Suspicious of His Penis

“I’m suspicious of my penis. I don’t trust it,” my fourteen-year-old autistic son, Jake, mumbled from the passenger seat.

Sigh. There are so many things about that statement that trouble me.

Along with toileting issues, “weiner” issues are a recurring theme in my household. Jake’s nine-year-old brother would rather poo in his undies than hover a single butt cheek over the commode. He’ll go in his underwear, thank you very much, then proceed to knead the PlayDough-like load with his hand (through his skivvies). (I’m pretty sure I don’t have to tell you people what kind of smells, as well as hygiene issues arise from this kind of behavior.)

If Jax is my problem pooper, Jake is my problem obsesser. If it can be obsessed about, Jake will obsess about it. (See my blog post:” I’m Going to Heaven, Right? )

Jake’s penis is also a constant source of distress for him. In my upcoming book I Wish I Were Engulfed in Flames, I have a chapter called “Tickling the Weiner. ” I discuss how I came to know that Jake found out “tickling his weiner” was normal. The doctor who gave the discussion in health class said so, and all was right with the world (briefly) when Jake got off the bus that day.

Other, more troubling things, were covered in Heath Class this year, but I won’t bore you with all the rape and oral sex talk. (If you’re interested in middle school sex-ed and what it (disturbingly) consists of these days, see my blog post: "Let’s Talk about Sex, Baby")

So, Weiner Tickling, OK. Check. I try not to form a mental image of my fourteen-year-old autistic kid, in his room, doing whatever fourteen-year-old boys do, because if I - blech… Ugh, no thanks.

But these changes in Jake’s body are very disturbing to him, hence the first line of this blog, which he uttered this morning on the way to school. Jake has sensory issues. He doesn’t like the feel of paper in his hands, or the sound a pencil makes when he writes on paper, or the dry sound of someone touching paper. Stop to consider what a fucking ticking-time-bomb this kid has to be on a daily basis, at school.

Paper, pencils, not to mention, he’s very sensitive to sounds, is grossed out when people eat, and gets particularly rattled by certain smells. I imagine the pubescent sights, sounds and smells are unbearable to Jake; kids in the lunchroom eating sloppily with open mouths, loud cafeteria, hallways and (aneurism-inducing) gym class, and the natural funk of five-hundred middle school kids.

Now, add to this, all of these new “feelings” he’s experiencing south of his naval, and you can see how his school day might seem more like being sent to a third world country and expected to immediately assimilate.

I shudder to imagine Jake’s internal monologue. Probably something like, “Help! Me!”

Also, his sensory processing disorder translates these “feelings” that might be considered tingles to the ordinary teenager, into something more closely related to pain. Jake gets one new “twinge” and he’s off on a crying jag - standing, pants around ankles, in the bathroom, with an ice pack or sopping wet washcloth on his private area. These new sensations can freak any teenage boy out, but for an autistic boy who obsesses about everything, it’s more akin to expecting something really painful or freakish to happen any minute - like his penis falling off, or Pop-Rocks® spontaneously shooting out of his “penis hole”. (His phrase, not mine.)

It’s not that he’s actually experiencing pain (I’ve had him checked by a doctor - everything’s working fine), it’s the apprehensive, debilitating “What if?” that plagues him.

God bless this kid. Truly. I’ve got my own hang-ups, but if I had to constantly worry about my vagina falling off, or gummy worms sliding out my who-ha - well, let’s just say I’d be taking copious amounts of prescription drugs.

It’s at moments like these that I truly need people to know how much MORE autistic people have to deal with than the rest of us. How much stronger they have to be than the rest of us. How special they are, compared to the rest of us.

Do me a favor. Today, take the time to tell an autistic family member or friend how inspiring it is that they are able to navigate waters most of us would drown in. Type “autism” into the search engines of Twitter or Facebook, make a new friend, and let them know that they are seen, heard and appreciated; that the extra mile (or fifty) they trudge daily isn’t lost on you.

Or just plain tell them they’re cool. I assure you - the effort won’t go unappreciated.

~*~

Sensory Stew

Picture this:

You’re locked in a speeding car at night, racing down the highway at breakneck speed. It’s the middle of summer; you’re hot, uncomfortable and sweaty. There are sirens wailing outside, and there’s a baby with a stinky diaper next to you, screaming. The interior car lights flash on and off, blinding your senses. The radio is turned up full blast to heavy metal music. Nobody is driving; you have no control.

Now you might have an idea of what it’s like to be autistic on any given day.

You are expected to deal with this, and get through your normal daily routine without exploding. You are expected to listen and follow directions; you are expected to thrive. One after the other, sensory arrows are being shot at you, only your mind is unable to process them in any meaningful way. All noises are translated at the same level, none being relegated to background noise.

Every sense is heightened, over-stimulated.

What must it feel like for them, all of these bothersome things festering in the mind of the autistic child, clouding anything brighter from shining through? Jake, my 13 year old, can’t stand the way paper feels and at school this just has to be nerve-racking. Book pages turning, graded papers being passed out, notes shuffling between hands at every desk; the sensory minefield he has to wade through daily is something most people can’t even remotely relate to. Jaxson, my 9 year old, doesn’t like loud noises or clothing. Yeah, I said clothing. As soon as his feet hit the front doormat, he’s pulling off his clothes. He’ll wear them when we go out and all day at school, but at home he’s a little guy runnin’ around in his skivvies. I have no idea what it is about them that bothers him, but he just doesn’t like being dressed. I buy all cotton, everything loose and breathable, cut out all the tags—still, he prefers life sans clothing. Who am I to begrudge him?

His home is his castle just as it is mine and I want him to be comfy there.

Children with sensory issues must do what other children do throughout their day at school and in daily life, but they’ve got the added burden of wading through an often debilitating sensory assault as they do it.

In my opinion, that’s what makes them a little stronger than you and I.

Below is an example of a Sensory Stew and how Jaxson dealt with it. (READ: His 2007 School Christmas Pageant. Damn my kid is cute! )