An Update and a Caution for members post Dr. Phil

[Guest guest]

Hi all,

It continues to be a busy time with regard to the fallout after the

Dr. Phil show.

First, I want you to know that I wrote Jon Colman, the Exec Director

of NDSS last night, and as the Project Director of the DS-Autism

Information Center AND as a member of their clinical advisory board

expressed my dismay with the tone of their letter.

I first presented on this dual diagnosis at an NDSS conference in

1999. They didn't bother to contact me, or probably anyone, before

writing this letter. BAsed on teh statistics they quote, there are up

to 28,000 people with this dual diagnosis in the US. And that does not

include those who have complex needs without a dx of autism.

It is no longer posted.

Second and ***VERY IMPORTANT***

Beth has been very diligent in approving list members. After

the students who were signing up to lurk and learn for their projects,

we have taken a policy of not approving membership to people who are

not families. Although this limits our access to professionals, I

suppose, it also allows all of you to have some semblance of privacy.

There are, of course, easy ways around it.

Today we had a request from a freelance writer to join our group. I

wrote a nice letter denying his request, and suggested that he send me

an email I can forward to the group for those who would want to be

interviewed. We'll see if he responds.

However - as i said earlier - it would not be hard for a reporter to

find a way to join our group and lurk.

So please, for the time being, be cautious about what you say on the

list. It pains me to say this - we had to do it one other time when

someone was in a legal crisis - but I think it's in everyone's best

interest to think of this list as a public place for the next month or so.

I care deeply about everyone here - and want only the protection of

your families and the freedom for you to receive support.

Thanks so much,

Joan

Joan Guthrie Medlen, R.D., L.D.

Program Director, Creating Solutions

Home of the Down Syndrome - Autism Information Center

TheEditor@...

www.creating-solutions.info

www.disabilitysolutions.org

[Guest guest]

Joan,

Thank-you for representing us so well and giving us good direction

in how to proceed in the days ahead. I am one who finds the

greatest support for my situation in this listserv. It is a

precious resource, and one not to be taken lightly. I cannot say

what might have happened had I not been told of the existence of

this listserv and the disability solutions newsletter. I know that I

was on the point of desperation. The help I received here caused me

to move forward until I found the help I needed to rightly diagnose

my son's disability, and to find better support for him in his

schooling.

I know the desperation that a parent can feel when you cannot get

the help you need. I support Cyndi in finding a way to bring change

to her situation, but I also am aware that not everyone wants to

invite media into their situation. I can see both sides. But this

forum is precious to ALL of us. Protesting our freedom to express

ourselves is important.

Thank-you for helping us to find a way to " stick together " and

remain a supportive group. I am so glad we have someone as the helm

that has a cool head AND a strong voice. And I am grateful that you

have help in doing this job.

Sincerely,

Donnell Kenworthy

[Guest guest]

Amen.

From: [mailto: ] On

Behalf Of Donnell Kenworthy

Sent: Friday, March 28, 2008 12:43 PM

To:

Subject: Re: An Update and a Caution for members post Dr.

Phil

Joan,

Thank-you for representing us so well and giving us good direction

in how to proceed in the days ahead. I am one who finds the

greatest support for my situation in this listserv. It is a

precious resource, and one not to be taken lightly. I cannot say

what might have happened had I not been told of the existence of

this listserv and the disability solutions newsletter. I know that I

was on the point of desperation. The help I received here caused me

to move forward until I found the help I needed to rightly diagnose

my son's disability, and to find better support for him in his

schooling.

I know the desperation that a parent can feel when you cannot get

the help you need. I support Cyndi in finding a way to bring change

to her situation, but I also am aware that not everyone wants to

invite media into their situation. I can see both sides. But this

forum is precious to ALL of us. Protesting our freedom to express

ourselves is important.

Thank-you for helping us to find a way to " stick together " and

remain a supportive group. I am so glad we have someone as the helm

that has a cool head AND a strong voice. And I am grateful that you

have help in doing this job.

Sincerely,

Donnell Kenworthy

[Guest guest]

Joan: Glad you contacted NDSS. I was surprised by their comments, and very

discouraged about them not accepting what our lives are like. The show wasn't

about the Down syndrome, it was about life with a child who has Autism,

complicated by the challenges of the Down syndrome. Please let me know if I can

help in any way.

Liz

An Update and a Caution for members post Dr. Phil

Hi all,

It continues to be a busy time with regard to the fallout after the

Dr. Phil show.

First, I want you to know that I wrote Jon Colman, the Exec Director

of NDSS last night, and as the Project Director of the DS-Autism

Information Center AND as a member of their clinical advisory board

expressed my dismay with the tone of their letter.

I first presented on this dual diagnosis at an NDSS conference in

1999. They didn't bother to contact me, or probably anyone, before

writing this letter. BAsed on teh statistics they quote, there are up

to 28,000 people with this dual diagnosis in the US. And that does not

include those who have complex needs without a dx of autism.

It is no longer posted.

Second and ***VERY IMPORTANT***

Beth has been very diligent in approving list members. After

the students who were signing up to lurk and learn for their projects,

we have taken a policy of not approving membership to people who are

not families. Although this limits our access to professionals, I

suppose, it also allows all of you to have some semblance of privacy.

There are, of course, easy ways around it.

Today we had a request from a freelance writer to join our group. I

wrote a nice letter denying his request, and suggested that he send me

an email I can forward to the group for those who would want to be

interviewed. We'll see if he responds.

However - as i said earlier - it would not be hard for a reporter to

find a way to join our group and lurk.

So please, for the time being, be cautious about what you say on the

list. It pains me to say this - we had to do it one other time when

someone was in a legal crisis - but I think it's in everyone's best

interest to think of this list as a public place for the next month or so.

I care deeply about everyone here - and want only the protection of

your families and the freedom for you to receive support.

Thanks so much,

Joan

Joan Guthrie Medlen, R.D., L.D.

Program Director, Creating Solutions

Home of the Down Syndrome - Autism Information Center

TheEditor@...

www.creating-solutions.info

www.disabilitysolutions.org

[Guest guest]

>

> Joan: Glad you contacted NDSS. I was surprised by their comments,

and very discouraged about them not accepting what our lives are

like. The show wasn't about the Down syndrome, it was about life

with a child who has Autism, complicated by the challenges of the

Down syndrome. Please let me know if I can help in any way.

>

> Liz

>

> An Update and a Caution for members post Dr.

Phil

>

>

> Hi all,

>

> It continues to be a busy time with regard to the fallout after

the

> Dr. Phil show.

>

> First, I want you to know that I wrote Jon Colman, the Exec

Director

> of NDSS last night, and as the Project Director of the DS-Autism

> Information Center AND as a member of their clinical advisory

board

> expressed my dismay with the tone of their letter.

>

> I first presented on this dual diagnosis at an NDSS conference in

> 1999. They didn't bother to contact me, or probably anyone, before

> writing this letter. BAsed on teh statistics they quote, there

are up

> to 28,000 people with this dual diagnosis in the US. And that

does not

> include those who have complex needs without a dx of autism.

>

> It is no longer posted.

>

> Second and ***VERY IMPORTANT***

>

> Beth has been very diligent in approving list members.

After

> the students who were signing up to lurk and learn for their

projects,

> we have taken a policy of not approving membership to people who

are

> not families. Although this limits our access to professionals, I

> suppose, it also allows all of you to have some semblance of

privacy.

>

> There are, of course, easy ways around it.

>

> Today we had a request from a freelance writer to join our group.

I

> wrote a nice letter denying his request, and suggested that he

send me

> an email I can forward to the group for those who would want to be

> interviewed. We'll see if he responds.

>

> However - as i said earlier - it would not be hard for a reporter

to

> find a way to join our group and lurk.

>

> So please, for the time being, be cautious about what you say on

the

> list. It pains me to say this - we had to do it one other time

when

> someone was in a legal crisis - but I think it's in everyone's

best

> interest to think of this list as a public place for the next

month or so.

>

> I care deeply about everyone here - and want only the protection

of

> your families and the freedom for you to receive support.

>

> Thanks so much,

> Joan

>

> Joan Guthrie Medlen, R.D., L.D.

> Program Director, Creating Solutions

> Home of the Down Syndrome - Autism Information Center

> TheEditor@...

> www.creating-solutions.info

> www.disabilitysolutions.org

>

>

>

>

>

>