Susan Senator

I remember feeling like no one understood the special pain I was in because I had an autistic child. In one of my interviews, I was asked a really good question: if I see the world divided into two kinds of people: those with autistic kids and those without. I did feel that way once. I used to believe that my pain and disappointment over Nat was something no one could understand. Then again, I believed that I could make everyone understand if I wrote about it. I would make them understand and they would not feel sorry for me — or Nat — but they would simply “get it.”

It took me a long, long time to realize that pain is pain. There’s no comparing yours with mine. It just is, and we need loved ones to get us through awful times. Each person is entitled to their own particular hell.

The story about Christopher DeGroot being burned to death by his parents epitomizes hell. This news item made me want to lie down and give up. I read about it on a fellow blogger’s site, crying, and then, a moment later, I jumped off the couch and hugged each of my boys. I whispered to Natty, “I love you, Darling.”

I have tried to forget about Christopher — even though I never knew him — but he haunts me. He was just a little older than Nat, and apparently quite “severe,” whatever that means. Aggressive, disruptive, difficult to read, difficult to manage; I’m sure these are the terms applied to him.

What else was Christopher, to borrow from Ballastexistenz? Who was he? What made him laugh? Did he love the ocean? Or love/hate it, like I do? Did he stim? Did he like Disney? Could he talk? Write? Sing? Did he have a thing for pillows, like Nat does? Or had he begun to actually notice people and want to have friends, like what’s happening to Nat? Was he sweet? Funny? Mischievous? Athletic? Dorky? Couch potato? We’ll never know. He’ll just be “that autistic kid who died a horrible death.”

I, too, have been through terrible times. When we didn’t know how to get Nat to sleep, when he was seven. When Nat attacked me, while I was holding Benji in my arms. When Ned had to wrestle Nat to the ground in public. When Nat’s school called me to come get him and expelled him.

But he’s my son, and though I may hate him sometimes — or perhaps more accurately, what he does sometimes — I also love him so much it hurts. My firstborn, who changed me irrevocably from little innocent me to a Mother. With Nat I first experienced joy that makes you cry, ecstasy and love that is physical but not sexual. I also experienced how to get past perhaps the most difficult thing in the world: death of certain dreams. And, perhaps best of all: I learned all about completely different ways of experiencing the world.

Christopher’s parents will never know who Christopher could have been and the world will never get to respond to him and interact with him and learn from him. He left this world in unimaginable pain and probably terror and confusion — I keep wondering what his last thoughts were. I can’t help it.

How can such horror exist?

I cannot get past that image, of a boy like Nat some might say was “trapped” by autism. But truthfully, the only thing he was trapped by were the locks on his door and his family’s inability to cope with their life’s pain.

I did not know Christopher, but I will carry him around in my heart. We all should. There’s always room for more.