Susan's Blog

Wednesday, May 29, 2019

Fun is a Superpower

Magic isn’t real in the sense that someone can *poof* disappear or have three wishes or suddenly be “beautiful” as in magazine-pretty (Ned’s term). But real magic is about spinning straw into gold, by which I mean creating something fascinating and special out of the ordinary.

On my bike rides I go to tiny spots in ordinary neighborhoods where I am entering whole worlds. I imagine and crave to be at these places, and that makes me want to get on my bike. So it’s not exercise, it’s play. I look to my right, on Old Orchard Road, and I squint a little, and that lawn there becomes like a meadow, a pasture. For that split second I can’t see the houses, cars, fences, people. Just the rolling grass lit up to young green by the sun. There’s another spot called “Cape Cod,” named thus by Max, my middle son, who felt that something about it was like our rides on the Cape. I look forward to that bit of road because suddenly I’m in Cape Cod and it’s summer and free and hot.

Max told me about a word, “Kayfabe” which he learned in a philosophy class while at NYU, which he recalls is about play and pretend. Google finds it from perhaps carnival culture, some kind of reforming of the words “be fake.”

Kayfabe is the willingness to pretend. To me, this is an essential part of a happy life. So: do you play at all? What is your kind of fun? Where do you find magic? The magic that Max creates is in his everyday life, the way he gently laughs at just about everything and everyone around him. His Instagram posts are always funny even if you don’t understand them. He always says he gets a lot of fun playing online (he says that¬† it’s one of the best sites to play) slot machine games from ABC Win. He’s a cameraman and fascinated with cameras, cables, lenses, focus aids, and assisting in the creation of worlds in films and commercials. But it’s not his actual work that I’m talking about, it’s the sense of amusement he shows in his posts and the way he talks about his day. You want to join in, you want to be young again, and approach the world without worry. Not that he doesn’t worry; he’s human, after all. But when you are with him there is a sense of play, like any kind of experience you want, he can take you there. The restaurant he took me to, Butter and Scotch, we actually ordered a piece of birthday cake for dessert. Birthday cake! Pink and yellow. Brilliant. He showed me a ghost subway stop underground in New York. We went past it, and saw it, but you can never get off at it. It’s no longer used. It was a little world we were visiting for a moment.

All three of my sons are magical in different ways. Ben, my youngest, has shown me the world of elves and forests, ever since he was a little guy. He draws them even now as part of art school assignments, and infuses them with his own attitudes of toughness and vulnerability combined. His elves or faeries can be found on the doorsteps of old Victorian mansions, expelled from their community for an undisclosed reason. These paintings make you yearn for more, and join in the story. They make you want to dive into the painting a la Mary Poppins and Bert and their sidewalk chalk scenes. You wish with all your heart that you were part of this tableau. Ben has always done this, created beings and their worlds, with names that really made sense for them, and they were so consistently and poignantly drawn your heart would twist with a million different feelings. The craving when Ben interacts with you is a feeling of being at the doorstep of a world both terrible and gorgeous, you hope so badly that he will choose to be your guide there.

Autism parents have often been told that their children are special, particularly beautiful and captivating. There’s a “magical autistic” character in literature, media, that many in the community do not appreciate: the autist with special powers, the SuperSavant. This is not what I mean at all. Nat’s magic is not in some kind of powerful recall or math or obsession with presidents or train schedules. If we look carefully and quietly at our children — autistic or not — we can find that magic. What I see in Nat is this ability to catch people’s eye. For the longest time I was worried and upset about that. Were they staring, making fun? His arm movements and self-talk can seem so weird.

But lately it occurs to me that they are intrigued by his free spirit. He’s not burdened by a problem to work out, he’s not looking at you and wondering how he looks to you. You don’t know what he’s thinking about, what his thoughts are like. He’s so within himself that you realize you are seeing a genuine person stripped of artifice. So when Nat smiles, you smile. He’s not doing it for you or because of you, he’s being hit by joy and you get to witness that, unadulterated by anything else. You feel tickled by him, you want it to go on and on. The magic with Nat is when he does consent to interact with you, his responses are so genuine and sweet. You feel like, “how can a person like this exist?” Innocent because he simply does not understand neuro-typical rules and interactions, all those crossed signals over and over until everything is just black with communicating/misunderstanding. He doesn’t do that — well, when he does it’s so hard for him. But when he’s just being himself he’s just like flower petals on the wind, you want them to stay on the tree or at least remain this achingly beautiful and fresh.

Being able to enjoy some of your moments, in your own way, childlike and even silly — this is how we create magic in the real world. You’re creating a reality for that pocket of time, falling into it, believing in it. Fun is our superpower.

Monday, May 13, 2019

But Maybe Autism Parents Can Let Go?

What’s the other side of the “I can never die?” plaint of the autism parent? I’ve done a lot of writing about the need for more protections of our vulnerable guys who do not live with us. Even so, for many of us that is not a sustainable solution. And we are not the center of the issue, even though we love our children and want to protect them. No, they themselves are. And it is their right as human beings to claim their independence if that is what they wish.

So — perhaps we parents can take a lesson from — of all things — the story of Abraham and Isaac. Not the sacrifice part — sacrificing your child is never the right thing to do — but more metaphorically, in the sense that author Jon Levenson may have meant, in The Death and Resurrection of the Beloved Son — that our children are actually not really our own, our possessions. They are born to us to protect, teach, and love, but the purpose of having children is to create beautiful souls who can live lives of meaning and goodness. So when a very good friend of mine who had read Levenson’s book raised the possibility that the Isaac story in terms of the very real necessity of letting your child go, it made me think, and it gave me comfort. “We do what we can to keep them safe,” my friend said, “but ultimately what happens to them is not up to us.”¬† She’s not a Fatalist or a religious extremist. She believes in free will. But she also acknowledges that there is an entire random universe that has a say in what goes on.

For months I’ve been struggling with the question of where Nat should live. He has been home with us since early March because the shared living arrangement he’d been in fell apart. Yet from his late teens through this year, I’d been dreaming of Nat in just such a “normal” setting in the community with caregiver friends. But once we had achieved this, we could see how it was not enough support for Nat. But I was resistant to group homes because of horror stories. No, I would simply have to take care of him myself to keep him safe. We’d buy a two-family home with a caregiver living right downstairs with him. We would share the care of Nat until we no longer could. But then what? Who would become “us,” in the upstairs apartment? Would it be Max and Ben, Nat’s younger brothers? No, because they are on their own paths.

We need to be able to build lives for our loved ones where they can exist without us. But how? And then, just a few weeks ago, remarkably, another wise friend said something that put group homes in a new light for me. “Group homes can be something not to resign yourself to, but something to be excited about.” But how, I asked, given the potential for abuse? She said that we take big risks all the time, we just don’t think about it. Bad things can happen to anyone. Even Nat. (And so they have. And not while he was in a group home, by the way.) But bad things — God forbid — can also happen to Max and Ben. And Ned. And me. When you look around, you see that bad things happen anywhere, out of the blue, at any time. Car accidents, gun massacres, measles outbreaks, floods, drugs, cancer, suicide, divorce, homelessness, the Trump presidency. This may sound like a terribly pessimistic appraisal of the human condition, but it was bizarrely comforting. Because it is the way life is. Unpredictable, at times scary and horrible “red in tooth and claw,” according to Tennyson.

The truth is, that in a good group home there are many “eyes on,” meaning, there are enough staff to take care of and watch out for your guy. Conversely, there are four other people in need of care and so you really do have to learn to suck it up a little. And if you have a need not being met, you have to learn how to get that taken care of. You learn how to deal with others who don’t love you and may not understand the way you communicate. This applies to both staff and other residents. Group homes also offer structure, again, because they must. There would be too much chaos to run a group home without a schedule and expectations.

I’ve done due diligence. I have found group homes that are good, not at all grim, and long-lived. So we do not have to set up our own (risky) situation. My family need not spend tens of thousands of dollars a year on support staff — and what is the guarantee that private group homes staff are any safer? The beauty of public programs like the Medicaid waiver are that we don’t have to reinvent the wheel, or set up alternative programs that offer the “dignity of risk” through fewer supports because actually there was too much risk there for Nat. Just because a setting looks shiny and hip because “Thank God it’s not a state-run group home,” it doesn’t mean it is good. A more inclusive, less supported setting wasn’t good for Nat — or his former caregivers. And there is no shame in that. Perhaps there is even less risk of stress and burnout in a group home because of the increased support.

Because life is so many things at so many times, we do need to take risks — smart risks. We need to keep having children, loving them with all our hearts, devoting our lives to them. But we also need to step back and let them grow up. We need to “teach our children well,” as Crosby Stills and Nash say, make intelligent choices, but in the end we are flawed, as is the world, and life. So what to do? We live our best lives anyway, hope for the best, and crawl, broken and defeated, out of the hole to live — as well as possible — again. All the while, trying to repair that messy road so that you and others do not fall in. Maybe not with the blind faith of Abraham, but a wise and informed faith. With our children we’ve got to know when to hold ’em — and when to walk away.