Susan Senator

“You want to change something, you start by changing just one little thing.”

“No fair feeling bad about feeling bad.”

— Ned

The thing nobody tells you when you plan on having kids is how much it hurts. I am not talking about labor and delivery, though God knows that is pretty painful stuff. I am talking about what you feel for them afterwards. I remember the earliest feelings of looking at Nat felt like a pressure in my nose and throat, like wanting to cry. But it wasn’t sadness — not exactly. It was this feeling more like, “Oh, God, I almost don’t want to love you because if anything ever happened to you I could not bear the pain.” I remember feeling like I almost did not want to become too attached to little Nat because I was afraid I would lose him.

This, I feel compelled to explain, is not the same as rejecting one’s child. It is more like the opposite. I was paralyzed by my love for him that I did not know what to do about it and everything came out like tears.

My fears soon translated into crazy behavior. I became a Neat Freak. A Germaphobe. An Obsessive-Compulsive. A Nervous Wreck. I worried that he would become sick at the slightest little thing. I washed everything. I washed my hands so much that the skin wore away in places and didn’t really recover until after Max was born. This was just as well because I was, as they say, totally uncomfortable in my skin, so who needed it anyway?

It is so strange (still) to realize that there was something brewing inside little Nat, a whopper of a thing, and what that means. Was I running away from my earliest perceptions? Or was I just dealing with some of my own twenty-something stuff (Quarter-Life Crisis)? I don’t think I’ll ever really know.

My OCD is long gone but what lingers is the crazy/sad love. I still don’t always know what Nat wants or if I’m doing enough for him. I don’t know what progress is supposed to look like with him. How much of the disability am I to accept, and how much is just a product of my not doing enough?

There was an interesting post in the blogosphere today about parents who will do anything to make their autistic children “better,” or non-autistic. There was also an intelligent discussion over the suggestions in the press that parents and doctors are overdoing the diagnosing. I completely understand the desire to do anything to help your child excel, I just know that 1) you can’t have a balanced family life or life of your own if you are spending all of your energy trying to eradicate your child’s developmental disorder; and 2) I am not convinced it is possible to wipe out autism; and 3) I do not like the idea of working so hard to force my square peg son into society’s round holes.

However, where is the balance? I sometimes despair over the possibility that I have not done enough, because I tend to be scattered, poorly-organized, and inconsistent, all which can be the hobgoblin for growing autistic minds. Other times I am sad because I think, “Natty, you really were this autistic? How can that be? Where did we go wrong?” Oh, God, I am so sorry to say that, particularly knowing that autistic people read this blog. This is not about them. This is about a mother’s grief over the way something turned out for her child. And a wave of sadness washes over me; I can’t help it. I remember the bright golden firstborn son whom everyone in my family couldn’t get enough of. Everyone was jealous of me with my beautiful baby.

I sit there and let it linger and run its course, like a virus.

And then I look at him, and of course he’s pacing and silly talking and snorting (the house is really dry and dusty). His smile is wide and white. His hair is wavy, thick, and blond like ripe wheat, or honey on Grape Nuts. I want to hug him to me, just like I do with Ben or Max, but I can’t just grab them as if they were babies. And I get that old, familiar sad tug in my heart that I still don’t understand.

But what I do realize is: he is still my bright golden firstborn son whom most people love when they meet (bus drivers, teachers, family, friends). I want him to have a great life, not just one that is managed okay. I want him to have it all. I want his brothers to have it all, and they have a real shot at that. I mean friends, spouses, children, the whole nine yards.

But Nat will have a smaller life. And that is still sometimes hard for me to bear.

There is nothing wrong with him. He’s just a real odd duck, not at all whom I thought he was. The best I can do now is quit crying, get off my ass and do some programs with him, or read the Surfing Book with him. Get back in touch with what is good and forget the road not taken (the road not even there).