I have feared the day the school bus stops coming for my son Noah for so long that I’m not sure I recall a time when that fear didn’t dog me. In fact, it feels as if I’ve held onto that fear as long as I’ve held onto him. The day is now officially a year away, since Noah started his last year of high school September 1, 2016.
I recall vividly, with each of my kids, the promise embedded in each first day of school. I picked out their clothes, put little backpacks with some favorite character emblazoned on it over their shoulders, and walked with them to pre-school. Then I brought them to the bus stop for their first day of kindergarten. Everything felt so full of hope. One son graduated from college a year ago. My daughter just started her junior year of high school. Noah will finish his sixth year of high school this year and then go off a cliff.
All of us parents know about the cliff. It’s what our kids fall off when they leave school and enter the adult disability system. It’s that scary universe in which the rules don’t make sense, the programs are so variable as to leave your head spinning, and your child’s safety becomes a newly urgent source of concern.
I have made many adjustments along the way. When Noah was entering middle school, I cut back my work/commuting schedule to be more available to help manage that transition, and took a major pay cut to boot. As Noah approached the end of high school, I rejiggered work again, stepping away from full-time commuting to tend to his needs and to other family-based challenges.
As my autistic son faces a transition he’ll no doubt not (fully) understand, I’m confronted yet again with my own transition. In this new world of self-direction, I will become a de facto employment agency for a small army of folks whom I will magically make materialize, so they can help Noah have a productive daily life post-school. And I will become a full-time manager of Noah’s schedule. I also expect to be the person who fills in all the gaps, the ones created by the folks I don’t actually manage to find to hire, the ones who quit prematurely, get sick, or otherwise disappoint me and turn my already chaotic world even more upside down.
I don’t even have expectations for Noah’s last year of school, because I know that none of the work sites the school district has placed him in will hire Noah after high school. It’s this ridiculous game we all play: the school district pretends it’s preparing Noah for life after high school, and I (sometimes) pretend to believe them. But I know—and have known all along–that Noah will circle right back to home, to the reclining chair he spends hours in after school, looking at pictures on Google images, or silly videos on YouTube. I’m desperate to make sure that that chair doesn’t become his world, and that mornings don’t bleed into afternoons and afternoons into evenings, with little to fill in the blank spaces. I’m afraid that every school bus that passes us by next year will feel like a rebuke, like a slap. And the promise of those early days will seem like a distant memory.
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.