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Archive for August, 2010

Herby bites the dust

Advocacy in Motion:

Last weekend was the turning point. Hey, I’m an experienced advocate, I’m even a graduate of Question the Rules. Sometimes, enough is enough, you just can’t take it any more and must take action.

Herby, Me and Kathy Griffin outlined the issues in a previous post called Signing Your Life Away. Click here for the story Signing Your Life Away.

Well, Saturday night I raised the challenge and refused to sign.

The staff person handed me a pen and the paper and was shocked I wouldn’t comply. She became insistent and said, “But you have to sign, we have to file this paper.” So I wrote her a note on a scratch paper and I’m sure she thought I was being a smartass. (Maybe I was.) I read her the words, “responsible for deterioration in condition” but I don’t think she was even listening to why those words were offensive. She was just upset I wouldn’t sign the “official” paper and now she would have extra work to do. I could almost here her thinking, “Why on my shift?”

I thought about it all day Sunday, my husband wisely told me to choose my battles, this was a small thing. I told him Rosa Parks refusing to give up her seat was also a small thing. Of course, then he told me I was being over dramatic (I was) but… I decided this was so small, it was a battle we could win.

When we brought Aaron back on Sunday night, I thought it might console the staff person if I made up a formal release form with the same format as the first paper, just omitted the offensive words. Then she would have a paper to file. She finally said I should call the supervisor, it wasn’t her issue. (Which was true.)

I spoke to the supervisor on Monday and he reaffirmed how important that paper was. All of a sudden this paper was saying all kinds of things it didn’t say: the parents would be giving the medications, take the person to emergency care if necessary…. When he finished I explained I had no problem signing a paper saying I would take responsibility for Aaron and make sure he got good care, but I would not sign a paper saying I was responsible for his “deterioration in condition”. (Geez, I get upset just typing that phrase.)

He couldn’t understand why I wouldn’t sign it when I have signed it all these years (good point). I told him every time I signed it, it was a dagger to my heart.

I explained we were Aaron’s guardian and of course we could give him emergency care. And besides that was not what the language said on the paper. He told me to go up the food chain and call the person in charge of Human Resources.

I really do hate being a trouble maker. I want everyone to like me, and particularly I am always afraid they will take my bad behavior out on Aaron. But sometimes you just have to do what you have to do.

The person from Human Resources called just now, she was appalled when I read the wording on the paper. She reiterated what the supervisor said the paper was supposed to say. And she said she would fix it.

Period. Done (I think). Job done. Amen. Alleluia! One small step for man…

Next week when we again pick up Aaron, I fully expect a new form to be in place. And just maybe, “herby” will be gone and replaced with “hereby”. Goodbye herby.

I’ll let you know. But I think this was one small victory for the good guys! And like Bronfenbrenner says, everything is connected. See post here. Perhaps this will trigger other positive changes.

Call to Action:

What small act can you do today to advocate for someone you care about? Share your success/ challenges in the comments below. Maybe our community can help. We have some world-class advocates here. Let’s make a difference.

Keep Climbing–onward and upward.

All the best,


Month One Stats at Climbing Every Mountain

Hi Everyone, is celebrating its first month.

Thank you for being a part of our growth. Our Basecamp is developing and some great people are starting to gather for our climb. So, it has been a great start.

There is a lot to learn, and our site is still pretty primitive according to other websites, but we’ve added Google Analytics (Aug. 16), Akismet to help filter spam and there is now a way to sign up for subscriptions.

The Google Analytics report is only from Aug. 16th, but it says 91 people have visited the site from over 10 countries. There have been 130 visits which averaged 2.15 page views a visit, 3.44 minutes each time. There were 279 page views all together.

I’m glad I took statistics in college (God, quit laughing) but I’m still trying to decipher all the information.

This is the beginning of an amazing journey. I’m starting to connect with many of my earlier friends from TASH and other organizations. Ann Turnbull has generously given of her time, expertise and encouragement. Anne Bauer, Becke Martin and Kathy Hulgin have been most encouraging. We’re starting to see some parents. Thanks for the referrals from Patty McMahon at the Hamilton County Arc.

So, we’re off. Maybe we’re just strapping on our boots at the beginning of this journey, but at least we have begun.

Thank you for being part of our community. I’m hoping next month we’ll see more visitors, more parents willing to engage in conversation and comments. I know most of you are not shy, so speak up in the comments and tell me your thoughts.

Keep Climbing–onward and upward.

All the best,


Signing Your Life Away

Signing Your Life Away–literally.

I couldn't make this up

We usually pick our son Aaron up at his house on Saturday night at 5 PM and then bring him back Sunday night between 7-9 PM. And each time the residential staff person asks us to sign this form from the “company”:


I, the undersigned, herby (sic) accept responsibility for …………………….while away from …………………… and absolve the management of said facility, its personnel and the attending physician of responsibility for a deterioration in condition, or accident that may happen while the resident is away.

For those of you who can’t believe this institutional baggage could still be around in 2010, you probably also can’t believe that “herby” has been faithfully photocopied and misspelled for all those years.

So me and “herby” are going to make a change. Starting today, I WILL NO LONGER SIGN THIS FORM.

Over the years I’ve gone from being mad, to sad, to frustrated, but now I think it is best to think comedy. (Say this in your best whiny Kathy Griffin’s voice and imagine a monologue from the queen of dish.)

“Actually to be on the agency’s ‘D’ list would be a step up. So, what the heck? It’s been at least 4 days since the supervisor decided I’m no longer public enemy number one–the queen of mean, so I should have enough social collateral to take this on, right?”

No matter how much the staff people beg that they are just doing their job and they will get in trouble if the form isn’t signed, I’m just not going to do it!

Now before anyone starts cheering please remember that in the ten years Aaron’s been in this residential and day program, he has regressed and there has been significant deterioration in his condition and skills. Yea, it’s documented. Remember all those accursed meetings?

But rather than blaming the loss on the parents and adding more passive aggressive guilt, let’s consider that maybe, just maybe, the ‘deterioration’ happens the 6 days a week when Aaron is in THEIR “professional” care.

And just what is “deterioration” anyway? It sounds like a remodeling job gone bad. Is that like when the concrete foundation starts to flake and fall apart? Do people actually deteriorate? Is that what all the plastic surgery is about? Face lifts, tummy tucks…worry that the concrete foundation is crumbling? Dr. Deterioration to the rescue?…”

Now Kathy Griffin would continue this comedy skit with some great anecdotes and have us all laughing. I can think of a staff person who said they didn’t have to brush Aaron’s teeth twice a day because “he didn’t brush his teeth twice a day.” Another staff person complained, “Why would I waste money and wash his hair everyday with shampoo. I only use shampoo once a week?” Or, “black socks are hotter than white socks, so you wear black socks only in winter.” (Actually this last one was in a day program and when I said there could be white wool socks, or black cotton socks–the color was not the issue–the staff person didn’t understand what I was saying.) Yes, indeed these could be great skits.

I’ve complained over the years about the wording on this form but the poor direct care staff in the house have no idea where the form came from, it has just always been there. They are caring people who have often had their own hard luck. They are making a little more than minimum wage. Some people might give them a nod and tell them they are doing God’s work, but society does not value the job they do.

So… drum roll… what to do? Probably the hundred or so family members who are signing this form are concentrating on the task at hand, giving their loved one a nice experience. It’s JUST A FORM. Life is all about choosing priorities. Choosing your battles. Is this worth an all out assault? Will haggling the company about this form make Aaron’s life better? Will it make my life better? I’ve put up with it for 10 years because I didn’t think so.

But the issue is, none of these “professionals” even knows how hateful and insulting this language is to families. They never put themselves in the families’ position; see it from their point of view. The fact when I was interviewing agencies, the first words out of their mouths were, “Oh, we love to have the family involved.”

And then after time, it becomes very clear that what they really meant to say was, “Oh, we love to have the family involved. We expect you to lavish us with praise and money, but then trust us unconditionally and ask no questions.”

Every good comic act and story needs a twist. So….what would Kathy Griffin do?

Maybe the solution is that next week I bring in MY OWN FORM. Before I give Aaron over to their care, I tell them THEY have to sign the form. They have to take responsibility for any regression and deterioration in Aaron’s condition.

Perhaps if the company had to own up to the undertrained, underpaid, undervalued staff. Perhaps, perhaps, perhaps…. Hell, they’d never sign it.

Take the stage–Passing the Mic

Do any of you have any great one liners you could add to our comedy routine? Have any of you had similar experiences? What kinds of forms do you sign to check your child in and out of their homes?

Share your ideas and keep climbing, onward and upward…

All the best,

Mary, herby and Kathy

Catch the followup to what happened click here

Son with Asperger’s Interviews Mom

My blog is now three weeks old. I’m still trying to maneuver through the learning curves, but I’ve been so pleased to meet some new friends.

Joe Trey just sent me this video. Joshua Littman, who has the label of Asperger’s syndrome, interviews his mom, Sarah. It has a terrific message and graphics and is part of Story Corps. I’ve never met Sarah but I love her when she says, “I’m so lucky to have you for my son.” Check it out and let me know what you think. (chick here)

If you like this video, I recommend “There’s a Boy in Here.” by Judy and Sean Barron, 1972. Avon Books: New York. The book goes back and forth telling Judy (the mom) and Sean (the son) stories from their point of view.

I thought Sean’s insights about his way of looking at the world were very helpful. For instance Sean loved his teacher. Then one day she made the mistake of telling him it was her birthday and she was turning 24. Well, Sean hated the number 24 because bus number 24 was always late and he hated to be late. So–according to Sean’s logic, he could no longer like his teacher because according to the rules he made to make sense of the world–she was 24. Of course, the mom and teacher went nuts trying to figure out why Sean no longer treated his teacher the same.

Plus, Judy and Sean’s story starts out in Ohio and Sean “emerges from autism” and has a girlfriend and …. read it!

How many of us have rules that make sense to us, but not to others?
Have you seen any videos or read any books about people who are different? Share them with us in the comments.