{"id":4018,"date":"2015-04-06T12:54:52","date_gmt":"2015-04-06T16:54:52","guid":{"rendered":"http:\/\/susansenator.com\/blog\/?p=4018"},"modified":"2015-04-06T18:48:39","modified_gmt":"2015-04-06T22:48:39","slug":"state-house-story","status":"publish","type":"post","link":"https:\/\/susansenator.com\/blog\/2015\/04\/state-house-story\/","title":{"rendered":"State House Story"},"content":{"rendered":"

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<\/a>.<\/p>\n

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\u2019d 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\u2019t remember if he actually spoke but I do remember his stage presence, his proud posture, his adult demeanor, and I remember thinking, \u201cWow. How does that even happen?\u201d 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 \u2013 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\u2019s mom.<\/p>\n

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<\/a> I knew — Scott Lentine, a poet, legal assistant, and self-advocate. who could speak about his life for Autism Awareness Day 2015.<\/p>\n

As we were talking, though, the organizer made it clear that they were also looking for a speaker who had fairly severe autism \u2013 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\u2019t 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.<\/p>\n

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\u2019s rock solid sense of reality. \u201cIt might be too much for him,\u201d Ned said. \u201cI don\u2019t know if he\u2019ll be able to focus.\u201d<\/p>\n

I would not hear this. \u201cHe\u2019ll love it. He\u2019s great with crowds. He\u2019ll practice the speech. It will be just like his bar mitzvah.\u201d<\/p>\n

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 \u201cit\u201d 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.<\/p>\n

I\u2019d 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\u2014a satisfying confirmation of my deep familiarity with Nat\u2019s abilities and his favorite pastimes. Typing answers to questions was something he felt strong about, after all. I told him: \u201cSome friends have asked if you want to talk about your life with John, for a special day in the spring, in April.\u201d<\/p>\n

He said, \u201cYes,\u201d 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.<\/p>\n

He eagerly sat with me, laptop open, eyes strained as if to catch the words I spoke. I asked him questions like, \u201cNat, where do you live?\u201d And he would answer.<\/p>\n

\u201cOkay, type that,\u201d I\u2019d 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\u2019s experiences with Shared Living. Here is the speech:<\/p>\n

Thank You<\/em><\/p>\n

Living at Kelton Street. by Nat Batchelder<\/em><\/p>\n

Brought Bag up stars to apartment at kelton street <\/em><\/p>\n

At Kelton Street I eat Lunch go to bed sope and shawor, get ready pajamas go to bed <\/em><\/p>\n

Jon coms, says get up <\/em><\/p>\n

Brush teeth <\/em><\/p>\n

Go to ASA Do meals on wheels <\/em><\/p>\n

Back to Kelton Street. movies with jon. Put plates in dishwasher. set table. put\u00a0\u00a0 datergent Lindre in drire <\/em><\/p>\n

Feel happy <\/em><\/p>\n

love nat <\/em><\/p>\n

Better than most speeches one hears at the State House, don’t you think?<\/p>\n

The night before Nat\u2019s speech I didn\u2019t sleep very well. I knew I didn\u2019t have any reason to be nervous, exactly. I guess it was just that I didn\u2019t 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\u2019t get worked up when he\u2019s 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.<\/p>\n

I rushed through getting dressed, changed my outfit many times, although I don\u2019t know why \u2013 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 \u2013 budding self-advocates. Some were giving their own speeches<\/a>. It was a warm sea of friends, buoying each other up, as we always did.<\/p>\n

Nat was not there, but of course I kept scanning for him. I looked at my phone and there was a text from John: \u201cIt\u2019s on Beacon Street, right?\u201d<\/p>\n

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.<\/p>\n

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\u2019s 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\u2019s 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.<\/p>\n

The Governor<\/a> 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.<\/p>\n

Then it was Nat\u2019s turn. He seized hold of the podium and began almost immediately.<\/p>\n

You could not hear a thing, though his lips were moving correctly over his written page. One of the speakers<\/a> \u2013 an autism mom who had created her own day program and residence \u2013 got up to push the mic closer to Nat. I still could not hear him. Dammit, I thought. Here I go. \u201cLouder!\u201d I shouted.<\/p>\n

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\u2019s speech.<\/p>\n

But really, what would anyone expect from me? That\u2019s the kind of mother I am, and I am the kind of mother Nat needs.<\/p>\n

In the end, I don\u2019t 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.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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\u2019d ever attended […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-4018","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/pSTth-12O","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/4018","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/comments?post=4018"}],"version-history":[{"count":10,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/4018\/revisions"}],"predecessor-version":[{"id":4028,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/4018\/revisions\/4028"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=4018"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=4018"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=4018"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}