When Disability Isn’t Everything Or The Only Thing


As another school year approaches, I find myself pausing to take stock of how different this one will be. My autistic son exited high school in June.  He now spends his days in two different programs, one a Program Without Walls, in which a small group of disabled adults is literally shuttled to different sites for activities, meals, and leisure activities.  The balance of Noah’s work-week is spent at a non-profit he worked at for almost five years while he was in school.  The biggest change for us:  no transportation for four of the five days, so my husband and I have become de facto chauffeurs.

For my other kids, even bigger change is on the horizon. My eldest is about to start a dual-degree program in law and bioethics in a neighboring city. My daughter is about to enroll in a new high school for her senior year. I am excited for the possibilities for her in a school with maximum diversity and minimal entitlement (the opposite of her old school).

All these changes could be stress inducing, but I choose to find them exciting instead.  A new year is approaching on the Jewish calendar, and it feels absolutely right that my children are all embarking on new phases in their young lives.  Stasis can feel easy, change hard.  But when what you are leaving has its deep imperfections, then it’s the change that can seem easy, and the stasis hard.

It’s also nothing short of liberating to be thinking about something other than Noah’s needs for a change. My daughter has instead jumped to the head of the attention line. And her eldest brother is first runner up. Noah is in last place this time. Not because he doesn’t matter, but because we have laid all the groundwork we can lay for him. We will tinker, here and there, perhaps finding new work programs, and looking for leisure and other activities to fill in with. But we won’t radically change his way forward, at least not in the near term. And after eighteen nonstop years of Noah (from the time of his diagnosis at age three), I am grateful for the break.  I can see my other children in full focus for the first time in a long time.  And I like what I see…

Nina Mogilnik’s professional career has encompassed work in the philanthropic, nonprofit and government sectors. Nina serves as the Resource Director for the Good People Fund. She serves on the board of Birch Family Services. 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.