What Constitutes “Support” from Parent Support Groups in a Situation Like This? – From the Archives

This post was originally published 3/25/13


 

Doing a Buddy Walk with Patti and Ethan Saylor

First let me say that I owe a great deal to the local and national parent support groups that I have been affiliated with over the years.  I honestly don’t know where I’d be if it wasn’t for their information and encouragement.When Patti (Saylor, aka Ethan’s Mom) first reached out to me, only months after Josh was born, I was hesitant to say the least.  In my mind, support groups were basically organized self-pity parties where everyone sat around and cried about their difficulties.   I know, I couldn’t have been more wrong, but that’s how much I knew at the time.   After a few phone calls, she finally convinced me to agree to attend a picnic in the park with several other families.  Okay, I thought, at least if I don’t like it I can duck out without drawing that much attention.  It turned out to be a wonderful day!  The other families were welcoming and no one looked remotely sad.  After that, I attended every meeting I could, and even went to my first national conference with the Saylors and another family.  Our kids got close, and so did we, as parents. As the years passed, we shared information and supported each other by attending I.E.P meetings, organizing events, and just spending social time together.   It was great having a list of numbers to call whenever something happened and we needed to discuss it with someone who “got it.”  We referred each other to professionals that were “DS friendly,” and warned each other about those who were not.   It was a priceless experience.I have since moved away from that original group, traveling in order to finally get my college degrees once Josh was in middle school.  Those connections, and the ones I’ve made in other groups, will never go away.  I know they will always be there if I need them.

With that being said…. I am extremely disappointed with the lack of action thus far from the local group (which Patti started) and the national groups.  I know Patti, and if something like this happened to someone who was affiliated with our group “back in the day,” she would have had us organized and out there.  I can imagine candle light-vigils, sit-ins, media and letter writing campaigns, and who knows what else.  A few simple posts on Facebook and press release would not have been sufficient.   Not to mention that she would not have waited until the public started bombarding the group with questions to issue a statement.  And there would be NO WAY she would have let an opportunity like World Down Syndrome Day slide by without utilizing it to the fullest.

I realize that people, including myself, were somewhat hesitant to say much while there was an active investigation going on.  However, there were ways to bring attention to the issue without compromising the investigation.

As far as the national organizations go, I’m not totally convinced that what they said, which wasn’t much,  didn’t feed right into the prejudices of authorities, giving them the “out” they needed to sweep Ethan’s death under the rug.  It seems as though all anyone is saying is that we need more “training.”   Training can be great, and should be ONE of the options, not the ONLY option.   Training doesn’t change attitudes.

Watching all this unfold from hundreds of miles away has been devastatingly difficult for me.  I’ve been glued to the internet, watching for every news article, editorial piece, and Facebook post I can find.  I was grateful but somewhat weary when the story went “viral” because I was afraid for the family.  Turns out I had a right to be, but at the same time it’s been the only good thing to come out of this so far.   People who helped fuel the spread of the story have been from all walks of life, and all over the world.  These strangers have helped draw attention to the injustice of that night and the investigation that followed.  We had no reason to expect support from these people we don’t know – but there it was.

They will never now how much I have appreciated what they have done.

I only wish I would have seen the love and outrage come from the people I expected it to.

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