Susan's Blog

Thursday, June 14, 2018

Don’t Call My Autistic Son “Buddy”

Don’t Call My Autistic Son “Buddy.”

This is the subject of my latest Psychology Today column, which you can find here.

Tuesday, June 12, 2018

Life will, uh, find a way

I had a bike accident a few days ago. I got “doored.” I had just completed a 19 mile ride, my usual summer route, when I decided to finish up riding on a road near my house, parallel to the park I usually ride in. I don’t know what made me change up the route, which took me next to a whole lane of parked cars; maybe just the desire to do something a tiny bit different from the park path.

The driver’s side door of the Mercedes swung out, just like that, and I yelled, “NO!” but there is no stopping the laws of physics. I felt myself moving through space, I heard the crack of my helmet, the slam into the hard road, and I remember thinking, “This is it.” I was going to break up into new pieces, rip away from this life and into some sort of new thing. I felt the deep-belly fear of what was coming, and a strange blankness of simply accepting it.

Then, a split second passed, I lay for a moment on my back, and I realized that nothing hurt. Could I–? Yes, I could: I stood up. No pain, just the small sting of scratches. Picked up my bike. My head felt a little heavy. I gathered my shoe, which had come off and was stuck inside the crankset, and my now-broken sunglasses, my helmet, and its scattered white brim. “Are you okay? I’m so sorry,” the driver said. I could tell he was. We were both shaken up.

Another guy came over and said, “It’s not your fault, you know,” and we both looked at him, not even knowing which of us he was talking to. But as a unit, we felt intruded upon, annoyed that he was interrupting what felt like our moment. I was actually resentful of the guy for turning this into something even uglier, about fault and laws and money. Especially since I was walking. And alive. My driver motioned to him to just can it. I agreed. We just needed to check in with each other.

Yes, I sound like he was the victim. Shouldn’t I have been angry? Shouldn’t I have demanded he give me his information so that I could bill him later?

But no, all I felt was this weird bond.

And, how could I have marshalled my senses that way, when I was just so shaken? I felt like I was only partially there. It was like I was floating around us, just going through some sort of post-accident motions, when all I wanted was to get out of there, get away from what had happened. I didn’t care to get his name, the promise of remuneration, his wellwishing. I didn’t want to stand there any longer than I had to to get my bearings and be done with the whole thing.

I actually rode the rest of the way home, which was only around the corner and up a small (but steep) hill. I was holding onto my broken glasses and helmet brim, with my helmet merely sitting on my head, unbuckled. As if I still owed myself the wearing of the helmet, but not really. Again, going through the motions, just to get home. To my husband Ned, to my home, to my bed.

It wasn’t until I got home and sunk down into my family, and my couch, that I started to cry and cry, just burying my face into my sweaty tee shirt collar and roar it out. I rested a lot that day — I actually slept most of the day, whether from doing 19 miles that day and 18.5 two days before that, or from the accident — and woke up feeling great.

I have a lot of bruises and stressed-out muscles but nothing else. Nothing but life and the open road ahead of me when I feel up to it. I am alive and nothing can stop me from living it on my terms.


Scarlett Begonias Rockhopper and me: together through thick and thin, ice and sun.


Sunday, June 10, 2018

I’m Biking For The MUSE Foundation

I am doing my first charity ride, September 1, in an organization called Bike to the Beach. Bike to the Beach pulls autism philanthropies together under their widespread umbrella so that multiple autism causes can come together and raise a good deal of money while networking with each other and raising awareness and giving away mountain bikes for beginners to help promote the advocacy. My team is Team MUSE Foundation. MUSE, which stands for Music, Unity and Social Expansion, is a non-profit that is all about community inclusion and social opportunities through musical instruction and performance.

I joined the board of MUSE in December 2017. I go to every rehearsal because Nat is part of MUSE. Nat started out playing in the rhythm section but as this story goes, one evening practice he heard a song he knew from long ago “Life is a Highway,” and he moved towards the mic. We all said, “Nat, sing!” and he did. Now he is one of the chief singers in the band, The Brookline Buds. There are currently two bands — the other is The Next Big Thing — but MUSE would like to expand to three — we have a loooong waiting list!

I would love it if you, my faithful readers, would consider a small donation towards our ride. Here is the link to my page, where you can find pictures of our MUSE students and instructors, and my donation button. Thank you for reading my blog and for supporting MUSE.

Monday, June 4, 2018

Thought For Food

Why down? Why now? No reason on earth. The mind just roams, searching, digging for the reason for the sad, ostensibly to pounce on it, crush it, make it so flat as to disappear it. But — the law of conservation of matter — so that can’t happen. Or is sadness an energy, rather than matter?

Doesn’t matter.

Somehow there is food attached. Or Food, as a big concept. Food I just ate. Food I want to eat. Food I can’t eat. Hours until I can eat again. And then it all falls to that: hours. There are hours worth of what I am supposed to do but really that I can postpone so why do it when I don’t feel like it? But if it’s supposed to get done, why put it off?

My body sighs, knowing that there is nothing to know. It is just this way, has been for my entire life. Well, except when it’s not. Pockets of time. A lot to do but nothing to do. So then it becomes a stretch of time to get through. And then: what a waste of time, of life. And so, even more reason to feel bad.

This is why depression has nothing to do with reason, with logic, with smarts. Depression is about the Nothing. It makes no sense, yet it becomes my entire reality.

To me it looks like a hated stretch of time that I hate myself for hating.

I look around, thinking, eat or sleep? The third is unthinkable.

And then I see the window and the light out there. It is a matte white light because it’s raining. Oh that’s why, many will say. No that’s not why. Because sun doesn’t change it when it’s there. James Taylor said it right, “I’ve seen sunny days that I thought would never end.” To me that meant they just went on and on and because I was sad while it was sunny that made it worse. Now I wonder if he meant he thought they’d never end, meaning he was enjoying them so much he didn’t have time to realize it wouldn’t last. Actually, that is probably what he meant, but I’ve known that song since third grade and always thought it was a person wishing all the happy sun would just fucking stop because they just can’t.

But still, there’s light, and it’s outside, which makes me realize I could do that: just go out.

But what if that’s nothing, too? Then I’ve tried the one thing that looked positive and it’s also a pocket.

Once again, too much thinking. Just go and see.



Sunday, June 3, 2018

Hall of Fame Speech

I was inducted into my high school Hall of Fame today! It was a lovely ceremony, with three other inductees from other graduating classes. The bond we shared was public service and giving back to the community. I feel so honored and honestly blown away by the thoughtful ceremony and the achievements of the others there. By the way, my high school is named after former U.S. Senator Brien McMahon, and so we were the McMahon Senators! You can imagine how interesting that was for me…

Here is the speech I gave today, drawing from certain life lessons of two of my favorite teachers:

“Get out of your culture,” Charlie Wiggins used to shout at us in twelfth grade Anthropology class. He meant that we were guilty of seeing different people through the lens of Americans. We were being “ethnocentric.” Unconsciously judging the world by our experience, our rules and mores, our privilege. Mr. Wiggins was thought of as kind of a hippie, a free spirit, and — even though I did not know the word in those days — a progressive.

I’d never heard of ethnocentricity. Oh, I knew other societies were different — like the French spoke French (and acted it!) Indians thought cows were sacred, the Puritans had avoided any sort of color or joy in life. But in my mind, people were still kind of like Americans, or wanted to be. Until Mr. Wiggins came along, and we studied the peace-loving Pygmies of the Belgian Congo, and also the warlike Yanomami of the Amazon Rainforest. And then we were asked to create a culture of our own. So my class worked for months on the making of Ema, which a classmate said meant “now” in Japanese. The point of Ema was that everything we did was all supposed to be in the present, for the present. Everything came down to just being here on earth.

The climax of the semester was for the class to go on a weekend camping trip where we would try to live in the world of Ema. We chose new names, from nature. I was Earth. My best friend Cynthia was Sky. One girl was Fern Texture.

God, we tried so hard. But the thing fell apart because we squabbled, we made inappropriate jokes, we started secret romances. We were teenagers, basically. And also, because cultures are actually so complex, so intricate and organic, that they cannot be constructed out of whole cloth, even in the greatest classroom environment. And yet in failing to become true Emas, we succeeded in appreciating the heart and soul and wisdom that goes into different cultures. We learned in a visceral way, the value of difference.

Bookending the mindblowing experience of Charlie Wiggins’ class was perhaps the perfect contrast: Stephen Hofheimer’s English class. Mr. Hofheimer, who wore leather pants and saddle shoes was the hippest thing we’d ever seen. Hoff is the guy who usually gets chosen as Favorite Teacher. He’s the one you seek out to autograph your yearbook. Everyone had a crush on him. We idolized him.

But AP English was also serious stuff. This was where we would maybe earn a college credit. This was where we would read The Classics. And maybe most important of all: this was where we would learn that secret formula to getting into a good college: Mr. Hofheimer’s weekly SAT words. We actually had to memorize something like 20 words each week, strange, hard words, like “Jejeune.” Or “Afficianado”. And, ironically, “sesquipedalian.” He would say each word out loud, getting his mouth around the thing like it was a fine dessert. He would give you the definition, and then use it in a sentence. It sounds – and was – boring, and yet. It was the first time I remember feeling the exoticism of words. His excitement, his appreciation for the very taste of a word, settled somewhere inside of me and I fell in love with language. And how to use words with care and precision.

I went off from McMahon and went to Penn, then got married. My husband Ned and I moved up to Boston. I thought I’d be a writer of some sort, and just continued writing novels that are still in my attic — and probably belong there.

Then I had my first child, Nat, and everything I’d ever known turned on its head. This beautiful baby was nothing like the baby books. He did not play with toys, he only mouthed them. Or lined them up. He did not like to be around other children. He would not get out of his stroller at the playground by the time he was 2. He could not answer a yes or no question. But he memorized entire books, talking endlessly from them, in scripts.

My Nat was diagnosed with autism by the age of 3. So not only did I have to deal with heartbreak, and learn about autism (before the Internet), I had to learn who Nat was. And I had to learn how to be a mother where there were no autism mothers around me. I had to learn what it was like to have a child who was very different from every child on the playground.

It took a few years for me to get on my feet. But one night, the day before Thanksgiving at my Aunt Rhoda’s house – she’s sitting right there – my husband and I were talking about how hard it was going to be to take Nat to the big family dinner, when we got the idea to make a book that would tell him exactly what to expect at Aunt Rhoda’s Thanksgiving. I wrote out the words in a way that Nat could understand, I cut up photos, we taped it all together.

Nat loved – and memorized – the book. And Thanksgiving was a success. Suddenly, I knew how to help my son. At my mother-in-law’s suggestion, I composed a brief article that described what we had done with the “Nat Book,” and it was published right away, in Exceptional Parent Magazine. Suddenly other parents wanted to know what I thought, what I’d learned about autism.

What I was learning was that the world was not prepared for guys like Nat. From lack of awareness to lack of funds to lack of empathy. To lack of best practices, fair laws. And it felt like I had to do something about it. I had to educate the world. I wanted them to understand and know Nat, and never ever simply dismiss him. I had to become an advocate, and teach everyone about difference. I have had to show people what an entirely different existence looks like. With my writing, I have tried to gently lead people out of their culture and connect with mine. With Nat’s. In writing my books, and in crafting a 750-word essay worthy of the New York Times or Washington Post, I have had to put myself deeply inside the moments of my life as Nat’s mom, and get other people to care. By using just the right words. Making every sentence count. Because the stakes are too high to fail. This is for my Nat, after all. And for struggling people like Nat. It’s on me to get people OUT OF THEIR CULTURE and open themselves up to difference.

That’s why I do it. And I know how to do it, in part because of this school.

Thank you so much.