This is part of a series of essays in honor of Jewish Disability Awareness, Acceptance and Inclusion Month.
When I think about what it felt like when my autistic son aged out of our local school system, that scene in Thelma and Louise–when they raced their convertible off, well, a cliff–is what comes to mind. Now I wasn’t trying to outrun the law in dealing with my son’s exit from our school system, but I’m not sure I felt any less desperate than those two women did.
I’d done everything I could think of to prepare for the day when the school bus stopped coming. The only problem was that none of that preparation amounted, in the end, to very much. I’d attended more meetings than I could count, to discuss everything from Noah’s academic skills, to his life challenges, to why the school district wasn’t working on travel training. I actually found the only worthwhile work program of his entire school career, and handed it to the district as a viable option. I tried to get on board with self-direction, but had the misfortune of working for a year with a broker who was so inept that at the end of the process, she didn’t even collect her fee. I enrolled Noah in a day hab without walls program, which amounted to someone showing up at my house in a minivan once a week to take Noah and a bunch of other guys to places like the local library and back to the agency’s office where, I’m quite sure, my son spent most of his time staring off into space.
So then I did the only thing that really made sense to me: I went for the Hail Mary play. I prevailed upon my husband to move out of our isolating suburb, where I knew that Noah’s future would be dull if not disastrous. I spent a year looking for an apartment. We sold our house. And we moved to Manhattan. From the only home my kids had ever known. And I was thrilled. Starting over never looked so good. But I had to start everything over. Not just finding a new shoemaker and dry cleaner, but creating a whole new life for Noah. And that’s what I’ve done. It’s taken two years, but Noah now has some activities to go to, a wonderful work program in which he thrives, and a comm hab worker (just since December 2019) who’s taken some of the load off of me.
Even with all that though, I know that all the pieces are not in place. So much that is unknown looms before us, most especially where and how Noah will live as an older adult. That led to plans for us to have him do a trial stay at a special needs kibbutz in Israel. Because going off that cliff means you better be all in…
Nina Mogilnik’s professional career has encompassed work in the philanthropic, nonprofit and government sectors. 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, feline and canine) in New York City. Read more from Nina Mogilnik here.
More from The New Normal here.