....your response to me.

[Guest guest]

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No need to apologize to me because my mother has cancer. I would have

mad that post regardless.

I have just read that you are now concerned about your son's welfare.

I hope that you are able to work things out so that he is safe and in

an environment where he thrives, feels respected, and has nothing but

the best support.

My post - and it's tone - is a direct reflection of what I saw and

read when I signed on to post an update about my absence. Multiple

posts that are very intense - members sharing information freely - and

then subject lines that appear to BEG them to continue or something

very bad would happen tomorrow.

What I could not find, despite reading all the posts, searching the

internet for your position and organization, doing a reverse phone

search on the phone number listed, and so on, is something that would

bring credibility to the desperate sounding search for information. So

I challenged you for some sort of a PLAN for use of the information

members were freely sharing. Some of which probably brings out some

very intense emotions - as you well know since your son is in a bad

situation right now.

It's not personal. The approach used did not reflect the

professionalism I would expect from someone who is suggesting they

will be providing information to Obama's team. (can't remember how it

was phrased, but that is what you have insinuated).

Quite frankly, there is a consortium of advocacy groups that work on

these issues that has lost it's lustre the last few years, true, but

where a plethora of information is kept. Weiss, the former

Executive Director of TASH was a **champion** in uncovering programs

that use abusive methods and taking action.

So, I stand by my post, and my tone, and my request to learn just

exactly what are you planning to DO with the information you have

gathered here? What sort of report will it go into? Whoh will deliver

it? The OAAC that *I* found is not in Hawaii. Can you tell me more

about your organization and your role with them?

I am not " Senior " anything. I am a Mom of an adult who has Down

syndrome and other disabilities. I look for tangible solutions. I

participate in projects that are clear about their intent, scope, and

process. I believe the people who are members of the list I started

have the right to know exactly who you are - the requester of

information from them - WHAT your plan is for this information, and

the organization(s) you are affiliated with.

It is this reason that we now screen members and do not allow students

to join our list. They were listening in, asking questions, and doing

HOMEWORK about the experience. We're not people's projects.

We're people who want to be the BEST parents we can and who want to

make a difference along the way.

And as listowner, I often get in trouble for feeling the need to speak

up more like a parent in the group...wanting to be sure that people

are " protected " in this safety zone they have found.

Good luck with your son.

Sincerely,

Joan

Joan Guthrie Medlen, RD, LD

List Owner

Director, Creating Solutions, home of DS-Autism Information Center

Executive Director, Disability Navigators

Clinical ADvisor of Health Literacy and Communications, Special

Olympics, Inc.

Board Member, Down Syndrome Education - USA

US Exectuive Editor, Down Syndrome Research and Practice