Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 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. Quote Link to comment Share on other sites More sharing options...
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