We went to buy school year supplies (yeah, it’s getting to be that time of the year again!), and while we were shopping for Simon’s middle school list – and just what are “long map pencils,” anyway?? – I went ahead and found two things I wanted.
One – a pencil case. I needed a new one, and for $3, what did I have to lose? Apparently, three dollars. The case does not open without swearing, cursing, praying, and a little bit of human sacrifice. And then, once it’s closed up again, you have to go through all of it all over again. I’ve already popped off the price, not thinking that this would be quite the piece of shit it is. Sigh. So there’s one waaaaah.
Two – an “InkWorks” (I’m calling you out, you damn crappy-assy company!) pen that claimed to let you “Flash your Stache.” Mustache, of course. It is a blue pen with a button, and when you press the button, it projects a mustache. Brilliance! Well, partial brilliance. While the pen has no problem flashing the mustache, once you twist the ballpoint once, it stays open. Forever. It doesn’t matter what you do to it. Apparently this was a single-use ballpoint. I wouldn’t have minded so much if it had specified that or if, say, it again hadn’t cost me another $3 or $4. So another waaaah!
All I’m saying is, I blew like $7, and right now, I have two completely non-functional items. Waaaaaaaaaaaaaaaaaaaaaaaaaaaaaah!
First, let’s get through the definitions. Elopement, as it refers to autism and other disabilities, occurs when someone wanders away from a “safe environment. Typically, they will leave to get something of interest, such as water, the park, or train tracks – or to get away from something, such as loud noises, commotion, or bright lights.” As AWAARE.org points out, “dangers associated with wandering include drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization and assault.” Other terms for elopement are wandering, running, bolting, and fleeing. It’s dangerous, and it happens all the time. In fact, just in this past week, several children engaged in elopement behaviors, and not all of them were found safe.
So that’s clear now, right? Time to move onto secondly…
There were two cases this past week, both in Texas, that are to me absolutely horrifying.
In the first, here in the Houston area, a 57-year-old woman who is autistic, cannot speak, and suffers from a heart condition, was left in the back of a van for five hours. Her driver was supposed to take her to an adult day care. Instead, he left her. At this point, no charges have been filed, and in this version of the article, it makes it sound like an accident. But in a version that has since been removed, family members had commented on the fact that she had bruises and injuries as well, making them fear that it was more than just leaving her in the van. Is that part true? I don’t know – news isn’t always accurate. However, at this point, she is unconscious and in the hospital with no statement on whether or not they think she will survive.
In the second, up in Dallas, a man (age currently unknown) with special needs and “the mental capacity of a small child” was found dead after he’d been abandoned in a Honda CRV. The home he’d been living is was supposed to drop him off somewhere off-site for the day; apparently the neglected to do so and neglected to notice him all the way back to the home, and then they further neglected to notice he was still there when they parked and went inside. It was at least five hours for him in that heat.
I’m just absolutely horrified that this happened not once, but twice, and both times here in Texas. What does this say about the “homes” these people are living in and the care they are receiving?
Hubert Humphrey once said, “The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.”
I think we can tell how moral Texas is. We do not have enough laws in place to protect those who need protection, and when there is a breakdown and rules and laws are not followed, there is no follow-through on those protections. Why has no one been charged? How do you forget another human being? These are adults; they are noticeable, and they have special needs that need to be taken into consideration. Yet somehow in both cases, they were ignored, and being ignored led to one being hospitalized and one being killed.
Obviously, this hits home for me. I worry about what will happen to Simon one day in the future. Will he get ignored and left in a van? Will he be mistreated by caregivers? Will anyone step up for him or stand up for his rights and needs?
I can only imagine how the families feel, and I can only imagine what the individuals went through during their ordeals.
What I don’t have to imagine is what should happen next.
We need to know when these things happen, and we need to make noise about it. We need to be vocal about what is happening around us and what needs to happen in response. If these were more heavily reported and spoken about, maybe something could change. Maybe those of us who rely on other caregivers will not have to be constantly living in fear that someone else’s mistake will become suffering for our family members.
This really got me thinking that maybe the police aren’t really looking as carefully as they should…
The first time, back on July 2, in New York when they found a walled-up teacher reported missing by her husband (who was, of course, probably the one who murdered her and walled her up in the basement), could get a buy. Yeah, who thinks to take down a basement wall when you’re searching, right? (Although perhaps the false wall was a bit of a hint…or maybe they never read Edgar Allen Poe…)
But then, on July 16, a widow was charged after they found her husband (quite dead) buried in the front yard. The *front* yard. Yes, it was a “rural home,” but still. The front yard. It doesn’t even sound like she tried to hide it. She totally put him right out front. I’m surprised the tombstone didn’t give it away! (Okay, so it doesn’t actually say there was a tombstone…but why not, eh?)
And, no, I really don’t want to make too much light of this. Let’s be honest and fair: two people died. Two people were murdered. But it’s just hard to believe that the crimes went unsolved for so long when it should have been obvious to even Mr. Bean what had happened.
Yes, that’s right. Not a misspelling or typo. “Bearing.” Why do I say that?
Let me start by saying that I have been working on this blog for over a week now. Some of my original notes go back over a month. So I’m trying to pull all those thoughts together, and there may be some weird transitions. Fair warning. But I think it’s worth your time to read.
To be fair, it’s more than a month worth of thoughts. It actually goes back 23 years ago. Seriously. Twenty-three years. I took a class to learn to play guitar. And my guitar teacher asked me out. Our first date was to the 4th of July fireworks in Maplewood. The days before cell phones. We tried to meet “at the bank,” but there were multiple banks, and it took us a while to actually meet up. Obviously, eventually, we did find each other, and we got to go watch the fireworks.
Now we can flip through those 23 years to present day. On this 4th of July, we decided to take Simon (now 11 years old) to the fireworks. For those who don’t know him, he’s autistic, and he has a number of sensory issues, so we hadn’t taken him before. But this year we decided to try. He was on a new medication (that he isn’t on now – more on that later!), and we thought it might help him enjoy the fireworks.
And you know what? He loved the fireworks. Seriously loved them. Knelt down on the blanket with us, rocked back and forth, and kept saying, “Fireworks!” and repeating the warning we’d given him, “Loud!” but he didn’t seem to mind the loud at all.
So where does the jealousy come in?
We didn’t go to this year’s fireworks alone. We went with our neighbors. They have two kids younger than Simon. Both had already seen fireworks. Both, when the ice cream vendor came along – wanted and ate ice cream. (We bought some, and he tasted it and refused it…although that may have been because it was some nasty ice cream…) (But I digress…) The point is that Simon was having his first fireworks and unable to communicate what he really thought, other than the words we’d given him, and it was years after the average age. Which leads to so much more…
We had to take him off the medication he’d ben on that day because we realized that, while it helped him focus, since it was a stimulant, he was beyond cranky and irritable. Before the med, he wanted hugs and kisses and attention. On the med, he made a lot more frustrated grunts and did a lot more frustrated behaviors (self-injurous), and wanted nothing to do with human contact. Focus is great, but misery is not a good side effect.
And now’s when things get – I think – even more confusing. And overwhelming.
I don’t want my child to be a guinea pig. I don’t want him to be over-medicated. I don’t want to just pile on medications, each one having side effects that other drugs are supposed to cover. And it goes beyond the medication and its controls. It goes to the question of artificial constructs in his life.
In June, he had a birthday party. He wanted a party. He likes parties. He may not eat the cake, but he likes to blow out of the candles. He may not play with the toys, but he wants to open the presents. But did he care about the other people there? We invited his “friends,” but are they really his friends? Does he consider them friends? Does he have a definition of friends? He didn’t seem to care at the party, but do we know what he cares about? We construct these things for him to try to give him a level of normality, but is that a good thing? A necessary thing?
And, again, jealousy comes up. Other kids, by the time they’re 11, have friends. They play with toys. They eat cake. They answer questions. Their parents don’t wonder how fair their children can come (or go) or how hard to push to try to achieve things. Where do we draw lines? Where do we say, “Screw it all! Let’s just aim at being happy!” When do we stop questioning the choices we make and the life decisions we have to make for someone else – someone who has feeling we may not understand? Wants and desires we can’t conceive of? A lack of patience we can’t expect to go away? No method of communication for these things?
Now – another shift.
Back to medication. We decided that the medications he currently takes are too many and too unclear. He had gotten up to four different meds. One for aggression (that’s actually a drug for schizophrenia). One for anxiety. One for focus and to help calm him a bit. One for ADHD. And then we stopped the ADHD drug since it was a stimulant, and its original purpose was to help him focus so that he could finally be fully potty trained. And it sure wasn’t going to help with that.
So when we stopped drug number four, which was not the first time we’d tried a stimulant, we decided to rethink the medication. What about dropping them and starting over? Why give him all these meds, no completely sure how they were truly functioning or whether they were truly necessary anymore? We went to his psychiatrist, and she went for it.
We started peeling back on the drugs. We started with the first one – the aggression/schizophrenia drug – dropping it from .75 to .50, with the intention of going to .25 and then off. We moved it to .50. And then we got texts/messages from his school (he’s in their “Extended School Year” program for the summer). He’d had a major meltdown and needed to be restrained. Immediately, those questions popped up. Was it the reduction in meds? The fact that another child was screaming and his sensory defensiveness kicked in? The fact that he’d been in a bad mood because he’d had his television interrupted to go to school? His upset stomach? Was he overly tired? Overly excited? Anxious or stressed because he’d just started back up at ESY after a week off? Something we couldn’t even guess at?
The head of special programs at his school had the right attitude, though, when my husband texted back a “Sorry” in response to the incident. She texted that “You should never apologize for your child. He’s trying to communicate something, and it’s our job to figure out what that is.” (By that time, he had completely calmed down and taken part in a “pretend cooking” class.)
But even then…how do we know or judge anything? What was that message he was trying to communicate, and will we ever get it?