Sunday, March 14, 2010

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?


Kate said...

You describe autism better than anyone I have ever met or read in my life. You are a genius! Please keep writing these - you could make a book or newspaper article series out of them, you really could. Those are some lucky kids. I never quite thought of it that way.

jess said...

I am so moved and impressed by all of this on so many levels. More, more, more! (please)

Judy Jeute said...

It has just dawned on me...I thought I was reading this to learn more about kids. Funny, you have just taught me more about my own seizure disorder and how it affects my brain and my family. I agree, more, more and more please!

Cari said...

I am so hooked on your blog now that I come daily to just check on updates. I have learned so much about autism from just reading your blog and I agree with Kate you please keep writing and you are a genius! Bud is one lucky kid

Niksmom said...

The wacky hair cracks me up! I happen to agree with're a genius. xo

Eileen said...

This just makes me so happy and so sad all at the same time. Happy for Bud and his wonderful classmates, but sad that every kid on the spectrum (especially my kid) doesn't have the same classroom experience. The same acceptance and eagerness to learn and understand. But we can all learn from your example and make our toaster brains heard as well. Thank you for writing these!

Professor Mother said...

Run, Mom-NOS, run! This is a series that will be shared around the country- heck, around the world- about how to explain autism. Pure brilliance.

Out of curiosity, have you shared this with Bud? I was wondering how he handles (could handle?) the analogy... analogies are an excellent example of how our toaster brains work! :)


miss brave said...

Mom-NOS, I have been a reader (but not a commenter) of your blog for a long time. I teach second grade to typically developing children in a school with many inclusion and special education classes, and I just want to tell you how wonderful this is. Even though I teach general ed kids, I've had times in my class where I needed to explain why one person was acting differently from everyone else, and I always struggle with the issue of "talking behind their backs" vs. explaining what makes them "tick." I love the language that you use and the way this explanation is unfolding. Bud's classmates and teachers sound like a great bunch!

Unknown said...

Awesome, awesome, awesome!

I'm actually going to "explain" autism to some K & 1st graders next month- a bit smaller than your audience :) But thanks for sharing so much- you really helped me get my thoughts together!

Jo said...

I love your blog. It's very cool that you went to meet Bud's class. I hope I can do somethign like that for my little guy when the time comes.

Usethebrains Godgiveyou said...

You have really thought this through. THanks for a marvelous post.

Brenda Rothman (Mama Be Good) said...

Loving this!
And more ... questions:
Does Bud know you're meeting with his class? How did you make the decision to have him there or not? Will you tell him?

Holly said...

Someone just directed me to your wonderful blog today and I have to admit I am in tears reading your wonderful posts about your son. I have a nine year old son, Quinn, who sounds exactly like your son Bud. This post especially could be word for word my explanation of Quinn's language development. Wonderful way to explain it all. I look forward to reading more of your posts, but I just wanted to say how much I appreciated your story and your obvious love for your son.

KAL said...

:) Awesome.

Stimey said...

You are amazing. Also, I really, really love the image of wacky hair day.

Daphne said...

My little guy's first sentence was: "One day in Teletubby land, something appeared from far away..." I can *really* appreciate your explanation of echolalia to these kids. Mom-NOS, you're doing great work!

Anonymous said...

Book please, make this into a book. It is something I need to be able to give to teachers and all those toaster-headed folks that my kids meet every day.

Anonymous said...

You have Described echolalia more in one page to me than a speach therapist and shild phycologist ever did. I now understand my daughter 10 times more because of you,.. thank you!
she uses fragments from tv and books alot, when she is angry she will quote from snow white "take you too the woods and cut out your heart" when sad it will be the goose girl "falada poor falada hanging up there,....etc" We had a whole year that if she didnt like what someone was saying or doing she would quote "If you dont behave you wont come to my birthday party" from a tv show, not that she was having a party nor had she ever had one.

Amy said...

I have a couple of little hair-dryers myself. I've tried several times to explain to people the way my youngest little buddy learned to talk, because it's so difficult for "toaster-brained" people to imagine. Your description was so good that I think I'll just print it and carry it with me from now on. Thank you so much for your terrific words!

Suzy Mac said...

I am reading this a few years after it was posted, but this information is timeless. I have two little ones on the Autism Spectrum, and have felt pretty isolated (I never leave them or the house) so I really appreciated finding your blog, especially as I have had no idea how to explain scripting to other children. I can't thank you enough (HUGS)!