Susan Senator

They never tell you what it’s like because they are still struggling with that realization themselves.  Tell you what it’s like?  I got my own problems!  So we all have to find out.  We all do, over time.  Maybe autism is your first time.  Childbirth itself was the first thing for me that made me realize down to my bone marrow that life was not going to the way I had planned.  Autism was the second thing.  I hadn’t even planned, actually; I had expected.  In my mind there was a semicircle of things spread around me that were possibilities, back when I was pregnant with  Nat — little girl storybook things like “he’ll look like me; he’ll look like Ned.  He’ll be into school; he’ll be kind of bad.  I hope he won’t become a criminal.  I hope he doesn’t have a disease.  I should breastfeed him so that he’ll be healthiest.  I’ll research the stroller safety, the crib bar distance.  I hope the cat will like him — what if they don’t get along?”  So adorable!  I was a baby, too.

Once Nat was born, the semicircle became a circle, stretching behind my back, to things I couldn’t see.  I had no idea, before his birth, how the worry about his pure survival would give me a permanent feeling of anxiety; it just would not go away.  How in the world could such a soft pink hairless boneless creature survive?  What?  It’s all up to me?  That’s just crazy.

But I got over that, inured to it, callused.  So I could just do what it took.  Become a young mother, no longer a carefree girl (well, let’s face it, I was never carefree.  There’s always something to worry about, after all.  As a fourteen year old:  will that boy like me?  As a ten year old:  will that new girl be my friend? As a six year old:  can we go to Old MacDonald’s Farm for my birthday?

So the young mother sloughs off some of that flawless youthful skin and suddenly has circles under her eyes.  Give up the damned dream of breastfeeding because how could it be the right thing if he howled like that, clearly starving?  No no, it could not be right.  So they were wrong about that.  The bottle was better for this baby.  What else were they wrong about?

Guess what else they were wrong about.  This baby was not progressing the way all the books said.  I could not interest him in anything.  Yet he was clearly happy.  Was it the case that babies were not all alike, that they did not all watch Sesame Street or delight in rolling a ball?  That they didn’t give a shit about other babies?  Like people, they were all different!

Gradually, I figured it out.  Or in sharp ugly bursts of awareness.  Oh.  Oh God.  It’s the worst thing that could possibly happen to a person.  It really is.  My child has something wrong with him. What now?  Penelope Leach and Dr. Spock and Brazelton had no answers for that one.  Neither did my doctor.  All the people I’d looked up to, suddenly the mask slipped and I saw that they were as young and stupid as I was.

When you see that, you lose years of life.  So I became a much older woman at that point.  I was “seasoned.”  I was seasoned so much I was like Cajun food.  My flesh became plump and yet not all that juicy.  I was completely thrust into the mother phase of life, where my job, my identity became all about being strong for someone else. I had to take extra special care of this child because he had something.

I became old beyond my years, as they say, and because I eventually figured out how to survive that stuff, I was deemed wise.  I was wise simply because I was not dead, and neither were my kids. There were more ugly surprises along the way, rabid bite-in-the-ass kinds of surprises, like sleep disorders, manic behavior, aggression.  Traumatized siblings.  But there were other issues, other tragedies, completely unrelated to autism.  I didn’t know that things could be even worse.  Terrible mistakes, irrevocable scarring. Things wrong with people, not just Nat.  Nat turned out golden and beautiful, strong-limbed but flexible.  Brilliant in his own way.  Max and Ben, they struggle, they are scary, too.  Children grow, all of them, no matter what they “have.”

And here’s the thing:  People leave.  They leave you, in all kinds of ways.  I find that now I am increasingly grateful for the ones I still have:  children, husband, parents, friends.  Life.  We never know for how long.  We forget, unlike the cavemen or the poor desperate Medieval folk, that we are completely vulnerable organisms.  As soon as we know that, once I knew that, I became old, like the boy wizard who read the Book of Knowledge and overnight had a long white beard.  I am on the other side, an older mother:  aware, all too aware.

The part of me that is wise, though, is not that I know so much.  It’s only that I now know it won’t last forever, and whatever it is, I am damned lucky to have it.