The Short Bus Diaries » Confessions About Life With an Autistic Son

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His Mouth

On some nights, as my daughter watches her pre-bed TV downstairs in our living room with my husband, I opt for putting my son to sleep in our bed, rather than lying with him in the darkness of his. I dim the sconce lights low on either side of our bed, and get some work done on my laptop, or catch up on some quiet TV, while my son wiggles around and slowly falls asleep. It doesn’t really make much difference to him where he sleeps, so long as he is lying close to one of his parents.

Two nights ago, I leaned over my sleeping son, appraising his face in the blue TV light. And that’s when I saw his lips.

He has such beautiful features. His eyes are composed of this absolutely amazing set of colored circles, like some sort of pearl inlay in a round table. When he is outside and that natural light fills his eyes (said the photographer), you will notice what I’m talking about — his eyes are impressively colorful and make you appreciate his increased eye contact that much more.

But the feature my eyes settled on the other night was his lips. They were pursed just so, in a way that reminded me of how he looked as a baby. Oh, how I wanted to kiss those lips. I wanted him to be a baby again, passing out on my chest after my short-lived breastfeeding days, when I had nothing but typical parent hopes and plans on my exhausted mind. It was only the fact that I was so damned that kept me from running down to my basement and grab my camera to run up and grab a few images of his baby mouth.

Please pay no attention to the ghostly editing. I was still an amateur when I edited this second image, and thought that desaturation was the mark of a “real” Photoshop genius.

They were children’s lips, and not those of an adult. Not yet, at least.

But the rest of his body continues to change, as the body of a child is supposed to change. I’ve noticed that muscle lines are starting to appear on his arms, a hint of the larger bicep and tricep muscles to come. And sometimes, when I do decide to lay with him in his own room, in the faint light that wraps around the light blocking curtains we installed in order to squeeze out another hour of sleep from him each night…I believe that I can see his face as it will look when he is a man, in that way that staring in the mirror for long enough starts to make the features of your own face distort into something that is different than what is actually in front of you. Squinching my eyes at him in the darkness, my son’s face is no longer sweet and pudgy; it is the face of an adult who needs to shave.

And all of these subtle evolutions of his body scare the hell out of me.

For one thing, will I find myself lying in bed and cuddling with a 30 year old man, who still needs his mommy to drift off into sleep? To say that this image is inappropriate is putting it lightly.

And what about those moments of frustration, when my son is tired and can’t communicate or get his way, and he pinches my skin and bites his cloth “chewy” around his neck? How will that frustration show itself — when those biceps are fully developed — in more painful, injurious ways? I’ve got to be honest: there will come a day when my son is stronger than me, and most likely when I can’t outmaneuver him.

Then there are the more intellectual and emotional considerations: how will I feel when I see my son acting out in a way that doesn’t match up with other men of his age, when there is no more “writing off” by society of his behaviors as “just another kid”? And how will I go about accepting the “stims” (the random giggling, the high pitches screams that must tickle the right spot in his brain), or the random hugs that feel so nice now but would be socially out of place in the grocery store, when he is 20 and I am 50)? Can my son eventually be trained to act “appropriately” in public, and become socialized in the way other children absorb relatively effortlessly by the time they are 5-6 years old?

I just don’t know. And the not knowing and the constant wondering is like living in purgatory the end of which may never come, since they say that the human brain is capable of changing in ways that cannot be predicted, and over the course of one autistic person’s lifetime.

We have witnessed a few small improvements in my son, since we gave up on waiting for DC Public School’s to exercise every possible legal angle in order to avoid placing him in a private school. Now, we see signs of the boy “in there”. We see him do things that wouldn’t make a parent of a non-autistic child stop dead in their tracks:

  • He opens up a Where’s Waldo book to gaze at the drawings for a few minutes. He hasn’t opened a book to look inside…ever.
  • He walks to the bathroom sink, picks up a cup nearby, turns on the faucet, fills the cup with water, turns off the faucet, drinks from the cup, and puts the cup back. He does this as naturally as any adult would.
  • His swing slows because he does not yet know how to pump. He sees me walk into the room and asks me to “push”. He selected the right verb, without prompting, and it was a verb that we don’t use very often. So that word was in there…in his brain…somewhere.
  • He sometimes cries now with such anguish, howling with emotion and yet unable to verbalize what pains him — whether its physical or emotional in nature, we cannot say. Is this a sign that he is coming to terms with his inability to verbalize the intellect that is developing within him — and therefore an important developmental milestone that we should tentatively celebrate as a sign of more complex things to come? Or is this the furthest extent to which he will ever be able to express his frustration, and therefore one more manifestation of the permanent wall that sits between his brain and the world around him?

I am well aware that there is no cure for autism, and no point past which my son is likely to go when he will be one of those rare people who “lose” their diagnosis. His stims and OCD continue to evolve and will always require explanation and draw stares from people — a fact that is sure to become more immutable as he eventually loses that “children do the darndest things” dismissive explanation from passers-by. And I really don’t know if or when the positive changes that we are seeing in him, since placing him in a specialized school, will slow down to a point where I say “OK. Who he is now, and what he is capable of now, is where he will likely remain for the rest of his life”.

Not being able to see the end of his developmental arc right now is a place that allows me to be hopeful. But it is also a place filled with some fear. I can’t quite get a hold on where I am supposed to stand in relation to him — if that makes sense. I don’t know whether I should quietly absorb the surprising developments we witness in him, not celebrating them too loudly, in order to avoid “jinxing it”. Or if I should prepare myself for a lifetime filled with little victories that will still ultimately leave me as a parent to a son who will never be able to live independently or communicate his needs completely.

So back to the thing that launched this long-winded post in the first place: his lips.

Who will my son be when those lips that I gaze at now with such maternal nostalgia are surrounded by facial hair, creases, and even wrinkles? I hope I will one day hear a sentence leave those lips, filled with distinct words and clear intent. But that image in my mind still quite blurry right now, as I wrap my arms around a boy who needs his mother — in many ways — nearly as much as he did when he was a baby.

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