Susan's Blog

Wednesday, November 13, 2019

Nat is 30

Even back in 2005 when Making Peace With Autism came out, I knew that I’d made a terrible mistake with the opening sentence: “The hardest day of the year for me is Nat’s birthday, November 15.”

How could I have thought such a thing, much less published it for everyone to see?

What if Nat saw?

Realistically, he wouldn’t because he doesn’t read books like that. But still. Imagine a child seeing that.

Further on I wrote:

Of course, Ned and I are happy to celebrate Nat’s birthday, going to great lengths to come up with presents that catch his quicksilver attention and baking a cake slathered with frosting because the frosting is the only part he’ll eat. We invite all the family members who can make it. But no friends, because Nat has none. No, as far as we’ve come being Nat’s parents, we cannot say we enjoy his birthday. Ned feels it’s because Nat’s birthday makes no difference to Nat himself.

God damn it. Nat has no friends? Garbage. He’s got friends here that he’s had since he was ten. He’s got friends in his group home. He’s got friends from his teams, from his day program. But that’s how I saw things. Remember, back then I was making peace with autism, it was a gerund, a verb in the active tense, I had not made peace with it.

Oh but that’s why we love your writing; you’re so honest, no sugar-coating, people say, as if that excuses it, this public breast-beating. Poor me.

Poor me, when I’ve got a healthy 30 year old (on the 15th) who has a place in the world, family who loves him, friends all around, healthcare, and two nice homes.

Look: I gave birth to a neurologically atypical son. That means he does not perceive things the way the average person does. That means he understands things differently from normal, or maybe not at all. That means he has to be taught explicitly anything we need him to be certain of. Safety. Self-care. Asking. Answering. Counting. Reading. Public versus private behavior.

We used to even teach him how to play. Kids must play, right? And boys must play with cars, or role play, or play games.

“Put boy in car. Car goes ‘vroom.'”

We were told that if we give him the tools, like the mechanics of play, he would collect them in his experience and begin to expand from there, playing naturally.

Nope, never happened.

I came to understand that typical fun is not how Nat experiences fun. We don’t quite know how he experiences fun, and we still don’t. And yes it makes me sad that I don’t have too many ways to have fun with him. Again, poor me.

Because I do have fun with him. It’s that hanging-out kind of fun. I’m a talker, so I don’t get to do that with him. So instead we’re active. We shop. We cook. We walk. We go to parties together, because his friends are our friends, and their parents are our friends. Ned and I joke that we have a social life because of Nat.

Even back then, when Nat was four or five, it seemed stupid, irrelevant, and sad to spend time showing him how to act like a typical child. Mean, even. What was he, Pinocchio? Not a real boy? His was an ABA school, and I loved the place, because Nat did learn there! But I didn’t like the way it was all ABA or the highway. Never Nat’s way.

And with ABA, at least back then, all the messages were, “you’re not enough the way you are. You have to relearn that, do it this way.” Constantly battle with your own instincts and impulses. All so that you can blend in.

How insane is that? We’re all individuals. Blending in means to some extent losing yourself among the others.

We were teaching Nat to lose himself even before we knew who he was.

Well, now we know. Nat is a (just about) 30 year old man who likes his space. He loves singing in his band. He loves when he knows exactly what to do (who doesn’t?). He loves just about any activity, new or old. He’s flexible (except during his times of great anxiety, which do come every so often. We just finished one when he was smacking his head a lot). He loves being around people as long as he doesn’t have to talk much. But sometimes he even likes talking, if the conversation is clear and focused on him. If the answers aren’t floating around out of reach.

Nat loves attention. Positive attention, like when he sings. Nat does not like to feel lost in the crowd. Nat likes to know what to say and what to do. He loves cues.

He does not like to blend in and we no longer believe he has to.

I guess I still haven’t made my peace with autism — it is hard for him, dammit, it is! — but I sure do know how I feel about Nat. He’s amazing. And his birthday is the celebration of him, blond, bright, and beautiful, smart and sassy, secretive. Devoted to his friends and family and traditions.

A guy who will always be there for you.

A guy who loves with all his heart.

So on his birthday, I celebrate all that is Nat.

And I hope he is happy.



Wednesday, October 9, 2019

What Does Independence Look Like For My Adult Autistic Son?

Here is the latest column for Psychology Today. Enjoy!

Thursday, October 3, 2019

The Universe According To Me

When is enough, enough?  When do we let go and then grab onto something new?

As I get older I need to be able to answer that question and not look back. I had a particularly good day at work today — I teach writing at Northeastern University — which means I got really really tired. My hour of teaching three days a week is a time period when all of my usual creative energy is compacted into those moments. If you know me at all, you know then that this is a lot of creative energy concentrated and distilled in the best, purest thinking version of me. And like the Laws of Conservation of Matter and Energy, once that creative thinking speaking piece of me is spent, it is gone. And that is why I am writing so little these days. Keep an eye out for Universe casino slots games and their awesome jackpots from daily free spins.

Any other part of me has to go to my family (BenMaxNatNed and sometimes MomDadLauraSomeFriends), and my biking/dancing and then, if I can, AutismAdvocacy. This formula has been mixed, remixed, and titrated over the years to yield the happier form of me that you see today. I came to understand that there was only so much I can say Yes to and that I have to choose carefully.

So today I got to thinking about the item I had planned to participate in later on in the day. And all I could feel was dread and resentment. Not irritation with the folks that invited me to this meeting, but with myself for having been foolishly optimistic about my ability to attend a new committee at 6:30pm in a town 30 minutes away.

Oh, but the meeting is about something to do with Nat’s quality of life. Does that come under the Nat category or the Advocacy category. When I’d agreed to do this, I was thinking mostly it was for Nat.

Actually I still think this committee is an activity that would affect/improve Nat’s daytime life.  But there’s a lot of work for the Greater Good involved, too. As a younger woman, I would just leap to do the latter. I was all about the Greater Good in my career: making the world understand and appreciate Nat and autistic people in general. Different people. I wrote books, articles, served on committees, lobbied legislators, went to the White House and the State House.

But today as I was walking across the quad of my new favorite university, I was feeling both exhilarated and exhausted from class. And I realized that in that 65 minutes I had not thought about Nat once.

I can hear you gasping in horror.  Or was that me?

I hadn’t thought about my two other boys either, but you don’t gasp over that. That’s because they are 27 and 21, independent, out in the world.

But Nat.

Well, what about Nat? I thought to myself, there actually is a reason I didn’t think about Nat, that I don’t actually think about him during the week until Friday, when the weekend is near and he will be visiting.

I don’t think about him. You heard that right. And that is because he is for now settled into a wonderful group home, and an equally terrific day program. And so a great deal of my energy can now go elsewhere. I can work at a university. I can buy myself lunch at a gorgeous cafe. I can take the long way home from the trolley.

This is because at this moment in time, I feel my boys are okay, more than okay. Evil Eye, stay the fuck away, let me say that. Let me bask in that. And let me blow off tonight’s meeting because, Dammit, I do enough.

Though at the moment I decided this, I didn’t feel okay. I sat down with my computer and who should pop up on Messenger but Max. He just wanted to say hi. See how I am. Hear about my day.

And I think that perhaps there is some kind of Universal Law going on here, where maybe Max picked up on my mental freedom, my openness, and he made that connection with me.  I don’t believe there’s a Master Plan for us; I do understand that energy and matter cannot be created or destroyed, and that my own energy and matter are finite. But I also believe that things conspire — randomly or deliberately — to free up crowded old pathways as we grow, ripen, age. And that there are endless pathways for our energy and our love to take if we are open to them.


Friday, September 20, 2019

A New Year, A New Family Member — or Two

Recently I hosted a family party — my mom’s 80th — which was just immediate family and close relatives. It was great reconnecting with cousins and with my Aunt Georgia and Mom’s brother Gerard, and Aunt Rhoda, Dad’s older sister.

I think Mom felt the same way. She seemed on a high the whole day. I was particularly excited about this because it was one of the few times we had really celebrated just Mom, and not as part of a really magnificent couple with my dad (82).

We celebrate the two of them a lot, because they have a pretty extraordinary relationship, having started dating when she was 13 and he was 15. And even though the party was about Mom, Dad figured large in the whole thing because he is rather larger than life at times. And Mom is so used to basking in his colorful admiration that it made sense for Dad to have a big part in the event. He read her one of his best poems — he has written numerous books of his poetry, which were adapted as quotes about heartbreak — and also he sang to her.

But another wonderful thing about the day was that all Mom’s grandchildren were there at the same time, which is a rarity these days. And so all three of my sons were there, which made it utterly delicious for me. What’s more, Max and Ben brought their girlfriends. Interestingly enough, a cousin also brought his girlfriend, so there we were, an expanding family, and Mom as the Matriarch. Lovely to see the old and new faces.

Nat did not bring anybody, nor did any of us expect him to. Nat is far more solitary than his brothers. And although he lives with four other young men, who also have autism, they are in a group home with supervision. It is very difficult for me to imagine any of those guys out of context of each other and the staff of the home. In the past, we have managed to invite disabled classmates of Nat’s, or housemates from his various group homes — especially for his birthday or his concerts. But it never occurred to me to invite someone connected to Nat to this party because none of us are used to thinking of Nat that way.

This morning I was thinking ahead to other events coming up for the family and I remembered that I’d made a date for my parents to come to our house for Rosh Hashanah dinner.  I’m not all that religious but there is something special about certain Jewish holidays — Passover and of course Chanukah, the Jewish Christmas. But Rosh Hashanah is during early fall and is the Jewish New Year. The end of the year and the beginning of preparing for the new one. And autumn being harvest time makes it a perfect setting for this fall holiday. Rosh Hashanah is a favorite of mine and Nat’s.  Maybe it’s the beautiful crisp brilliant light of fall, and the feeling of renewal that autumn brings. Or maybe because we eat apple and honey (to symbolize autumn treats and sweetness in the year to come). We both love dipping apple in honey. Nat even knows the Hebrew prayers over the candles, wine, challah, and for the apple and honey.

My mom loves Rosh Hashanah, too, but it is in a more bittersweet sense. She remembers her parents, brothers, and grandparents at this holiday and how rich a celebration they had, being Orthodox Jews. The excitement extended to the food — not just apple and honey but also specialties like kasha varnishkes, chicken matzo ball soup, and carrot tsimmis. But I think that typical of Jews the food is associated with love and fun, and family. And Mom really misses her original family. This time of year she is particularly vulnerable for not having them there. I sometimes imagine that for mom the presence of her ghosts can fill her heart with such longing that she has a hard time actually enjoying it with the rest of us. I feel for her. I want to help that ache but of course I can’t do much.

This year Mom called and asked if she and Dad could spend the special dinner with me. I was so delighted to get this call, because it would make the dinner so much bigger than what it usually is:  Ned, Nat, and me. I think that like my Mom, I tend to remember the Rosh Hashanahs of my girlhood, the intensely moving evening service at Temple and all of our special food as well as seeing friends and family like my Aunt Rhoda. But my memories are strictly happy and full of the desire to continue those special times with my sons and their significant others, because I’m lucky enough not to have to experience the pain of loss that Mom does. Knock wood, my loved ones, old and young, are still with me.

I thought about inviting Max and Ben because now the dinner was feeling more special with Mom and Dad coming. But I didn’t invite the boys because they had just been here for Mom’s party, and it’s a bit of a hardship for them to interrupt their lives — Max works as a cameraman in New York, and Ben is in college in Savannah.

I wondered how to expand the family — it had been so much fun being a bigger group at Mom’s party and also in childhood. But without Max, Ben, and assorted girlfriends, there didn’t seem to be a way. I wondered about my Jewish friends but they all have their own dinners.

Then I thought about Nat. I envisioned him in his seat at the end of the table, saying the prayers, wolfing down the apple and honey and then the brisket, and then getting out of there. And I felt sad to think of his solitariness, his typical isolation. Yes, he does want and need his space, his autism demands it, but I also know that he has relationships with others. I started to think about those others: his housemates. Suddenly I got really excited, imagining them there.

But just as quickly I imagined how difficult logistically it would be to have his housemates there. They’d need staff, and would I be able to make the staff feel welcome in that setting? No, the boundaries are just too hard to cross; I thought they would feel awkward. And as far as asking the housemates’ families: well I have never met any of them. I did know that they were likely not Jewish. So where would I even start?

And then another idea dawned: I could invite Paul and his wife Rachelle. Paul is Nat’s case manager at his day program, but he has also done respite for us many times, and Nat always leaps for an opportunity to hang out with Paul. Paul seems to love it, too. His texts and photos of Nat and him together always show a mutual enjoyment. Because of Paul’s unique relationship with Nat, and his clear love for him, I have found that I can ask Paul for advice on Nat. Paul’s wisdom is far beyond his years. I got very excited about asking Paul to come because of the different ways Paul has been in Nat’s life and because I can see that this relationship will probably go on for a long time.

So long, in fact, that I wondered if Paul would even be there for Nat when Ned and I were too old to be. I realized that if there was a chance that Paul would become even more important in Nat’s life at that point, then Paul should take a prominent position in Nat’s life now. Suddenly I saw the absolute truth in this. I thought of Max and Ben again, and how they would likely have girlfriends with them more often than not, and that the family always makes room for these new faces.

So why not make room for the important people in Nat’s life? Maybe his housemates couldn’t come but maybe with more planning they would someday. But Paul only required an invitation and desire to go.

Suddenly I really needed to make this happen. We would take Nat’s attachments as seriously as we took Max and Ben’s. I confirmed with Ned about expanding our dinner this way and then I went ahead and invited Paul and Rachelle. Paul said they’d come and added that he was always eager to learn about new things (in this case Rosh Hashanah). I think he will take particular pleasure in seeing Nat say the prayers.

This new addition to our family holiday will make Mom happy, too, I just know it. Because even though I can never bring back her now departed loved ones, I can show her that the next generation is expanding in all sorts of ways, and that our family traditions of food, love, and tradition are as strong as ever.  As Nat used to say, ages ago, “It’s a-different, that’s okay.”

Sunday, July 7, 2019

Already Missing New Orleans

“…Ole Mississippi, she’s callin’ my name.”

Just got back from a trip to New Orleans with Ned for our anniversary.

We stayed in a glorious old hotel, the Monteleone. Our room was smallish but very sumptuous, with a wall of windows looking over the rooftops out to the Mississippi.  Ben had given us a book about haunted New Orleans and we found out that there were twelve spirits in our hotel, one of whom hung out on our floor! Never saw him or felt his presence though. They had a nice pool on the roof, and just off the lobby was the Carousel Bar, that actually rotates.

First day there we ate beignets at Cafe Beignet:

Then we walked to Jackson Square where there was a street performer and many Tarot card readers set up before the park. I chose a reader who looked happy and full of life — she was wearing bright yellow and listening to her music, whereas the others were all trying to look somber and important. I’m not telling you what she said, but after a 30-minute conversation, she and I parted as dear friends.

That night we ate dinner at Cafe Amelie, in a shady courtyard with old-fashioned string lights and a large fountain.

We asked for the table for two by the fountain but they told us it was reserved for a couple and that the guy intended to propose. They arrived shortly after us, a big man in pink shirt and white pants and a small dark-haired woman, also in white with high pink strappy sandals. We ate slowly and watched them discreetly, waiting to see what he’d do. Nothing happened until they’d actually finished dinner. They walked over to the fountain and finally he knelt in front of her and gave her the ring. They hugged and kissed, we applauded and told them it was good luck because it was our anniversary.

The next day we explored the French Quarter, and the Garden District, just taking in the sights block by block. We visited the House of Broel, which is a wedding venue, a dressmaker, and a Dollhouse Museum(!) They had tiny vignette after vignette of miniature Victorian life.

The Garden District is full of stately homes, the Lafayette #1 cemetery, and Magazine Street, with artsy and funky shops.

We got some Snoballs (flavored shaved ice) to cool off, just in time for it to start pouring rain, with drops as thick and hard as shots of bourbon.

Our dinner reservation was in a courtyard restaurant, but because of the weather the courtyard was closed. Our next choice turned out to be closed for the week, so we just ate dinner on a second-floor balcony of a casual place, Curio. I had my first po-boy, a fried shrimp one. Later we went to Frenchmen Street to check out the jazz scene. We usually don’t like jazz but we loved it there; it was magical, and really fun wandering in and out of the wide open bars and taking in the music.

We especially enjoyed the impromptu brass band that spilled over from a street corner actually into the street, delighting pedestrians and frustrating people foolish enough to try to drive there.

Next day was our bayou boat ride. An old guy picked us up in a van with another couple and a young Brit and drove us to Honey Island, telling us all about Hurricane Katrina. Eighteen feet of water out there (East New Orleans), just as bad as the 9th Ward within the city. On the boat ride we ventured down the brown Pearl River and deep inside some strange cypress groves. The captain got many gators to approach the boat by offering them marshmallows. Who knew that gators ate marshmallows?

That night we went back to Frenchmen St and enjoyed it even more than the night before because we knew which bars we liked. We ate dinner in one of them, Bamboulas, and stayed a while. The street scene was as wild as ever, even on a Tuesday. Ned played washboard with a guy named Windex Pete.

The next day we went to the Botanical Gardens. They were gorgeous: section after section of tropical or more typical perennial gardens, with an exhibit of rain forest and also of prehistoric plants (mostly many many different kinds of ferns).

We also went back to Magazine Street and walked the other end, all the way up to the Snoballs place. Before we got there we found a lovely little outdoor cafe, Bordeaux, and had lunch there, with a frosé (Frozen rosé with peach and lemon vodka). Delicious and beautiful.

Terribly hot outside, though. Bordeaux, like all other NOLA cafés, had big ceiling fans as well as wall fans that had water misting from them.

And back to Frenchmen St. after a dinner at Napoleon House, where I had a roast beef po-boy. This time we watched a fantastic Zydeco band, Crawdaddy T, whom I loved so much I tipped them twice.

July Fourth we tried beignets at the famous Cafe du Monde and then took a steamboat ride down the Mississippi on the Natchez, which is one of two remaining authentic steam-powered ships in the US. We learned more Katrina history, including seeing where the levees were breached by eighteen feet of water, and the damage that still remained.

That night we ate dinner at the Original Pierre Maspero’s, which was the spot where Andrew Jackson and the Lafitte brothers (pirates) plotted what was to become the Battle of New Orleans, the final battle of the War of 1812. And of course, on to Frenchmen St after that. On the way, we ran into a second line for a wedding party. Very New Orleans!

Fourth night in a row of great music. We had to be sure to be back at our room in time for fireworks, a stunning but surprisingly brief (10 min?) display from a barge on the river.

Our last morning we had a full breakfast on a tiny balcony in the French Quarter, a little souvenir shopping, and then off to the airport. Gotta go back again sometime, just loved it there.  Where else do strangers call you “darlin'”?

Sunday, June 30, 2019

Someone Called the Police on Nat

The day they called the police on Nat: my latest post in Psychology Today.

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.




Sunday, April 28, 2019

Why Autism Parents Say “I Can Never Die”

Here is my 13th column for Psychology Today. It’s been a great year writing for them! This column is about why autism parents say “I can never die.

Tuesday, April 2, 2019

Light it up blue or red? We need a whole rainbow

Today is World Autism Acceptance/Awareness Day. Do you light it up blue? Wear red?

(Answer: I only wear what looks good on me.) Seriously, I have nothing against the Blue. Or the Red. Not so for others in my community. The Blue is deplored by many because people in our community have a beef with Autism Speaks, the original Blue Puzzle Piece organization. The antipathy ranges from how AS funds are spent, to awful Public Service Announcements from their early beginning, to the fact that research is mostly about cause and not direct support. Causation research is by implication about eradicating autism. This feels like a threat to the self advocates who embrace their autism, or to other autistic loved ones.

But Autism Speaks is largely responsible for putting autism on the map, for opening the public’s eyes to this disorder and its challenges. For securing legislation and autism funding. They offer resources to families and autism-friendly events (theater, circus performances, movie nights) nationwide, opening up supportive activities to families who may choose to stay home because it is easier.  Maybe it isn’t enough, maybe they could be more sensitive in their message, maybe they need to ask autistics where the need is greatest. But I still would not throw the baby out with the bathwater. Autism Awareness is a tide that has lifted all of our boats.

However now it is time for a new kind of awareness. The red group has been instrumental in moving us all to a new paradigm for autism, which is to listen first to autistics to understand autism, and and open up policy-making and the seats of power to the neurodiverse. Wearing red is about being an ally to neurodiversity, a growing movement with the beautiful rallying call: “nothing about us without us.” The ND group aims to subvert the old autism narrative, to show that autism is not a scourge, not an epidemic, but rather something about oneself to be embraced. They identify as autistic, and with pride. I applaud this. The true human condition is one of broad and colorful variety, and our arms are wide enough to hold them all.

But I also understand that this message of “ask an autistic about autism” can feel like a tall order to the severe autism advocates, the parents who must be their loved one’s voice. I believe that most autism parents devote their hearts and much energy to helping their child communicate. But sometimes they have not been able to elicit enough information from their autistic child to know what they want, what’s the matter, what they need, are they sick, hurt, depressed… the parents must become detectives, hunting for clues to bring out that precious voice. The parents of the severe (I count myself as one), feel that they must speak for their children. And so, the neurodiversity folks see this as wrong, as something about us without us.

There is terrible animosity on the Internet between the groups, which is really too bad because like it or not we are one huge community, and we are really getting somewhere in terms of public awareness and acceptance. Inclusion in schools, inclusion in the workforce, inclusion in elections, inclusion in culture, all of this is happening! Not fast enough, not broadly enough, but that is the way all social movements go. Love takes time.  You don’t just overturn attitudes in a few years. More work is to be done, now and always.  But let’s do it together.  I agree with the sentiment I’ve seen here and there: “Celebrate autistics, not autism. Honor every experience. Gray areas, People.”

And don’t be a part of the problem. It’s hard enough.

Little Rainbow Autism Tree says, “You can do the thing”

Thursday, March 28, 2019

Albert Camus’ Search For Autism Housing

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)


Thursday, March 21, 2019

When the Fork in the Road is Actually a Knife

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.

Monday, March 18, 2019

There’s No Place Like (Forever) Home in Autism Adulthood

“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

Wednesday, February 27, 2019

Listening to an autistic person

Here is my latest post in Psychology Today, about listening to what Nat has to say.

Thursday, January 31, 2019

Closing Time

I didn’t even notice the sign at first, I just pushed the heavy door open and walked up to the cash register to order. Jimmy Owens, the barrista who greets you with “Hihowaya?” pointed to the door, and there it was in black and white. Peet’s in Coolidge Corner would be closing its doors on January 25th. “What? Why?” I sputtered, but I kind of already knew. Just like the Chestnut Hill Peet’s that closed last year, the volume of business in Coolidge Corner Peet’s probably did not justify its operation anymore. Corporate metrics. But although our Peet’s is technically part of the national coffee chain, its quirky scruffiness makes it stand apart from the sheen of corporate America. “Are you going to be okay? Do you have a job?” I asked, not knowing what else to say. Jimmy told me his plans but I was already feeling a darkness descend on us both. 
I went to one of my favorite tables to write, but like a lost child I just kept thinking, “Where will I go?” I’ve never felt this way before about a store or restaurant closing. Even when the Coolidge Corner McDonald’s closed, though I felt for the many seniors there who camped out for hours because of the inexpensive coffee, I didn’t feel as bad as I do about Peet’s. There are so many coffee shops in Brookline but to me, none have the quirky, warm, comfortable feel of Peet’s. CC Peet’s is like the nerdy shabby beloved absent-minded-professor of coffee shops, kind of Intelligentsia with a hippie edge.
Though there was talk of potential renovations at one time, I was always glad they didn’t go through with it. The tall windows that line its walls do let in huge puddles of water on their ledges — but also the best soft light. And once you wipe them off, those ledges provide extra seating. Often packed, strangers will share their tables with other lone customers. People dance nimbly around each other reaching for the cream and sugar, keeping an eye out for a newly-vacated table. Conversations in all sorts of languages and every emotion rise and fall, punctuated by the frequent screech of a chair being dragged to a table. The cacophony is just part of the ambience.
It is often noisy, but that doesn’t matter. It’s the friendliness of the place that keeps you coming back. Sometimes the staff comps people their drink or at least delivers it right to your table. They know our orders, they know if it’s “for here” or not. Anybody who is anybody in Brookline goes there to make deals, hatch ideas, write their magnum opus. Deals have been made, fortunes lost. Well, maybe not. But fourteen years ago, my writing group originated there, and it was at those square wooden tables that the three of us celebrated landing our book contracts. And there are so many others of us who have now lost their haven, just like with the McDonald’s. The elderly couple who always come in for an espresso; the young moms who must park their tractorlike strollers in the aisles and exert no control over their unruly juicy babies; the woman who keeps her dog loose in the entryway. Where will they all go now?
I posted the news in the Brookline Townwide Forum on Facebook and right away had sad emoji after sad emoji and empathic comments. Anger, too. We all looked for someone to blame. “People just camp out with their one coffee, and take up tables.” True. Guilty. Although I try to buy other items when I’m there for longer than an hour, especially since they started selling sandwiches. “It’s the students,” someone scoffed, presumably because they can’t really afford more than one coffee, nor do they have nice places to work. (When in doubt, blame Millennials.) “Can’t wait for another bank,” someone muttered. In fact, there is another place that serves Peet’s, the Capital One Cafe, nearly across the street from the real one, and it is housed in the bank. To me, it is not the same. Too quiet. No real atmosphere. They might as well be serving Starbucks.
Sure, there are likely a combination of factors leading to this sad closure. Brookline’s high rents? Tight parking? Lack of tables when customers need them, leading to the exodus to the Capital One? The sign on the door reminds us that there are still two Peet’s in the area: Harvard Square and in the Capital One in downtown Boston. It doesn’t even mention the Capital One right here, I noted smugly.
I wrote to Peet’s customer service to find out their side. They had this to say about it:
“Peet’s Coffee must keep pace with changing and evolving markets to enable healthy company growth. While it is not an easy decision, regional adjustments to our coffeebar presence is important for effectively managing our resources and continuing our U.S. expansion. That said, Peet’s is committed to the Boston region, having added new locations in recent years, including a coffeebar outside the city in Sudbury this past winter.
There may be a silver lining, I’m calling it the Miracle of Newton Centre Peet’s. According to the Globe, Assistant Manager Faye Goldman recently partnered with Central, a restaurant right across the street. ( Central is open at 4pm, for the dinner crowd, and so Goldman has opened a cafe there during the daytime hours. So far this looks to be the beginning of a beautiful friendship. Maybe some Peet’s loyalists will strike up a similar partnership with a restaurant or business on Harvard St? I hope so. The Peet’s rumor mill told me that there may be something Peet-y coming to The Arcade. I already have a name for it: For Peet’s Sake.
Wednesday, January 9, 2019

Connecting is everything

I talked about you today. I was thinking about our new agreement, that we follow the schedules carefully, use the timer, and stay consistent. We didn’t make this a formal agreement, of course, it was one suggested by Miyabe and Elaine, and then underlined by your insistence to keep the world from becoming chaos.

I’ve always known you wanted that, but it was my belief back then that we had to make you flexible, that we wanted to be able to be our impulsive selves, to be a family of five, and not just three. I wanted your brothers lives and rights to be as strong and vital as yours.

I also learned a long time ago that I had to stay on your side. Not like staying on your side as opposed to someone else, but stay with you, lay aside all of my needs other than the one to connect with you. It’s more than a need, though; it is my job. The most important thing in my world is my family and that includes you.

Today I thought more about what staying on your side is. I found myself looking back over three years, back to the time when you were hurt and we didn’t know how or why. We took you back home with us. I am so glad we did that because I think that was exactly what you needed. Your anxiety has been through the roof since then and today I realized that it probably is your trauma speaking. You never had a chance to really work through and make sense of the broken ribs, the tremendous pain your were in. The fear of whoever did that to you. So of course wouldn’t those emotions and burdens stay with you? Doesn’t it make sense that anxiety propels you skyward, doesn’t let you go, keeps you barely tethered to the rest of us?

So our agreement is that you stay with us all weekend, every weekend. It’s what you like best. We were trying, before, to get you flexible about where you’d be on the weekend but you let us know that this kind of uncertainty was a trigger.

Now, and back in my best parenting moments, I need to be completely present for you. I need to boil down to the very essence of mothering. I feel like I have to inhabit your soul for a little bit to give you the connection you need. You’ve always said, “you” when you mean “I.” It’s always been hugely complicated for you, being Other with people, especially me. I don’t think you want that feeling at all. That alien floatiness.

And so, each weekend, I need to get myself to the point where I am no longer afraid or bored or resentful or distracted. I am just with you, and it is very small and quiet but it is everything. Because you feel it when I’m with you. When we’re like that I can simply rest next to you and just be, and watch you just be, too. You feel that oneness and it calms you and you have touched the ground again. Staying on your sides means we ground each other, and then we can face anything.

Tuesday, January 8, 2019

From Tribal Fusion Bellydance to Tolstoy

I’ve always been fascinated by extreme opposites working together at the same time. I love the way classical, orderly Enlightenment Europe morphed into its opposite, stormy, histrionic Romanticism. In philosophy, music, poetry, and painting. Late eighteenth century rationalism caves into moody sturm und drang of the early nineteenth century. The symmetry of Mozart into the surprises of Beethoven. Voltaire, Rousseau and then Hegel to Marx.

Whew. That was a long time ago, in history and in my life. I thought those interests of mine had gone underground in the last few decades of my life, disappearing into autism advocacy and public policy, mountain biking, and bellydance. For me, one opposite pursuit slowly bleeds into the distant other. Until I recently realized the connections my subconscious makes between one and the others, I hadn’t understood the obsession I have with Datura online Tribal Fusion bellydance classes. Tribal Fusion is an amalgam of two streams of bellydance: American Tribal and Classic Raqs Sharqi (Dance of the East, or what we normally think of as bellydance). American Tribal Style (ATS) originated in San Francisco in the 1970’s — hippie-like and organic, round and flowing — a completely new branch of bellydance that incorporates a lot of ancient folksy styles and traditions along with a whole new vibe of relaxed group dance, following a leader.

Fusion is a spinoff of ATS in that it adds in more of the Golden Age cabaret style of bellydance combined with a kind of steampunk/new wave thing.

Tribal Fusion is earthy-metallic. Black lace and pewter. Big ruffled skirts with black and white striped tights showing through. It is not sparkly and pink. There is a return to the good old Lebanese-style relevé, but also the traditional flat-footed country Saiidi style.

I can’t understand why I am attracted to Fusion but I guess every passion evolves over time, and I’ve been bellydancing for thirteen years. I sew sparkly girly Egyptian-style costumes, but these days I dance Tribal Fusion.

Lately I’ve been dancing for an hour or more to this stuff. Tired, aching, but in the zone. Arms almost straight out, shoulder height, bellyrolls up-to-down, down-to-up, body figure 8’s, and 3/4 shimmies on relevé. When you’re doing Fusion it sometimes looks like your body is a Hydra, composed of many snakes moving in all sorts of directions. You simply boil with movement.

My body is 56 years old and I feel very proud of the moves I can make these days. Just today I mastered belly flutters and 3/4 shimmy Arabic style. Hips shaking at one speed, torso rolling at another, feet on tip-toe stepping delicately one behind the other, arms waving as gracefully as possible.

Why am I going on and on about this? Because dancing it is not even enough of an outlet for what I’m feeling. And I’m glad that I can finally kvetch out even this erratic blog post, because all I have been able to do lately is dance and then stare at my screen. And write about autism? I can’t, I just can’t. More on that later. (I hope)

Dance for me is the opposite extreme of me as autism advocate. No thinking involved. It is just movement born of brain energy pushed into one area of the body and then another. The music doesn’t even make sense (to me, a North American) the way Western music does. The ribbony melodies, the exotic instruments, the trance-producing drumming — they are the antitheses of writing about autism. Which is the antithesis of writing my Master’s thesis which was, of course, about one particular symbol of Rational-to-Romantic thought, Leo Tolstoy.

And yet you will find that my website’s tagline is a quote from Tolstoy, turned on its head.

But — that quote was Tolstoy during his Rational phase, before he became a mystic.

I wonder what Tolstoy would have made of bellydance?

Monday, December 24, 2018

Timer heals all things

When Nat was five he started his life at the May School in Arlington. The May is a behavioral school, dedicated to positive reinforcement such as earning tokens towards desirables, taking small incremental steps towards goals, and scrupulous attention to “behaviors.” The May people jumped right in to getting Nat’s attention, which is one of the first lessons taught in behavioral schools. I was very heartened to see Nat learning how to pay attention to people.

Nat’s first May teacher was joyful and kind. She focused her bright eyes on Nat and got him to listen to her sometimes. At the May Nat learned the concept of the classroom, of paying attention to the teacher, and doing what she said to do. That was huge.

Nat did well with learning the skills of the school life, because school skills work well with step-by-step, systematic reward-based approaches. But about six months in, the May began its Home-Based program, where we were to be trained in using these same techniques on Nat at home. That was when we kind of lost the thread. Teaching play skills in particular stymied me. “Put doll in car.” “Yayy, good job, Nat!  Now, Move car.” “Yayyy! Good job! Car says “vroom.” And so on. I saw that Nat could indeed learn how to look like a boy at play but we could not make him see the point of playing this way. The scales fell from my eyes and I began to sour a little on the May’s approach. We were only giving him forms to follow, structures, systems — but no joy. It was all too robotic. And besides, Nat’s joy was and still is found within his own mind. It seemed false, and missing the forest for the trees. I became skeptical of the whole structure-system-reward approach and told myself that Nat did just fine with my style and was learning flexibility. Over the years we have had our difficult phases with Nat, where we wring our hands and try to figure out how to help ease his anxiety. We look for solutions, we ask doctors, we adjust medication. But we don’t use timers and intricate schedules, that’s just not how we live.

Enter Elaine and Miyabe, Nat’s new Shared Living Providers. Elaine is an autism specialist, a transition-vocational special educator. And Miyabe, her wife, is one of the most brilliant minds I have ever met, and is also highly organized and intensely into structure.  When we first began discussing the possibility of Nat living with them, we made sure that they understood the full range of Nat’s anxiety (or “behaviors”). The four of us took a few years considering whether Shared Living with Nat would work. They had not experienced Nat having a full-blown anxiety episode, but they assured us that they could handle it, mostly because they would structure their home environment so that he would not feel too anxious to begin with. Before Nat even moved in, they had created a notebook with pages of brief instructions about what to do and how he can do it, such as a page on Morning Routines, or What to do in the Afternoon for Fun. He had a big whiteboard in his room for his weekly calendar, rules printed here and there, and labels on things like the shampoo bottles. All to head off anxiety at the pass.

I respected all of this, but deep in my heart I was afraid they’d still encounter terrible times of Nat’s anxiety. Of course we had not kept up with the behavioral techniques the May tried to teach us years ago. I’m not organized that way. I hate planning. I hate schedules. It is very difficult to create a schedule for a Saturday. If you try to plan, what about if something else comes up? Then he’s upset about the other thing not happening.

But once Elaine and Miyabe started living with Nat and implementing schedules, and Ned and I continued not to, we all started to run into trouble. Nat was having terrible episodes of anxiety where he’d be slapping his head and screaming. Elaine and Miyabe were very stressed out. But they were convinced that the outbursts were about inconsistency in Nat’s life — meaning when he was with us, because we were not adhering to calendars and schedules. Elaine and Miyabe, on the other hand, were using timers and writing it down, even for things like, “15 minutes until leave for the Y.”  But we were not, that’s just not how I roll. I continued to tell them that Nat needed a medication adjustment — true — and also that he was always anxious in the winter. Plus he had only just moved into their apartment in September.

Finally things got really bad. We asked the doctor to increase Nat’s Gabapentin. But Miyabe felt there was something missing. Why couldn’t we just try it a little? Couldn’t we try to stick to the calendars and schedules rigorously, to go over them the same time of day and week with Nat every time, even to use the timer if possible for transitions? Maybe — just maybe — if there was consistency across his life, he’d be less anxious. I took the timer and said I would try. But deep down I worried that I wouldn’t be able to, that it just doesn’t work. Or that Nat would be skeptical (why is Mom suddenly using a timer?) and he’d resist.

I was wrong.

Because I really want Nat’s new living situation to work, I gave it an honest shot, using the timer the first chance I got once he was home visiting us. I heard Miyabe in my head say, “So yah you turn the dial to 15 minutes and then in 15 minutes you really have to do the thing you said you’d do.” I tried it. In 15 minutes I would get ready to go food shopping with him — something like that. I went over to my puzzle and worked on it and then suddenly, “dingggggg.” I had to stop. I was surprised how short 15 minutes was. But I stopped immediately and Nat watched as I got my stuff together. Out we went.

I won’t tell you that all the anxiety simply melted away. But as Nat’s medication increase took effect, and as Nat began to see that we were indeed using the timer for things we used to just kind of get to when we were good and ready, he softened up. And I found I was able to create schedules just breaking up our normal unconscious routines. I could set the timer for an hour until pills. An hour until ice cream. Do Facebook for 5 minutes. As long as the timer was ticking and the schedule said something, and we complied with our rules, Nat was content. Ultimately, he realized we were serious. He realized he could trust us.

And that trust bred an ease within him, a reconnecting between us. Paradoxically, the robot-like approach of first-then-and now this, and then reward that we learned all those years ago at the May has led to a new sense of organization and purpose in our life together, a heightened awareness on my part of Nat as a person with needs, rather than a problem that needs maintenance. Again I learn he is not mysterious and difficult. I just need to use these simple tools to keep myself organized, and then he responds with happiness. And though it’s a little more work for me to remember to sit down and write up a day of tiny events and commit to the timer in between, the relief we both feel makes it immeasurably worth it.



Wednesday, December 19, 2018

Motherhood OCD

About 25 years ago, I suffered from acute Obsessive-Compulsive Disorder. It took the form of going back and checking. Really ugly stuff, I’m not going to describe it here. Until I had a very wise therapist who really understood — that, combined with Prozac, and the day came where I felt the tormented tickle of “you better turn around and look,” yet I walked on.

Moving forward is particularly difficult for me because I often still dip into obsessive-compulsive disorder. Now it is not the way it was back then, it is more of an idling, stalling engine. It stays put, rather than whipping me backwards. In other words, it is bearable. But that, combined with my sharp and heavy mood swings, make it a challenge to see my way out of the chaos that is my life. I hear things on two levels, all the time. I hear the meaning the person is trying to convey, while I hear all the lifelong messages in my own mind — emotional clouding of the picture, checking and re-checking the words.

This condition is worst when it comes to Nat. I have conversations about Nat and I’m parsing the intended message, right along with, “Wait a minute, is this message I’m hearing okay? What did I do, is this my fault? Did I screw something up, or did they?” Right away it’s either-or, right away I’m defensive and really it’s all because of fear. I get afraid that my whole world is going to collapse — usually in terms of Nat. I go right to “okay, a bad thing is happening, just like always, what did I miss, what should I do now?” It is so hard to sit and understand, to sort out the actual important message that I’m supposed to hear. I can do it now, with great effort. And my husband Ned’s cool water, his ability to stay clear.

My panic about how the world is treating Nat — and by Nat, maybe I mean me? — is ingrained, layered into my skin, muscle, and blood. Like any new mother, I held him so close because that was my job, but unlike many non-autism mothers, I never let go. I couldn’t. And so my own development took a turn as a young woman because I had a baby that no one understood. My child has struggled to learn, to grow up, and to move away from me but I have been SO afraid to let that happen. So neither of us has grown completely in that sense. I’m not saying I was right to be this way. I’m saying I can barely help it. You could say it’s a co-dependent thing Nat and I have. Even when he’s pushing me away with man hands, I let him, but I feel my stupid veins stretching right back out towards him, looking to reconnect.

Having a child no one gets is probably the most elemental scary thing that can happen to you as an adult. It’s no coincidence that my OCD began when Nat was a toddler. You have this fragile, beautiful innocent little being in your care, you seeded him, nurtured him inside your own body. You made him. And now he’s kind of being rejected by the world. Well, that’s how it felt to me, I think. It’s a Refrigerator World, not a Refrigerator Mom. The Mom is the opposite of the Refrigerator, she’s a hot oven that has no thermostat.

Every doctor had a theory, and when it didn’t apply, they shrugged. Every school had a dogma, and when Nat continued to defy their ethos, they kicked him out or they held on but their anxiety was transmitted to me. Now I don’t even expect people to understand Nat. My wounds for him are just weakly scarred over, lumpy and prone to ripping open again. Even when I have evidence that people do understand and care deeply, there’s a part of me that remains unconvinced, the OCD part. I never have had the feeling of sweet, deep rest. I have never been able to let go of him entirely.

It is not healthy for either of us, each being so tangled up in You.

People smile at this and say, “well, sure, you’re the mother.” But I don’t think they get how it actually feels, to be the one and only for someone you love with the force of a hurricane, an earthquake, a tornado, a shark attack. So when he’s out of my sight, I am always always wondering — will he be safe?

Am I consigned to always be dealing with Nat this way? How do I heal? How do any of us heal the ravages wrought from ignorance. My rage at the stupid ignorant world pours down on all of you and then it’s all rained out. Then, out of nowhere, I’m bizarrely hopeful again. Flying by the seat of my moods.

And so with Nat, I go in a loop. It’s relationship OCD.

Will I ever be able to walk on, to believe in his wellbeing, without looking back?

Tuesday, November 27, 2018

The Insidious and Omnipresent Infantilization of Disabled Adults

Here is my latest post for the Psychology Today blog, about how common it is to infantilize people with disabilities; how I recognized this attitude in myself. An experience with MUSE was, as it so often is, my muse for the piece.

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