Autism awareness and the Smockity flap

3/31, Updated to add: Smockity has posted an apology to anyone who was unintentionally hurt by her original post.

It seems that while I have been blissfully posting about my son’s wonderful classroom, much of the rest of the autism blogosphere has been on fire in response to a post written by a blogger called Smockity, who writes at Smockity Frocks.

First, let me offer this caveat: I know next to nothing about Smockity. I have read just one of her posts. My understanding is that she has no connection to autism and that, in fact, she had no idea that she was writing about an autistic child when she wrote a blog post called "In Which Smockity Considers Jabbing A Ball Point Pen Into Her Eye," which has since been removed from her blog, but is cached here.

In brief: Smockity's post was, I think, intended to be a humorous account of a visit to the library, during which she and her children encountered a grandmother with a child who bounced on her toes, flapped her hands, and used perseverative language. Most of us in the autism community recognized this child - and this grandmother - instantly. Smockity did not. Her post unfolded as a diatribe against the sort of parenting (or grandparenting) that yields rude, self-indulgent, ill-mannered children.

Much has been written about the post, the response, and Smockity's response to the response. Both Squidalicious and Liz Ditz have posted links to responses that reflect outrage, disbelief, and the feeling that I had when I read Smockity's post - a sinking recognition that perhaps all those times when Bud has struggled in public and I've left a place red-faced and anguished, afraid I'd been judged or mocked or disdained by the people around us, I'd been right. As I read, I remembered why I stay home so often, skipping the trips to the places I want or need to go, simply to avoid the potential of having to manage a difficult situation under public scrutiny.

But, again, I don't know Smockity. I don't know her motivation for writing the post and I don't know how she feels right now. She has replaced her original post with a new message, in which she says that she won't respond to attacks on Twitter, e-mail or blogs. Let me be clear - I don't intend to attack Smockity with this response. But I also try to put myself in her shoes.

I'm certain that there have been times in my life when I've said something that I thought was humorous, but which actually offended someone. There are times when someone has called me out for being thoughtless or insensitive and I have reacted defensively. There have been times when I should have said I was sorry, but - because of my defensiveness, or my pride, or my embarrassment - I didn't. But I would like to believe that, in each of those cases, though I was unable to step up and own my mistakes, I spent countless hours in private reviewing them, imagining do-overs, and preparing myself to act differently in the future.

I'd like to believe that Smockity is doing that now. If I were her, even if I said I wasn't going to read the blog posts that were written about me, I know that I wouldn't be able to stay away. I'd read them privately, and I'd seethe, or I'd cry, or I'd scream, or I'd feel really, really bad. So, I'm writing this post in the hope that Smockity, or others who saw themselves in her words, will read it and think.

My full-time job is in college student affairs, and there are two things we talk about a lot in my department: utilizing teachable moments and providing opportunities for student learning. We recognize that students may not take advantage of the opportunities we provide, but we provide them all the same. We look for a moment to present itself, then we try to shape the experience or the conversation in that moment to meet a student where she is and to help her to consider a picture that is just a bit bigger.

This feels like a teachable moment, and I'd like to provide an opportunity for some learning.

You see, I saw myself in the grandmother in Smockity's post, as she stood with her granddaughter, waiting for Smockity's children to finish on the computer. Smockity writes,

"The girl never left her position at the computers and continued bouncing,
flapping, and proclaiming, “I’m waiting patiently! It’s almost my turn! I’m
being patient, Grandma!” to which Grandma would reply, “That’s right,
Preciousdarling Angelface, You are being very patient. Just one more minute.”

This was repeated… repeatedly.

Do you ever get the distinct feeling that, although a speaker is not addressing
you directly, the message that is being spoken is intended just for you?"

Of course, I can't know what the grandmother's intentions were, but had I been in her place, I would have done the same thing. Through my inflection, my repetition, and my use of language that seemed both intentional and unusual, I would have been trying to send a message to Smockity. My message would have been something like this:

I know that your children were at the computers first, and I know that I have no right to ask them to step aside and make room for my child, but here's the thing: you have NO IDEA how important this activity is to him, nor how hard he is working at holding it together right now. Your children look delightful and I'm sure they enjoy playing on the computer, but I have a hunch that this might be one of many things that they enjoy. I imagine that your children play with friends, that they enjoy board games, that they have a variety of interests, and that if this computer were not available to them, they would be able to think of ten other things they'd enjoy doing just as much. But, I'm telling you, that is not the case for my child. My child has been talking about THIS game on THIS computer at THIS library all week. And by that, I don't mean once a day all week. I mean from the moment he has woken up until the moment he has fallen asleep, he has talked about nothing but THIS game on THIS computer at THIS library. Our day, our week - it seems, even, our life - has been built around this moment, and I have to tell you: if this computer is not available to him, he will not be able to think of ANY other thing he would like to do, because right now, at this stage in his life, he does not play with friends, he does not enjoy board games, he does not have ANY other interest beyond THIS game on THIS computer at THIS library. And I know that's not your fault or your problem, and I know that your children have every right to keep on playing until they're finished, but I'm BEGGING you, PLEASE - can you help me out here? Can you intervene? Can you suggest that maybe they could finish up in five minutes, ten minutes, SOME predictable time frame so that I'll know how long I have to manage this situation and help this child hold himself together? Please?

That would have been my message. But my WORDS would have sounded something like this: “That’s right, Preciousdarling Angelface, You are being very patient. Just one more minute.” Repeatedly.

And the flapping. Let me tell you about the flapping. Bud's flapping provokes two simultaneous, equally strong reactions in me. The first is trepidation, because Bud's flapping in public instantly presents him as "other" to the strangers around us, as this child's did with Smockity. But the second is delight, because when Bud flaps, I know that he is experiencing genuine excitement and joy. Bud's flapping is a physiological response to emotion, and he flaps because his hair-dryer brain processes excitement and joy differently from our toaster brains. Bud flaps with excitement the same way that people laugh when something is funny - automatically, immediately, and reactively. Bud could no more keep from flapping when he's happy than I could stop my stomach from growling when I'm hungry.

That's what I'd say to Smockity, if I had an opportunity to say something to Smockity. But she may not come over here. She may let the opportunity pass.

So, here's another idea. This Friday, April 2, is World Autism Awareness Day. Autism mom and blogger Jean "Stimey" Winegardner has written a measured, thoughtful response for The Washington Times, which is directed to people who don't have direct experience with autism. Let's pass it on to the people we know, and ask them to pass it on to the people they know who don't know anyone with autism, but who may encounter them in the supermarket, on the playground, or in the library. Let's give people an opportunity to think about their reactions before they are forced to react.

World Autism Awareness Day. It's a teachable moment. Let's provide an opportunity for a little learning.

A toast to inclusion: Autism education in the classroom

I've been asked to create a single link to the posts that describe my visit to Bud's classroom, so that it will be easier for people to pass it on to others. I'm flattered by the request and happy to oblige. Here it is.

First, it's important to recognize the incredible work that Ms. Walker, the classroom teacher, and Mrs. Nee, the classroom paraprofessional, have done this year. As I wrote to Ms. Walker this week, "Thank you for the credit you are so eager to hand over to me, but REALLY - this is not the result of one hour-long conversation. This is the result of seven months full of planting seeds and seizing teachable moments and providing opportunities and recognizing that teaching for life is more important than teaching to the test."

They started their work at the very beginning of the school year, celebrating Bud's tenth birthday in an extraordinary way.

Their work continued throughout the year, and they explained their approach to me in a conference last month. At that time, they asked if I'd be willing to meet with Bud's classmates and gave me a stack of questions that the children had submitted for me.

My meeting with the class was so extraordinary that it was hard to find the words to describe it. So, instead, I decided to recount the experience, one question at a time. Those questions were:

What is autism?

Why does Bud repeat things from TV?

Why does Bud say the same things over and over?

Why does Bud run in circles? Why does he need movement breaks?

Why do noises bother Bud?

Why does Bud miss his mom so much? Why does he get really attached to people and want to be with them all the time?

How can I be a better friend to Bud? How can I be a person Bud would like to hang out with?

Will Bud always be this way?

Does Bud know he's different?

How can I help?

Later that afternoon, Ms. Walker asked the children to reflect on the conversation. Their responses were extraordinary.

The magic is still unfolding in the classroom, and I imagine there will be further posts in the coming weeks and months. I will add links to them on this page. This link: http://bit.ly/9FLDc3 will lead people here. Thanks for sharing it.

4/2/10: Edited to add this follow up on the class response to World Autism Awareness Day.

Wrapping up and moving on

I wrapped up my presentation by thanking the kids for inviting me in to talk with them, and I asked if they had any questions.

"Is 'The Upside Down Show' a real show?" Noelle asked.

"It sure is," I said. "It's on Nick Jr., and Bud loves it."

Laurie raised her hand, "What show is it from when Bud points his finger in the Name Cup at morning meeting and says 'Mrs. Nee! Mrs. Nee!'" The children laughed with recognition.

"Hmm," I said. "I'm not sure..."

"Yes," said Mrs. Nee. "And then he says 'Closer! Closer! Closer!'"

"Ooooh!" I said. "I think that's from Oobi. That's another Nick Jr. show. Oobi and his friends are hands." I made my hands talk to each other. "You might see him doing this with his hands sometimes. He's doing Oobi."

"What was your most memorable moment with Bud?" Noelle asked.

"Wow, that's a tough one," I said. "All of my moments with Bud are memorable. He's my favorite person in the world. I don't think I could choose one."

"What about your most hilarious moment?" asked Max.

"I'd like to hear about your hilarious moments with Bud!" I said.

Nathan raised his hand. "Does Bud ever wish he had a brother or sister?"

"You know," I said, "I'm not sure about that. It's not something he talks about. He doesn't like babies, because they're so loud, so I think he'd move out if I brought a baby home." The kids laughed. "But he would like a dog."

I heard a reaction on the other side of the circle and looked over to see shocked expressions of the faces of some girls who have known Bud for several years.

"I KNOW!" I said. "He used to be really afraid of dogs. But now he likes dogs so much, he'll ask people he doesn't know if he can pet their dogs." There were soft "wow"s around the room, and then Sean, who'd just returned from recess, raised his hand.

"How did that happen?" he asked. "What made him stop being afraid of dogs?"

"I'm not exactly sure," I told him. "I think that being introduced to dogs little by little over a long time helped him get used to them. All of those little changes turned into a big change."

The girls nodded in agreement and offered: "Yes!" and "That's a REALLY big change!"

And then the kids, who had paid such careful attention for so long, headed off on a tangent about their own dogs and their thought on which other animals Bud might enjoy.

"He'd like my dog. He's really big, but he's quiet."

"Maybe he'd like a turtle."

"He says he wants a giraffe," Molly told me.

"Yes," I said. "He wants an elephant, too."

And then it was time for the kids to line up and go to chorus. We said our goodbyes, and off they went.

Ms. Walters, Mrs. Nee, and I had talked through the best way to approach the rest of the day with Bud. I was afraid that someone would mention to him that I'd been there - and if I'd been there, but not seen him, I knew that would feel like betrayal to Bud. So, Mrs. Nee went to retrieve Bud from the Special Ed office, and told him that I'd come to pick him up early. Bud was delighted, and rushed into the classroom and into my arms. We used the "found time" to stop by the eye doctor's office, to look around and meet the doctor so that it would be familiar when he went for his scheduled eye exam. It was a good use of time and, for Bud, felt like a legitimate reason for being picked up early.

Bud's quick return hadn't given the teachers and me much time to debrief, beyond a showering of "You're amazing!"; "No, YOU'RE amazing!," so we spent the evening sending e-mails back and forth to celebrate the magic we'd just witnessed.

In one e-mail, Ms. Walker wrote:

At the end of the day I asked the kids to share one new/neat/cool thing they learned from our talk today...In a perfect world, I wish you could have been there to hear their voices and watch them immersed in their own "think time" over their experience today and the way got excited over each other's comments.

Kallyn - I really liked knowing Bud knows he is different but doesn't care, but I think it still must be hard to be Bud sometimes.

Nathan - I thought it was so cool that by changing just one small thing it can help Bud so much - like by making my sentences shorter and giving him time to think. It seems small to us, but in can make a HUGE difference.

Simon -Being different is OK.

Lilly - The echo way he learned to talk. "You want juice?" And how he was so computer smart by the time he was 2.

Noelle - Connections to people who speak the same language.

Max - I never knew there were so many types of differences within autism.

Travis - I'm just really happy to know that Bud is happy being himself. I think about that a lot. Oh! and toasters and hair dryers - how cool was THAT?

Brandon - I learned some of the ways that Bud learns, and that the big thing is he just needs more time to get used to things.

Damian - It's cool that he doesn't care what people think.

The Amazing Platypus - This has me questioning what I think normal really is - after this I feel like Bud fits normal and that I'm the one who is different.

Laurie - That if you don't get an answer right away it's ok - he's just working on it and will get there.

Kelly -He's happy being him.

Kayleigh - Maybe we aren't so different after all - that what makes us different and happy makes him different and happy, too.

Molly - I get it now that when he repeats other people's words it's to help him share his emotions.

Carla - That he has an amazing memory and great hearing.

Dan - I think it can help me understand more about the way he talks.

Sean - That he isn't afraid of dogs any more.

Jennifer - The way he thinks about things has really changed - like about dogs and wacky hair.

Zoe - It's cool about how his body sends him signals for movement breaks.

Cathryn - I liked learning about how Bud started talking.

Nora - I feel like I get why he gets attached to people now - the whole Japanese thing. I just loved how she made it so we could understand.

It was a big day for all of us.

But the class has continued to reflect, and to talk, and to work on turning their thinking into action.

More on that next time.

With a little help from my friends

"The last question that many of you asked," I said, "was my favorite question: How can I help?

"I’ve already given you some ideas – talking slowly, giving Bud lots of time to answer questions, not taking it personally if he doesn’t want to do something. As we said, it’s hard for him to branch out and try new things, but you can try to take an interest in the things he likes. Ask him about them. When he’s using a script, ask him what TV show it’s from. Ask him who his favorite characters are. If you can climb into HIS world, he will be more comfortable about talking with you.

But keep telling him about your interests, too, and helping him to learn about new things. The more he sees and hears about new things, the more comfortable he'll get with them. Help him practice the things that his hair-dryer brain makes hard for him. The more practice he has, the better he'll get at them."

"Think about morning meeting," Ms. Walker offered. "Remember what a tough time Bud had at morning meeting at the beginning of the year?"

The children nodded and agreed that he'd had a difficult time with it.

"And now," said Ms. Walker, "who runs morning meeting?"

"Bud does!" they answered.

"So, you've already seen it happen," I said, smiling. "And you already do a lot of things to help Bud.

"But the most IMPORTANT thing you can do to help Bud is to make sure that your school is always a place where it's okay to be different.

"And the best way you can do that is to let your own differences show. Be proud of who you are. If you like something that other people don't like, talk about why you like it. If you like wearing something that's different from what other people wear, then wear it with a smile. Listen to the music you like. Follow the interests you have. Talk about the things you're good at and talk about the things that are hard for you.

"And listen to each other. Learn from each other. If someone likes something you don't like or does something that you don't understand, ask them about it and then really listen to their answer. Let people know that it's okay to be who they are, whoever they are.

"You've already created that kind of community here in Ms. Walker's class. Take it with you to fifth grade, too. Take it with you to middle school, take it with you to high school, and take it with you for the rest of your life. It is the best thing you can to to really help Bud - and to really help each other, too."


Tomorrow: Wrapping up and reflecting

Different like me

"The next question that some of you asked," I said, fast-tracking toward the finish line, "was 'Does Bud know he's different?'

"And the answer is: I think he does, but it doesn't bother him. Bud loves being Bud. He feels great about himself. And he is one of the happiest people I know.

"Sometimes I forget that. Sometimes my toaster brain gets in the way and starts thinking that it's important to be like everybody else. So, sometimes I worry about him. But let me tell you a story.

"One day, not too long ago, Bud was watching Teletubbies – because, remember, things that are familiar to him are more comfortable than things that are new to him, so he still loves the things he loved when he was little. I started wondering if he knew that most kids his age don’t watch Teletubbies.

“So, I said to him 'You really like Teletubbies, don’t you, Bud?' and he answered 'Yes!'

“Then I asked him, 'Do other kids at school like Teletubbies?' He laughed out loud and looked at me like I was crazy, and said 'Nooooo!'

"So, I asked him, 'What do the other kids at school like?'

"And he said: 'They like me.'"

I looked around at their faces, some of them smiling, others deep in thought.

"I think that was Bud's way of reminding me that he doesn't need to be like everybody else. That was his way of saying, 'I'm doing just fine, Mom - just the way I am. So please - Back. Off.'"

The class erupted in laughter - its tone a blend of pride and admiration.

Bud the underdog.

Bud the rebel.

Bud the 'tween hero.

"So, you see?" I said. "It's just like I told you before - you already ARE good friends to Bud, just by sticking with him and letting him know that who he is, is just fine with you."

Noelle raised her hand, with a far-away look in her eyes.

"I was just wondering," she said. "Do you think Bud knows he's different?"

"I think he does," I answered, "but I don't think it bothers him." Then, silently, I added, And thanks for making that point so beautifully, Noelle. We are all a little different - just each in our own way.

Tomorrow: Question #10 - How can I help?

Where are we headed?

I realized that we were nearing the end of the time we'd allotted for the classroom presentation. The boys who'd gone to recess had returned in the middle of the last question, and I knew I'd need to wrap up soon. But there were a few issues I wanted to address before I left, so I kept my responses brief as I headed toward the end.

"The next question you asked," I said, "was, 'Will Bud always be this way?'

"And the answer is, yes and no. Bud will always have autism, but he won't always be exactly the same way he is now – just like you won't always be exactly the same way you are now. You will all grow and change for the rest of your lives.

"Bud's hair-dryer brain will always work differently from your toaster brains, but he will learn how to be an autistic person in a mostly non-autistic world more and more as he gets older. Just like you, he'll get better at the things he's already good at, and he'll get better at the things he's not good at. He'll learn lots of new things, too. He'll keep finding new and better ways to make toast with his hair dryer.

"There are lots of adults with autism who are doing important things in the world. There is a woman named Temple Grandin who has autism, and she discovered that because of the way her brain works, she is better at designing systems for cattle farms than people who are not autistic. She has been very successful in her work. She is a college professor now, teaching other people about working with animals, and she has also written many books about autism. Just like Temple Grandin, Bud will always be autistic, but he will also have many, many opportunities to be anything he wants to be."


Up next: Question #9 - Does Bud know he's different?

Friendly talk

I looked at the next question in my notes, then at the eager faces of Bud's classmates, and I smiled.

"The next questions you asked," I said, "were 'How can I be a better friend to Bud?' and 'How can I be a person Bud would like to hang out with?'

"First of all, I want to tell you that you already ARE good friends to Bud. You accept him just the way he is, and you let him know that he is an important person in this class. You are very good friends.

"But there are some things you can do to make it a little bit easier for Bud at school. One thing you can do is to try not to talk too fast when you talk to him. Think about how you talk to one of your toaster-brained friends. You probably
sayalotofwordsandyoumovequicklyfromtopictotopicandohiloveyournewhaircutanddidyouseethattvshowlastnightandourmathhomeworkwasreallyhard. Right?"

"Right," they agreed, laughing.

"But to Bud, that all sounds like Japanese. It's easier for Bud to talk with you when you speak a little more slowly and you don't use as many words. You don't want to talk to him like he's a little kid, of course, but sometimes, it's just easier if you say a few words and give his hair-dryer brain a little time to think about them before you say some more.

"It can also take extra time for Bud to answer questions, because his hair-dryer brain has to work harder than your toaster brain to recognize that you're asking a question, figure out what kind of answer you're looking for, put the answer into words, and say them out loud. So, when you ask him a question, give him plenty of time to answer. Try to wait three times longer for Bud than you would with one of your toaster-brained friends. With a toaster-brained friend, that would feel like a long time, and you would probably ask the question again. But with Bud, you just need to stay quiet and keep listening - and most of the time, you will find that he'll answer."

The children nodded, obviously taking mental notes.

"Sometimes it can be easier for Bud to have a conversation with you when you ask him about things that you know he's interested in. You can ask him about the scripts he's using or about the music he likes. When he's talking about things he knows well, he doesn't have to work as hard to find the right words to use.

"But keep talking to him about the things that interest you, too. He might not seem to be interested at first, but remember that we said that taking an interest in new things is one of the things that's really, really hard for his hair-dryer brain. Sometimes he just needs to hear about things a little bit at a time to start to get comfortable with them. And sometimes, he ends up finding out that he really does like something new.

"A couple of years ago, Wacky Hair Day was scary for Bud. Nobody looked the way they were supposed to look and he didn't know what to expect. But, over time, he started to get used to the idea, and now he loves Wacky Hair Day. This morning when I dropped him off, he told me he was going to laugh all day."

His friends laughed, too.


Coming up: Question #8 - Will Bud always be this way?

Konnichiwa

"The next question that some of you asked," I said, "was about why Bud misses me so much when he's at school. And some of you asked why he gets so attached to some adults at school and always wants to be with them.

"Remember how I said that two of the things that Bud's hair-dryer brain has trouble with are using language and being social with people? Well, those two differences can make places like school really hard for Bud, because in school, most toaster-brain kids spend LOTS and LOTS of time talking with people and being with their friends. Bud is not always sure how to do those things - they're things that feel like making toast with a hair-dryer - and that can make school a hard place to be."

The kids nodded, and I continued.

"Imagine what it would feel like," I said, "if one day you came to school, and suddenly everything was happening in a different language. Everybody was speaking French."

I looked up and caught the eye of The Amazing Platypus, whose face brightened as he raised his hand - which reminded me that The Amazing Platypus comes from a bilingual family and speaks fluent French.

"No, wait," I said to The Amazing Platypus. "Not French. Everyone was speaking Japanese." The Amazing Platypus' face fell. I glanced around the room to make sure there were no other suddenly brightening faces. There weren't.

"Yes, everyone was speaking Japanese. Your teachers taught all of your lessons in Japanese. All of the other kids were speaking Japanese. You couldn't understand what anyone was saying, and they couldn't understand you. The kids were playing Japanese games that you'd never played before. Everybody was really nice to you and they invited you to play, but you didn't know how to play the games and it was hard to learn because they were explaining the rules to you in Japanese. You could kind of tell what was going on , but you also knew you were missing a lot of things. And you knew you had to work a whole lot harder than everybody else just to get a little bit done – because you didn’t speak Japanese."

The children voiced a range of reactions, from mild amusement to abject horror.

"Then imagine that someone showed up at school who spoke BOTH Japanese AND English. They understood you, they could help other people understand you, and they could help you understand other people."

"I would be so RELIEVED!" Zoe said, her voice filled with genuine emotion.

"I bet you would," I said. "How about the rest of you? Would you feel relieved, too?"

They all agreed that they'd be delighted to have an interpreter arrive.

"And then," I said, "how would you feel if that person had to leave, and you were all alone with people speaking Japanese again?"

"Oh no," came the chorus of responses. "That would be terrible!"

"That’s how Bud feels every day when he has to say goodbye to me."

Their faces registered sudden understanding.

"Bud knows that I understand him. I know his scripts and I know what they mean. I can guess what will be difficult for him, and I can find ways to make them easier. And when I leave him at the door every morning, he feels like I'm leaving him in a school full of people who are speaking Japanese.

"So, he tries to find other people who can fill in for me when I'm gone - people who can help him understand and be understood by all of you Japanese-speaking toaster-brain kids. And when he finds someone who can help him – someone like Mrs. Nee – he gets really attached to them and he wants to be with them as much as possible."


Next: Question #7 - How can I be a better friend to Bud? How can I be a person Bud would like to hang out with?

That's not what I hear

"So, okay," I said, moving on to the next topic. "'Why do noises bother Bud?' Well, we said that our brains control all of our senses, and that means that sometimes Bud's hair-dryer-brain senses are different from our toaster-brain senses.

"Remember when we talked about things that Bud is really good at? We said he has great hearing. We said that sometimes his hearing is even better than ours."

The children nodded.

"Well, sometimes that great hearing doesn't feel so great to him. Because he hears everything so well, sometimes the things that are just background noise to the rest of us are really distracting to him.

"Imagine if you were sitting at your desk working on a math problem, and people were having a quiet conversation over there in the corner. It might be a little distracting, but you could probably tune it out and do your math. But imagine if, because of the way your brain was wired, that quiet conversation sounded like someone was shouting in your ear. Would you still be able to concentrate on your math?"

They shook their heads.

"No you probably wouldn't be able to concentrate very well. And that’s how it can feel for Bud. With his great hair-dryer brain hearing, he hears EVERYTHING that’s going on, very clearly, and all at the same time – from people talking in the corner, to the sound of the light buzzing, to the sound of a car driving by outside, to the noises from other classrooms, to the sound of someone next to him tapping a pencil on the desk. He hears it all, which makes it really hard for him to focus on his work. So what do you think he uses to try to block out some of those noises?"

"His earplugs," Molly offered.

"Or his headphones," Keelin added.

"Or his fingers," said Ms. Walker, putting her fingers in her ears.

"Or, if his hands are busy," I said, "then, his shoulders." I cocked my head to the side and covered one ear with my shoulder, striking what I knew was a classic Bud pose. "Have you seen him do that?"

They agreed that they had, and then offered their own experiences with distractibility, especially, they reported, given how NOISY some nearby classrooms could be. Not surprisingly, I found that attention and focus were issues that were not unique to Bud.

"So," I said, trying to rein in the wandering minds and bring back a little focus, "having his earplugs really helps Bud to have the quiet he needs to do work. But there are some noises that REALLY bother Bud. Do you know what any of those noises are?"

They knew, and they brainstormed the list quickly:

"He doesn't like 'BOO!'"

"Fire alarms."

"He didn't like the assembly where they were making banging noises."

"He doesn't like thunderstorms."

"That's exactly right," I said. "He doesn't like loud noises that happen all of a sudden. And the reason he doesn't like them is that his brain reacts differently to them than your brain probably does.

"Imagine if you were in a haunted house and all of a sudden somebody jumped out and scared you. What would happen?"

The children all started talking at once.

"That's right," I said. "You would scream, you would jump, your heart would beat fast. And that would all happen because your brain told your body to react that way. You wouldn't stop and think to yourself, 'Hmmm... somebody has just jumped out at me when I wasn't expecting it. I think I'll scream and try to run away.'"

The children laughed.

"If somebody suddenly jumped out at you, your toaster brain would just automatically send a “DANGER” warning to your body, and your body would react instantly. But Bud’s hair dyer brain sometimes sends those “DANGER” warnings to his body when things aren’t really dangerous. So, when there are loud noises that he’s not expecting – babies crying, dogs barking, thunder, the fire alarm – his brain sends a “DANGER” warning to his body, and his body panics just the way yours would if somebody jumped out at you in a haunted house.

"Sometimes you might see Bud covering his ears even when there doesn’t seem to be a lot of noise going on. Have you noticed that?"

They said that they had.

"You might especially see it when he’s going into a new place, or when he's in a big crowd of people, or when he’s doing something new or something that's not part of his regular routine.

"Here's a question for you: Have you ever watched a scary movie?" I asked.

"YES!" they replied.

"And have you ever gotten to a part in the movie when you thought something scary might happen, but you weren’t sure? You wanted to keep watching the movie, but you didn’t want to be surprised and have your brain send that “DANGER” warning to your body?"

"YES!" they replied, laughing.

"So what did you do?" I asked.

"I kind of covered my eyes," said Kelly. I looked around and saw that, throughout the room, children had their hands over their eyes, but were peeking out between their fingers. I put my hands over my eyes and peeked out at them.

"Of course!" I said, still peeking through my fingers. "You kind of cover your eyes, so you can still see what's going on. But if something scary happens, you know you'll be able to coverthemreallyquick!" I slapped my hands over my eyes, and the children laughed again.

"That’s what Bud is doing when he puts his fingers in his ears, or when he covers one ear, in a new situation. He’s not sure what to expect in that new situation or with those new people, and he's not sure if something is going to happen that will give his body that “DANGER” warning. So he gets himself ready to block his ears quickly, just in case."

I heard soft "ooooh"s and saw nodding throughout the room.


Coming up next: Question #6 - Why does Bud miss his mom so much? Why does he get really attached to people and want to be with them all the time?

Shake your sillies out

Once I'd wrapped up the "language" portion of the presentation, it was time to address some of the questions that Bud's classmates had about his sensory issues.

"Okay," I said. "Next question. Some of you asked 'Why does Bud run in circles?' or 'Why does he need to take movement breaks?' This is the way I think about the answer to those questions.

"Remember how we said that our brains control everything our body does? Well, our brains also control our senses. Can anyone tell me what the five senses are?"

The child directly across the room from me, who asked to be identified as "The Amazing Platypus" if I wrote about him on the blog, raised his hand and I called on him.

"Okay," he said, "there's hearing, and seeing, and feeling.... and, um... tasting, and.... wait, how many was that?"

"That was four," Ms. Walker answered.

"And, um," continued The Amazing Platypus. "Wait, which ones did I say?"

"You missed smell," his classmates reminded.

"Yeah!" he responded. "And smelling!"

"That's right," I said. "Sight, sound, taste, touch, and smell. Our brains control all of those things, and so sometimes, Bud's hair dryer brain experiences those things a little differently than our toaster brains.

"So, here's a question: Did you ever sit for a long time in the same position, and then when you stood up again your foot felt kind of funny?"

"YES!" came the cries and giggles from around the room.

"It gets tingly," said Nathan, "but it doesn't really hurt."

"Sometimes it does," said Brandon. "Sometimes it feels like a porcupine." The other kids chimed in with their experiences of limbs that had fallen asleep.

"That's right," I said. "It's all pins-and-needles, right? So, what do you do when that happens? Show me what you do when your foot feels all tingly."

The kids started shaking their feet and tapping and stomping on the floor, and I shook, tapped and stomped along with them. "And then," I said, speaking up over the stomping, "what if the tingling gets worse? What if your whole LEG gets tingly?" They shook and stomped faster and harder.

"And THEN," I said, even louder, "what if your whole BODY feels all pins-and-needles?" They laughed as I stood up and shook all over, trying to work out my imaginary pins and needles. "And THEN," I said, still stomping and shaking and wiggling, "what if somebody came along and asked you to do MATH?"

The class erupted in laughter, and I sat back down.

"I think that's how it feels for Bud when he has to sit in the same place for a long time," I said. "So, when that happens, what do you think he needs to do?"

"Take a movement break!" they answered.

"That's right," I said. "He needs to get up and move or run around in circles for a while until his body feels normal again, and then he can sit down and do his work."


Coming up: Question #5 - Why do noises bother Bud?

Sing out loud, sing out strong

Before I continue telling you about the class presentation, I just want to thank you for the response that these posts are getting. I'm a bit overwhelmed, but I'm also delighted that so many of you are finding them helpful.

And now, back to the classroom, where I was talking to Bud's classmates about the way he talks.

"Some of you asked why Bud sometimes says the same things over and over and over. Have the rest of you noticed that he does that?" I asked. They all responded: yes, that is something they'd noticed.

"Okay," I said. "Now, how many of you have ever gotten a song stuck in your head?"

Every hand went up, as the students laughed with recognition.

"Have you ever had a line or two from a song stuck in your head? The same lines just keep playing in your head over and over?"

They laughed more and raised their hands higher.

"So, what happens when you have a song stuck in your head? What do you do?"

"I sing it out loud," said Kayleigh.

"Me too!" her classmates echoed.

"Me, too," I said. "And sometimes I just keep singing the same lines over and over."

"Sometimes I don't even know I'm doing it until my mom tells me to stop singing," added Kelly. And the students echoed their own experiences and their propensity to sing absentmindedly.

"That happens to Bud, too," I said. "Only for Bud, the scripts he learns from TV shows are as catchy as songs. If you listen to him when he repeats scripts, you'll notice that he says the words exactly the same way as the characters. The scripts are lyrical to him. And sometimes, those lyrics get stuck in his head, and he says them out loud."

"When I get a song stuck in my head," said Nathan, "I just try to concentrate on something really hard, like a math problem or something, to try to get the song out of my head."

"That's great," I said. "When I get a song stuck in my head, it's really hard for me to think about something like a math problem, because the song keeps getting in the way."

The students murmured with further recognition, sharing their own experience with song lyrics and distractibility.

"When I have a song in my head," said Kelly, "I'll start writing and I'll write down the words to the song."

"That's another strategy to get the song out of your head," I said.

"I think what Kelly means," Ms. Walker offered, "is that she starts writing the words to the song instead of the thing she's trying to write, without realizing that she's doing it." Kelly nodded enthusiastically.

"Oh!" I said. "Yes. When a song is stuck in our heads, we have to try to concentrate on two things at once. Sometimes the math problem gets our attention, and sometimes the song does. And remember Bud's great memory? He has a LOT of songs and a LOT of scripts in his head, that are trying to get his attention.

"Here's another question: how many of you have a favorite song?"

Hands shot up quickly.

"Does it make you feel good to sing your favorite song?"

They nodded and agreed that yes, in fact, it did make them feel good to sing their favorite songs.

"It makes Bud feel good, too. Sometimes, he just says his scripts out loud because it makes him feel good."


Tomorrow: Question #4 - Why does Bud run in circles? Why does he need movement breaks?

Meanings, feelings, and wacky hair

It occurs to me that I left out a critical piece of information that you'll need if you want to have an accurate mental picture of the circle of children and teachers I faced in Bud's classroom last week. You see, I forgot to mention that, quite by coincidence, I was meeting with the class on the school's annual Wacky Hair Day.

Bud came to school for Wacky Hair Day wearing the backwards-cap-with-sewn-in-wig that we'd made last Halloween for his Dierks Bentley costume. (Did I mention that Bud was Dierks for Halloween?) He was greeted at the door by Mrs. Nee, in a deep purple wig ("Your favorite color, Bud!"), and Lilly, her hair splayed from the top of her head and sprayed with red coloring and glitter.

So, on this day, as I sat with Bud's class to talk about the very weighty issue of autism, I'd look up and see the supportive face of Mrs. Nee, looking like a Doodlebop, the affirming nods of Ms. Walker, in a 1976 hairstyle that would have made Farrah Fawcett proud, and a circle full of children whose hair was sticking up, or green, or fluffy, or rainbowed, or pointy, or even - as Kayleigh's was - adorned with crayons attached by microscopic elastic bands. There were even a few children who didn't have wacky hair, making their normal appearances seem just a little bit out of place.

Could there have been a more perfect environment in which to talk about my child's differences?

And so, my foundational analogy successfully delivered, I began addressing some of the common questions that the children had asked about Bud's behavior.

The first: Why does Bud repeat things from TV?

"Remember how I told you that language is one of the things that's difficult for people with autism?" I asked the wacky-haired, toaster-brained group, who nodded enthusiastically. "Well, that has been true for Bud ever since he was really little. He learned to talk in a very different way from most people.

"Most people learn to talk by learning one word at a time - like, first they say “Mama,” and then they say “juice.” And then, when they get a little bit older, they start to put words together and they say things like “Juice, Mama?” For most of us, our brains automatically learn to talk that way.

"But Bud didn’t learn to talk that way. When he was really little, around the time that most of you were saying "Juice, Mama?," Bud didn't talk at all. When he wanted juice, he just walked over to me and handed me his cup.

"And then, as he got older and he started to use words, he didn't use one word at a time. He used his great memory to learn whole sentences that he would repeat back. So I would ask “Do you want some juice?” and Bud would reply “Do you want some juice?” And his brain learned that the words you say when you want juice are "Do you want some juice?"

"So, later, when he wanted juice, he would just walk up to me, hand me his cup, and say “Do you want some juice?” And I would know what he wanted. This way of talking is called echolalia. It’s similar to the word 'echo' – hearing the same thing back after you say it."

I heard some soft wows and ohs around the room. I think I heard a few light bulbs click on.

"Now, remember how we said that one of the things that Bud's brain is REALLY good at remembering things? Remember how I said he can remember whole TV shows after he’s only seen them a couple of times? That was true even when he was really little. So, once Bud learned that saying things like "Do you want some juice?" could actually get him some juice, he started exploring the other chunks of language that he knew, to see how he might be able to use that, too.

"In other words, when he wanted to say something, it was really hard for him to try to put words together to make sentences, but it was very easy for him to think of scripts from TV shows that were about the things he wanted to talk about.

"As Bud got older, he learned to swap out words from scripts – he'd take out the words that didn’t fit, and put in words that fit better. And as he got even older, he started learning how to put sentences together the same way that you do - he started learning how to make language toast with his hair dryer brain.

"Now, Bud can do both kinds of talking – putting his own sentences together and using scripts. But because of the way his brain works, it is still easier for him to use scripts.

"It’s especially easier for Bud to use scripts when he is feeling very strong emotions. When Bud is feeling sad, or angry, or frustrated, his brain is busy trying to deal with those feelings, so he doesn’t have a lot of extra energy to try to put words together. Instead, he finds the words that somebody from TV was using when they felt the way he is feeling.

"So, how many of you have ever seen Bud get angry and heard him say 'That’s it! I’m leaving!'?”

I shouted out the words with the tone and inflection that I knew were classic Bud. Every hand shot up.

"Yeah, he says that a lot, doesn't he? That’s Minnie Mouse from The Mickey Mouse Clubhouse. She was REALLY angry and REALLY frustrated.

"Sometimes, when he’s frustrated because he can’t get what he wants, he might use a script from Dragon Tales. It’s from a show where Zak and Wheezie want to play the wolf in a puppet show of The 3 Little Pigs. If they can’t be the wolf, they don’t want to play. So they say “No WOLF, no Zak and Wheezie!” But Bud usually changes the words when he uses that script. So on a day when he's frustrated because Mrs. Nee tells him it's not snack time, you might hear him say in the very same way as Zak and Wheezie, 'No SNACK, no Bud-NOS.'

"But, as I said, when his emotions are really strong or really difficult, he usually doesn’t change the words at all. He just uses the words from the script because they really capture the emotion he’s feeling.

"So if you hear him say something and the words don't match what's going on at all, don't think about the words he's using. Try to think about the feeling that might go along with those words, and it might help you understand why Bud is saying them. Sometimes, you can even ask him, 'Bud, who said that? What made them say that?' And very often, he will explain it to you."

A thoughtful silence filled the room.


Up next: Question #3 -Why does Bud say the same things over and over and over?

A hair-dryer kid in a toaster-brained world

Okay, so: the presentation.

First, I should tell you that we orchestrated it with the stealth of CIA operatives. We didn't want Bud to see me in the building, because we knew that my presence would be difficult for him. (Mom does not belong in school. Mom should only be here when she has come to take me home.) We all synchronized our watches, and as lunchtime approached, Mrs. Nee walked Bud to the lunchroom, where he was meeting another staff member, and Ms. Walker readied the classroom, while a student, Noelle, helped me slip in the side door and up the back staircase.

While we waited for a few students to return to the class with their hot lunches, Ms. Walker let me know that they'd told the children a little bit about my blog, read them a few excerpts, and let them know that people all over the world read about their classroom. The kids were delighted to know that they had fans, and even more delighted by the idea that they'd been given pseudonyms when I wrote about them. It seems they'd had some fun trying to figure out who was who.

Then, the children returned with their lunches and settled at their desks, which had been arranged in a circle. I sat down to join them, and it was time to begin.

I started by thanking them for inviting me to their class. "I hope you know," I said, "that you are really, really important people to Bud. He doesn't always show friendship the way other people do, but believe me - you are important to him. He talks about you all the time. He tells me all about his buddies. And he loves having buddies."

They grinned their response.

"I also want to thank you for asking such great questions." I held up their index cards. "Your questions were fantastic, and they tell me that you really pay attention to Bud."

Dan raised his hand. "I wasn't here the day they wrote cards," he said. "But I do have some questions."

"That's great, " I told him. "How about if I answer the questions that other people have asked first, and then if I haven't answered your questions, you can ask me more about them."

Dan agreed, and I turned to the rest of the class. "You can all ask more questions. Sometimes when something seems different, people can get nervous about asking questions, but I want you to know that I want you to ask questions. It's the best way to learn about things you don't understand."

My intro was over and it was time to get into my answers to the questions they'd written. I'd prepared ten pages of notes. I wanted to help the kids understand Bud's differences, but I didn't want to present him as "other," as though he were an alien living among them, as though there were something wrong with him, so I'd developed some analogies - some things that I hoped would help them relate Bud's experience to their own.

The first one felt the riskiest. It was my make-or-break analogy - the one on which the rest of the presentation hinged. If it didn't resonate with them - or, worse, if it seemed lame - I was afraid I'd lose them. I knew that one ill-placed snarky comment from one of the kids could make the whole thing unravel.

So I took a breath, and I started talking.

"The first question that lots and lots of you asked is: What is autism?

"Autism is something that people are born with – you either have autism or you don’t have it. You can’t catch it.

"Having autism means that your brain is put together differently. Your brain still works perfectly well. It just does things differently from other people’s brains.

"Let’s think about the brain as a machine. You know that your brain controls everything you do. You use your brain to think about things and to make your body do things. Your brain also controls things that you don’t even think about. You don’t have to remember to breathe, because your brain does it automatically for you. You don’t have to remember to blink, because your brain does it. So, sometimes you USE your brain to do things and sometimes your brain just does things because that’s what it’s wired to do.

"The same thing is true in autism. Bud uses his brain for everything, too. But because there are differences in the way his brain is connected, there are differences in the way his brain reacts to things.

"Now, we all know that your brain is a machine that's made of tissue and neurons and nerve cells. But let’s pretend it was a more simple machine. Let’s pretend your brain wasn't made of tissue and neurons and nerve cells, but instead, it was made of metal and plastic and electrical wires. And let's pretend that when you put that metal and plastic and electrical wire together, it turned into a toaster."

Here, the class laughed - the good kind of laughter. I carried on. They were with me.

"And let’s pretend that MOST of us had toaster brains. Some of us might make white toast and some wheat toast or rye toast, and some of us might make light toast and some of us dark toast. Some of us might only toast bagels, and sometimes we might even burn the toast, but for the most part, all of our brains would be able to do the same thing: make toast.

"Now, think about the pretend world that we have just created. In our world, MOST people have toaster brains. So, when we make the rules for our world and decide how we want to spend our time, what do you think we’ll decide is the MOST important thing a person can do?"

Nora raised her hand. "Always try hard and do our very best?"

"Yes!" I said. "And WHEN we do our very best, we will be doing a great job making..."

"Toast!" they responded in unison.

"Yes! Because we have brains that are really GOOD at making toast - so we will want to have a world where it's REALLY important and REALLY valuable to make toast. Right?"

Heads nodded around the room.

"Now let’s pretend that Bud’s brain is ALSO made of metal and plastic and electrical wires, just like our brains, except that when HIS metal and plastic and electrical wires get put together, they turn into a totally different kind of machine. Instead of being a TOASTER, Bud's metal and plastic and electrical wires turn into a HAIR DRYER."

I swear, I heard gasps.

"Now, there’s nothing WRONG with a hair dryer, right? Hair dryers are great! There are some things that hair dryers are really good for. There are some things that a hair dryer can do even BETTER than a toaster. But it is REALLY, REALLY hard to make toast with a hair dryer."

They laughed again, and nodded, and totally, completely got it.

"So, in our pretend world, even though Bud has a perfectly wonderful hair dryer brain, it’s going to be hard for him, because we toaster-brained people have decided that the most important thing that people do in our world is make toast. And Bud probably can make toast with his hair dryer, right? But he is going to have to work a lot harder to make toast with his hair-dryer brain than we will with our toaster brains. It will probably take him a lot longer to make his toast. And no matter how hard he works, his hair-dryer toast will probably always look different from our toaster toast."

The room filled with murmurs of understanding.

"But, on the other hand - think about THIS! When we toaster-brain people have wet hair? We are REALLY going to hope that Bud and his hair-dryer brain are around."

Nathan piped in. "Because we could get ZAPPED if we tried to use our toasters!"

"Exactly," I continued. "And the same thing is true in the real world with our real brains, that are made of tissue and neurons and grey matter and, uh..."

"And important stuff," offered Travis.

"Yeah, and important stuff," I said. "Because for most of us, when that important stuff gets put together, we have a certain type of brain. And we have created a society that says the most important things are the things that most of our brains are really good at - things like:

"Talking and communicating with people;

"Making friends and spending time with people;

"Doing lots of different kinds of things, having lots of different kinds of interests, and trying new things.

"Because our brains are really GOOD at those things, we try to spend most of our time doing them. But those are all things that, because of his autism, Bud’s brain has a really hard time doing.

"Language is difficult for him and he doesn't talk the same way as other people.

"Being social and knowing how to interact with people is difficult.

"Changing his routine and trying new things is difficult."

The classroom resonated with affirmation. Bud's classmates knew exactly what I was talking about. They knew, without me explaining any further, what kinds of behaviors I was talking about. I could see the understanding in their faces.

"But, remember how there were some things that the hair-dryer brains could do better than the toaster brains? There are ALSO things that Bud’s brain is really GOOD at doing. There are things that HIS brain can do better than a lot of our brains can do.

"I bet you can guess what some of those things are. Can you?"

Hands flew up all over the room, and without my prompting, they recreated the list I had written in the notes in front of me.

"He's really great on the computer. He's better at it than LOTS of people."

"He has great hearing."

"He can remember lots of lots of things."

"He can remember all the words to TV shows."

"And he can remember the words to songs."

"He is very musical."

"He's a great speller, too," I added. "Once he learns a word, he usually remembers how to spell it."

"If I had a brain like that," said Nathan. "I'd read the whole dictionary and learn all the words."

"That would be a great thing to do," I said. "And it reminds me that Bud is also a really good reader."

Molly raised her hand. "And he has a great sense of humor, too."

"He does have a great sense of humor," I said. "And that's one of the ways that his brain is a lot like other people's. What are some of the other ways that Bud is just like everyone else?"

Again, the hands flew up.

"He can see just like everyone else."

"He looks just like everyone else."

"He's human."

"Yes! He's human - which means that he has all the same feelings that everyone else does. And he loves the people in his life. And he likes to play and have fun. He likes to laugh, he likes to swim, he likes to eat pizza. In lots of ways, Bud is just a regular kid."

I looked around the room at the smiling faces of Bud's classmates - his friends, with their toaster-brains firing.

"But a lot of your questions were about some of the ways that Bud is different from you and about the things that are harder for him than they are for a lot of other toaster-brained people. So, let’s talk about some of those questions."


Up next: Question #2 - Why does Bud repeat things from TV?

Circle of friends

It was incredible.

I met with Bud's class today at lunchtime. I was expecting it to go well. I was actually expecting it to be great. But, I'm telling you: IT. WAS. INCREDIBLE.

I can't even begin to describe how affirming it is to face a circle of children who have opted to stay at their desks for lunch and recess because they want to learn more about your child. This was a completely optional conversation for them, yet almost every child stayed. There were a few boys who chose to hold on to their recess time (and I have a hunch they are boys who NEED their recess time to make it through the rest of the school day), but even there - when they returned to class after recess and found there were still about ten minutes to go, they joined right in, asked questions, and seemed as interested as those who had been there all along.

And those who had been there all along? They were AMAZING. I'd prepared myself for some snickering. I'd prepared myself for some walls of coolness and some discomfort with difference. But the classroom today was completely void of attitude. There was plenty of laughter, but it was the laughter of recognition and understanding. There was plenty of laughing with, without a hint of laughing at.

I'd planned a presentation and I'd hoped for some conversation, but I had no idea how eager these children would be to interact. They were fully engaged, their hands flying in the air, their eyes shining, hoping for the opportunity to let me know how well they knew Bud, what they had seen, what they had wondered, what they already knew and understood. And as they spoke, I realized: they get him. They may not have known why he is the way he is, but they understand and they respect that he is the way he is.

Have I said it enough? I love these children.

I want to post more about the presentation itself, so that you can experience it as I did. I can't imagine trying to fit it all into a single post, because there is just too much to say, so I think I'll take it post-by-post, day-by-day. I structured the presentation around the questions the children had written, so over the next week or so, I will post a different question each day. And as you read, you'll have to imagine a room full of ten-year-olds, their heads bobbing, their hands raising, and their understanding growing.


On deck for tomorrow: Question #1 - What is autism?

Wholly moley

I'm telling you, sometimes medication management with a growing boy feels like an endless game of Whack-a-Mole.

You work for weeks - sometimes months - to try to find just the right timing for just the right doses of just the right medications, until things balance out and your child hits his stride. And then he grows, and an issue that has not been an issue for a while suddenly becomes an issue again - suddenly pokes its little mole head out of the hole in which it's been hiding. So you collaborate with your child's doctor and assess your best course of action and realign and try to whack that mole right back into place... only to find that, either because of the new medication or because of the growth spurt or the change in body chemistry that started this whole game, there is yet another mole in another area of the game board who is popping up and demanding attention. And no sooner have you whacked that mole into place than the original mole is popping his head back up, as if to taunt "but don't forget meeee....."

Bud's doing fine, all things considered. But I sure am busy whacking moles.