Thursday, July 29, 2010

In the Woods (or There, For But the Grace of God)

I've debated whether I want to write this post, to share what I know. It's probably a bit controversial, and there will be some who might disagree. 

But then I read another article of hate, of misinformation, and I think that maybe there's something I can add to counter, in some small way, some of what is out there. 

You've probably heard the story by now, that of the story of a 20 year old man with autism being forgotten in a stifling hot van following an outing to a very nearby amusement park while under the care of staff members from a residential center for people with disabilities. I don't need to link to it here. 

It is a horrible, horrible tragedy.  One that is every parent's nightmare, whether you are (like me) a parent of a child with autism or if you barely know what the word means.

It's one of every parent's recurring nightmares. 

It should never have happened.

But it did. 

My heart breaks for the family and my deepest sympathies go out to them.  There are no words that can explain this, there are no words of comfort, there are no words to bring their son back.  There are simply no words. 

Except, maybe these.

Although I don't know this particular family, and I probably don't know the as-yet-unnamed staff members, I know this residential center where this happened.  I know it very, very well because for several years, I worked there. 

(Ironically, among my job duties was handling their crisis communications, which fortunately were - and up until this incident, continued to be - few and far between.)

My role brought me into frequent contact with people with such severe disabilities that it was hard for me to fathom how they could smile so often.  (And oh my God, did these clients smile.)  And I began to realize that it was because, in a great part, because this place was (is) their home.  A place where they were among others like them, where staff members cared about them, worked with them, loved them.  Where people were family and where, heartbreakingly, many of them were forgotten by their own family. 

I remember interviewing a mother for an annual report story.  Her son was nonverbal and, with the help of therapists and an assistive speech device, was able to have a conversation with her for the first time. 

I didn't have children then (much less - again with the in-your-face freakin' irony - a son with autism) and I naively thought I had the words to write about such a moment for our donors.  I was wrong, just as I was wrong about once feeling I could never possibly work in such an environment.  Something pulled me towards accepting that job, though (and now 12 years later, I know what that was) and the result was four years that changed me because of the changes that I saw in the residents of that facility, who received services on that wooded, secluded campus.

Today, in response to the recent tragedy, at least one group is planning a protest on that campus, "interviewing" staff members as they try to go in and out to do their jobs, and calling for the closure of the organization because people with disabilities should not be isolated.

But here's the thing:  they're not.  The gentleman who lost his life over the weekend did so following an outing in the community, probably one of many similar types of recreational outings he did with his group, probably as part of a curriculum and a therapeutic plan to help him become more included in the community.  And meanwhile, the gorgeous campus IS where he was included.  Loved. Accepted. 

This horrible tragedy, this sad ending to this man's life, should not result in the end of this organization, one with a history that dates back to 1913, one that is fully accredited, one that is the absolute anthesis of a barbaric institution. 

One that pays its employees a more than fair wage for the work they do (staff make above what an average client care worker receives elsewhere).

One where family after family after family has told me they are proud to have their kids there. 

One with staff members who I still call friends, and whose hearts I believe I know.

One that has made and - I fervently believe - a difference in the lives of so many, so very many. 

One where people have truly achieved their full potential, just like the communications copy I once wrote said, because I have seen such potential and such achievements firsthand.

Even the young man's family has recognized this, saying that their son was well cared for during the time he spent there.  In his grief, the father is quoted as saying, "I'm not going to let the mistake of one person ruin the five years that they [the deceased's brother also has autism and was a client at the facility] spent there, or the wonderful care they were given. I feel it's neglect on that one person's part. Perhaps they'll have some kind of double inspection the next time, where two people are responsible.''

That's class.  That's what should be happening, and which is happening: an investigation, consequences for those responsible.  But closing down the entire organization because of the misinformation being spewed by some seizing-the-media-day, grandstanding people?

This organization is truly a good place.  A very, very good place. This is a place where I - like the young man's family - would place my trust in people to care for my son with autism, if he ever needed a residential facility. These are, for the most part, exceptionally good people.  People who care, who do their best.  People who are, at the end of the day, human and may make mistakes. Just like all of us. 

And make no mistake about it, and know this, if nothing else:

For the more than 800 children and adults with disabilities who live on the tree-lined grounds, this is their home. Perhaps the first and only one that they may have ever known.

And taking it away from them would be nothing more than a crime.

copyright 2010, Melissa (Betty and Boo's Mommy, The Betty and Boo Chronicles) If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.

7 comments:

Amy said...

Thanks for this post, Melissa. I hadn't read of this incident, but I really admire the courage it takes to walk this road.

I"m glad there's someone like you...a voice that can be trusted speaking up about and for this place so reasonably.

Anonymous said...

Thank you for the information. It is good to know that this residence is indeed a loving home for so many.

Stephanie Baffone said...

Melissa,
How brave of you to write about this and take this stand so publicly.

The ground swell for its closure is born out of a natural knee-jerk reaction to a terrible tragedy but it is not one coming from the voice of reason.

As you say, it is equally tragic to displace 1400 people solely based on the poor decision and distraction (insert euphemism) of one staff member.

You inspire me b/c you don't always travel down the most popular route but the most sensible. Brave!

Stephanie Baffone said...

Melissa,
How brave of you to write about this and take this stand so publicly.

The ground swell for its closure is born out of a natural knee-jerk reaction to a terrible tragedy but it is not one coming from the voice of reason.

As you say, it is equally tragic to displace 1400 people solely based on the poor decision and distraction (insert euphemism) of one staff member.

You inspire me b/c you don't always travel down the most popular route but the most sensible. Brave!

K A B L O O E Y said...

I agree with Stephanie's post, and do thank you for telling me vital information that I haven't heard in the brief reports I've seen in the paper and on TV. True, I haven't done anything to investigate further, but it's so important to be reminded that there is always a full story to be learned/another side to a story. Am quite glad to know this was an anomalous event and that the residential center is an excellent one. Wouldn't have known that if not for you. Thanks, Melissa.

Sheila (Bookjourney) said...

Melissa, I had not heard about this and I am so saddened over this tragedy.

This is a well written post and I appreciate your wise words.

DemMom said...

Melissa, I had not heard about this and have been offline for several days. Thanks for saying it. I didn't work there as long as you did, or get to know as many people. But I've always felt that it was an excellent facility and one that I would use if the need arose. Otherwise, many of us wouldn't have decided to work there. I hope some people at the facility can read this and appreciate your words in this tough time.