Last night in our house was one of those, “Boy am I glad we have thick walls and don’t live in an apartment building” times. Why? Because I would hate to have the neighbors hear us screaming at Noah, our son who has autism, to hear him yelling at us, and hear us shouting at each other.
It all stemmed from Noah’s desperately not wanting to go on a daytime outing on Sunday with his JCC group. He dug in about not wanting to go, carrying on about wanting to go to school instead. First I tried reasoning with him, but not too long in, I lost it. “THERE IS NO SCHOOL ON SUNDAY!!! SCHOOL IS ON MONDAY!!!” And it just went downhill from there, with my husband shouting at me that he wants Noah out of the house. I didn’t really know if he meant just in that moment, or permanently, but I assumed the latter. Which led to my shouting back, “THERE’S NO PLACE FOR HIM TO GO!! THERE’S NOTHING FOR HIM!! WE’RE STUCK!!!”
Eventually, and for no particular reason, Noah calmed down. He went to bed and the only real fight we had in the morning was about whether he would wear a long sleeved shirt, since it was cold outside. He actually chose a warmer shirt on his own, and off he went. But the anguish, the exhaustion, and the psychic pain of the previous night made me realize something in the clearest possible terms: we are completely alone. It’s us with Noah. It’s us against Noah. It just is. His siblings are great. Some of my husband’s and my siblings are great too. But none of that really matters in the larger scheme of things. They can provide occasional relief, but they can’t unstrap from us the burden of this man-child, who can explode into a kind of pathetic rage that is somehow both perversely funny and utterly terrifying.
So we live with exhaustion, fear, guilt and hopefulness. But the ugly, hideous truth is something I imagine only other parents in our shoes can fathom: I imagine sometimes, in my darkest, least hopeful moments, that I cannot leave Noah here after me. Who will understand him the way I do? Who will tolerate his rages, even badly, as I sometimes do? Who will know that his heart is pure and gentle, but that he’s lost in this world? Who will step up to be his everyday guide, and treasure and above all protect him, even from himself? So I think, maybe it’s better if we keep him with us, always.
That thought is one I keep buried, as deep as I can. It rears its ugly head only in my darkest moments, and maybe it’s really just a muted, desperate cry from parents like me for better alternatives, for futures that are more secure for our most vulnerable children.
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.