about the dots , but I did not

pursue the issue . This is amazing news , what an accomplishment .

Thanks.

Irma, 13,DS/ASD.

>

> Ok, anybody have any thoughts. I am on the phone to our doctor

regularly.

> We are trying to find the right meds (if that's possible, I'm

beginning to

> wonder). I just can't believe this. From 2 1/2 years of

successful full

> inclusion to homebound to...what?

> [Hochrein, Wayne]

>

> Hello

> In some ways this sounds very similar to our son, Zac, age 11.

> Zac is a very nice kid, very happy, likes to please people and be

helpful.

> Not that he is always an angel. We began to notice un-acceptable

behavior

> during 3rd grade. Things like sitting down when asked to do

something,

> yelling, some aggressive things like pinching. School noticed some

things as

> well. It continued to get worse in 4th grade.

>

> We got a behaviorist involved. We started by recording all

inappropriate

> behaviors and what was immediately before. We think in part he was

> frustrated. I don't think he understood how long a task would be,

when

> doing something he would be doing forever, '5 more minutes' would

mean the

> same as '5 more years'. or maybe he just couldn't handle the 5 year

wait.

>

> Started rewarding good behavior. We struggled with the idea that we

were

> bribing him. We used the definition that if the reward is offered

before

> bad behavior it's a re-enforcement. For instance, if he comes in

the door

> from school, takes off his shoes, hangs his coat up, washes hands,

then he

> gets a juice box, that's a re-enforcer. So a reward up front is ok.

Saying

> 'if you get off the floor' in the grocery store you'll get a pop is

a bribe.

>

> Another thing we did is set clear expectations. We made a visual

list of

> things that had to be done and then he would get a reward.

>

> So we just made a list of things that he had to do, then would get

his break

> or his choice of activity.

>

> We also but red dots behind the activities, and as he completed a

task he

> got to cover the red dots with green dots. When the dots were all

green he

> could move on. We also used allot of praise, like 'good job'. We

had a list

> of things to do before he got a juice box, after he put away his

shoes he

> got a green dot. Got him to check the list, hang up the coat,

another dot.

> etc.

>

> In some ways it was more work, green dots here and there, but it

was less

> stressful and less of a power struggle.

>

> We started this full force in around January of this year. The

visual

> schedule helped immediately in school. The dots for daily

activities helped

> but needed allot of reminders. I did notice an improvement when we

did his

> homework. He was more willing to sit down and do it when he knew

how many

> pages, what activities etc. This year in school they are using the

dots in

> a couple of places/activities otherwise he is working better for

longer

> periods of time. So we did this for about 6 months on allot of

things. Now

> we do it for things that we think might be a power struggle.

>

> I hope this helps.

>

> Wayne

>

October 22, 2001

Wayne,

thanks for the info on the red and green dots. I recall learning that a few

years ago but had forgotten it. I cut up parts of your post and sent it to my

slp, minus your name and all. I am thinking we can use the same strategies to

get Angel through speech sessions and other undesired activities. your note

about whether your son could understand the length of time a task would take

really made me assess this in my daughter. I have been using an egg timer to

help her to understand how long she will need to wait for her turn on the

computer, as well as when her turn is has completed. I am thinking that using

the egg timer to complete speech activities (beginning with very short intervals

and then increasing) as well as giving her a visual schedule of speech

activities, along with the dots, will likely be a great help to her. I also

liked the explanation of rewards vs bribes.

Thanks for sharing this strategy.

Cheryl,

mom to Angel, 5, DS-ASD

RE: (unknown)