Where is the "Care" in "Caretaker?"

In this area, the recent death of a 20 year old autistic man is the subject of much sad conversation. He was left in a van after the driver ... forgot? ... him following a trip to Sesame Place that was made by four residents and two staff people at his residential facility.  People are, of course, horrified, sad, and fearful for their own children.


I think of my own son, and am, perhaps unfairly, relieved that he is high functioning enough that he is not so dependent on caretakers to be likely to be in this kind of situation.  It is inexplicable, to me, that two staff would have trouble keeping track of four clients.  In a prior lifetime, I worked with severely retarded "adolescent age" individuals (at the time, and in the place where I worked, that meant individuals from age 14 to 28; "retarded" meant anything from what we now consider cognitively impaired to autistic - as long as the person functioned as someone with a chronological age of 2-4, they were considered retarded).  I took two or three, by myself, to the local shopping mall.  It was "exciting."  It was sometimes a challenge.  Since I was a young worker at the time, and some of my charges looked "normal," I got some strange looks, but I never had any trouble making sure I knew where they were at all times, and I could never, never, have forgotten one.  The responsibility of taking care of these vulnerable and defenseless souls was very real to me.


Fast forward to today.  My son goes to ESY - Extended School Year.  I got a text message from him at about the time he is supposed to arrive at his program.  "The bus driver almost forgot to drop us off at school."  !!!!!  How can a bus driver, whose sole purpose is to transport children to a particular program, forget that he is going there?  There are only three children on the bus, and they all go to the same program.  Where was he going to go?  What if the children weren't a group of high functioning, verbal kids?  What if they were withdrawn, non-verbal, or sleeping?


What is going on, that people who are entrusted with the care of defenseless, dependent others, take their responsibilities so casually that they can "forget" those people in cars, vans, buses?

Eye Contact

I don't remember how the conversation got started, but somehow, the conversation did.  It's not unusual, in our household, for the topic of eye contact, to become a topic of conversation.  I guess that's not a "typical" topic of conversation, but then ...  Anyway, the issue of "you can have attention, or you can have eye contact, but you can't have both" came up, and my son was saying, while seeming to look directly at me, that he wasn't making eye contact even though I might think he was.  It seems that he has figured out a way of appearing to look people in the eye, while, for his purposes, not "making" eye contact.  I haven't gotten the full story yet - these things come in increments, and if I push too hard, I may never get the information, so I will wait, and get the pieces as they come, but it seems that he can look at people, without his attention being focussed on the eyes, so it isn't, in his view, really eye contact.  It works!  For his conversational partner, he is making eye contact.  To him, he is not, so he is not made uncomfortable.  As he was telling me about it, he said, "but I never know for how long I'm supposed to keep looking!"  It was at about that time that I told him he was holding his eye contact a bit too long - and too long gets creepy.  We both laughed.  He was in one of his moods when talking about these things was funny and it was okay to laugh about it.

The funny part of this is that we still run into lots of people who expect eye contact as an indication that someone is paying attention - people who know that it doesn't work that way, people who know that eye contact can be distracting and can interfere with attention.  When the people who know that still require the eye contact, how can we expect the people who don't "get it" to learn what we need them to know, and even more, to put it into action?  How can we get our children's teachers/therapists/providers to understand that on this issue, in particular, our children do not communicate the way that they do, and their body language is different - that those people need to "learn a new language" in effect - in order to communicate effectively with our children.  It is estimated that only 10-20% of communication is conveyed through the words we speak - the rest is through tone, body language, prosody, etc.  Well, if our children's tone, body language, prosody, etc. is different from the norm, some of that may be able to be shaped in speech and language therapy, but some of it won't; and to the extent that it won't, they need to have providers who are willing to support them by learning their language, and not constantly demand that they "speak" a foreign language.  Speaking a foreign language, no matter how fluent one becomes, is very exhausting.