Jump to content
RemedySpot.com

Time to Weigh in with a Reality Check.

Rate this topic


Guest guest

Recommended Posts

Guest guest

Hi Everyone.

I'll bet you thought I wasn't paying attention. To the contrary, My

day has been railroaded by the " Dr. Phil " issue. I have been reading

posts for the last 3 hours, trying to get a handle on the mood here.

First, Cyndi, I'm glad the financing is coming through for your trip

to KK and that you have the CARDS gift for the ABA training. As a

first-line of attack for making positive changes in your family life,

both of those things are important. Adequate coaching for medications

and teaching both your son and you, your husband, and family, will help.

I haven't been able to glean where you live? Is it KY? I do know it is

a state that deems SSI/Medicaid on parental income, and that keeps you

from receiving waiver funds or SSI to assist with some ongoing support.

Having said that, there is a strong contingency of people who are

leaders in the DS parent groups who would like to connect with you. We

recognize that these visits and the ABA therapist training are

short-term fixes and that what is needed for is a more holistic

and comprehensive plan that gives everyone a break, time with your

daughter, and coaching for all of you in how to respond and

communicate with . Would you mind emailing me off list

(joan@..., please) so I can help make those connections to the

people who are interested in supporting you?

I've spent a good deal of time today explaining to parent-group

leaders and some from " the nationals " that these sorts of supports are

what is needed for many, many families.

Having said that....

I hope you will all calm down just a little and realize that we are a

diverse set of people with diverse values. That means, that OF COURSE

some people think this was a great method and some people do not. The

same is true for the implementation of the GFCF diet without celiac

diesase.

The issue at hand is this: **First do no harm.**

It's fine to follow your passion, but do not harm those who may want

to be private. When speaking out, remember you are but one voice. Your

voice reflects the opinions and thoughts of many people in our smaller

community, but not all. That's true of ANY issue. Not just this one.

But it is this one that has - for the very first time in the 9 year

history of this list - caused people to post in a way I am upset with.

Respect for all - in all our individuality.

Whether in agreement or not. I've not heard any judgement by those not

in agreement, though I have heard their pain in the few posts.

At the same time, I do understand the judgment that is coming from the

general public and folks in the DS community who are less enlightened.

Being in that position can make it hard to see the difference between

mean-spirited, judgmental attacks and a difference of opinion.

I won't say that going on the show caused harm. But our response to

each other can.

Please, please, remember to be respectful and **ACCEPTING** of everyone.

Take care,

Joan

Owner, Ds-autism listserv

Project Director, Down Syndrome Autism Information Center

www.creating-solutions.info

MOther of Andy, who is now 19, and has autism, DS, celiac disease and

is nonverbal.

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...