Autism: In Spite of Everything

            In Spite of Everything by Hannah Brown

           

The psychologist on the panel, a woman, gave me a pained smile. I knew that smile well. It was intended to convey the message: I know your son is autistic and I feel your pain – I hope this cheers you up.

            Those smiles never do cheer me up.

            And, on this particular day, I certainly could have used some cheering up. I had just gotten a call from the newspaper I write for, informing me that my price per piece would go down – again. I was a single mother and had been working as a journalist part-time for over ten years, so I could take care of my older son, Danny, who is autistic.

            I had gone to speak to this panel to see if these education bureaucrats, of whom this psychologist was one, were going to approve Danny’s staying another year in his current school. It didn’t matter that I wanted him to go there and the principal of the school wanted him there. Or that he had been at this innovative school for over two years and was making tremendous progress there. The education paper-pushers still had to give their rubber stamp.

            As I gushed about the school –  which has a mix of mainstream and special-needs kids and, miracle of miracles, a large and extremely devoted staff – I thought of something else positive to say. Danny would be turning 13 in a few weeks, and the school staff was preparing him for his Bar Mitzvah. He was learning the six lines of the Torah (the Old Testament) that are read in the Monday morning prayer service, as well as the blessings for reading from the Bible. I was planning a party after the service for all his teachers and schoolmates, as well as friends and family.

            Now, this may not sound like a big deal to most people. But when Danny was 7, he was wild and violent. He was in a strictly special-needs school where the teachers flat-out told me he would need to be institutionalized as an adolescent. They didn’t believe he could benefit from even one hour a week of contact with mainstream pupils. And now, here he was, in class that mixed mainstream and special-needs kids, all day, every day. Making friends. And excited about his upcoming Bar Mitzvah.

            After I said my piece about the Bar Mitzvah, one of the bureaucrats made a note on a pad and the psychologist smiled her tight smile again. “A Bar Mitzvah is always an emotional experience,” she said. “In spite of everything.”

            In spite of everything. Now, you realize, and I knew even then, that the woman was just trying to be nice. Reassuring. But when I heard those words, it was all I could do not to snap at her, and say  a version of the speech most parents of autistic children long to utter at one time or another: “In spite of what? That he’s autistic? That it’s been a longer, harder road for him to get to this point than for most kids? Don’t you understand that I love him as fully and completely as any other mother loves her child? There is no ‘in spite of’ in my love for him!”

            But did I say that? Well, in the first years after my son was diagnosed with autism, when my marriage was breaking up, as I struggled to find treatment that would help Danny progress while I tried to pay attention to his younger brother, I would have lashed out. I would have told the woman off. I would have snapped. Cursed. Made a scene.

            That was then. Now, I just said, “Why, thank you so much.”

            The tight smile again. “You’re welcome,” she said.

 

            Of course, the bureaucrats couldn’t say for sure whether they would approve my son continuing in his school – they never give you a decision on the spot, just like the tester from the Dept. of Motor Vehicles never tells you right away whether you’ve passed. But I have become an expert in reading bureaucrat body-language over the years and the fake smiles and lack of any objections were a good sign. But, for some reason, I couldn’t get the woman’s words out of my head: In spite of everything.  Was I kidding myself? Was this whole Bar Mitzvah just some meaningless charade? Was I trying to prove to myself and everyone else that he had a come a long way – but had he really? If he had dyslexia, I could show off improved reading scores. But autism is a complex disorder. How could I explain to the psychologist how his violent behavior had disappeared gradually, once I found this school and an afterschool treatment center that has also been enormously helpful? That he was talking all the time now, talking and listening? That he asked to call his grandmother on the phone, so he could tell her he loved her? Could the bureaucrats understand any of this?

            No, of course they couldn’t. They only understood test scores. I knew that this wasn’t a forum where anyone would really share in our struggles and triumphs. But her implication that there was something not quite good enough about my son achieving this milestone still rankled. I’d love to say that I was strong enough that the dirty looks I still got over his sometimes strange behavior in public – he jumps up and down when he’s excited, repeats himself in a loud voice, and often greets total strangers warmly, asking their names and where they live – didn’t bother me. But it still does. I know that many acquaintances and even, sadly, some family members, have more or less written him off. “Just make him happy,” people tell me. Well, I want him to be happy, sure. But I also want him to learn and progress as far as he can – exactly what every other parent in the world wants for their child.

 

            Fast Forward, two weeks ahead: The morning of the Bar Mitzvah. It’s a beautiful day. Danny is dressed in a new white shirt, new pants and shoes. He’s smiling. Then we pull up to the synagogue. He starts to cry. “I don’t want a Bar Mitzvah,” he sobs. “I want to stay in the car.”

            I manage to keep my cool.

            “Well, we knew he might not be able to do it,” says one of his uncles.

            “It was only a 50-50 chance, right?” says another relative.

            But the teacher who was preparing him for the Bar Mitzvah and another teacher, who has worked with him in his afterschool program and has an extraordinary rapport with him, arrive and take him to a quiet spot.

            Her calm voice soothes me, as well as him. “We’re going to sit here and talk until you feel calm,” she says. “And then you will go in and do what you’ve been practicing and you will do it beautifully.”

            And that is exactly what he did.

            I didn’t cry as his voice, soft but clear, read the words of the Bible aloud. But outside the synagogue, as his schoolmates and teachers celebrated on the lawn, singing and dancing with him, I looked as his joyful smile and teared up. I started crying when a boy from Danny’s class said, with the simple sincerity of a child, “When Danny came to our class, I thought he was a ‘special’ kid. But now that I know him, I know he’s an incredible kid.” And I ran out of tissues when Danny hugged and kissed me.

            A moment later, I heard the buzzing of my cell phone, which I had left on to help some of the invited guests who might have trouble finding the synagogue. I fished in my purse and picked it up. It was the psychologist, telling me that Danny would be allowed to continue in this school. I thanked her.

            “What’s that noise in the background?” she asked.

            I told her.

            “Mazal Tov,” she said.

            Was it just that I was on a high that day, or did I detect a note of real happiness in this bureaucrat’s voice?

            I hoped I did. In spite of everything. No, I hoped I did, because of everything.