There’s so much that has been written—and can be written—about the extraordinary, heartbreaking, gut-wrenching challenges of raising a child with autism. But I’m convinced that at least in our family, we get through the challenges—to the extent that we do—by leaning on our own version of lunacy, of laughter.
Sometimes living with my young-adult son Noah, who has autism, is just ridiculous. The conversations we have that are straight out of some video he hasn’t watched in ten years; the endless requests to read Once Upon a Potty; the questions to which he already knows the answers, but asks anyway. On and on and on it goes. Sometimes, I just wish my hearing would give out, so I don’t have to hear and answer the questions I’ve heard and answered ten thousand times before—or just ten times already in any given day.
We have our little breakthroughs here and there, though. One is that Noah can use his phone to text. That’s been a real blessing. It gives me a chance to check in with him and try to gauge how he’s doing. It’s especially important since we do leave Noah home alone at times. Never more than for a fixed amount of time but still, it’s important for me to know that he can answer when I ask after him. And sometimes, those text conversations just make me laugh out loud, or leave me feeling a little wistful about who my son is, and what he’s able and willing to share with me.
One recent text conversation went like this:
Me: All ok at home?
Me: What are you doing?
Noah: I am all alone.
Another went like this:
Me: Home from school? How was your field trip?
Noah: It was marvelous.
And Noah’s version of Who’s On First, sort of…
Me: What are you up to, Noah?
Noah: I am up to my house.
Me: You’re at our house? Where is Aunt Ossie?
Noah: It’s here.
Me: Whose house are you in right now?
Noah: I’m at Aunt Ossie’s house.
These are the more lighthearted moments in our lives. When Noah tells me that his field trip was marvelous, I can hear perfectly the inflection in his voice. Or when he texts me back that some experience he had was lovely, I hear the gravelly, low tones he uses at times and I can’t help but smile.
Those moments are so precious. They provide a much-needed respite from the worries that dog us about Noah’s future, about how he’ll manage in the world. I’ve always believed—and still do—that humor is a sign of intelligence. So I tell myself that Noah’s ability to be silly, to make me laugh, is his way of telling me that there’s someone brighter than I can see with my neurotypical eyes hiding inside of him. I may just get peeks at him, rather than prolonged views, but those peeks are essential, and sustaining. They prod me to be hopeful when my default is less so. And they temper the difficult moments, the ones where my nearly 21-year old son, with his size and strength, is having a tantrum that we are afraid to confront physically, but can’t always dial back (only) verbally. We need humor and levity like a starving man needs food and water. Nothing more, nothing less.
P.S. Life being what it is, not half an hour after I finished writing the somewhat lighthearted piece above, I got a call from my son’s teacher. She had left him in a room with about half a dozen other adults while she stepped out to call and tell me that he had the worst tantrum she’s seen in the three years he’s been with her. He bit her, he bit himself, and he tried to hit other people and escape out into the corridor. None of us knows—or is likely to know—what set him off. I prefer at this point to chalk it up to cosmic spite. Here I was, trying to revel just for a few minutes in the salutary role of humor in our otherwise challenging lives and reality came to slap me on he side of the head, as if to say, “Humor? You think there’s something funny about raising a disabled kid? I’ll show you!” And then some…
Nina Mogilnik's professional career has encompassed work in the philanthropic, nonprofit and government sectors. Nina is presently consulting to a select group of nonprofit and foundation clients. She also serves on the boards of Birch Family Services, and the Good People Fund. 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. 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 outside New York City.