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Signing Your Life Away–literally.

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”:

RELEASE OF RESPONSIBILITY FOR LEAVE OF ABSENCE:

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

This story is from 1981 when Aaron was 7 and Tommy 5. We were in the middle of our lawsuit against Cincinnati Public Schools to allow Aaron to be able to go to public school. Enjoy.

At the end of our street is a pond. Our family often takes walks down there to see the ducks and give them bread crumbs. One day last summer, an old man was down there and said: “Did you see the handicapped duck?”

Well considering I was pushing my seven year old son with a severe disability in his stroller, and considering the 24 hours a day I spend thinking about people with disabilities–this was really too much.

The friendly man went on, “Probably a frog ate his foot or maybe he caught it on the fence…”

Sure enough, there were about 40 ducks and one duck was missing his foot and about one-half of his leg. The duck hobbled toward us but when Tommy tried to pet him he scrambled for the bread crumbs with the rest and then swam away.

Before we left, we did throw him some extra bread crumbs just because we wanted him to know we were friends who understood life’s little extra challenges.

I went home and joked to my friends that at least some humane society didn’t come and set aside a special pond for disabled ducks, start a supplementary training program and segregated nesting area–or some exploiter didn’t take him to Utah and enter him in some freak show for tourists.

We checked in once in a while over the winter, but I really was a lot more worried about people with disabilities than the ducks. We were trying to mainstream Aaron, into a public school. (This was before “inclusion” was thought possible.)

Yesterday the weather was warm so we walked to the pond and saw there were only about 15 ducks. We were only there a minute when that same man came running down full of concern. He told us someone was catching the ducks, putting them in plastic bags, throwing them into the middle of the lake and then watching them drown.

We were shocked. Who would do such a thing?

Meanwhile, the few ducks that remained came swimming toward us looking for the bread crumbs. Guess What?

The “handicapped” duck was among the survivors.

I’m not sure what this all means or why I thought to write about it, but with all the cutbacks and anything else they can think up–I think the duck gave us a message–we’re going to make it. There are some mean horrible people out there, sure. But there are also wonderful people like the man who cared for the ducks. There is risk being in the community–but that is also where there is safety.

This week Aaron learned to peel his own banana, he went boating and he saw a “handicapped” duck that was smarter than the non-handicapped ducks. We also just need to get smarter.

The dream… it lives!

Quiz: For those of you who read the story about the difference between disability and handicapped (click here) and tell me. Did our duck with the one leg have a disability, a handicap, or both?

Share your Stories of Hope

What helps keep your dreams alive? Any duck or pet stories?