Thick Skin

We all need it to some extent.

I think it's safe to say that most if not all parents will spend some time in the spotlight of public scrutiny at some point because of their child(ren) - some times it's good, sometimes not so much, but kids are exceptional at grabbing attention and generally have no problem sharing it with you.

"Mom, that lady is going to die isn't she? She's smoking and you and daddy said that people who smoke will die." Me, at the tender age of 4, out loud to my mortified mother, as we were standing at a grocery store check-out next to a woman who was smoking.

(Apparently my propensity to speak my mind started early? Sorry, mom...)

You get the point. All kids do and say things that can focus attention on their parents, kids with special needs are not, in fact, special, in that respect.

But autistic kids' behavior can and does get people's attention more often than most. Because it's not always awesome , at least as far as the rest of the world is concerned. So as the parent of an autistic child you likely experience more than the usual amount of less-than-positive attention/judgement. I've written about this before, but more from the perspective of Toad's behavior or the actual responses of others to it. 

Not really from the perspective of dealing with it, though.

 

It's a bit of a shock, to say the least and a thick-skin is a requirement to survive. If you don't start out with one, you will likely develop one quickly because people are cruel. That's really the long and short of it. Or, you do what I did - because contrary to what you might think from reading some of my more recent posts, I do not have a thick skin, I never have - and you isolate yourself.

I did this early on and for me it was probably 50/50 - keeping us out of the public eye, but also keeping Toad from being upset as much as was possible. This was back in the days of his 3-hour tantrums and shredding the skin from his ears with self-injury. As much as I don't like being stared at or having horrible things said to me and my children, I also didn't like upsetting my son - clearly there were situations that were just too much for him, so why on earth would I insist on putting him through that? But, some things were/are necessary so the occasional trip to the grocery store (because you know, eating... ) was about all I ever did aside from the various therapies.

Ah, the grocery store. I say "the" as if there were only one, but in reality I shop at several, and especially back in those days, I think there were 6 stores on my regular list. Again, partly due to necessity (Toadie was GFCF for a couple of years) but partly design - I was afraid that the more time we spent in any given store, the more likely it was that we'd be asked to leave at some point.

So I spread the love and Toad's melt-down's around as much as I could.

Of course that doesn't, and didn't, stop the staring.

I have had more people staring at me and my son than I could ever possibly count. And it still happens, even though Toad is much more easy-going these days than he was when he was little, he still gets unhappy in public sometimes and at this stage of the game, he may not go on for 3+ hours but what he lacks in sustainability he has made up for with some serious volume. And pushing the back of his pants down. Which when combined, might be cool if you're a member of Wu Tang Clan, but not so hot at the local Safeway. I became much more comfortable managing him out in the world as the years passed, but the staring still gets to me sometimes.

What does staring accomplish, exactly? Aside from information gathering, which is understandable, what are we really doing when we stare? I ask because with kids like Toad, the disability is not obvious. So the information that people are looking for just isn't there. With the lack of an obvious answer/explanation, is there some notion that the longer you stare the more likely it is that the answer will magically appear? Or is it more of a means to communicate without actually having to take the step of face-to-face confrontation? I suspect it's a little of both, though more of the latter.

Staring is a way for people to say, "hey lady, wtf is the deal with your kid and could you please go away or at least make it stop?" without actually having to SAY it. Of course there are the occasional sympathy stares, you can tell the difference, but those are few and far between. Mostly it's the first one.

I have, over the years, perfected a stare of my own. I call it the "Am I making you uncomfortable? Good, because that's exactly what you're doing to us" stare. It's 100% effective. The frustrating part is, I'm more than happy to talk to people or answer questions if anyone were ever to bother to ask me what's going on, but no one ever does.

They just stare. Or make comments under their breath or to each other. Sometimes if I'm feeling particularly brazen I'll say something. But mostly I don't.

This is not to suggest that there aren't wonderful, understanding/accepting people out there. There are. But usually we find them to be people we encounter regularly, who have gathered some information about us in some way either directly or indirectly, or, have some experience in their own lives with autism already.

Now yesterday, I had the entirely un-anticipated experience of being the focus of the hard-starers at the grocery store - me, not Toad. And to be honest? Given what was going on, I can't really blame them. From the outside, not knowing what I knew, it must have looked pretty bad. You see Toadie's been sick for the last week or so. He's getting better, but not 100% yet, so he's been home. I didn't leave the house for the better part of last week, but the fever is gone, and even though he's pretty tired and has a bit of a cough, he's ok to be out for a bit now. I really had to go to the grocery store so off we went. Now one thing to know about the Toad-man: everything is sensory, right? This includes coughing. When he starts, he will often force it to continue to the point where he actually gags himself and, he has thrown-up as a result on several occasions. So I know to watch for this behavior, and, I know how to stop it. But I have to get his attention and I have to tell him "stop". You can see where this is going, right? We were at the store, and he wasn't too thrilled about being there and was making that known. I did my best to keep the plumber-pants at bay and just tried to get done as quickly as I could. He started coughing as we got to the produce section and he went in to the behavioral cough quickly - he wanted to leave, he wanted my attention, that was a very smart move on his part. But I knew what he was doing. After all these years I can tell when the cough changes to the one that he perpetuates. So I pressed on. But dude, the PRODUCE SECTION? Of all places, where the food is all out in the open and there's Toad sounding like his lung is about to make an appearance from his throat. I could literally see everyone moving away. Here's the kicker: in order to prevent him from self-induced vomiting via the forced coughing, I was in his face, telling him to stop. Which is what I need to do, and then he does, but to those who have no idea what's going on? Right. Mother of the Year right here, dragging my poor sick child to the store and look I'm all up in his face telling him to STOP COUGHING?!? Yep. For all I know I am now the subject of someone's cell phone video on YouTube titled: Parenting Fail and The Stir will pick it up and write something terrible (for the record - I'm not angry or yelling at him, but I HAVE to get his focus on me and that is just what works. Sometimes blowing in his face will do it too, but not when he's really in it). 

I can't blame anyone for the way they were looking at me yesterday. They had no way of knowing what was really happening. Still, not a very nice feeling at all.

 

SO. Aside from teleportation (duh!), the technological advance I think I'd really like to see would be Pop Up Video, except live. For those unfamiliar with the VH1 series, Pop Up Video basically took music videos and added "thought bubbles" but instead of thoughts, the bubbles had information about the making of the video, the musician, behind the scenes things, anecdotes, etc. Look, here's one now:

Ahhh, the 80's were fun, weren't they? :)

 

This would help. Little pop-up bubbles just appear and everything is explained with some humor. I don't need a smaller phone, nor a smarter phone, nor a phone that wants to be my personal valet. I need pop-up video for real life with the Toad.

 

Or perhaps just a thicker skin.