Wednesday, March 21, 2012

When support groups aren't so supportive.

I used to belong to an online support group for parents who had children on the Autism Spectrum.  Yesterday a post came up that ended with the line "My son with autism is way cooler than any boring typical any day."
I was a little surprised to see that, especially because as parents of special needs children we don't want others saying things like that to our children.
So I commented to her and said that we should be mindful of saying things like that because if you replaced autism and typical with other words (like normal and retarded) people would be upset.
I was told it was a joke. Again I  responded that I didn't think it was funny and we were only doing to others what we hate them doing to us.

The admin decided I was being nasty, hateful and unsupportive. She actually said that to me before she deleted the thread. I never called anyone any names, no one acknowledged my point. But I got called some nasty things.
A post was soon put up with "rules" for the support community which included no "arguing" (because sadly we have a generation of adults that can't functionally disagree) no bad-mouthing and so on.  The golden rule was mentioned (do unto others...)

Someone commented about how they've seen people bash teachers and schools, why was that ok?  (I swear, not me).  I commented saying that there wasn't any drama, I didn't say anything rude to anyone and my point was exactly a "Do Unto Others" thing.

Then...I got called some names. The admin threatened to delete the group. Deleted the post and removed and blocked me.  So here I I can't even go to the physical meetings because I won't know when they are scheduled.  I opened my mouth to say "Don't talk that way about others when you don't want them talking about you that way" and was told I was unsupportive.  I'm really not one for double standards so considering what was said I felt the admin was being incredibly hypocritical.

The reason I'm really upset is because I feel that both Ben and Garrett have also been cut off from the support that other members of that group could have provided.

When did support become enabling?  Does a support group mean you can't disagree or even say "What you said it hurtful to others?"  Saying something like that certainly isn't taking a jab at the person posting it (while the person who posted that took a jab at "typical" children)

So I sit here confused. This support group has gone and done the most unsupportive thing in the name of helping others.

That still doesn't make that statement right.  No matter who says it. 

I should add that I loved this group. It was a wonderful resource and I am in no way bashing the group itself which has been a great resource for so many people.


Lea said...

I'm so sorry, Irene.  That's just awful.  I completely agree with you.  And what about families with both special needs children and those without?  How would it feel to them to have their so-called support bash one child in the name of empowering the other?

I wish this hadn't happened to you and your family.  And I hope you find another group of people with a little more sensitivity.

teawithfrodo said...

 That was pretty much my point. It wasn't singling out or taking jabs at someone posting that. But wanting them to be aware of their words.
I've found my friends with "typical" children are much more tolerant of differences in children.  Garrett may be autistic but he's still a "typical" child to me.
It breaks my heart that they've taken that support from us because they don't like to be held to their own standard.

Christina G. said...

You are one of the most Open Minded women I've met Irene, those ladies kicked out a valuable group member but sadly they'll never realize that because their eyes are wide shut. 

teawithfrodo said...

 Thank you. I have found that some of my best support has been from parents of "typical" children. 
I'm strong enough to find other avenues of support, but I hope they haven't kicked people out who need the support that group supplies.

findit13 A said...

That sucks. It sounds like the admin didn't really read the posts correctly, jumped to conclusions, or shouldn't be in the position they are in. If you really need the group, you could re join using a different email address. Its a bit sneaky, but if the sight has useful information you need, then its a way to get back on it. 

teawithfrodo said...

 I've found other places for support. I've gotten some hateful messages from people in that group. Which is sad because as a whole I really liked the people in the group.
After some reactions this week I see I am probably better off.  I have plenty of wonderful friends and other resources down here.

Hopexstb said...

It sounds like the admin her/himself is an individual with special needs: that of learning to listen with love. I am sorry for what you experienced and hope that some of the other (silent?) members noted your courage and will continue to respectfully challenge where appropriate. 

We have four grandchildren and the oldest (soon to be age four) has cancer. His parents and aunts/uncles treat him the same as the others except when he is experiencing symptoms or side effects from treatment. Then he gets treated the same as the others...when they have colds or flu. Everyone learns gentleness when others don't feel well.

Take a deep breath and know that although it is hard when we are harshly judged, you stand as a great example to your family and those of us who are fortunate to know/read you. Brava!!!

teawithfrodo said...

 Thank you for your words. I have realized I'm better without that kind of anger. It doesn't matter what needs a child has, no child is worth more than another.

We are lucky to have supportive friends and family.