To say that I’m frustrated beyond belief right now would be an understatement.
A few months ago I posted my initial disappointment and confusion regarding the lack of “support” from our local and national support groups.
Now that time has passed, I’d like to say they’ve stepped up and all is well. I’d like to say I get the “warm and fuzzy” feeling that those with a voice are taking a stand and showing us what it means to ‘support’ people.
Guess what…. NOT!
For weeks I’ve been watching and, for the most part, biting my tongue. I do understand that there is more at work here than personal feelings. Groups, especially the “nationals,” have a lot to consider before they speak publicly. That being said, I’m just SICK!
The NDSC has been at the top of the list. They at least seem to be trying to respond to what we, the members, are asking for while maintaining a professional stance. (I know, it seems more than a little lacking to many… but it’s the best we’ve gotten so far.)
Then, there’s the NDSS. They failed to ask for an independent investigation from the start and only seemed to fold under pressure. Since then, they have attached themselves to what everyone else is doing. I’ve read some posts about financial ties that might make their actions, or lack thereof, even more suspect but I don’t know enough about it to make that claim.
What REALLY gets me, the reason I’m fuming tonight, is the local group. I’ve wanted to speak out about them from the beginning but I’ve held out hope that they’d wake up and see what they’re doing. Tonight was just the straw that broke the camel’s back.
On April 30th, the night we got the news about Ethan’s unexplained injuries, there was nothing posted on the F.R.I.E.N.D.S. Facebook page about it. I thought at first that maybe whoever updates it just wasn’t online that particular night. The airwaves, from where I sat, were certainly lit up with people talking about it. I thought it was pretty hard to miss.
F.R.I.E.N.D.S. did post that evening, but not about Ethan. They shared a link to a ‘feel good’ story and video hosted by the Down Syndrome Guild of Greater Kansas City. I was furious! I didn’t want to call them out publicly, so I sent them a private message explaining how disappointed I was that they failed to inform their audience about what was going on. We all know that since the tragedy, F.R.I.E.N.D.S. has gotten more than their share of publicity. Parents from all over the world are looking to them to stay updated. Denny Weikert even acknowledged this responsibility in their last press release. Unfortunately, F.R.I.E.N.D.S. has failed miserably in that capacity.
I did get a response the next morning from a very polite representative of F.R.I.E.N.D.S.. She said she was sorry that I was upset, and explained her position. She was unaware of any updates on the Saylor case, and only posted the video because it showed up on her news feed.
Ok…..
She went on to say that she would check with the F.R.I.E.N.D.S. president:
A few months ago I posted my initial disappointment and confusion regarding the lack of “support” from our local and national support groups.
Now that time has passed, I’d like to say they’ve stepped up and all is well. I’d like to say I get the “warm and fuzzy” feeling that those with a voice are taking a stand and showing us what it means to ‘support’ people.
Guess what…. NOT!
For weeks I’ve been watching and, for the most part, biting my tongue. I do understand that there is more at work here than personal feelings. Groups, especially the “nationals,” have a lot to consider before they speak publicly. That being said, I’m just SICK!
The NDSC has been at the top of the list. They at least seem to be trying to respond to what we, the members, are asking for while maintaining a professional stance. (I know, it seems more than a little lacking to many… but it’s the best we’ve gotten so far.)
Then, there’s the NDSS. They failed to ask for an independent investigation from the start and only seemed to fold under pressure. Since then, they have attached themselves to what everyone else is doing. I’ve read some posts about financial ties that might make their actions, or lack thereof, even more suspect but I don’t know enough about it to make that claim.
What REALLY gets me, the reason I’m fuming tonight, is the local group. I’ve wanted to speak out about them from the beginning but I’ve held out hope that they’d wake up and see what they’re doing. Tonight was just the straw that broke the camel’s back.
On April 30th, the night we got the news about Ethan’s unexplained injuries, there was nothing posted on the F.R.I.E.N.D.S. Facebook page about it. I thought at first that maybe whoever updates it just wasn’t online that particular night. The airwaves, from where I sat, were certainly lit up with people talking about it. I thought it was pretty hard to miss.
F.R.I.E.N.D.S. did post that evening, but not about Ethan. They shared a link to a ‘feel good’ story and video hosted by the Down Syndrome Guild of Greater Kansas City. I was furious! I didn’t want to call them out publicly, so I sent them a private message explaining how disappointed I was that they failed to inform their audience about what was going on. We all know that since the tragedy, F.R.I.E.N.D.S. has gotten more than their share of publicity. Parents from all over the world are looking to them to stay updated. Denny Weikert even acknowledged this responsibility in their last press release. Unfortunately, F.R.I.E.N.D.S. has failed miserably in that capacity.
I did get a response the next morning from a very polite representative of F.R.I.E.N.D.S.. She said she was sorry that I was upset, and explained her position. She was unaware of any updates on the Saylor case, and only posted the video because it showed up on her news feed.
Ok…..
She went on to say that she would check with the F.R.I.E.N.D.S. president:
“ I will consult with Denny Weikert our Pres. this afternoon to see if he is aware of any updates. I know he has been working closely on the Ethan Saylor tragedy. “
Uh huh….
As the day went on I noticed that they shared two stories from the IDSC. Funny, I thought, since the IDSC also shared the story about Ethan – but F.R.I.E.N.D.S. seemed to have missed that one.
I wrote back. I thanked the author of the email for responding and shared the link to the news story. (Just on the off chance that they really didn’t hear the news.) I never heard another word.
Since then, they have shared the T21 Brigade post (via IDSC) that features Patti’s Mother’s Day story, and the Frederick News Post story that was published AFTER the Mother's Day memorial took place. They did NOT post the story that announced where and when it was going to be held beforehand or the Letter to the Editor that I wrote, which was published on the same day as the one they did share. (To be fair, I did not invite them to be a part of the planning or promotion of the event. I didn’t see the point.)
At the park that day, three families from the original group of F.R.I.E.N.D.S. were reunited. It was wonderful. We talked and shared, hugged and laughed like we’d been together the whole time. We were, as one mother said “of like hearts.”
So what exactly has happened to that group that meant so much to us?
I tried to let it go. Really. I thought, “it’s a totally new group. Maybe they have different needs than we did. I’m not involved any more so I should just stay out of it.”
Sorry, I can’t.
Tonight, they posted this:
As the day went on I noticed that they shared two stories from the IDSC. Funny, I thought, since the IDSC also shared the story about Ethan – but F.R.I.E.N.D.S. seemed to have missed that one.
I wrote back. I thanked the author of the email for responding and shared the link to the news story. (Just on the off chance that they really didn’t hear the news.) I never heard another word.
Since then, they have shared the T21 Brigade post (via IDSC) that features Patti’s Mother’s Day story, and the Frederick News Post story that was published AFTER the Mother's Day memorial took place. They did NOT post the story that announced where and when it was going to be held beforehand or the Letter to the Editor that I wrote, which was published on the same day as the one they did share. (To be fair, I did not invite them to be a part of the planning or promotion of the event. I didn’t see the point.)
At the park that day, three families from the original group of F.R.I.E.N.D.S. were reunited. It was wonderful. We talked and shared, hugged and laughed like we’d been together the whole time. We were, as one mother said “of like hearts.”
So what exactly has happened to that group that meant so much to us?
I tried to let it go. Really. I thought, “it’s a totally new group. Maybe they have different needs than we did. I’m not involved any more so I should just stay out of it.”
Sorry, I can’t.
Tonight, they posted this:
Team Routzahn joined the DSA of Delaware today for their 10th Annual Buddy Walk at the University of Delaware. Despite the wet start the walk was wonderful! Lots of teams, buddies, games, food, music and fun for everyone! We have some new ideas for the 12th Annual F.R.I.E.N.D.S Buddy Walk on Sept. 21, 2013! Are you ready to walk???? We are!!! Please consider joining this year's planning committee at the Panera Bread on Rt. 355 on TUESDAY, MAY 21st at 7 PM or email Evan Routzahn at [email protected] if you are interested in joining the Buddy Walk Committee!! We need you!!!!
So, anyone involved in any kind of Ds activities knows that the Buddy Walk is a big deal. It’s a big deal for NDSS. Apparently, F.R.I.E.N.D.S. can send a team to Delaware to ‘support’ the NDSS fundraising, but can’t send even one person to Pinecliff park to support the founder of their group. They can’t even spare the time or precious ‘wall space’ to take a stand.
| I don’t get it. As if this tragedy isn’t horrific enough, they have added to the problem by appearing to be sheep led around by an ineffective national group whose only concern is raising money for their own agenda. I'm sorry. If you’ve read my previous posts, or you know me personally, you’ll know this is language is highly unusual for me. I’m all about taking the middle road and trying not to ruffle too many feathers while still fighting for what I believe. This is just too much… Yes, I’m officially fed up! (and I posted that on FB! lol) |  |
Thanks for letting me vent.
Now, what can we do? Any suggestions? I’m afraid if I hear F.R.I.E.N.D.S. say they are “working closely” with the Saylors or that they are “heavily involved” with the case and the training one more time I might just explode!
Now, what can we do? Any suggestions? I’m afraid if I hear F.R.I.E.N.D.S. say they are “working closely” with the Saylors or that they are “heavily involved” with the case and the training one more time I might just explode!
***Update: In response to my comment about F.R.I.E.N.D.S. "sending" a team to Delaware:
Katie Harding Routzahn I feel like it is important to clarify F.R.I.E.N.D.S. did not "send" us "Team Routzahn" to the DSA of Delaware's Budd Walk yesterday. We went on our own. We have friends who are members of that group, and I am a graduate of UD (location of the walk). We went on our own to support our friends. Also my husband chairs our F.R.I.E.N.D.S. walk and we try to attend various Buddy Walks in the area so we can get ideas for our annual walk. We paid our own registration fee. Thank you.
Thank you Katie Harding Routzahn for clarifying my mistake.
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Katie Harding Routzahn I feel like it is important to clarify F.R.I.E.N.D.S. did not "send" us "Team Routzahn" to the DSA of Delaware's Budd Walk yesterday. We went on our own. We have friends who are members of that group, and I am a graduate of UD (location of the walk). We went on our own to support our friends. Also my husband chairs our F.R.I.E.N.D.S. walk and we try to attend various Buddy Walks in the area so we can get ideas for our annual walk. We paid our own registration fee. Thank you.
Thank you Katie Harding Routzahn for clarifying my mistake.
To follow more comments made on this post: https://www.facebook.com/permalink.php?story_fbid=4754734192321&id=193703793985932&comment_id=4267644&offset=0&total_comments=1
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