Tracks

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See the tracks in the picture? The ones heading toward the swing on which The Boy is perched? Look like tire tracks, right?

Nope.

They’re from The Boy himself. From walking and stimming as he does when we are home. And apparently he does it in such a repetitive fashion that you can now discern his route. The track on the right is for leaving the swing area, and the track on the left is for heading to the swing area.

Ever wonder why some of our kiddos get obsessed with train schedules and maps? With routines? Have wonderful memories for directions?

Makes me want to geotrack him…

Being “On Call”

I’ve seen reports from studies that indicate that those of us who parent a child on the spectrum often suffer from similar symptoms as those with Post Traumatic Stress Disorder, and does anyone really wonder why?  We are in a constant state of alert, listening and watching for any signs of anxiety and stress that are in a state of escalation.  As some of my fellow bloggers have written, we know our kiddos littlest sounds and know every bit of that language.

We were at the convenience store the other day, and we stop so often that the woman behind the counter, who really means well and tries to understand, takes it as a personal accomplishment if she can get The Boy to say hello. He happened to begin stimming and galloping toward the door, and she said, “Oh no! What’s wrong!” I calmly explained that that was his “happy noise,” and we finished our purchase and left. I realized that most people wouldn’t know that.  Most people also wouldn’t know that the “errr” that has bit of an edge to it and comes quickly after a question is asked is a sign of irritation and disagreement that could escalate, or that pounding either on the floor or any hard surface often is a precursor to pacing, at the very least, and a meltdown in the worst of times.

Listening, watching, and being “on call” for these little noises and behaviors 24 hours a day, 7 days a week can be exhausting, and why I so appreciate our weekly date night.  For one night, I can stop listening and just relax.

on callIt’s also another reason my current job just isn’t working for me.  Even though I don’t get paid much, I am expected to answer texts, emails and phone calls even when I am not at work.  Do I have to?  No, but the expectation is there (and believe me, I’d be in the dog house at work for quite awhile if I just ignored it), which means I can’t even have a weekend where I’m not jumping at every notification from my phone.

A big reason I left teaching was because it took too much from me, and I didn’t have enough left for The Boy when I got home. Now, it seems I have jumped right from the frying pan into the fire. I’d love to only have The Boy to be concerned with, and not other people’s ridiculous concerns about lunchmeat and plastic leis.  The Boys crises I have come to expect, know, and understand.  Anyone else’s seem assinine in comparison, and it’s that that is getting old.

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part I

reasonIt’s been quite a while, but I’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

When asked (Q25) Why he jumps (or stims), Naoki says that those on the spectrum “react physically” to emotions, and that their bodies at that point do not allow them to move as they wish.  Jumping allows him to shake “loose the ropes that are tying up my body.” This is an interesting perspective and while it goes along with the accepted understanding that stimming “feels good,” it adds a piece that wasn’t there before – it feels good because it is an attempt to free oneself from a body that doesn’t react exactly the way one wants it to.

Question 27 asks Naoki why he covers his ears.  He explains that it isn’t the volume, but rather that the multiple noises become disorienting and scary.  Covering his ears restores his sense of where he is, and allows him some control over his surroundings.  I think we often forget what a struggle it is for many of our kiddos on the spectrum to process sensory information that has absolutely no effect on us neurotypicals.  Add that to my list of basics I tend to forget!

In his answer to Question 28, Naoki reaffirms that many on the spectrum have no sense of where their limbs begin and end, and that results in awkward movements and the inability to know when he’s even stepped on another person’s foot.  This is why I think The Boy loves water as much as he does, because it provides that constant sensory input to let him know where he begins and ends.

Question 31 deals with eating and why some on the spectrum are “picky.” Naoki says he doesn’t really have this issue, but understands that for those that do, “only those foodstuffs they can already think of as food have any taste.”  Everything else, i.e. new foods, are received as play-food that doesn’t sound too tasty.  He hypothesizes that it may just take more time for them to “appreciate” the taste of unfamiliar foods.  This explains a lot. Often, if I can draw a connection from one food that The Boy likes to eat to another unfamiliar food, he is more willing to try it, and this explanation is a pretty good one, I think.

There are a few more questions in this section that I will tackle next.  This is one of those books that is great to read, and re-read again and again, as you’ll pick up something new each time, I think.