Alone Together: A Mom’s Difficult Realization
The New NormalBlogging Disability

Alone Together: A Mom’s Difficult Realization

A mother shares her experience of taking care of herself as she's caring for her son.

The author's family. Courtesy of Nina Moglinik
The author's family. Courtesy of Nina Moglinik

I talk to myself a lot. I do it when I walk the dogs. I do it when I wake up at some random hour in the middle of the night and can’t get back to sleep. And I do it when I’m with Noah and we’re on a break from our routinized, silly-talk-driven version of a conversation.

I realized that recently, when I was out to lunch with Noah, my young adult son who has autism. I kind of left the table at times (not physically), and retreated into my own thoughts, telling myself how strange, sad, and exhausting it is to repeat the same kinds of conversations, using the same words and phrases, not just for days or weeks on end, but literally for years.

I was thinking, among other things, how lonely it feels to be with someone who is not really with you, other than physically. I guess I’ve experienced that for so long that I’m almost used to it. Almost.

I remember that as my father’s dementia worsened, there was a quality of being with him, but not really. Or rather, of his being with us, but not really. It was devastating in ways that are impossible to describe, unless you’ve experienced it. And yet I live that kind of “dementia disconnect” every single day with Noah. We speak, sure. Or rather he asks or says strange things and I reply. But the radical disconnect between an autistic child and everyone else is, in my experience, the most profound feature of autism itself.

There is no major “aha” revelation that attaches to any of this. I guess I was just struck by the whole bizarre notion of aloneness together, and how incredibly abnormal and difficult that is. There are days I can roll with it. And then there are days when I just race for the exits—in my head—and retreat into my own world, where I can have a conversation with myself using words and phrases not pulled from videos, from TV shows, from storybooks and from other rote sources, or just from the recesses of Noah’s impenetrable mind, as with this recent, random non sequitur: “Who’s Aunt Jemima?” I answered, because the price of not answering is to be bombarded repeatedly with the question. But even having answered, I will surely be asked that question again. Because every silly, unrelated thing Noah talks about stays in the vault of his mind forever. It is never forgotten. It becomes part of his personal archive, one he can turn to over and over and over again in his version, I guess, of trying to relate to us and to other people.

I try to understand and appreciate how difficult it is for Noah to be in a world he struggles so profoundly to understand and be a part of. I know that his unrelated speech is his way of trying to connect. For me though, it just feels like an endless assault on my psyche. And not knowing how to parry the assault, I just retreat, hoping the assault will end. Or that if I’m loud enough in my own head, I won’t hear it.

Nina Mogilnik’s professional career has encompassed work in the philanthropic, nonprofit and government sectors. Nina serves on the board of Birch Family Services, an organization dedicated to educating and supporting into adulthood individuals with a range of developmental disabilities. Nina is also an avocational writer, and has had a number of essays about her experiences dealing with her father’s Alzheimer’s and her son’s autism published in Haddasah Magazine and in The Jewish Week.  She was recently invited to blog for The Times of Israel and has been contributing her take on life and current events.  Nina’s proudest accomplishment — and hardest job by far — has been as a mother. Nina has degrees in philosophy from Union College (B.A.) and from the University of Chicago (M.Phil). She lives with her husband and kids (human and canine) in New York City.

read more: