When Milestones Feel Like Millstones

It’s spring. A time for new beginnings. A time for flowers to start blooming and for plants to show themselves at their lush, green best. A time for culminations too, and endings. And a time for proms, graduations, and transitions to that next age or stage of life.

I love spring. I feel like it’s when I start to come back to life, after the dark days of winter. But this year especially, spring feels like a season of judgment, of struggle, of indecision, and fear. Our son Noah is twenty-one, and will therefore be aging out of our school system come June.  His transition feels to me less like an opportunity to grow up and thrive in a new world than like jumping from an airplane without a parachute.

Up until a week ago, Noah had nothing. Nothing planned for the days and for his life after graduation. Not that I hadn’t been trying to find him something. For a year and more. I’ve been feverishly looking, calling, meeting, asking. I joined the board of a human services organization because I appreciate what they do, but also because I thought it might help Noah. My sister’s on the board of another agency, through which we have our Medicaid Service Coordinator (MSC) as well as the start-up broker who’s been helping us through the miserable, terrible, self-direction process, at the end of which you get some money, but no program for your child. For that you have to find staff to hire and then find programs that suit your child. We thought we found someone at least to spend time with Noah on weekends, to give him a social outlet that was not through us, his only real portal to the world. But the process of fingerprinting and other approvals took so long that our first anticipated hire gave up and committed to other work. So it’s back to us. Honestly, do I really want to start interviewing random strangers to drive my son all over the place to some random activities so I don’t have to?

We had our self-direction “launch meeting” about two weeks ago. I turned to my husband several times during the meeting and mouthed, “Just shoot me.” You couldn’t have come up with a more absurd program for already stressed parents if you put a sadist in charge of designing it. My brain shut down halfway through the meeting because I just couldn’t bear to hear one word more from the fiscal intermediary lady about which paperwork would have to be filed by whom in what manner. But hey, it’s great if you’re looking for supplementary, government-provided income for family members, neighbors, and assorted relatives. But silly us, we’re actually looking for a life after high school for our son. And nothing—and I mean nothing—about self-direction makes achieving that goal any likelier or easier.

We had our ACCESS-VR meeting at school a few weeks ago too. ACCESS-VR agreed to pay for 90 days of job training post-graduation at a program Noah already attends, but for which there’s no transportation. So I can quit my job to drive him there and back so he can work at a job he already knows how to do well, and for a whopping two or three hours a day. Or I can wait 45 minutes each day for ABLE Ride to pick him up, hoping that the routes that have been curtailed due to funding cuts will somehow accommodate Noah’s work schedule. And then I can hope they show up to bring him home. The “opportunities” where I live are scattered, often inappropriate for Noah, and entirely transportation-dependent. But hey, the school system will get to check the “we held the required number of transition meetings” box when the state does its audit, so all is right with the world.

I’m so exhausted by all of this that after years—nearly two decades, in fact—of CPSE, CSE meetings and the like, I finally just gave up. The district scheduled an “exit meeting” and I just joined by phone. I always showed up in person, paid close attention, asked questions, made sure what I heard made sense to me. This time, I didn’t ask a thing, and offered a pretty desultory “thanks” when the ten-minute meeting came to an end. The district got to check its box, but no one seemed even slightly bothered by the fact that Noah had nothing planned for post-high school. It is what it has always been: it’s on us, his parents, to provide for Noah’s future. That’s been true through all the district meetings, the curriculum and placement tweaks, etc. etc. The district gets money for educating my son whether his future is bleak and unproductive, whether he transitions into a void, or into a full-time job.

On my own, I reached out to the agency we work with locally, the one that provides our MSC. I met with a woman who handles job placements, and in the course of our conversation, she mentioned that there is an opening on Fridays in the van in our area that picks up participants for their Program Without Walls. I pounced. Could Noah try that out on Fridays, before school ends? If it works, maybe he can continue, and then maybe other days will open up. I was told he could. Only to be told a few days later that he couldn’t, because the agency couldn’t figure out how to get paid for that. I was devastated. I reached out to express my disappointment, noting that I really wished someone had checked before telling me yes, and before I’d withdrawn Noah from his Friday job site through school.

Then “sorry, we can’t became yes, we can.” I had no idea why, and I honestly didn’t care. My head was spinning off my neck, but beggars can’t be choosers, so gratitude was my only play. And I expressed it. And then, expecting nothing when I reached out to reconfirm the start date for Noah’s trial run on Fridays, I asked if by chance there were other days that had opened up. I nearly wept when I heard that he can have a spot full-time after he graduates.

Maybe this came about because my sister was once president of this agency’s board, and we’ve been donors for years—not big-time donors, mind you–but regular donors. Maybe it’s because my sister’s still on the board, and the agency’s director knows that and feels some obligation to work extra collaboratively with us. Or maybe our timing was just dumb lucky and a spot opened when we needed it. It seems that randomness is a big factor in this whole adult disabilities world. Are you the right person at the right place at the right time? I didn’t take another young person’s place for my son. But this is not how the system should work. My son should not go through years and years of schooling, in a district with a transition coordinator, only to have it come down to whether his mom and dad stumbled into the right philanthropic relationship, where folks might have been extra-incentivized to help us, or just stumbled into a program opening, like falling through a hole in the ground. Either way, Noah now seems to have a place in a program, Monday through Friday. He’ll travel by van to various work sites, have lunch with peers, and participate in some leisure activities. Is this the apex of what I want for my son? Not by a long shot. But it beats the one-month in camp, paid for by self-direction, which was the only other option on the table. And which would leave a giant, gaping hole in Noah’s schedule and in our lives the day that one-month camp experience came to an end.

So at a time of year when things are beginning to bloom and the earth is waking from its months-long winter slumber, I’m feeling a kind of bone-numbing exhaustion. I feel resentment toward a system that puts the onus fully on parents to figure out a system that is a mystery even to people who work in it. I know, because I’ve spoken and met with enough people who work in the disabilities field to know that they don’t understand self-direction, are confused by an uncertain future for themselves and their agencies, and therefore can’t give the kind of rock-solid advice and guidance I have been desperate to find. So instead I’ve stumbled into something for Noah to do when the school bus stops coming. I suppose I should pat myself on the back. I just can’t muster the energy. How I wish the transition on our immediate horizon felt more like the kind of proud milestone that parents of high school graduates routinely look forward to, rather than a millstone weighing so heavily on my heart.

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.