Thursday, June 27, 2013

We Are Like Your Child: Lost, Mistimed, and Melty.

A group of us (Autistic and other disabled adults) have gotten together to start a collective blog called We Are Like Your Child because we want to help by talking frankly about difficult things and how we get by, so that people can see what happens when we grow up, in more intimate detail.  Some people might think our messages of hope and pride mean we don't think or admit we have problems, but that's not really the case.  We totally notice.  I just posted a story that happened just recently here at this conference, as an example.  Please add the blog to your reading list and check it out!

We Are Like Your Child: Lost, Mistimed, and Melty.: This just happened, so it is a quick vignette which I wanted to put here as I believe it will fit in to the theme perfectly. There are dif...

Wednesday, June 12, 2013

Wandering. Please Read And Spread Widely.

There have been a great many questions coming in during the past few weeks about wandering or eloping or the various things people call it, so many that it was hard to pick a particular one to answer, because of the different nuances.

Some of the questions were about my "position" on it, and some were about my experiences, and some were about whether I could help.

I have read the things that brought up some of these questions.

My heart goes out to the families of the children who wandered into danger and are lost to us now. You are all in my prayers. I have something very practical in terms of help and assistance to offer for families in similar setting situations, which is why the title asks you to spread the word.  Soon I will post this brochure and contact information.

For those who wanted to know my experiences and maybe thus what I think about the idea of the "wandering diagnosis" controversy, I'll answer this a little, because the good news at this side of the story is that I totally "get" danger now at age 43 whereas looking back I was one of the white-knuckle-conducive kids that didn't have the foggiest clue about it before (sorry Mom). So, happy ending. I did wander around the water especially and there were these bridge access ladder things that, looking back, you are obviously not supposed to climb on, but of course I had to be there. The difficulty of getting on there could have been a clue, but, you know, no, because it was that much more compelling to get the perfect view of the dappling on the water.  I also hung around train yards and so forth.

My thinking at the time as far as I can remember, and I have been thinking about this for a couple of weeks so I could report it properly, was sometimes more like, "Whoa, cool," as in a towards-wander, and sometimes, "Gotta-go-now" as in an away-wander, and sometimes it was wandery, but sometimes kind of zippy, like even thinking it was zippy, and even to the point of panicky.  I have the zippy thoughts now, but I do not do them, and this next paragraph is why.

In the away-wandering, I actually stopped doing that rather recently maybe early in this Millennium because I found out how much it hurt people's feelings. It was not easy to stop it.

In the towards-wandering, again, I have a concept of danger now.  I do not recall when I developed this but I no longer think it is an attractive idea to do whatever without thinking about it. There is another faculty that kicks in, another thought voice, that's like, you know, you're going into the street, might want to look for cars not to drive on your foot or your body. I don't know why this started.

A third wandering thing, a slower one, which is slow and in NO way do I mean it to put any onus of "blame" on any family or friends but since this one is not gone and still happens, I have to explain it too.  Also I pledge right here and now to work on it.  This is probably the classic, non-zippy wander, and it is neither to nor fro.  It's this.  Because all my life I have been someone that people think of as having the potential for kind of wandering off, I think I get the subliminal impression that people will follow me, like I secretly think I am the leader of the going of places. Somewhere in me is a belief or a trust that people will psychically find me or they will have followed me in the first place, because that is mostly true.  Again, Mom, I am totally sorry.  When I look back on my audiovisual memory files, especially of that day in the book store, how white with panic you looked... I really am sorry.

So to make a long story short, for me myself I am not thinking much when I go off somewhere, but the truancy from high school was more sort of an emergency, a communication like Landon was mentioning, and I couldn't talk about it because even though I am talkative, it is a new feature of me to be outgoing or really even let's say (to be charitable) coherent about emotions. So luckily, my folks thought of that at that time, because I guess it had a different flavor? I don't know. They are kind of psychic?

And remember this: I hardly ever do it any more, and I'm going to do it even less.

I forgot to say this: Sometimes when I was a youth and I got lost I did not like it once it dawned on me I did not really know my way back at all.  Like, really didn't like it. More panic. Not as if I thought it was dangerous in any reasoning-about-actual-things sort of way, but as if when I newly noticed myself to be not where I normally was, it suddenly became an issue of drastic proportions and felt life-threatening for some reason when prior to that it had been just fine with me.

Now.  This brings me to this.

Some people don't talk, and they are really young, or they are in other situations where they do not have a grasp of dangerousness right now, and the concept of them going out by themselves is really stressful for everyone because they could really get hurt, or dead; and it is a constant glass-in-the-guts worry for people who love them and want them safe.  This is also true of some people with Alzheimer's and Down syndrome, by the way, as it does not just happen with Autism.

Where I live, luckily I am on the Mayor's Advisory Commission on Disabilities which gave me a chance to ask Marita Manning, Certified ADA Coordinator, how they handle that here.  It turns out there's a wonderful grant they got here in Naperville for a thing called Fastrack where NOBODY on it since they started has been lost for even half an hour!  I think that's kind of awesome.  She is the one who trains with a special team of selected Police how to work with the tech as first responders in a rescue so they don't alarm the person and they would also be able to notice if something else was wrong.  So the people are found within thirty minutes AND treated kindly and gently by specially trained officers.

Marita Manning, the Certified ADA Coordinator for Naperville, IL, is the contact person training and liaising with our Police on this life-saving program. She is delighted to have me spread the word on this blog and have anyone get in touch with her so she can explain how to get this in your location.  Marita Manning can be reached at E-mail: Tel: (630) 420-6725 Cell: (630) 421-0260 TDD: (630) 305-5205

[Image: a brochure, scanned. Update written in the cold winter maybe six months later: when I wrote this in the past summer, I did not know that screen readers could not read the words in a scanned document. There are a lot of words in the document, the most salient among them being the information that in this program, the first responder team is a volunteer team of specially trained ones who get to know the people ahead of time and are familiar with communication styles and the whole family dynamic, and they say "locating people is only half the mission" and that they emphasize relationships before the need for a rescue may arise. I think this is pivotal and wanted to make that information accessible because I am sorry that it might take me a while to find this document again and type out the words inside which I will then put as a PS at the end of this post as soon as I can. Thank you for your patience.]

So to make a long story shorter, I have scanned in the inside of the brochure about it here as it works in our town, but Marita told me to spread all her contact info all round the place so that people can get this program into their own towns and special teams of Police can be trained in this way.

With the technology we have now, people who wander away can be found very, very soon, and with the knowledge we have now, they can be found by Police who know how to show the kindness they feel in their hearts toward people who are innocent and in peril.  Just look at the way the brochure is written and give Marita a call or e-mail to get that in your location.  We can stop this danger together.

Everyone please contact Marita so much that Fastrack is available EVERYWHERE and Marita, who is totally kind, is moved to yell at me from being contacted too much.  That's how much contact I hope she gets from this blog being re-blogged.  Hehe.  Laughing but serious.  She's got a grant for this and she can tell your town how to get more grant money, too.  She's brilliant.

Fastrack saves lives all the time.

Once again with the contact info:

Marita Manning, Certified ADA Coordinator for Naperville, IL, can be reached at E-mail: Tel: (630) 420-6725 Cell: (630) 421-0260 TDD: (630) 305-5205

Thank you for listening.