When Mendel was 20 months, my husband knocked on the door of our little apartment on 51st Street and as his big sister ran to the door shrieking with excitement, Mendel looked at me happily and said clearly, “It’s.Tatty!”. I beamed. There it was, the first sentence. The first two word combination I had heard from my beautiful, developmentally tardy child. Surely, I thought, the sentences would increase, the paragraphs would come. But they didn’t. They never did. And what’s more, he seemed sick and increasingly withdrawn. He would lay his head on the bed and almost fall asleep in middle of the day. He was bored, he had no preschool to attend; he was brilliant, just a late talker; he was tired, he had an ear infection. He was so many things.
But then, finally, he had a label for all of those things: autism. A life changing, debilitating, diagnosis; not- as I was assured by many- a great way to get more services from the government. Not in this case, not in this journey.
I like to wrap things up. I teach a class and pay particular attention to the ending. The last paragraph has the magic, in anything I write. Which is why, so many years into this journey with Mendel, more than thirteen since that false hope of a first sentence, I barely write at all. I wrote my way to self awareness as a young adult and I wrote my way through the process of falling in love with my husband and marrying him, despite a chronic existential angst and a reflexive aversion to wholesome, good people (and my husband is wholesome and good to a fault.) But I could not write about my journey with Mendel. There was no climax, no simple arc of crisis-climax/awakening-resolution. There were only so many things, so many small conversations, planners and notebooks filled with names and doctors and mothers to speak to, and alternative nutritionists and cranio-sacral osteopaths and BCBA’s and speech therapists and naturopaths and somatic healers and psychics (my wholesome husband drew the line at that.) And somehow, incredibly, there was no climax. Mendel continued on as he was before, with very little change. We would presume that it must be happening even though it didn’t seem that way, because he was surely exceptional and we would surely be the ones with the happy ending. I would write emails to the therapy team thanking them for “giving me my little boy back”, certain that if I willed it, and sat through more team meetings and inexplicable discrete trials, it would be. But it was not. I learned more, had epiphanies and game plans and wrote lists and played and followed his lead and researched more and more doctors and chemists and psychiatrists and experts of every stripe. And Mendel grew bigger, but his isolated, silent world stayed the same. He never spoke a full unprompted sentence; he wouldn’t call me by name or produce any verbal communication at all.
I was sure it was me. This is the crux of why I could not write about it. What would there be to write: our son had autism, I tried many things but did not do as much as I should/could have done, and I did many, many other things (run a preschool, birth and care for other children, run a Chabad House, run a home, mindlessly scroll Facebook) and this engrossment of mine in anything other than Mendel is surely what caused his lack of any significant progress. Who would ever want to read such a story?
And yet. I think today that perhaps I am worthy, perhaps my story is worth being told, if only because I still try. Not always, and not persistently. But the effort remains alive and I fight to make it, pushing past distraction and complacency and an inability to imagine the light after so many years of dark. Perhaps this is Mendel’s story. What we tried, what we learned, how we love; how we still try, despite many failures, to make it better.
