Susan Senator

As an autism mom trying to build Nat’s future, I ought to know by now that it is always darkest before the dawn, that there’s a light at the end of the tunnel. How many times do I have to learn that? The problem is, because this is real life, real people, I am always suffused with the fear that this time the bad stuff is going to last. And then, after a terrible phase of hopelessness and anger, of digging in the dark caves of despair, I stumble upon a tiny idea that is like a crack in the rock. I then test it out with a deluge of emails to my mentors. I latch onto their kind and wise responses and I find the way out. But still, I feel like an idiot, like everyone in the autism community is laughing at me and my credibility is draining away, all because of my eternal optimism.

But maybe I can take heart from the story of King Sisyphus. My viewpoint of Sisyphus is actually informed by Albert Camus’ interpretation, which I want to describe from an excerpt of Camus’ The Myth of Sisyphus that I studied in college, and rediscovered on this NYU website.

The traditional story of Sisyphus is told thus: That Sisyphus was a wily ruler who did not obey the gods and tricked the Underworld into letting him leave Hades when he died. He had apparently made promises to Persephone and was allowed to go back to the world of the living provided he kept his promise. Camus writes, “But when he had seen again the face of this world, enjoyed water and sun, warm stones and the sea, he no longer wanted to go back to the infernal darkness.” So messenger Mercury came along and threw him back into Hades, where he was condemned to push a huge rock up a cliff, only to have it roll back down.

Upon first reading, this fate is the epitome of meaningless. But Camus sees it differently. He views Sisyphus as effectively turning despair on its head by doing the work. He writes, “Sisyphus is [actually] the absurd hero…[For] where would his torture be, indeed, if at every step the hope of succeeding upheld him?” In other words, Camus discovers hope in the act of pushing the rock. It is that hope, and the purity of the work itself that Sisyphus is engaged in, that actually renders him triumphant. For while toiling he is merely a thing of action, of moving-towards. An example of silly human, all-too-human hope. And in feeling the hope of action, in mindlessly, dutifully doing his work of pushing the rock, he has actually beaten the gods. He has found his dignity, which the gods had hoped to remove.

In my darkest moments of dealing with the reality of Nat’s distant future, I try to take hope not only from my mentors, but even from the detractors. The monolith of The Bureaucratic State and Federal Agencies (the gods in Nat’s world) with their oft-time absurd rules, is what stirs me — and hopefully you, the planless autism parent or Self-Advocate — towards the greater good of struggling for your guy/yourself. The ups and downs of the planning, the piecing-together of the various parts of your vision (finding the funding, finding the fellow residents, finding the staff, finding the kindred spirit families, getting them moving, finding the house, the “‘partment,” the farmstead, the intentional community) even the subsequent falling-apart, all of these are your noble work. And like Camus’ version of Sisyphus, it is in that work itself that you, the ever-struggling autism planner, (whether parent, guardian, sibling, or Self-Advocate) are in fact triumphant.

Why triumphant? Because your efforts — though those interlocking task-parts may be conscious — are driven by your unconscious feeling of optimism and love. So it doesn’t actually matter, on some level, what your results are. I mean, of course it matters because no one wants their plan to fail, to see their loved one at the bottom of the cliff next to that stupid boulder. But remember, the human condition guarantees nothing. We are not entitled to that rose garden. The paths of glory lead but to the grave. But I think Camus is so right, that the struggling-towards is noble, if for no other reason, that our labor creates a body of work for you and others to learn from. Your “failed project” gives shape and structure to the chaotic swirling atomic darkness that other families face by showing them What Not to Do. It is this lesson in “Not” that then gives birth to the tiny new epiphany, the creation of What Might Be.

My bottom of the cliff, my foundering in the darkness of that hopeless cave (where I found myself just days ago) will always lead me to that possible way out. Even if the ladder, the climb up, only leads me to fall again at some point, there is that moment of the idea, the new plan informed by my new knowledge of What Not to Do, that also counts. Because in real life — after all, we are not actually in Hades — it may be a very long time between reaching the summit, and falling again. Your guy might find a home for years, decades! There is always the (foolish and possibly brilliant) path upwards, over and over again.

(Nat, 23, with Dana, a good friend from his first of two adult group homes)

When Nat was 10, he was offered a choice in classrooms, where Nat’s alleged functioning level and behavior were the deciding factors. If we chose Door A, Nat would be consigned to a “pragmatics” classroom. Separate, low expectations, ADLs, making change. If we chose Door B, the Director told us, “imagine the opportunities that would open to him.” Academics. Inclusion. Friends. “But,” he said gravely, “he must keep those behaviors under control.”

Oh how that classroom sparkled and seduced me, like the Sirens to Odysseus. So I chose it with great hope and trepidation. But the whole thing was more like Scylla and Charybdis, a rock for Nat to crash upon, a terrible whirlpool that sucked Nat under. And they blamed Nat.

Listen up, folks. It is up to the adults in the room to open those doors. It is up to the grown-ups to buoy the boy. The professionals, the educators must bear the responsibility of teaching, of shepherding him into adulthood.

I hold this advanced society responsible for failing Nat. You, Modern Era, proud Accepter of The Tired and Poor, where is Nat’s Statue of Liberty? You are letting guys like him drown. You offer the classrooms, you offer the funds, and we are grateful, oh so grateful. It’s a lot of money. Oh, how we know that. We are never allowed to forget how much of a strain our kids are on the school system. How much of a burden.  But, we tell each other, It’s better than it used to be because in the Olden Days there were Institutions.

And Nat is one of the lucky ones because he has adulthood residential funding. This means he’ll always have some sort of roof over his head with some sort of caregiver. So that I can die one day and not have to leave him on the street or with some saintly relative. The majority of people with autism and developmental delays are on waiting lists, the bread lines of today. They’re home with aging parents. With siblings who deserve their own life. Guys like Nat spent 18+ years in school and at least learned something, at least climbed towards their individualized goals. And then literally on their 22nd birthday, both Doors A and B are closed to them.

The choices for guys like Nat — with severe autism, intellectual disability, communication disorder, who are lucky enough to have residential funding — are limited to group homes of 5, which can also be Institutions with indifferent staff — or worse. Or you try some sort of Shared Living. You move in with a family or a roommate caregiver and hope for the best. You, most vulnerable of all people, are often not allowed to have cameras for protection. If you get abused, you are not believed — you are an “unreliable reporter.” Your abuser can be rehired at the service provider down the street.

The truly lucky (read: wealthy) ones find their ways into well-run communities, farmsteads, apartments. Private sector. And then their parents live forever.

So here we are. Nat is no longer in his (second) Shared Living arrangement. Another setting that beckoned beautifully but could not support him as he is. So what do we look towards now? Another group home? The low-risk but low-growth option. Door A, of course, in its dead-eyed glory.

I am out of ideas. Where will Nat thrive and be happy? Where will he find growth and opportunity like Door B, but have the safety of Door A? Nat has tried ’em all. Isn’t he lucky?

Actually, yes, he is. He lives on, brave and ready for the next phase. He laughs to himself, he talks joyfully to himself. He goes readily to new things, thank God. Because you know what? In the end it is not what’s behind the door that is full of promise. It is Nat.

“Live in ‘parment.'”

Back when Nat was transitioning out of school, at the beginning of his adulthood, we were able to learn from him that he wanted to live in an apartment. For a year leading up to his turning 22, I searched for apartments that he could share with a roommate or two, and a live-in caregiver. I took him along. I don’t know which of us was more excited. I figured we’d fund the caregiver through Adult Foster Care (a live-in caregiver who’d get a small tax-free stipend), and the rent through Social Security (SSI). Nat loved the city life he’d always lived, and so we wanted to duplicate this as closely as possible. We worked with a few families, but found we wanted different things: their sons had never lived away from home so they were looking for less independence in their settings. Plus they were country mice, and did not want the city mouse life that Nat did.  Plus I was a little too passionate (pushy) for them.

Since adulthood, from 22 years of age, Nat has moved a lot. By now he’s been in two publicly-funded group homes as well as three different publicly-funded shared living arrangements. I would not say that any of these situations were failures; each ended for good reasons. The first was a shared living-group home hybrid with friends and one new guy. It morphed into a group home when one of the families dropped out. Then this group home became Nat’s residence from 2011-2013. But that one started having trouble with another of the families, who dropped out. This was just before Nat left, in 2015, for a shared living arrangement for two years, in an apartment in the city, which had always been Nat’s preferred location. That shared living experience ended when we discovered Nat’s injuries. We still do not know how the injuries occurred so I do not necessarily hold the shared living responsible. Then from 2016-2018 Nat was in a new group home, which was very well-run. However, state-approved group homes are so risk-averse that they frequently opt for doing less than more. When the opportunity came for Nat to live with two musician friends/teachers, we jumped at it. We took months to prepare. But the providers only knew Nat a certain way and did not imagine he could be much more intense in his needs. They knew it but they didn’t know it-know it.

Nat is living at home again. Our wonderful experiment in shared living did not work out. There were too many issues for the young couple — it was far more of a struggle than the three roommates had bargained for. Nat became seized by a terrible anxiety that lasted for months, which I believe was partly a normal phase for him, and partly due to using an ineffective cocktail of medication.

Things were very raw for a few months while the providers and we worked on supporting Nat (and them) more effectively. But too many factors coincided that made this simply impossible, so we took Nat home. Just two weeks ago, though, we landed on Ativan, a very low dose at bedtime, and Nat has calmed down remarkably. But it was too late to make a difference to his providers, so we moved him home. So far, so good. He is very happy living with us for now, but yesterday I took the opportunity to ask him what he might like “soon.” Nat does not grasp the concept of the future too well in some ways; in other ways it is all he thinks about. His calendar is very important to him; he recites it with us daily and repetitively.

We enjoy this because it is a way to converse with him when he is very focused and motivated. We get a lot of talking out of him when he wants to talk calendar.

He is still very invested in where he lives, of course. So yesterday in the car I asked him about where he’d like to live, giving him choices rather than leaving it open-ended. Open-ended questions elude him because they have no structure. So I paired up a few options and finally got that he wants “parment with friends near the T.” Just love that guy and his valiant persistence to stand up and be counted.

So not much has changed for Nat, even though in some ways, everything has changed, again and again. But he’s rolling with it, and if he is, then I am.

Photo by Laura Senator