Tuesday, May 3, 2011

Thoughts on my son's getting older and getting stranger

An odd, tough twist on a familiar saying keeps running through my mind: "The older they get, the further they fall."

And I know I'm thinking about Jake, and how much distance is growing between he and his twin, as Ethan sprints ahead into sophistication, maturity, leaving his brother in the dust.


Having a toddler on the autism spectrum can be very frustrating.

However wild your other children are, they can be so much wilder. Or, conversely, uncomfortably tame, absent, self-contained to the point of disappearance.

They can be fearful, unable to explore their environment due to anxiety and sensory issues. Or, like my son, so busy exploring, feeding their sensory hunger that thoughts of safety are, well, I was going to say last on the list, but really? They don't even make the list.

It's more like: Safety? What is this safety of which you speak? Ooooh, shiny & spinning... and... he's off.

But also, in some ways, they are not so unlike other toddlers. It's often a (cumulative) matter of degree.

Many toddlers have tantrums (autistic ones usually more so).

Many toddlers are hard to understand, communicate with difficulty (autistic ones usually more so).

Many toddlers have problems with self regulation (autistic ones usually more so).

Many toddlers put odd things in their mouths (autistic ones usually more so).

Many toddlers are out of control in stores and restaurants (autistic ones usually more so).

Many toddlers screech and make silly noises (autistic ones usually more so).

Many toddlers spin and roll (autistic ones usually more so).

Many toddlers are odd or picky eaters (autistic ones usually more so).

Many toddlers seem "crazy" (autistic ones usually more so).

(and I could go on)

So an autistic toddler, while usually beyond exhausting to his or her family, often doesn't stand out quite so much to the world.

Those of us who are there know, can see the telltale signs, but on a playground you have to look hard to spot them among the general chaos.  They can sometimes pass; pass for "normal" (whatever that is).

But then your little kids grow up.

By the time your children are eight and a half, like mine are, by the time they are in 3rd grade (or something like it), depending on how deep on the spectrum they lie, passing's frequency can be limited, to non-existent.


I am on the bus with my son Jacob and I know we are annoying the person sitting right next to us. But Jake is happy, talking up a storm, interacting with me. So really? I don't give a shit.

(And some days a small part of me is comparing. Comparing what being out with Jake is like, vs. with Ethan. And it's never good for my brain when I go there, so I try to shut that down fast.)

Our conversation puzzles people, they double take because I sound like I am talking with a much smaller, younger child that I am seen with. Jake makes declarative statements I agree with. I answer simple questions (over and over again) with equally simple answers.

"Is that a Dad, Mommy?"

"Well, Jake, that's a man, he might be a Dad."

"He has brown hair Mommy."

"Yes, he does, Jake."

My voice when out with Jake is less casual, more drill sergeant.

I say to Ethan: "Hey, E, our stop is coming up soon, so lets get ourselves ready to get off the bus."

I say to Jake: "Jacob, Next Stop is ours. Jake! Be ready. OK, Up, now. NOW! Right now, Jake! Stay with me!" I am sharp, directive.

Then solicitous: "OK, Honey this way, stay close, down the steps there you go. Good job!" Like with a toddler. My four and a half foot, 80 pound toddler.

And while the annoyance of strangers I easily shrug off, sometimes I can feel looks of pity floating my way. And the pity? That, my friends, is much harder to take.


And then there is this:

Jake drops my hand in the middle of crossing a busy street and runs ahead to the other side because the back of the phone booth has a big old ad for Rango on it and he must go worship.

When I catch up to him, puffing (I really am too old for this shit) he is so happy, smiling, pointing (Pointing! Terrific!): "Look Mommy! Rango, Mommy! March 4th, Mommy! Rated PG, Mommy!"

And I need to berate him for running ahead, make him understand how serious an offense that was.

But he is sheer joy at this moment and I hate to make him cry which he surely will when I chastise him.

His eyes do go wide and brim with tears when my voice goes stern and my face turns severe; so fragile is my child, so sensitive.

But it's better than those other days when the wildness is in him and he laughs manically at everything, including corrections. Between the easy tears and the crazy laughter, I don't know which one is harder.

On the days with tears I know at least something is getting through to him.

"I'm sorry Mommy" he blubbers "I'm sorry, I'm sorry..." over and over and I am the ogre who has made my sweet son cry.

But if he is ever to have any independence, if he is ever to have any hope of negotiating this complex world without a chaperone standing by? He needs to learn and remember the basic rules of safely, which at the moment are so far from his thoughts.

So I kneel down and hold my son on the busy Broadway street corner, and slowly he calms, complains his glasses need cleaning now. And as I dry them with the corner of my scarf, his eyes light up. "Rango!"

"Rango, Mommy! Opens March 4th starring Johnny Depp rated PG, Mommy!" he proclaims, enthralled by the re-spotted poster.

Even though it is April. Even though he has already seen it. Twice.

He is happy. Again. And thus, so, wanly, am I.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say

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