Friday, February 15, 2013

Tell the FDA to stop the shock therapy at the JRC

Our thanks to Lydia Brown, who passed this email from Nancy Weiss along.

Subject: Letters to FDA needed - End Electric Shock at Judge Rotenberg!

The effort to have the FDA disallow the use of electric shock devices at the Judge Rotenberg Center is in jeopardy.  We are at a turning point --  we need you to write a letter and to pass this request on to others who are concerned about this issue.

It seems the FDA has gotten dozens of letters from parents whose sons or daughters are at the Judge Rotenberg Center and who want JRC to be able to continue to use painful electric shock to control behavior. The FDA is being swayed by these letters. Those who sent letters are not bad parents – but they are people who have found few other options for their loved ones, have made the difficult decision to send their family member to a place like JRC and who need to feel (and convince others) that they have done the right thing.  It is clear from many JRC parents that they had no idea about some of the devastating things that were happening to their loved ones at JRC until much later. A letter from a former student is attached.

We need people to write letters to the FDA. A template for a letter is attached; feel free to use it or to use parts of it  -- but the strongest letters will be those written from the heart.  Letters can be signed by individuals or organizations. 


-- From parents or family members who have loved ones whose behaviors are just as severe as those of people at JRC but whose family member has been treated/supported successfully with humane approaches. If you have a family member whose behaviors are very challenging, please write! 
If you know someone who has a family member who could have ended up at a place like JRC and who may be willing to write a letter to protect people with disabilities from the unspeakable approaches used at JRC, please forward this request.

-- From organizations that serve people whose behaviors are just as severe as those of people sent to JRC – or even people who have been at JRC. Do you support people with tough behaviors using positive approaches?  Please write about the kinds of people you support and the effectiveness of your approaches.  Let the FDA know that pain should not be a part of an effective behavioral approach. Please forward this request if you know people from other agencies that serve people with challenging behaviors.

There are currently about 240 children and adults at JRC …. they represent only a fraction of the many, many people across the country who have challenging behaviors. We need the FDA to understand that it is neither acceptable nor necessary to use pain to control behavior.

Thanks to the many of your organizations that signed on to the letter to  the FDA spearheaded by the Autistic Self Advocacy Network.  The full letter with final sign-ons is here:

Now, individual and organization-specific letters are badly needed.  Letters can be emailed to Margaret Hamburg, M.D., the Commissioner of the FDA at:
You may also want to mail a copy.  Letters should be sent by the end of next week (February 22nd). 

Please send your letter directly to:
Margaret Hamburg, M.D.
US Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993 

You are welcome to copy me so we can maintain a file of the letters sent to the FDA.

Thank you for your continued concern about this issue. The letter from the former student (attached) has touched people’s souls and galvanized this effort in ways that are unprecedented. Please help to end these atrocities once and for all.
-- Nancy Weiss

Nancy R. Weiss
Director, National Leadership Consortium
   on Developmental Disabilities
University of Delaware
Department of Human Development and Family Studies
111 Alison Hall West
Newark, DE 19716

My email:

No humane and just society can allow the JRC to remain open for business and administering shocks to disabled individuals. Nowhere else in the United States does this happen, not in state schools, not in state hospitals, and not in state or federal prisons.

There is no justification for allowing disabled individuals to be shocked day after day, week after week, year after year, for failure to comply. It does not teach compliance. It creates traumatized individuals. 

We cannot allow this to continue.

Thank you,
Kim Wombles

Wednesday, February 13, 2013

Dog for David and Drama

A new blog and website came to my attention through Flappiness Is's latest post: A Dog for David:

A family is trying to raise the money for their son to get an autism service dog. Service dogs are wonderful resources for individuals who need them. Let's be honest, dogs are wonderful for all people. The bond between a dog and his or her person is a delight to witness and a wonder to experience (In Kathleen's case, sometimes the bond is one of duty to a dog that drives everyone crazy and tries to eat the chickens, which is not cool).

We've added this new blog to the directory, and I thought I'd bring both Flappiness Is's post and the blog to readers' attention for a specific reason: drama.

I don't know the details of who's currently attempting to discredit the author of the blog, and I don't need to. If you've been online long enough, there's no doubt that you've experienced being on both sides of that equation. I have. It's not pretty. It's not fun. In the end, it's completely a waste of time, time that could have been spent making a positive change.

So why do we keep striking out at one another? Why can't we put common interests ahead of egos and competing ideologies?

Mostly because we're human and flawed. We come online for a variety of reasons, and sometimes that's to strike out, sometimes that's to try to counter what we think are horrendous mischaracterizations and misinformation, and in our zeal to to right wrongs, we commit our own wrongs.

I think the drama, the trolls, how ugly it can get when we put ourselves out there in our truth, all of that contributes to a rapid turnover in bloggers. Yes, some hang in there for years, but I've seen bloggers come and go in the last four years, people I thought were wonderful writers and had important perspectives to share. These are people I still miss. I understand, but still...

I've also seen that blogging relationships and friendships rise and fall on the focus of interest, and how a difference of opinion can destroy what were supportive friendships.

We're thorny people, and we've all been wounded by our friends, our communities, strangers, and sometimes, even our own families. All of us, whether we are on the spectrum, bouncing around the edges of it, or simply connected to ones who are, have been hurt, misunderstood.

We come here, online, seeking kinship and community and distraction, and we each find these things in our own way.

We often forget that there are people at the other end of our rants, our accusations, our own hurt or anger, and that our words, our responses can make their lives harder. We forget to be kind. We forget to empathize with someone in a different situation, especially if the other person is combative, acerbic, or bitter.

I once took comments that disagreed with me or were curt, short, abrupt, as meaning that the other individual was discounting my perspective. I was shortsided, as one of my most rewarding friendships has been built with an individual whose comments I once viewed combatively. I'm so glad we kept trying, though, to understand each other. What a difference. Support, understanding, respect and no need to agree with everything with each other. See, we can be blessed and find that with people who are incredibly similar and yet fantastically different, like I have with Kathleen, and we can find it with those who hold radically different points of view, too, if we'll hang in there and work to understand. It's not a one way street, of course, as relationships take two to build.

Kurt Vonnegut often repeated his favorite lines from his Uncle Alex, one that resonates more each day with me, and showcased in his novel God Bless You, Mr. Rosewater (despite the fact that Vonnegut was a flawed human being who often failed to live up to this line): "There's only one rule that I know of, babies—God damn it, you've got to be kind."

One thing is certain: we can't go back and undo damage we've done with our words or actions, but we can go forward trying to live up to that adage, even though we are sure to fall short.

Give A Dog for David a looksee, share it if you see fit, welcome the family into the online autism world, with all its flaws and all its glory, and damn it, be kind if you can, and if you can't, try not to make other people's lives worse.

Best, Kim

Monday, February 11, 2013

Support: We Need it, and We Need to Give It, too: Team Issy

It's something brushed over, forgotten, hidden, tucked away: when our children are violent, are aggressive, and we need help to get them help.

Not all of us in the community will be able to personally relate, and that's okay--what's important is that we recognize and support everyone.

Some children (and adults) with autism will be physically aggressive, will need a greater degree of support to manage these outbursts, to find ways to communicate their needs in a way that doesn't hurt themselves or others.

Insurance companies don't like to pay for long-term treatment, and good treatment centers, well--there aren't enough of them, and they're expensive. And the government, through medicaid, rarely wants to pay for the length of treatment needed or period.

It isn't right. It isn't fair. And it adds a stressor to families already teetering on the edge. And this isn't about bad parenting, nor a lack of love and care for the autistic child. These parents who have children with aggression issues often love their kids deeply, are doing everything they can to help them, and they keep coming up against brick walls and no answers.

To compound it, to make it all so much worse, is that when the families do reach out to the community, they are often left with vitriolic, judgmental comments and a holier-than-thou attitude by people certain they could keep it from happening.

Listen, some things you just have to live through to know. We've been blessed that aggression was something we only dealt with for a few years, before Bobby's stroke rewired his brain so that the aggression stopped cold. Before that, I was his punching bag, his jungle gym. When he was three, four, five, that wasn't a problem. When he was nine and 100 pounds thanks to risperadol, getting climbed on, smacked, head butted, well, hey, that shit hurt.

We got lucky. I know that. Bobby knows that. He found other ways to channel his frustration. He got better at communicating. After his stroke, all the meds he was on were stopped, and we brought him home to home school him. Huh, was it the stroke, or everything else after that stopped the aggressive behavior? I'll never know for sure, and that lack of certainty is a good thing.

It means I can relate, that I can stop and consider whether I have any answers to give with absolute conviction to this mom, Kelli, as she battles to raise enough money to keep her daughter in treatment

I don't. I can't even promise with conviction that everything will work out, that things will get better. I can't and won't use platitudes, either.

What I can do is this: share her story and her family's obvious deep love for their daughter Issy and their desire to help her. I can support the family, refuse to shower judgment and disdain on a family that is struggling, hurting. 

Issy has a glorious smile. I can't help but notice how glorious all our children's smiles are, how genuine and real they are. Bobby, my sweetheart of a son, refuses or can't fake smile--so we don't do those family portraits at Sears because who wants to go through that when I can wait at home and capture his joy?

I know, that digresses. But, those smiles, the genuine joy and delight that lights up Issy's face? You need to see that. To know she is a real young woman who needs help so she can live a happy, successful life, so that she and her family can get the tools they need to help her do that.

Team Issy. I'm on it. Are you?

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Saturday, February 2, 2013

Where do the blog ladies meet IN PERSON FOR REAL?...any suggestions?

Kathleen and I are closing in on four years of a wonderful friendship. For the first couple years, I didn't even know what she looked like! And we didn't talk on the phone until last year, but we've still never met in person!

We're finally ready to plan that meeting for this summer, but we need suggestions as to location. My mind draws a complete blank when it comes to trying to figure out where we should pick. Kathleen is in Maine and I'm in Texas. The halfway point is, of all places, Kentucky, but really, the potential places we could meet for a couple days is wide open.

Care to offer us any suggestions?
What out of the way places can you think of?
What unexpected places can you dream up?

Two things it has to be: NOT a dry county. We don't want to drive for booze. :-)
Plus, it can't be totally backwater--would like to be able to stay at a reasonably priced hotel chain.



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