Susan's Blog

Friday, April 24, 2015

Praising (and Loving), Not Burying

I burst into tears today as I was riding my bike — not because of the ride but because of where my mind suddenly went. I was thinking about my Uncle Alby who had just died, and then, of course, of my mom, his little sister. I call her that because around him she really became a younger version of herself, naive, innocent, waiting in joyful anticipation of what Alby would say next.

It was thinking of Mom that brought on the tears. Mom, and then Dad. The two of them have been hit very hard by a string of peer and family deaths lately. All of these people died of old age, but they were not that much older than my parents. I think Mom especially is feeling her own mortality very deeply lately because of this. Her small copper face seems a bit more closed in on itself, her eyes seem lighter brown than they used to be, and when she was here a few days ago they seemed to be looking for something. She hugged me quite a bit that day she was here to say goodbye to Alby — and I hope that for those moments she’d found a little of what she was needing. I could feel the full force of her vulnerability, lying against me, yet also, the way her arms bent around me there was also the age-old care of the mother for her child. Mom is complicated, young and old at the same time, brilliant and naive, nakedly open and yet mysterious. And if you happen to be one of the lucky ones she loves, you will always always feel that.

Dad is likely feeling the same kind of sorrowful things, but he shows it differently. He’s all silver and gold these days, his hair gleaming gray-white, his skin burnished tan from always being outdoors. He’s like a benevolent floaty cloud in a summer sky, watching over you, playfully hiding now and then with the sun. A life of hard work, muscular movement and exercise, and constant thought have polished him down to his very essence: joy.

I don’t mean for this to sound like a eulogy. But it occurred to me today that I need to say these things while they are alive.

I did not have a perfect childhood. But unlike many people, I had parents who desperately wanted and tried to be perfect. And for years and years I believed they were, even though experience told me they were not. When I finally realized they were not perfect people, and that they had actually made mistakes parenting me, I was so angry. And this was later in life, I’m ashamed to say.

Now what I know is that goodness in a person is not about perfect, it’s about being human. And they are so very human. Yet their drive to be perfect for me and my sister Laura shaped me into the same kind of person. Someone who does not question trying really really hard for those you love, someone who wants to make loved ones and others, too, really really happy. In being that way, they made me a good person. And they gave me a wonderful childhood. Not perfect, but that’s okay. Because it was wonderful. With some awful times, but still — amazing. Should I name these things? Give you a picture of what I mean?

First thing that comes to mind is a sense of wonder. The four camping trips out West, returning each time to a favorite campsite in Rocky Mountain National Park. The North Rim of the Grand Canyon “because it’s less crowded.” The smell of the wilderness that Mom wished she could “bottle.” Driving through the desert with water strapped to our car “just in case.” So much adventure. These trips gave me the feeling that I could go anywhere, do anything, that the world had endless places to discover. That you could spend hours and hours with people in one car and only get closer to them. I need to be honest, of course, and say that there were times when I’d be so angry or hurt by them that my throat would choke with rage and sorrow. But I understand it all now, and I forgive them. This is so important. To forgive and let go so you can love even better.

Second thing they gave me: humor. My Mom probably learned from her father and then Alby all about laughter and she found my father early in life — age 13, married him at 18 — because he continued the tradition of making her laugh. You have never seen high cheekbones until you’ve seen Mom laugh. Diamond bright teeth. And Dad is so funny, I don’t know where to begin. I have wanted to write about his humor for years but I just can’t yet. It’s so much a part of my own wiring that I can’t untangle it. I hope to someday. For now I will say that I hear his jokes without him even being there. My sister Laura and I are also funny because of Dad, and we both chose husbands who make us laugh, accordingly.

Third thing: activism. My parents are dedicated to helping people. They are teachers by profession. But they help so many people other than students. They have changed people’s lives just by their own honesty and hard work and no-nonsense attitude. I was miserable in my first year of college. “So transfer,” Mom said. And just like that, I learned that I never have to accept a miserable situation. And I don’t. Even if that means that I’m confronting her for something she said! And Dad, asking me one evening if a certain boyfriend was “making me happy.” And the answer, of course, was No. But Dad made me face it, and end that destructive relationship.

Fourth thing: duty. My parents always try to do the right thing. You must take care of your loved ones and friends. You must tell someone when they are not being wise or kind. Stand up for others. Stand up for yourself. Sometimes it drives me crazy, I feel like they sometimes put off happy things because there’s Something They Must Do. But that’s in me, too. I do the same thing. Everyone around them relies on them, on me.

Fifth thing: health. My parents tend to overdo their dedication to their physical fitness, but that is who they are. And they are very strong because of it. For their age, and for any age. I still do not want to try to race my Dad on a bike. Certainly not in running. Mom walks sometimes 10 miles in a day, listening to NPR or books. Always learning. Dad listens to nothing but his own thoughts and he simply becomes a part of the road he is running or riding on, his breath is the air around him,. Both of their different ways make perfect sense for who Mom and Dad are.

Sixth thing: to be learned. The constantly admonished me to read, know the classics, be conversant in current events, philosophy, literature, ethics. Both of them are always reading more than one book. Always. They feel what they read, they think think think and then they tell you all about it. And now I’m the same.

I grew up in love with Mom and Dad. They were larger than life, they were my Gods. Then they fell from grace, simply because I learned they were just people. I had to learn that no one is larger than life, no one is a God, but that this is okay, that this is right. I had to also learn that I was okay. This took so long. So much to learn again and again, as an adult, so much gray confusion, black struggle, blood red anger.

Only to find that the beautiful elements of diamond, copper, silver, and gold outlast everything else.




Thursday, April 23, 2015

Darkness is Inextricably Linked to Light

My uncle just died. My parents were up here because it was clear that his death was imminent. Their visit also coincided with my very first public bellydance performance. They went right from his deathbed to Cambridge, where the performance was being held. My mom wanted to see me dance, and had planned a while ago to be here for it, but now she felt terribly guilty to be going to this colorful, joyful event, to feel happiness and pride, in juxtaposition to what was going on with her family, at the hospice.

But my sister said, “Don’t put off a mitzvah for anything.” She was referring to a practice in Judaism, where even in the face of death you are supposed to take part in joy. For my family, this admonition always brings to mind my wedding, which took place two days after my grandfather died. I remember that time, when the whole family was coming in for the wedding, including Grandpa — my father’s father. Grandpa had been suffering from depression for some time, but seemed to have rallied for the trip. I stopped off at my aunt’s house, where he was staying, and I told him, “We can dance at my wedding!” And he said, “I won’t be dancing at the wedding.” I took this to mean he was still feeling depressed, and I let it be.

But no, Grandpa had probably known that his end was near. I was shocked by the news, and I figured, “Oh well, I guess we won’t be getting married, then.” But my parents said, “Oh, no. You should never postpone happiness.” Their gravity and certainty blew away any reservations I’d been having, and so we went forward. And so the day after my wedding I went to Grandpa’s funeral and then was whisked away to my honeymoon in Italy. Never an anniversary goes by when I don’t remember the Other event side by side with my own. All of my wedding pictures, Dad has a forked vein in his forehead even with the smile in his eyes.

Yet I do not regret what we did. I’ve come to see that this is exactly the flavor of life: sweet and salty together. The happy and sad. They complement each other. We feel happiness more when we have it to compare to pain. The sharp knife, the soft skin. The ripping childbirth, the aching joy of the baby, the full heart, the deep new fear.  We never have a moment where we are just basking, suspended in joy. For if we are aware of it, it is changed immediately by the recognition that it is finite. My children advance into the world, and we say with brightest yellow pride, “Wow, look at him go!” and then followed by the fuzzy shadow of, “I hope nothing bad happens to him.” And that brings to the ready the roaring Mother’s cry, the bellow of the jungle, the Lion ready with bloody teeth. We are all from nature, and it certainly is “red in tooth and claw.”

So I danced, in bright red, dark purple veil flying. My parents and my husband and many friends came to see me, a 52-year-old bellydancer. I discovered my bliss perhaps a little later than most bellydancers, but it wasn’t too late. While we’re living, it never is.



Tuesday, April 21, 2015

Romantic Love For An Autistic Young Man

My latest column for WBUR/NPR’s “Cognoscenti” segment is out today. This piece was inspired a few weekends ago when Ned and I observed Nat as he sat quietly on the T next to a young woman his age.

Monday, April 6, 2015

State House Story

In February of 2015 a friend called and asked me if I had any suggestions for speakers on Autism Awareness and Acceptance Day at the State House.

I had been a speaker on Autism Awareness Day back in 2006, which had been a great experience. But the most exciting Autism Awareness Day I’d ever attended by far had been the very first, when the guest speakers were a young man and his mom. This young man had a developmental disability, perhaps autism, and he had stood up at the podium with his mom, a longtime activist. He was in his early twenties. I don’t remember if he actually spoke but I do remember his stage presence, his proud posture, his adult demeanor, and I remember thinking, “Wow. How does that even happen?” I was, of course, wondering what Nat would be like when he was that age. There was a small smoldering sadness kind of behind my eyes, which back then was so familiar. In those days I was always looking at Nat with so much worry about who he would become. He was a young teen then, and had accomplished so much with his life – team sports, bar mitzvah, comfortable traveler, excellent student. But I was focused on grown-up Nat, unknown Nat. Out-in-the-world Nat. And most of the time when I thought of him it was with the sweeping protective despairing love of Mrs. Jumbo, the so-called “Mad Elephant” who was Dumbo’s mom.

But I put that pain aside and went back into my life at the time, raising my boys, writing books, and attending and speaking at events like this one. When I got the call from one of the organizers that winter day, I thought about one young man I knew — Scott Lentine, a poet, legal assistant, and self-advocate. who could speak about his life for Autism Awareness Day 2015.

As we were talking, though, the organizer made it clear that they were also looking for a speaker who had fairly severe autism – someone who represented the end of the spectrum that is rarely written about or talked about. I thought of Nat right away, and volunteered him as a speaker, with his caregiver — John — to round it out. Why couldn’t Nat do it, after all? He could answer questions as long as they were shaped around specific information. And he could type his answers. He could construct a speech about Shared Living, which was one of the topics scheduled that day.

My husband Ned, of course, was a little skeptical when I told him. This was our old familiar pattern of my big floaty dreams being met with Ned’s rock solid sense of reality. “It might be too much for him,” Ned said. “I don’t know if he’ll be able to focus.”

I would not hear this. “He’ll love it. He’s great with crowds. He’ll practice the speech. It will be just like his bar mitzvah.”

Ned would not give me the satisfaction of agreeing and getting excited about it with me. But that was allright. It was going to happen. And I knew that whatever “it” turned out to be would be okay. That Great Hall at the State House was going to be filled with friends, autism families, advocates, and legislators who knew about Nat or if not, would just love him when they saw him.

I’d come a long way since those days when he was 15. More importantly, so had Nat. The process of helping him write the speech went just the way I thought it would—a satisfying confirmation of my deep familiarity with Nat’s abilities and his favorite pastimes. Typing answers to questions was something he felt strong about, after all. I told him: “Some friends have asked if you want to talk about your life with John, for a special day in the spring, in April.”

He said, “Yes,” right away. So I told him about how he would create a speech and that by reading it to the crowd he would be helping others understand how to live in an apartment and have a job, like he did.

He eagerly sat with me, laptop open, eyes strained as if to catch the words I spoke. I asked him questions like, “Nat, where do you live?” And he would answer.

“Okay, type that,” I’d say. If he got lost I would repeat his own words, and restart him. After about a half hour we had 73 words about Nat’s experiences with Shared Living. Here is the speech:

Thank You

Living at Kelton Street. by Nat Batchelder

Brought Bag up stars to apartment at kelton street

At Kelton Street I eat Lunch go to bed sope and shawor, get ready pajamas go to bed

Jon coms, says get up

Brush teeth

Go to ASA Do meals on wheels

Back to Kelton Street. movies with jon. Put plates in dishwasher. set table. put   datergent Lindre in drire

Feel happy

love nat

Better than most speeches one hears at the State House, don’t you think?

The night before Nat’s speech I didn’t sleep very well. I knew I didn’t have any reason to be nervous, exactly. I guess it was just that I didn’t want Nat to feel uncomfortable once he got up there and actually faced all those people. I kept trying to tell myself he would be fine, he doesn’t get worked up when he’s scared or when places are noisy and crowded. The episodes he has had with acting out are always about a sudden change in routine combined with his confusion and inability to formulate questions. And without being able to question us, he becomes choked with frustration.

I rushed through getting dressed, changed my outfit many times, although I don’t know why – this was not my show, after all. But old egos die hard. I found Ned there and I found my old buddy Jeff, too, who had come there for Nat. A steady stream of fellow autism parents and professionals from over the years came up to me and wished me luck. Some had brought their children – budding self-advocates. Some were giving their own speeches. It was a warm sea of friends, buoying each other up, as we always did.

Nat was not there, but of course I kept scanning for him. I looked at my phone and there was a text from John: “It’s on Beacon Street, right?”

Ahhh! John! That same old laid back, huge self-confidence. Was he seriously not even inside the State House yet? I was back to my bouncy nervous state.

Five minutes later Nat strides in, glowing in his dove gray suit and silver striped tie. I gave him a kiss and gave John a hug. Nat was wired, but in a good way. I dug a pile of papers out of my bag: I had copied Nat’s speech to hand out to everyone so they could follow along. I guess I was obsessing about people not being able to hear him or understand his quick way of reading. My hands were shaking and I suddenly felt shy going up to people with my son’s speech. So a friend came to my rescue and had her sons take over distributing them for me. I found Nat a seat in the front row and we all settled in.

The Governor was ahead of Nat in the order of the program, and he gave a warm, sometimes funny speech, more like telling us stories about his experiences with autism families.

Then it was Nat’s turn. He seized hold of the podium and began almost immediately.

You could not hear a thing, though his lips were moving correctly over his written page. One of the speakers – an autism mom who had created her own day program and residence – got up to push the mic closer to Nat. I still could not hear him. Dammit, I thought. Here I go. “Louder!” I shouted.

Nat shouted into the mic for one phrase, then went right back to his whisper. And I sat there feeling like an idiot because I had stepped in like a pushy stage mom and interfered with this young man’s speech.

But really, what would anyone expect from me? That’s the kind of mother I am, and I am the kind of mother Nat needs.

In the end, I don’t believe Nat cared. He finished his speech, in his softest, quiet voice. But it was the voice of one of our guys, and it so roared like thunder within those marble halls.


Thursday, April 2, 2015

Nat Speaks

Today, World Autism Acceptance Day 2015, my 25 year old son Nat who has fairly severe autism spoke at the Massachusetts State House. Right after Governor Baker (scroll down for link to pic of the Gov applauding Nat!)  Here is the text of Nat’s speech, completely his own words, that he typed, and read today.

Thank You

Living at _____ Street. by Nat Batchelder

Brought Bag up stars to apartment at k street

At _____ Street I eat Lunch go to bed sope and shawor, get ready pajamas go to bed

Jon coms, says get up

Brush teeth

Go to ASA Do meals on wheels

Back to ______ Street. movies with jon. Put plates in dishwasher. set table. put datergent Lindre in drire

Feel happy

love nat

(Nat and Proud Mama)


The Governor of Massachusetts, applauding Nat at Autism Day 2015 at the State House