Women in 24 cities across the country are participating in the reading series Listen to Your Mother in celebration of Mother's Day (May 12) this year. The series features local writers reading their personal essays about motherhood in front of live audiences. The following is an essay from Rebecca Einstein Schorr, who will be reading at the event in Wilmington, Del. on Mother's Day.
The door opened. No knock. No warning.
I looked at him. Looked down at my dripping-wet naked body. And then looked back at him.
“I’m in the shower,” I said.
He looked at me as if registering, for the first time, where he had located me.
“Oh,” he said. Without a trace of embarrassment or understanding. “But I’m bored.”
“I understand that. But I’m naked, in the midst of my shower, and totally unprepared to be your activity director at the moment. Why don’t you take your DS, go sit on my bed, and hang out there until I’m NOT completely naked or in the midst of my shower?”
Being unable to shower or even go to the bathroom with any semblance of privacy is nothing new for moms. In fact, it often comes up as a topic for discussion and Facebook fodder. But we all know that there is a light at the end of the tunnel. A time in the not-too-distant future when our children will stop hunting us down at the precise moment we have slipped away for some momentary personal care.
Except my son is not a toddler or even a young child. He is nearly 13. And he has autism.
Our son, Benjamin, was a difficult baby. He was a difficult toddler who grew into a difficult child. Though something nagged at me all the while, Ben's pediatrician met my concerns with “boys develop more slowly,” “kids develop at different paces,” and, my personal favorite, "you're just a nervous first-time mother.”
Because all of these statements, when pulled out of their context, were true and because they were coming from the medical professional in whom we put our trust, I allowed my intuitive fears to be brushed aside.
I thank God that Ben's kindergarten teacher had the strength to broach the subject with me. “You know my nephew has something called Asperger's and I see some things in Ben that remind me a lot of my nephew.” It was as if the vice surrounding my heart had been unexpectedly, and rapidly, loosened. Breath that I didn't know I had been holding for nearly six years rushed out of my lungs quickly, leaving me light-headed.
I have never been one to hide Ben’s diagnosis. I have always spoken openly about the difficulties that Asperger's can create for Ben and others like him as they try to navigate a world that is rife with road bumps at every turn. But what I concealed was the pain I felt -- the sometimes-oppressive nature that an autism diagnosis can foist upon all the members of a family. The isolation. The depression.
I hid behind my work. I hid behind the tasks I had been called to do when I was ordained as a rabbi. I shielded my son from much of the public aspect that comes with being the child of a congregational rabbi. I shielded my congregation from seeing the sometimes-ugly aspects of a complicated and misunderstood disorder. I shielded myself from the risks of being seen by the outside world | during some of my most un-holy moments.
I did a wonderful job of obscuring this significant part of my life. So much so that when I announced to my congregation that I was stepping off the pulpit in order to be a full-time parent to Ben and his two siblings, many thought that there must have been some other reason. “But Ben seems so normal.” “I've had such great conversations with Ben,” “Ben is always so polite when I've seen him; it almost seems like you're making this up.”
Yes, Ben can seem “normal.” And he's a phenomenal conversationalist with those over 20. And he is über-polite after many years of social instructions. Unlike many manifestations of autism, people with Asperger's syndrome give the appearance of competency.
But it is a façade. A mask, if you will, -- and one that uses a tremendous amount of emotional, mental, and spiritual energy and focus. When Ben walks through the door at the end of the school day, the mask comes off. Any illusions of normalcy remain beyond the doorstep of the house.
I know that people mean well when they compliment me on Ben’s manners or remark how normal he seems.
And, in fact, Ben does have many moments of normalcy throughout the day. But they are inconsistent. And they are moments. They don’t last.
Most people have absolutely no idea what it is like to live with Asperger’s. It is the last thing I think of before I go to sleep and is the first thing I think of when I wake. We walk on eggshells, never knowing what is going to make him come unhinged. His clothes might be the culprit. Or what I’ve served for a meal. Or a name that someone called him at recess. And my heart skips a beat (and not in the lovey-dovey, good way) whenever I see that the school’s number on my caller ID.
So please, don’t tell me how normal you think my kid is. Because, really, you have no idea.
And for that, you should be grateful.