What You Can Do Right Now to Help Your Child with Autism

I'll admit it: I was skeptical when the offer came in.

Last month's e-mail from Sourcebooks, Inc., the publisher of Jonathan Levy's book What You Can Do Right Now to Help Your Child with Autism, explained that the book:

offers parents 10 specific ways to help their autistic children interact better in the world. The techniques Jonathan outlines in this book were developed by the Autism Treatment Center of America and have produced dramatic results with children whose illnesses range from mild Asperger’s Syndrome to severely autistic. Even following only some of the 10 suggested methods can produce positive changes in autistic children. Of the over 800 families that Jonathan has worked with in the past 12 years, only 3 did not see differences in their children.

It sounded promising, of course. But "1o specific ways" to help my autistic child? I mean, if it were that easy - well, I wouldn't really need a book on it, would I? But, I figured, what did I have to lose? I decided to give it a try.

I'm so glad I did.

Levy's book is a quick read. It's easily accessible and instantly understandable. And it's full to the brim with suggestions and examples that resonated with me - that sounded like just the thing to help me approach this or that issue that I'm currently working on with Bud. Levy does, indeed, suggest ten specific things, and he makes no mystery of them - they're listed right there in the table of contents. They are listed, even, in the publisher's press release. They are:

1) Don’t react
2) Make eye contact a priority
3) Join the stims
4) Coping with crying
5) Give the child as much control as possible
6) Focus on attitude
7) Work one-on-one in a nondistracting environment
8) Be dynamic with the child
9) Go directly to language
10) Make sure food isn’t part of the problem

But it's not the list itself that is the goldmine in this book; it's the way that Levy unpacks the list. For each item, Levy provides four things: 1) a good description of a specific problem; 2) a very tangible suggestion about how to address the problem; 3) solid philosophical underpinnings that explain why the suggestion makes sense; and 4) a real-life example of the suggestion in action. And best of all, it is not only easy to understand what Levy is explaining, but it is also easy to implement the suggestions he makes.

Levy is honest and up-front with the fact that he approached his work through one very specific model, the Son Rise program, which he used in his work with the Autism Treatment Center of America. I'll be honest and up-front with the fact that I have almost no familiarity with the Son Rise program, so this post is neither an endorsement for nor a critique of it. I will say, though, that many of the suggestions he makes and examples he gives - especially those that resonated most with me - also seemed to fall in line with many of the philosophies that underlie RDI.

That's not to say that I agreed wholeheartedly with everything Levy had to offer. I found some suggestions that seemed not-quite-right for Bud and me. I found only one that seemed entirely wrong. But, mostly, I found gem after gem after gem. And here's one of the things I liked best about Levy's style and philosophy: In three different places in the book - including the introduction and the conclusion - he made statements like this:

I ask that you read this book with an open mind and heart. If there is advice or activities in the book that you don't agree with, don't do them. Understand, though, that everything here is my best advice to you.

Perfect.

I'm glad I read this book when I did - just before the start of a new school year, as Bud is transitioning into a new school setting with new professional and paraprofessional staff. This is exactly the sort of book I want to pass on to the people who'll work with Bud in the years to come - easy to read, easy to grasp, easy to implement. I have a hunch that my copy of this book will be well worn by the end of the fall semester.

Levy provides ten suggestions of things you can do right now to help your child with autism. I'll just provide one:

Read this book.

Why I don't like summer reruns

In case you've been wondering: I'm still afraid of thunderstorms.

Sentenced to envy

I've never been very good at using emotions like envy and jealousy. I think it's my good Puritan roots that just make me too pragmatic and practical to waste energy on pipe dreams. Don't get me wrong - I feel envy and jealousy as much as the next person. I just don't tend to feel them about grandiose things; I'm a lot more modest when I expend those particular emotions.

Let me give you an example.

I go to a fabulous concert and see a wildly talented artist perform in front of thousands of adoring fans, who hoot and shout and stomp in appreciation, and I'm jealous. But I'm not jealous of the wildly talented artist, the recipient of the appreciative hoots, shouts, and stomps.

I'm jealous of the person who is hooting, shouting, and stomping in the front row.

I mean, let's face it: I could never be the wildly talented artist. I have neither the ability nor the inclination. It could never happen. It's wasted envy.

But that person in the front row? That could have been me.

The same thing happens with writing. In fact, it happened recently when I was reading the final installment of the Harry Potter series, Harry Potter and the Deathly Hallows. I got jealous of J.K. Rowling.

I wasn't jealous because she is the best-selling author of an outrageously popular seven-part series of novels that has sparked the interest and inspired the allegiance of children and adults around the world. That's simply too far removed from my own personal reality. I don't even write fiction. I have neither the ability nor the inclination to write a short story, never mind an internationally best-selling seven-part series of novels.

But I can write a great sentence.

I can. Not always, of course. But every now and then I can write a really great sentence. Some of them appear right here on this blog - I stop back now and then to visit them. And so it was that a single sentence in Book 7 - one really terrific, stop-reading-and-marvel-at-me sentence - sent my envy into overdrive.

Have you read Deathly Hallows? You have? Then you must know the sentence I'm talking about. It's right there on the top of page 236:

"Dawn seemed to follow midnight with indecent haste."

You know just what she means, don't you? You have had nights that felt exactly like that, and there are no other words that could capture the feeling quite the same way. It's a really, really great sentence.

I could have written that sentence. But I didn't.

I'm so jealous I could spit.

What Bud eight

The other day, March Day and TJ tagged Bud for the eight things meme, so this morning we sat down at my laptop and I asked Bud what he'd like people to know about him. Here is his response:

1. I like chicken, white and chocolate ice cream, Twizzlers, and bagels.

2. I like my friends.

3. I like Ms. Luekart and Ms. Brown and Ms. Howard.

4. I like music class, gym class, library, art class, and the cafeteria.

5. I like the computer. Maisy's Playhouse.

6. I like to play toys. I like the Tubby house.

7. I like Tubbies.

8. I like Dierks "Every Mile a Memory," "I Can't Live it Down," "Long Trip Alone," "Come a Little Closer," "Free and Easy Down the Road I Go"; Keith Urban "I Told You So", "Days Go By," "Be My Life", "All Comes Down"; Jack Johnson "Banana Pancakes," "Upside Down," "Broken," "People Watching," "Wrong Turn,""Talk of the Town," "Jungle Gym," "We Are Going to be Friends"; Tim McGraw "Last Dollar," "Stars Go Blue"; Josh Turner "Would You Go With Me"; Rodney Atkins "These are My People"; Brad Paisley "Cooler Online," "Ticks"; The Wiggles "Hot Potato," "Shaky Shaky," "Fruit Salad Poem,"; Sugarland "Everyday America".

The long and short of it: On Dierks Bentley's hair and the power of reaching out

On Monday night, I posted an open letter to Dierks Bentley, asking him to keep his hair short for Bud's sake.

On Tuesday afternoon, I received a lovely e-mail from Cassidy Bentley, Dierks' wife. They'd read my letter and wanted to give me an update on the status of his haircut.

I won't keep you in suspense: Cassidy says that Dierks may be growing the short hair out. But, she assured me, he'll be growing it slowly and not to its original length, so maybe, she said encouragingly, just maybe that would give Bud the time he needed to make the transition, too. And, she said, they'd love to send Bud some short-hair-only mail when Dierks gets home from his current tour.

Yes. It's true. Dierks and Cassidy Bentley really are that terrific.

After I read Cassidy's e-mail and mopped myself up off the floor, I wrote back to thank her for her thoughtfulness, to thank her for reaching out, to thank her for caring that a seven-year-old boy with autism is troubled by the length of her husband's hair. We had a brief exchange from there about the power of the internet and about the remarkable nature of the virtual community it houses.

The next morning I thought about our exchange as I drove to work. The title track of Dierks' latest album was playing on my iPod:

It's a long trip alone over sand and stone
That lie along the road that we all must travel down
So maybe you could walk with me a while
And maybe I could rest beneath your smile
Everybody stumbles sometimes and needs a hand to hold
'Cause it's a long trip alone

It's a short piece of time but just enough to find
A little peace of mind under the sun somewhere
So maybe you could walk with me a while
And maybe I could rest beneath your smile
You know we can't afford to let one moment pass us by
'Cause it's a short piece of time

It started me thinking.

Long trip alone.

Short piece of time.

Two themes I seem to hear a lot about from the parents of children with autism.

On one level, Cassidy sent me an e-mail to discuss Bud's concerns about Dierks with long hair vs. Dierks with short hair. But on another level - on a much more important level - she sent me an e-mail to reach out, to connect, to say "I'm here, too." And her e-mail reminded me that this parenting journey - this parenting journey so often defined by autism - doesn't have to be a long trip alone. There are supporters around every corner. There are allies at every turn. And sometimes they come from the most unlikely of places. We just need to remember to reach out.

Reach out when we need.

Reach out when we're needed.

Thanks, Cassidy. And thanks, Dierks. It was a short exchange, but it's one that will stay with me for a long, long time.

Free and easy down the road we go. All together now.

An open letter to Dierks Bentley

Dear Dierks,

We need to talk. It's about the hair.

Now, I'll admit that Bud and I are relative latecomers to the Dierks Bentley bandwagon. Despite that, though, we are big fans. In fact, Bud has recently announced that you are his favorite singer. Better than Paul McCartney. Better than Raffi. This is big stuff.

Anyway, we discovered you through your latest hit single, "Free and Easy (Down the Road I Go)" and, especially, through repeated viewings of the video. (If you've hit number one on the Yahoo Launch playlist, we have probably had something to do with it.) So the image of you that formed in Bud's mind - the image of you that is YOU as far as Bud is concerned - is the one that he saw in that video.

The one, in other words, of you with short hair.

Recently, Bud has been branching out and exploring the Dierks Bentley catalog. He's got Long Trip Alone on his iPod. He recognizes your voice when he hears it on the radio, and so we've also added a number of other songs to his db playlist - like "Settle for a Slowdown," "Come a Little Closer," and "Wish it Would Break." (So far we've avoided "Domestic, Light and Cold," thank you very much.) And now that he's familiar with so many of your songs, he is also interested in mining your video library. We've checked out a lot of your videos on Yahoo.

You know the videos I'm talking about, right?

They're the ones of you with long hair.

Bud is, to say the least, unsettled by them.

It plays out the same way no matter which early video we watch. The music starts, Bud is delighted, and then you and your long hair appear on the screen.

"That's Dierks when he was little?" Bud asks.

"Well, when he was younger," I answer.

"That's Dierks when he was younger," Bud says.

"Yes," I reply.

Bud pauses, watches for another moment, then says, "Let's try something else."

Inevitably, the path leads us back to "Free and Easy" and your predictable, familiar short hair. Now, I know that the length of your hair might seem like a trivial thing to be writing about, but trust me - in this corner of Autismland, it's not. For Bud, your short hair is grounding. It's an anchor.

It's possible that we could work up some flexibility on the matter. Occasionally we are able to watch "Long Trip Alone," since you actually get your hair cut halfway through the video. But only occasionally.

These days Bud is preoccupied with your hair even when there's no visual to distract him. We'll be cruising along in the car, happily listening to "My Love Will Follow You," and a troubled little voice from the back seat will ask, "Dierks has short hair, Mama?"

"Yes, he has short hair now."

"He sings 'My Love Will Follow You' with short hair?"

"Yes, I think he has short hair while he's singing this one." And yes, I know I'm lying, but honestly, sometimes you just gotta do what you gotta do.

Anyway, the reason I'm writing: I'm sure you're going to have a long, successful career, and Bud and I plan to enjoy it right along with you. We'd like to be able to watch your videos, check out your tv appearances, and maybe, someday, even see you in concert.

So, the new look? The short hair?

Stick with it.

All the best,

MOM-NOS

How do you say "adorable"?

Language delays and differences have been a significant part of Bud's autism, but articulation and pronunciation have not. What Bud says is often unique and off-beat, but how he says it is usually pretty straightforward.

That's not to say that he doesn't have some of the cutest mispronunciations in the world. He does. But they're not autism-related; they are just plain kid.

Like, for instance, sometimes Bud likes to eat kitchen:


And, from time to time, he really likes to eat his kitchen with check-up:


And my favorite.

My very, very favorite.

The one that makes me smile no matter how many times I hear it.

Bud is a big fan of animals. He even likes this one:

Do you recognize this animal?

It's a stunk.

Now that's what I call advocacy

You may remember that several months ago I posted a link to an article about Teddy Willis, an eleven-year-old with Aspergers who stood up for his right to discuss his Aspergers with his classmates during Autism Awareness Month.

Teddy and his mom Irene are at it again.

This time, they are starting a day camp designed for children with Aspergers and children without Aspergers to work, play, and deepen their understanding together.

You can read all about it here.

A real life saver

Bud and I took a mini-vacation this week and spent a few days staying at a hotel (Bud's very favorite thing in the world) and taking day-trips to the beach. Much to my surprise, after one thrilling day riding the waves at the ocean, Bud was ready to return to the tranquility of the lake, so most of our vacation time has been spent at the very same beach where we've spent most sunny days this summer. (Luckily, though, vacation is really just a state of mind.)

The other day, Bud brought his four prized Teletubbies figures with him to the lake so that they could enjoy a little R & R as well. The six of us - the four Tubs, Bud, and me - were floating together on a blow-up ring when I heard the unmistakable sound of thunder rumbling in the distance. The two teenage lifeguards stood high in their chairs, blew their whistles, and announced that everyone would need to clear the water for 30 minutes after the sound of thunder.

I tried to keep my voice even and calm, unsure of how Bud would react to this unanticipated turn of events. Thunder has been one of the most powerful triggers for Bud's anxiety, yet he had barely reacted this time to the sound of the thunder in the distance. I explained that we needed to leave the water, and Bud suggested that it was time to leave the beach. I agreed and we started to make our way to the shore when Bud stopped in his tracks.

Tinky Winky was missing.

We started scouring the bottom of the lake in the area where we'd been floating, but the sand was kicking up and clouding the water as people all around us vacated the water. The lifeguards' whistles and shouts became more insistent and I could feel tension filling my body as I tried to lead Bud to shore: "We need to leave the water, honey. We'll get Tinky Winky later. He won't go anywhere. We'll get him."

Bud's anxiety kicked in and he started sobbing. "I need him!" he wailed. "PLEASE can you get him, Mama?"

I looked at Bud standing at the water's edge and tried to see the situation from his perspective: His friend - his best friend - his rock - was stranded at the bottom of the lake with a thunderstorm - the scariest event possible - getting threateningly closer. I looked at Bud's tear-stained face and saw his little body tremble and I scanned the beach trying to come up with a plan.

"The lifeguard," I said to Bud. "We'll ask the lifeguard to help us."

Bud trailed me as I walked down the beach toward the high lifeguard chair and approached the tall, muscular teenager who was shouting out to people still in the water.

I fumbled through an explanation of my problem - "My son, his toy, in the lake, he's panicking, it's a Teletubby..."

"I'll help you find it," he said.

Bud stood on the shore, his eyes red but his tears gone, as the lifeguard and I walked gently through the area where we'd been floating, our eyes scanning the sandy bottom. The lifeguard multi-tasked - scanning the bottom, blowing his whistle at lingerers, scanning some more, shouting to kids who would not leave the water, scanning again - as I searched and searched, worrying about what I'd do if I couldn't find the toy. I looked up at Bud.

"Did you find him, Mom?" he shouted, his eyes and voice full of hope.

"Not yet, Bud," I said, with renewed determination. I looked over at my teenage counterpart and wanted to explain to him how much this meant, how appreciative I was, and stammered again "Thank you so much... don't know what I'd do... autistic... really important to him..."

"It's no problem," he answered. And then, a moment later, he added, "Take your time. Really. There's no rush."

My shoulders relaxed and for the first time since I'd heard the rumble of thunder, I exhaled. Then I looked down, and there on the sandy lake bottom was our old friend, Tinky Winky, soaking wet, but safe and unharmed.

I reached down, scooped him up, held him over my head and turned back to the shore.

"You did it, Mom!" Bud shouted. "You find him!"

I turned to the lifeguard several yard away, still shooing swimmers back to shore, and held up the doll. "Thank you!" I yelled, and he waved and went back to work.

It's important work they do, those lifeguards. Every day they make decisions that change lives. Sometimes they really come to the rescue.

And sometimes - sometimes they get to be heroes.

Watch your language

So much of parenting a young child is explaining, redirecting, clarifying, and limiting, but I have to say - sometimes it's difficult to know exactly where I should be putting my energy.

I mentioned recently that Bud has been experimenting with "mean" words, testing their power and finding their most suitable contexts. But, as a child with autism, he doesn't always retain the specifics of a mean idiom or figure of speech. Case in point: Over the past several weeks, Bud's been doing a lot of back-talk when he wants someone to stop speaking.

Sometimes it's innocuous: The dog across the street barks, and Bud stands in our driveway and yells "Shut out, Jenna! SHUT OUT!"

Sometimes it's impertinent: Nana tells him it's time to turn off the computer and he turns to her and says, "Shut out, Nana. SHUT OUT!"

Sometimes it's just plain rude: The clerk at the supermarket asks him how he is today and he responds with a loud "Shut out, man! SHUT OUT!"

I'm never sure what to do in these situations.

Do I respond the way I would with a neurotypical child to this very developmentally appropriate behavior: "Bud, it is not nice to tell people to 'shut out.' It makes them sad."?

Or do I address the autism-related issue here instead: "Bud, you want Jenna/Nana/the man to shut UP, not shut OUT. You say, 'Shut up, Jenna/Shut up, Nana/Shut up, man.'"?

It really is a quandary.