Thursday, December 30, 2010

Hyperlexia Revisited - part 3: lost in books

This is the third in a series of posts where I attempt to provide a snap shot of hyperlexia beyond the "my toddler can read" stage. I want to describe some of the ways that hyperlexia might manifest in addition to early reading.

Previously, I wrote about how Ben's linguistic sophistication coexists with a lack of social sophistication. In other words: language is easy, conversation is hard.

I also wrote about
The joy of text: the fascinating ways that Ben's brain seemed specially tuned to language and text.
_________

I remember being in a restaurant when Ben was about three years old. As we ate our meal, Ben sat at the table with a stack of books, content to read quietly. A mom at a nearby table, with a boy of similar age, looked over at him and said to me, "You're SO lucky! I wish mine would sit still like that!"

I acknowledged her comment with some humor, and managed to resist chirping back, "And I wish I could get mine to talk to me!"

Seeing a child engrossed in a book probably ranks second only to watching a child sleep when it comes to the Precious Moment Index, so it's difficult to describe how something that so many parents work very hard to promote, to cultivate, to make into a habit can be - at times - the source of a dilemma.

For Ben, books function a little like a transitional object. Typical transitional objects tend to be pacifiers or security blankets or a favorite, essential stuffed toy: things that offer comfort and reassurance. Individuals on the spectrum may not outgrow the need for a transitional object as they exit toddlerhood the way most children do.

Like other transitional objects, books seem to be healing, regulating, distracting, enveloping and calming.

But they also can be the source of perseveration.

When Ben is engrossed in a book, it's nearly impossible to get his attention by speaking to him. Sometimes even a tap on the shoulder will not be sufficient to break his concentration.

When I manage to get him to look up, he usually does for a moment, until his head is pulled downward again by what appears to be an invisible magnetic force that is beyond his control. It's not that he's ignoring me, it's like he's really trying to look at me but can't.

I gently try to lift his chin sometimes. Again, after a moment of eye contact, the force pushes against my fingers and pulls his eyes and face back to the book. It is not a stubborn act of rebellion or willfulness. It just seems he cannot stop his eyes from returning to the page.

Occasionally, when I try to gently shut the book, he forces it back open, pleading, "Wait, wait, wait, wait!" as if I'm taking away an oxygen machine.

The best way to get his attention when he's reading is for me to lean down and cover the entire page with my forearm or place another object over the page. Not subtle, but effective.

book nook.jpg

The real dilemma with the book-as-transtional-object situation is that books have become a survival tool rather than a choice.

Because reading is such a socially acceptable activity, I've been happy to let Ben use books to his heart's content to survive restaurant meals, our dinners with adult friends, and other social events that I know won't hold his attention for long. Our bags and backseats are stocked with books we can pull out to delay, distract and disarm whenever needed. They've made our life easier.

But probably as a result, Ben is barely able to sit at a meal without a book. He paces, he squirms, he asks to be excused as soon as he's had two or three bites of food.

Give him a book, on the other hand, and he'll happily sit through a long dinner and clean his plate.

I'm not making much headway with this because I tend to choose nutrition over therapy when dinnertime rolls around, but we have attempted a "no books for the first ten minutes of dinner" project with limited consistency and success.

Which makes me wonder if I'm equally dependent on books - on Ben using a book as a transitional object - as a way of easing the day-to-day, moment-to-moment difficulty and uncertainty.

When a child gives up the pacifier, isn't it really the parent and the child giving it up together?

___________

What about you? Are you ever ambivalent about your hyperlexic child's dependence on books to get through or get out of certain situations? Would your child rather read than face the hostile environs of the dinner table? And how many books are in the backseat of your car right now?

library.jpg

Friday, November 12, 2010

Our assumptions, their agenda

I should be working right now, or at least working on the draft of the third in my Revisiting Hyperlexia series. (It's coming, eventually. I promise.)

But I saw this video courtesy of one of my parenting (and life) role models, Shannon, and I felt compelled to drop what I was doing and share it with you.



It reminds me of how easy it is to make assumptions about our kids' behavior without stopping to try to see it from their point of view. Sometimes, what they do makes no sense to us, or looks odd, or even appears manipulative or defiant, maybe, in the case of the video, disturbing.

If we stop to ask them (or try to read their cues if they can't tell us with words), "What are you trying to do?" or "What do you want to happen right now?" we often find out their agenda is rational, even creative or enterprising.

I remember a time several years ago before Ben had very much language when he was eating crackers. I cut him off after what I judged to be enough. He reached and struggled for the box, yowling, "Box! Box! Box!"

"No more crackers." I said holding my limit-setting ground.

Frustration and its attendant trappings ensued, until he finally got the box and started reading the copy on the back.

He just wanted to read the box.

I think of that moment often, usually when I find myself, for example, feeling impatient with his close-up investigations of unusual sidewalk features or his frequent de-contextualized experimentation with Bugs Bunny-inspired 1940's slang, inappropriate for a first grade classroom.

He's a curious boy, with lots of ideas. He absorbs more than he can process. His feelings sometimes overwhelm him. He isn't at all concerned with the idea of "fitting in."

And usually, he's not pushing a limit. He just wants to read the box.

Saturday, October 2, 2010

Hyperlexia revisited - part 2: The joy of text

This is the second in a series of posts where I attempt to provide a snap shot of hyperlexia beyond the "my toddler can read" stage. I want to describe some of the ways that hyperlexia might manifest in ways other than early reading.

Previously, I wrote about how Ben's linguistic sophistication coexists with a lack of social sophistication. In other words: language is easy, conversation is hard.


Part 2: The joy of text

Ben's brain seems optimized to interact with text. He is often noticing different fonts and unusual lettering. He's wondered out loud, for example why there are two kinds of lower case "a"s. (Single-storey versus a double-storey a, in case you were curious.) And even though he has some fine motor delays and handwriting is hard for him, he painstakingly draws his letters, experimenting with different styles.

He spots typos and editorial inconsistencies like a seasoned copy editor. A few nights ago he casually pointed out, looking at the name of a villain in a Batman book, "It's 'The Scarecrow' on this page and 'Scarecrow' on that page." If there's a typo in the copy on toy packaging - you'd be surprised how often there is - Ben will spot it.

Occasionally, I'll type while he dictates an improvised story, and he will look over my shoulder, correcting any mistyped words or even suggesting improved punctuation.

Once, a few days after I typed a dictated story for him and printed it out, he wanted to go back and change it very slightly. He described the change he wanted to make without looking at the printed story and it was clear he had remembered the text exactly and planned the edit in his head.

His relationship to text is more than analytical. It's emotional, too. He experiences pure delight at unexpected or unusual words or letters. When we visited the main branch of the Berkeley Public Library for the first time recently, he laughed on and on about the Roman-style lettering carved into the cornerstone of the building, even pointing it out to a passerby so they could share in his delight:

Picture 11.png

We still refer to it as the Berkeley Puh-vib-lic Library.

Of course, I don't expect that Ben's characteristics are universal for every hyperlexic kid at six or seven years old. But the literature that's out there now often focuses so much on toddlers and not enough on older kids. What are your observations of your older child or yourself if you're an adult with hyperlexia?

Tuesday, September 28, 2010

Hyperlexia Revisited - part 1: Language is easy, conversation is hard

Since I started writing about Ben, I've been fortunate that so many parents have reached out and shared their own stories with me. Many stories follow a now-familiar pattern: our toddler was reading and we assumed he was gifted, but then he went to preschool and they told us he was autistic.

Though the word "hyperlexia" suggests the condition is simply an overabundance of ability, there's a bit more to it than that.

In reality, it means that a normal ability - reading - develops before the necessary cognitive foundation for reading is laid: the ability to make meaning, to understand context and perspective, to use language to communicate. And the absence or delayed development of these abilities is part of what distinguishes the autistic brain.

Which is one reason why most hyperlexic kids hang out somewhere on the autism spectrum.

So sometimes it feels like hyperlexia is a really delicious entree that comes with a side dish you didn't order. And you can't tell the kitchen to hold the side dish, and there are no substitutions.

I've been revisiting these ideas about the nature of hyperlexia recently for a couple reasons. One is that I recently read an excellent piece by lingusit Aya Katz that gives one of the best explanations of hyperlexia I've come across.

And Ben started first grade.

In first grade, it's not unusual to find your garden-variety socially-typical early readers. What will it mean for Ben to be hyperlexic when his ability to read is no longer a difference? And what happens now that Ben's reading comprehension has caught up with his reading ability?*

Does hyperlexia simply go away or become absorbed into an autism spectrum condition?

I'm going to attempt a series of posts that capture a bit about what hyperlexia looks like now, at six going on seven, because I think it continues to shape how Ben thinks and learns and interacts with the world in unique ways that go beyond the usual "early reading" definition.

Part 1: Linguistic sophistication without social sophistication

If language were music, Ben would be a music theorist, not a performer.

He seems to have a natural sense of the structure of language, the rules, the variations and patterns. He loves language as a thing unto itself, not necessarily as a means to an end.

He recently read a book to me and changed every verb from present to past tense without a single error. "I'm not going to say the Ss," he announced before starting. "I'm just going to say what people did." I remember that he did this once before. When he was 3.

He correctly uses advanced grammatical constructions like "neither/nor" in a sentence. He stops himself and restarts a sentence again and again until he knows he has the grammar just right.

But ask him a simple question: Ben, do you want a banana in your lunchbox today? And more often than not, I get a blank stare until I ask the question several more times.

He's great a greetings and conversation openers because those can be learned, memorized, but like anyone learning a foreign language, once the other person starts talking, pat words and phrases won't help: you need to think on your feet and invent language in the moment, make assumptions, inferences, know which of the 5 different meanings the speaker is using and respond all without missing a beat.

It's really a wonder that any of us can carry on a conversation.

I've started a game at dinner where we each have a pile of pennies and we put them in a dish each time we take conversational turn. When all the pennies are gone, he can bring a book to the table. It went well for the first couple nights.

But tonight he dumped all his pennies in the bowl at once and announced, "I'll just say a bunch of boring junk sentences."

Language is easy. Conversation is hard.

___________

*A significant gap between decoding ability and reading comprehension is one of the primary diagnostic criteria for hyperlexia.

Monday, August 9, 2010

Introducing: Firefly and Friends

I've written a bit about how Ben connects so strongly to, and learns so readily from videos, movies and TV shows.

He doesn't so much watch videos; he studies them, turns on captions so he can read the dialogue, memorizes scenes and acts them out, mashes up the stories and characters into his own creations, and eventually generalizes the ideas into everyday life. After writing about it, I heard from other parents there are plenty of kids out there who do the same thing.

I found myself thinking, "Someone should take the shows Ben loves and learns by heart and fill them full of social thinking content. That would be a great idea for a children's television show."

After all, it would probably appeal to families with kids who aren't even on the spectrum. I've been in more than a dozen conversations with friends who have typically developing kids and when I tell them about the social skills group Ben attends they ask, "Why can't MY kid get that?"

This idea would not let go of me.

Pretty soon, I had written a decent treatment for a show that I was going to somehow convince someone else to make.

Chris informed me that I was, in fact, making the show, as much as I might protest that I couldn't possibly do it.

And while it seemed crazy it didn't seem entirely impossible. I've developed scripts for educational videos and online content and written a children's television show in college that won a College Emmy award (okay, that was 20 years ago). On top of that, I thought about the amazing people in my network who work in film and video, as animators, musicians and performers who might be willing to help get something off the ground.

Chris encouraged me to just write, come up with something awesome, and worry about the details later. So I did. Then I quietly and nervously sent it to Jordan Sadler and Lisel Wenzke Hartmann of Communication Therapy to see what they thought, from the point of view of a practitioners. I was thrilled when they liked it so much they said they wanted to work on it with me.

So now we have an official project that's taking shape and gathering steam:

Firefly and Friends, a series of videos designed to teach social smarts to kids ages 6-10 using humor, story and music.

Think of it as The Electric Company for the bright-but-quirky set.

Our goal is to write and produce one pilot episode that we can use to convince a sponsor or production partner to fund an entire series. At some point, I'll ask you to kick in a few bucks to help us do this, but not right now.

In the mean time, please check out the website and follow our blog to keep tabs on our progress. Share the link with people you think might be excited to know that we're doing this*.

And please comment and let me know what you think: Do you have potential Firefly and Friends viewers in your family? Would you buy a DVD like this? Educators, would you use this in your classroom?

Firefly and Friends is a bit of a long shot, maybe even a big long shot. But for the moment I'm trying to ignore that fact and just keep working bit by bit as if it's really going to happen.

Maybe, with your help, it will.



____________

* Especially if those people happen to include any experienced video producers located in the Bay Area. Or rich people. Very, very rich people.

Friday, August 6, 2010

Getting it

Today's post on The Thinking Person's Guide to Autism, How Do People React When They Learn Your Child Has Special Needs? by Emily Willingham is terrific and I suggest you read it.

When she writes about how it feels to meet professionals and other parents of children on the spectrum who "get it," I was reminded of an experience I had two years ago when I crashed the BlogHer conference in San Francisco, where a then-new friend of mine, Susan Etlinger, was moderating a panel of special needs parents who blog.

After the panel, I accompanied a group of women from the panel and others out to dinner in Chinatown. All of them were parents to kids with special needs or professionals who worked with that population.

I hadn't met any of them before, except Susan, but I remember thinking how easy the conversation was, how it felt I had known these women for years, how grateful I was for being people that didn't need much of an explanation of my kid or our life and how I could just get to the really funny and interesting bits right off the bat.

And mostly I felt really fortunate that these women, who obviously had all been close friends for years and years, invited me - a random newcomer - to join them at dinner. I wrote about it at the time, referring to them as My New Old Friends.

Only much later did I find out that the group was not a bunch of longtime friends (well, a few were) but that many in the group had only just met in person for the first time at that conference.

And that's the thing about finding people who share your story or some important thread of it. There's no audition process, there's no probationary period where you have to prove yourself worthy, there's no casual acquaintance stage.

You're in. You're with us. We get you. As Emily says, "We get it."

I'm thinking a lot about those women this week and others to whom I feel close from our online connections because many of them are convening again and BlogHer in New York right now. I wish I were there to tell them all in person how much they mean to me, but a solo trip was neither in our plans nor in our budget this year.

I know that in their group this week, at their gatherings and at their table, there will be no newcomers and everyone is a longtime friend, even if they are meeting for the very first time.

Sunday, August 1, 2010

What's new?

Hello? Is this on? Hello?

Regular readers may have noticed posts have slowed to a drip lately. But that doesn't mean that our lives are uneventful.

Ben finished Kindergarten and is now, in the parlance of his schoolmates, "a grader." The year ended with, among other things, a tearful goodbye between him and his amazing aide who (sniff) is leaving next year to complete her master's degree. She cried and hugged him. Ben wiped away her tears and told her, "I love you."

He's running with the NTs this summer at his former Montessori school with several kids he knew from preschool. When he arrived, they actually jostled and shoved each other out of the way in order to be the first to hug him. The staff have all remarked on how much he's grown, matured and mellowed out since they saw him last summer.

Not every moment is rosy, of course. I could have done without the 3 a.m. visit to the ER with croup, for starters. But there have been way more ups than downs and no classic summer regression and that's pretty damn good.

There's a small group of parents-writers-advocates extraordinaire that I've had the great fortune to get to know over the past couple of years who have started a blog and book project called The Thinking Person's Guide to Autism. They're publishing amazing essays and no-nonsense resources - a new one every weekday! - and I'm honored to have a guest post on their site. I've written about the joys and complications of having a child who "passes" for typical.

Over the last several months, my focus has shifted from blogging to a project that's in the early stages: something I promise to write about very soon.

It's a leap of faith, inspired by the mindset that is captured in this post by Dave Holmes that I found via my Twitter feed (where people you hardly know point you to great content from people you don't know at all!) He nicely nails the necessity of being aggressive with your big ideas, even if it seems crazy. And this is a mindset that's quite foreign to me at this stage in my life.

Pretend you’re giving it all up and going back to school in a year. Act like you have one year to make it work before you give up and try something else. What haven’t you done? Where aren’t you being aggressive enough? Go do it and embarrass yourself with your pushiness- after all, you’ll be doing something else in a year anyway, so who cares what people think? Push until you feel uncomfortable, and then double it.


The trick is: when you do that, good things start happening right away, and you get yourself to a point where you can’t imagine giving up, one year from now or ever.


Good things are happening. Stay tuned.

Wednesday, July 14, 2010

One of the guys

Several families from Ben's kindergarten class and his teacher got together last weekend for a summer play date at a nearby park.

One of the boys brought a football and instigated a six-year-old's version of touch football. This consists mostly of running and chasing each other while someone holds the ball. They also spent quite a bit of time in a huddle, the purpose of which seemed to be to come to consensus on a team name.

One of the boy's dads joined in, throwing perfect spirals a gazillion feet in the air while all the boys waited to try to catch the ball. Then, they ran and chased the ball carrier with wild glee and shouted for the dad to do it again. And again. And again.

football3.jpg

Ben was right there with them, in the mix, one of the guys.

football1.jpg

I'm treasuring these moments, and especially these other boys, who for the time being, accept him so fully and unreservedly as one of their pack.

football2.jpg

(Ben is the one in the brown shirt and the denim shorts and the Red Sox cap. Simmer down, Yankees fans. He picked it for the B.)

Tuesday, June 29, 2010

Using the force

Back in March, we had Ben's yearly IEP review. His team agreed that he was doing well on all of his goals. He was working above grade level academically and didn't require any curriculum adaptations or academic support. We agreed that he no longer needed occupational therapy since his handwriting had progressed to the typical level for a kindergardener. He was doing well in his social skills group, demonstrating an understanding of social thinking concepts and starting to generalize them to other settings.

But there was one blemish on an otherwise stellar report. Ben was having a hard time controlling his emotions, and when anxious or upset, he had a tendency to bolt from the classroom, shout inappropriately, or hit classmates and even adults. This was happening, at the time, an average of once per day.

We needed to come up with a way to help him and his team suggested we create some type of incentive system specific to Ben, separate from the existing stars and stickers that the teacher was already using for the class.

An incentive system seemed like a good idea since he had responded well to a system we created at home in which he receives wooden beads in a jar for good behavior and loses beads for poor choices. He collects the beads and trades them in (according to an improvised currency exchange rate set by me and Chris) for new DVDs and other in-demand items.

beads.jpg

So after thinking through several different possibilities, we came up with The Light Saber Chart.

The light saber chart - inspired by Ben's devotion to Star Wars mythology - is a daily chart on a narrow sheet of paper with a light saber for each period of the school day. The top features a picture of Yoda, with the quote, "A Jedi uses the force for knowledge and for defense, never for attack."

The bottom of the chart describes what it means for Ben to "use the force." He has to 1) keep hands, feet and other objects to himself 2) stay in the classroom with his classmates 3) ignore kids who are bothering him.

If he used the force during a period of the school day, his aide would circle a light saber. If he wasn't able to use the force: no light saber. But - and this was important to us - he had several more chances during the day to succeed. We didn't want an all-or-nothing system, for fear he would give up if he, for example, had a bad morning.

The connection to the Star Wars stories and the frequent positive reinforcement worked wonders. Pretty soon, he was coming home each day and pulling his chart out of his backpack to boast about his 6-light saber day.

"Mommy, guess what! I used the force today SIX TIMES!!!"

These kinds of days at school translated into beads in his jar, so the incentive systems were connected.

By the time we finished the school year a few weeks ago, incidents of challenging behaviors had gone from 1 per day to 1 per week, which I would argue, is about par for the course for a 6 year old boy.

These types of incentive systems won't have the same effect for every kid, but for Ben at least, it gave him a reason to be excited about his success and to put it into terms that connected to a story, to something he's passionate about right now: the ways of the Jedi.

And because it helped him make an emotional connection to his own success, I didn't feel it was "bribing him to be good." Instead, framing good behavior as "using the force" gave him meaningful, intrinsic motivation rather than just saying he had to "behave" or "be nice."

Ben is at a "mainstream" summer camp right now. And while it's a familiar place with some familiar faces, he doesn't have an aide or specialized support. I've been more than a little nervous about it.

Luckily, it turns out his summer camp teacher is schooled in the ways of the Jedi. Chris filled her in on how Ben is learning to use the force and she responded, as if on cue, "Ah, like a padawan*?"

I sense that the force will be with us this summer.

YodaChart.jpg


* Jedi in training

Tuesday, May 25, 2010

Reading aloud

For the past few nights, Chris has been reading the book Stuart Little to Ben at bedtime.

This may not sound like a big deal, but it is.

Unlike most kids his age, Ben has never allowed us to read chapter books to him. He would rather read by himself, or listen to audio books while he follows along in the text. He seems to want control over the experience.

Part of if might be that he prefers to hear a story and see the words at the same time and that's difficult when reading chapter books in bed. Part of it might be that he craves (ahem, requires) completeness and can't bear to stop mid-story.

Another reason might be that his because of his hyperlexia, reading - the very act of decoding text - has always been a comforting and regulating activity for him, his go-to strategy for decompression. He has no need to let someone do it for him, just as I wouldn't ask a friend to get a massage so I could relax.

When he does ask us to read to him, it's usually a book that has become a bedtime ritual, like A Child's Garden of Verses. He listens to it, drifting off, as if it were an incantation in Latin rather than a story.

And all this while, I've wondered, despairingly, if we'd ever read chapter books together, if I'd be able to share all those books that meant so much to me as a child.

My second grade teacher, Mrs. Casey, read aloud to our class every day. We may not have realized it at the time, but she had impeccable taste in literature and introduced us to the cannon of essential children's books.

That year, we made our way through Charlie and Chocolate Factory, James and the Giant Peach, Charlotte's Web, Stuart Little, The Lion, the Witch and the Wardrobe, the Homer Price stories, and many more.

These books have everything an eight-year-old desires - humor, fantasy, danger, the grotesque, even ideas about life and death. Every day, we all sat cross-legged at her feet silently listening, waiting to hear what happened next, craning our necks as she stopped to show us the occasional illustration.

We all cried when Charlotte died and when Aslan was horrifically defeated by the White Witch. We all gasped when the birds lifted the peach over the ocean and when the glass elevator went through the roof.

Hearing these books read aloud was easily one of the highlights of my early education. Unfortunately today's standardized tests can't possibly measure the value a child gets from hearing beautiful language spoken aloud and being exposed to the often complicated ideas in great literature.

So, I'm crossing my fingers that reading chapter books at night will finally catch on, as much for my sake as for Ben's. And when it does, I have Mrs. Casey's reading list and I'm determined that we'll work our way through it book by book.

Wednesday, May 19, 2010

Career counseling

I used to worry about not being able to have conversations with Ben, wondering when - no, if - we would ever just talk. But in the last couple of years, Ben's language skills have progressed to the point where we can have fairly sustained, back and forth conversation.

He still struggles much of the time and I'm not saying it's like My Dinner with Andre around here, but there are times now where we really do just talk.

Like last night while getting ready for bed.

Ben: Mommy, I wish I could go on a real adventure.

Me: What would you do on a real adventure?

Ben: Warrior things. I would fight bad guys. I would fight in the Civil War.

Me: The Civil War was a long time ago. And warrior things are really for grown ups. So if you want to be a warrior, you can do that when you grow up. You can join the Army. People in the Army protect us.

Ben considered this for a moment as I continued, trying to be matter-of-fact, knowing - hoping - that he'd forget this conversation long before he reaches the age to enlist.

Me: But when you're a warrior, or solidier, you have to live far away from home and I would miss you.

Ben considered this again. Then I heard a familiar tremble in his voice, the one he gets when he's on the verge of tears.

Ben: But, mommy...What if there's a bad guy...what if I get killed?

Me: Yes, being a warrior is very dangerous.

(beat)

Ben: I think when I grow up, I'll have a job in a big office.

Tuesday, May 4, 2010

A poetic take on Hyperlexia

Occasionally, the Google Alert I've set to inform me when someone writes about Hyperlexia turns up something notable or interesting. But rarely do I come across anything as delightful as this moving poem by Edward Byrne, a poet, professor, and editor of the Valparaiso Poetry Review.

AUTISM: HYPERLEXIA

My son eyed the large and wide print
. . . . . stenciled across an interstate billboard.

At three, he’d already taught himself
. . . . . to read over a year earlier, even before

he could tell anyone how well he knew
. . . . . to spell words we had never heard him

say. My wife and I were surprised
. . . . . once again by the way he spoke terms

learned through no method we know,
. . . . . on this day reciting lines of a highway

advertisement shining under bright
. . . . . summer sunlight, its bold gold and red

lettering—Family accommodations,
. . . . .
adventurous activities, and exhilarating

attractions ahead—sending a message
. . . . . to tourists that now seems meant more

to us as a lesson we only discovered
. . . . . somewhere much farther down the road.


—Edward Byrne


Exhilarating attractions ahead, indeed.

He kindly gave me permission to share this here. The poem is featured in the Spring issue of the Bellevue Literary Review. You can visit Edward's Byrne's blog, One Poet's Notes, to read more and to leave a comment about how much you like this poem.

Sunday, April 4, 2010

Untangling

By now, many of you have heard the story...

Once upon a time there was a blogger named Smockity who took her kids to the library one day and found herself next to an autistic girl and the girl's grandmother.

Smockity went home and wrote a blog post about how she considered, "jabbing a ball point pen into her eye" rather than endure the autistic girl's unusual behavior and grandmother's indulgence of said unusual behavior.

I'm going to spare you a link to the original piece (it's gone now anyway) but as you can guess, lots of other bloggers including JennyAlice and MOM-NOS and Jean Winegardner and many others - responded with their own posts about tolerance and compassion and giving kids and their families the benefit of the doubt. A tsunami of backlash eventually prompted Smockity to write an apology.

I don't need to pile on. These posts are insightful and heartfelt and echo my feelings on the subject.

However, the whole incident did get me thinking about situations where I feel particularly self-conscious, where I feel like onlookers like this Smockity woman might be thinking that Ben is spoiled or a badly-behaved brat due to my permissive or inept parenting.

One of those situations is when Ben is perseverating.

Perseverate: (verb) To repeat something insistently or redundantly.

There are probably as many ways to perseverate as their are kids who do it. It could be opening and closing a toilet lid, or opening and closing a mailbox, or watching the same 5 seconds of a TV show over and over and over, or lining up objects, or asking the same question again and again.

Perseveration probably functions in a few different, but related, ways.

Repetition can be calming, and a way to block out unwanted stimulation. It can produce the OCD-related high of compulsion completion, as Squidalicious describes. It could be the result of pattern seeking. It could be a desire to exert control on a world that often seems chaotic and unpredictable.

One of Ben's current perseverations is to demand that the people around him recite or act out various scenes from books or movies. This is not the hey-let's-play-robin-hood imaginative play. This is an insistent, almost anxious barking of stage directions and lines, often to befuddled friends or family members who don't realize they've been cast in a very SPECIFIC production.

Or it might happen in a public space, where passers-by might not understand how it could be really important for a boy and his mom to stage a scene from Toy Story 2 in a grocery store or museum gift shop.

I'll acknowledge that this particular fixation is a lot easier to disguise as typical play than things like hand flapping or banging objects together. But like most perseverative activities, the problem is less the activity and more what happens when the activity is interrupted.

Redirecting and interrupting perseveration is a delicate task.

I think of dealing with perseveration as trying to untangle a bunch of small fragile necklaces that have become knotted up with one another in a jewelry box.

You can't simply yank them apart or the tiny chains will break. You have to patiently, gently tease them apart. It takes patience, focus and loving perserverence. While you're doing it, you feel like you're not making much progress, and sometimes even making it worse by getting the chains in more complicated knots.

I can't tell Ben, "Just STOP IT NOW!" when he gets into a perseverative mode because this will result in a much more difficult problem than a fixated child.

I normally allow him to continue what he's doing for a bit, but try to find an opportunity to get his attention - I ask him to press the "pause" button on his nose - to tell him calmly that that this isn't a good time for pretending so we need to find a place to say "to be continued..." in the story, or that we can tell the story for two more minutes and then we're going to switch activities.

It doesn't always work the first time. But after a few (or several) attempts, he'll usually agree to the deal. Other times, I can interrupt his intense focus on books or objects by saying, "Ben, we're going to switch gears in 5, 4, 3, 2...okay: switch gears."

I think many of you probably have developed your own strategies of gentle, not so immediate or abrupt, redirection of perseverative activities. You know what it looks like when the chain links are yanked apart and it's not pretty. You know that spending a few extra minutes to gently untangle is so much better than the alternative.

But to an outsider like Smockity, these strategies probably just look like indulgent, permissive, wimpy parenting: "Why doesn't she just tell him to knock it off?" "Who's running the show here?" "Why can't she control her kid?"

The truth is that some chains can withstand a little yanking, but others can't.

Jean Winegardner says it much better, and without the tortured jewelry metaphor, so I'll leave you with this thought in honor Autism Awareness Month.

...I ask that next time you see a child acting unusually, or next time you see a person who is acting in a way that you consider inappropriate, take a minute to consider that you don't know the whole story. Understand that there might be factors at play that you aren't aware of, whether they be behavioral, emotional, medical, or something else. Remember that some disabilities are invisible. But mostly understand that the wonderful diversity of all of our members of society makes our world as a whole better.


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Thursday, March 25, 2010

Just say thank you

So I'm picking up Ben from school today and I end up chatting for a moment on the playground with the dad of one of Ben's classmates.

The dad is one of those guys who has a big friendly handshake and a big friendly smile. He's the guy you want manning the grill at your backyard BBQ, the guy you want to show up to help you change your flat tire, the guy who probably routinely says, "The more the merrier!" and means it.

And his son "J" seems like one of the most easy-going, friendly kids I've ever seen. It's no wonder J was the first kid that Ben identified as his friend when he started kindergarden last fall.

J's dad and I talked about the nice weather returning, how we should plan a pot luck picnic for the class at a park this spring, and what our kids were up to.

He mentioned that J was starting baseball this week.

"Would Ben ever be interested in playing baseball?"

Okay. What I should have done is accept this conversational volley as the open door it was meant to be. What I should have said is, "I don't know, but I heard Ben hit a home run in the baseball game in PE this week! I'll ask him!"

But instead, I rambled on about Ben not being quite a team sports kid yet, that he didn't really understanding the give and take that team sports requires. That we were doing gymnastics and swimming this summer, but maybe stuff like baseball and soccer were still a bit beyond him.

Then I felt that eyes-glazing-over chill suddenly go through the air.

And then imagined the sound of my hand slapping my forehead.

Why? Why? Why did I blow this?

Why did I feel compelled to spell out Ben's differences for this guy? It's probably true that Ben isn't ready to be on a baseball team, but who cares? This guy was nice enough to ask.

Oh, and did I mention that he's the coach of his kids' team? The coach of a kids' baseball team was asking if Ben might be interested in baseball? I don't want to say he was trying to take Ben's cleat measurements, but it was clearly an invitation of some sort.

I think sometimes we get so wrapped up in our kids' special needs and differences that we observe them with almost clinical precision. We start to think about our kids in terms of their IEP goals: Is Ben using suggestive rather than commanding language when making a request of peers in 4 out of 5 observed attempts?

To which a lot of people might just say, "Oh well. Aren't a lot of six year olds bossy?"

And maybe we're so used to advocating for them and making others aware of their needs and being on alert that we go into "full disclosure" mode out of habit.

I need to remember that sometimes, people see Ben and don't just see his differences. They see a playmate, or one of the kindergartners in room 6, or a kid who could be on a baseball team.

And that's what I want, after all.

That, and a chance at a do-over so I can go back and accept this man's lovely overture with the grace and gratitude that it deserved.

Sunday, February 21, 2010

en garde

Ben is not a dabbler. He is not a generalist. He is a serial expert. His interests come in waves and they seem to engulf his brain completely.

Ben's current obsession is sword fighting.

Every day, for example, several times each day, we re-enact this scene from the 1938 Errol Flynn version of Robin Hood.



(This version has subtitles in French for some reason. We prefer our subtitles in English, at least for the moment. )

I play the Basil Rathbone role, plus any other characters. Ben is Errol Flynn of course.

But in our homegrown version, he's actually not Robin Hood, he's Ben. That's because every adventure story we act out is a chapter from "The Adventures of Ben," a mash-up of three different versions of Robin Hood, Star Wars, and an obscure animated version of Babar.

In the Adventures of Ben, Ben the hero fights the villain, Rex. Rex has a host of nameless henchmen. "Chris" and "Christa" are Ben's loyal compatriots (loosely based on Little John and Will Scarlet). Sometimes there is a wise master who dies midway through the story and talks to Ben as an invisible spirit. This character is based on Obi Wan Kenobi, but is always named, "Martin" after Martin Luther King, Jr.

Side note: One outcome of an Oakland public school education and no solid theology at home is that you pretty much grow up assuming Martin Luther King, Jr. is God.

I can't begin to describe how tired I am of sword fighting and light sabers, of prison rescues and storm troopers, of the same scenes over and over again. But I can't pretend I didn't play a part in encouraging this.

It starts out as something that seems like a positive - even a breakthrough. Maybe it's inspiring imaginative play or creativity, maybe it's something that connects your child to other kids and gives him an age-appropriate conversation topic. Maybe it's just different than the current obsession. ("Great! Something other than trains!")

You start to reinforce it. You start to help him explore it because you love seeing him excited and engaged in something new.

Pretty soon it takes over. Pretty soon it starts to seem less like an interest that connects him to others and more like another perseverative ritual that gets in the way of real interaction.

You wait to see if it will burn out, or just come and go over time.

But this particular obsession, unlike trains, is focused almost exclusively on fighting. If all he's thinking about is defeating evil, does he take that combative mindset to school?

Based on an increase in incidents with other kids at school over the last few weeks, my sense is that it does.

Kids have to explore conflict as they grow up, and I know that boys tend to do that physically. I get that. I'm okay with that.

But how well is Ben able to detach from the emotions of the pretend story? After all, Ben and kids like him are not exactly Jedi masters of their own emotions.

I wonder if the aggression he acts out in the story continues to reverberate around his brain, like an echo. And does his body respond to those mere echoes as real?

So I've started to explore distractions and alternatives. I'm thinking about better ways to set limits without turning the obsession into the even more attractive forbidden obsession. I'm trying to find ways to talk about pretend versus real life.

And so far, it's all been pretty unsuccessful.

If you have any ideas, let me know. I'll either be on the Death Star or in my foreboding castle, with my sword and light saber, and my army of henchmen and storm troopers.

Feel free to drop by anytime.

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Thursday, February 11, 2010

A visitor from the sun

So far, 2010 has been off to a rather dreary start.

For one thing, we've had days and days of rain, punctuated by oppressively gray days with no rain, and the rare and fleeting sunny day that serves as a cruel reminder of what we've been missing.

I don't ski, so unlike many Californians, I don't become giddy with visions of powder on the slopes when the rain falls. I work at home in a rather dark downstairs room that feels like a cave on days like these.

And the weather is amplifying the general malaise-y feeling I have of being stuck.

But last Friday evening I was momentarily jolted back into good cheer when the sun returned; or more accurately, when an ex-pat from the sun paid us a visit.

I'd better back up a bit.

Two years ago, some friends on our block returned from a trip to New York and brought us a DVD: Gustafer Yellowgold: Have You Never Been Yellow.

Gustafer Yellowgold is a very unusual and delightful character and the creation of singer-songerwriter-artist Morgan Taylor.

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Morgan writes and animates songs about Gustafer, who came from the sun to find a cooler place and ended up, appropriately, in a lake in Minnesota. His friends include a pet eel and a pterodactyl with exquisite fashion sense. His hobbies include eating pine cones and finding creative ways to crush desserts.

If none of that makes sense, it really doesn't matter. His songs and drawings are so beautiful and engaging, so whimsical and dreamlike that you, like us, may convert to the Church of Gustafer after just one viewing.

Gustafer Yellowgold is art that an entire family can enjoy together, and that's hard to find these days.

Sure, there's great entertainment out there that engages different ages on different levels. Pixar is masterful at this. But there's something about Gustafer that doesn't require narrative segmentation, as in: The kids will love this and (wink, wink) here's a little something for you grownups to enjoy.

After becoming quickly enamored with Have You Never Been Yellow? we bought Morgan's two other Gustafer DVDs, we went to a live performance in a local record store, and Ben even dressed up as Gustafer for Halloween two years ago.

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The DVDs are ideal for hyperlexic kids, since the lyrics to the songs are part of the illustrations and kids can read along. The DVDs even include a "sing-a-long mode" where the vocal track is removed - karaoke style - with the lyrics showing on-screen.

Morgan's wife Rachel Lozack told me that more than one family with a child with autism has commented on how attached their child has become to Gustafer.

That might be because the characters' expressions are very simple, and because there's no dialog - only simple animations with minimal movement. This probably makes it more accessible to those who might have challenges processing a lot of information at once.

So, back to last week.

When Chris found out that Morgan might have a free evening on an upcoming west coast tour, he schemed with the same friends on our block who introduced us to Gustafer in the first place to host a house concert where we and a bunch of friends could enjoy Morgan's music in an intimate setting.

It worked, and last Friday, Morgan, his wife Rachel and their little boy Harvey pulled up to our house in a van with Gustafer's face emblazoned on the side. Morgan performed for a group of very appreciative and captivated Gustafer initiates.

Ben got to sing a little of his favorite song for Morgan before the show even had the thrill of being the announcer. "Ladies and gentlemen! Boys and girls of all ages..."

I urge you to go to the web site or YouTube and experience Gustafer's world yourself, especially if, like me, you could use a little extra something from the sun right now.

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Tuesday, January 12, 2010

Steps. Maybe forward.

Last week I told you about having a helpless feeling about Ben's recent struggles with aggression and impulse control.

In the midst of that helplessness, a thought occurred to me.

The first incident that was unusual in its intensity and duration (relative to his behavior in kindergarden so far) happened not long after Ben started taking some daily asthma medication. It's a corticosteroid called Flovent.

After his hospitalization for an asthma attack, the doctor suggested that he remain on this daily low-dose preventative over the holidays when catching a cold - his asthma trigger - was likely.

While behavior changes aren't part of the official list of side effects for this medication, I found a convincing amount of of anecdotal information (hey, it's the internet, after all) about children behaving more aggressively and impulsively while on the medication.

The next morning we skipped Ben's "puffs" in the morning and have kept him off the medication - with this pedicatrician's approval - ever since.

And Ben has had six good days in a row.

(Please don't jinx it. Please don't jinx it. Please don't jinx it.)

I don't mean to suggest that Flovent was causing Ben's challenges of the several weeks. He was on a low dose - less than half the normal amount. I do wonder, though, if it was an exacerbating factor. He seemed more anxious, high strung, and prone to switching into flight or fight mode at the drop of a hat.

Several times at school, when given a chance to chill out, he would appear calm and give all the right answers to the questions that one uses to assess whether the storm is over. He appeared to be a kid who was ready to control his behavior and rejoin the group.

Then, as soon as he would return to the classroom with all its unpredictability, the anxiety spikes and resulting aggression quickly returned.

But, this week, he seems to have his emotions under more control. He still has moments of anxiety and acting out, but they are so much milder and he is able to think his way out of them.

Case in point: This week, Ben has learned what it means to "ignore" another child - in a good way. I gave him the suggestion and he's used it three times this week to overlook annoying behavior by his peers.

We still need to work on the nuance. He loudly and dramatically announces, "I'm going to IGNORE you, [child's name]!"

At least he's getting the idea.

And in fight or flight mode, he isn't able to make that kind of choice. Not by a long shot.

Trying to reason with Ben once he's in that mode is like trying to reassure someone with a deathly fear of heights who is standing on a tall ladder, "Just relax. You're not going to fall. Pull yourself together."

(Which is why his challenges are different than the manipulative or attention-getting behavior of typical peers. But, ho nelly, that is a whole other post.)

So we've agreed that the Flovent will come out only when he has a cold and we'll watch and wait and to see what patterns might emerge.

Tuesday, January 5, 2010

So this must be the one step back

I normally don't write when I'm in the midst of an emotional situation. This isn't designed to be my diary or a place for me to process my feelings in public view.

I tend to write after I've had some analytical distance from an event, hoping to provide some Big Insight that might also help one or two of you, or maybe just validate some Big Insight you've had yourself.

I tend to write after something good or funny has happened, so I can celebrate with a community who understands that a small step forward can feel like a leap.

And I tend to write for that mom who is frantically googling Hyperlexia or Asperger's at 2 a.m. looking for answers and reassurance that the world has not actually ended. Maybe that mom will find a story about Ben telling me "I love you" on Valentine's Day and feel better, or read about a particularly creative use of echolalia and get a good laugh.

But right now, I'm In The Middle Of It.

And I'm going to write anyway.

After a stellar start to the school year, Ben has had several discouraging days at school. Not that many: a string of them before winter break and then on the first day back.

Many, but not all, of the episodes start when he misses out on something the class is doing. He explodes, and can't seem to pull himself together.

He's bolting out of the classroom.

He's shouting insults and teachers and students.

He's hitting, shoving, and even in one case, biting other students.

That one landed him the principal's office for the first time. (How's that for a milestone?)

It's not like he doesn't have support at school. There are good people who are on his side, trying to figure this out.

And he's able to talk about the episodes with us at home more than he's ever been willing or able to do in the past.

Some of his reflections sound like he gets it and that he's sincerely sorry, but then in the midst of reflection, he'll say something like, "I never want to be anyone's friend anymore." "I don't want to be YOUR friend anymore either." "I'm going to be SO naughty that I crash the WHOLE WORLD.""I"m going to teach [insert child's name here] a LESSON!"

My worst fear is that these self-defeating thoughts simply create a vicious, inescapable cycle in which he doesn't believe he can do well.

My second worst fear is that these behaviors will stamp out the tiny, green shoots of real friendship that have started to grow with some of his classmates this year.

At our parent-teacher conference last month, his teacher told us that he is doing well academically. He's doing the work, mostly unprompted. It's the lack of impulse control that causes the struggles. He doesn't want to take breaks because he doesn't want to miss out on what the class is doing.

I know so many of you have faced this and so much more. So many of you have looked at your phone every five minutes waiting for The Call From School. So many of you have waited until your child wasn't looking to let the tears come.

Anne Lamott says there are just two prayers:

"Thank you, thank you, thank you." and

"Help me, help me, help me."

So, this is where I am right now, this moment. Saying a lot of the second one, and hoping that today is a good day.