Susan's Blog

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.



What a powerful and touching story. Kudos to Nat for getting up in front of so many people and representing himself.

— added by Rowena Beatty on Monday, April 6, 2015 at 5:32 pm

Go, Nat! I’ve been to many events where I couldn’t hear the speakers (including some weddings/receptions). Not everyone can project well and mics can be tricky. I wish everyone had the foresight to have printed copies 😉

— added by Jill Q. on Tuesday, April 7, 2015 at 9:39 am

I wish I could have been there. This means so much.

— added by Jude on Saturday, April 11, 2015 at 10:37 am

This is incredible Susan, both Nat’s accomplishment and your journey as well. Congrats to Nat!

— added by kim mccafferty on Tuesday, April 14, 2015 at 1:24 pm

Well, congrats to Nat. As the mother of a son with autism, I agree that the only ones you seem to hear or read about are the ones successfully holding down jobs and out in the world. My son will probably never do those things; he’s too disabled. He will have his own success story I am sure, just not like the ones you see on the evening news.

— added by Sharon Jones on Sunday, April 19, 2015 at 12:58 pm

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