Spirited away

Hello team,

I just wanted to touch base after Bud’s difficult day today to share my perspective on what we may be seeing.  I apologize for the length of this e-mail, but I think it’s critically important that we’re on the same page as we head into the rest of “spirit week.”

I picked Bud up after school today because, after hearing reports, I was nervous about leaving him with a sitter.  He has been calm this afternoon, but he is also exhausted.

I have a hunch there were two important factors at play today – 1) emotional dysregulation in the midst of the unpredictability/high energy of a “theme” week at school and 2) scripted echolalia that often takes over in the face of emotional dysregulation.

1) Emotional Dysregulation. 

Bud is often (I might even say always) overwhelmed by “theme” days at school.  “Fun Day” is never very much fun for him.  As a child who needs predictability and structure to succeed, he is thrown by the break from routine and the excess energy that accompanies special days.  Even when he is looking forward to a special day, the reality of it is often overwhelming for him. 

I wrote a piece about Bud’s emotional dysregulation back in 2005, which you can find here.  Though the piece is more than six years old, it describes a dynamic that still exists.  When Bud is faced with a theme day, the unpredictability triggers a warning of danger for him.  While other children see teachers dressed in pajamas and classmates wearing trash bags as a fun diversion, Bud sees it as a threat – i.e., if the rules about what people wear to school are no longer at play, then what other things that he has come to rely on might also be negotiable?   

In the face of this, Bud spends all of his emotional reserves managing a fight-or-flight reaction.  What appears to be a complete disconnect on his part is actually hyper-vigilance.  He is so anxious about other potential unexpected occurrences that he turns inward to create an inner environment that is predictable, knowable, and unchanging. 

For Bud, this inner environment almost always takes the form of a television show or website that he knows and loves.  He invests his energy in that scripted environment, which gives him a sense of control and helps him manage the actual environment, which, as I’ve said, he perceives as a threat.

As you might imagine, when this happens, he has no emotional reserves left – no energy at all, really – to expend on any of the other things that we ask him to do every day at school.  In the language of SCERTS, this makes Bud “dysregulated” – or, unavailable for learning and engaging.  When he is in that space, he is totally unable to engage in anything until he can first reestablish a sense of emotional regulation and safety – which, again, for him, means predictability and structure.

This leads to…

2) Echolalia

As you know, spontaneous, constructed language is a challenge for Bud in the best of circumstances – when he is fully regulated, it is still hard work.  When he is in the throes of emotional dysregulation, it’s almost impossible.  In those situations, Bud almost always defaults to echolalia – memorized scripting.

A few things are important to note about Bud’s echolalia:

• He is EXTREMELY skilled at using scripts.  Unless you know it’s a script, you often won’t know it’s a script.
• When he is scripting, the actual meaning of the words is usually irrelevant.  He is usually using his scripts to convey a feeling.  The words themselves are empty place-holders.
• Bud’s echolalia is mitigated.  In other words, he swaps out words from the actual scripts and replaces them with words that reflect his current circumstance.  HOWEVER, it’s important to remember that it is still a script, and as such, it is meant to convey an emotion.  Though, to the rest of us, the words may imply meaning, they are still just empty place-holders for him.

An example, which I hope will help this make sense:

A current script that Bud uses is “I’m gonna go read in the bathroom.”  This is a phrase that Bert uses with Ernie when Ernie is distracting him and he has simply had enough.

Bud frequently says “I’m gonna go read in the bathroom” when what he means is “I’m tired of you trying to impose your agenda on me.  I want to do what I want to do, without you interfering with my plan.”  It’s important to note that when he says “I’m gonna go read in the bathroom,” he is not interested in reading or in going to the bathroom.

As you might imagine, though, someone who does not know this script might spend a lot of energy trying to engage Bud in choosing a book and discussing appropriate locations for reading, or they might decide that he is saying that he needs to use the bathroom, setting of an entirely different kind of negotiation.

To further confuse things, it is equally likely that Bud would mitigate this script, so that instead of saying “I’m gonna go read in the bathroom,” he might say, “I’m gonna go read in the cafeteria,” or “I’m gonna go eat in the bathroom,” or “I’m gonna go sleep in the kitchen.”  The rest of us can only recognize these as variations of the original script if we know the script well enough to recognize the tone and prosody and cadence of the script.  Nonetheless, ALL of these statements inevitably mean the same thing:  “I’m tired of you trying to impose your agenda on me.  I want to do what I want to do, without you interfering with my plan.”

This brings me to today, which was the second consecutive theme day.  It only occurs to me now that theme days in elementary schools happened only on Fridays, so by definition they were always a week apart, which gave him recoupment time after each one.  This structure is likely a lot more challenging for him.

Bud was VERY excited about pajama day.  In fact, he spent the whole weekend talking about it and planning for it.  He invested a great deal of emotional energy planning for it, and his plans created the structure and predictability he needed to successfully manage the day.  He did not have the same plan in place for recycle day, and I believe his emotional well had run dry by the time he realized that he was facing another out-of-the-ordinary (and so, fight-or-flight) day today.

As a result, he focused inward, imposed an internal script to restore predictability to his world, and reverted to scripting as his primary means of communication.  Some of the reports about things he said today were very troubling to me and didn’t sound like him at all, so I tried to talk to him about it tonight.  Here’s what I gleaned:

1.  I asked Bud if he talked about chasing someone with an axe.  He answered (happily – one of the beautiful things about him is that he is rarely cagey about such things), that he had.  I asked what that was from and he said it was from the woodsman from Little Red Riding Hood – “he grabbed his axe and started chasing the wolf.”  My hunch is that whatever emotion that portion of Little Red Riding Hood speaks to for Bud was the emotion he was trying to convey with those words.

2.  I asked him if he knew about shooting.  He said, “Yes.  Shooting stars.”  I asked if he knew any other kind of shooting.  He thought for a minute and said “Shooting arrows. It’s a sport.”  I pushed further – what else can you use to shoot?  What other kind of shooting is there?  He said, “Shoot something from the Oregon Trail” (a computer game they played at school last year).  I asked what shooting they did and he said “hunt buffalo and kill rattlesnakes.”  I asked what else people use a gun for and he said “Use guns to shoot rocks into the earth like a meteorite.”  I continued to ask about shooting from a number of different perspectives to see if he had any sense that people sometimes use guns to shoot other people, but I got no information that led me to believe that’s in his frame of reference at all.

For that reason, I simply find it hard to believe that he said he was going to shoot someone in the cafeteria.  I do believe that whatever he did say was interpreted that way – but I also think that if he said something about shooting, the words were meaningless place-holders meant to convey an emotional state.  They were not spontaneously constructed language that could be interpreted literally.  The words themselves were as empty as “I’m gonna go read in the bathroom.”

That being said, though, I am not aware of any script Bud has that involves the word “shoot.”  However, twice this afternoon, Bud said “I’m going to shoo them away.”  He was talking about the neighbor’s dogs, but because he used the same cadence and inflection both times, it was clearly a script – and I have to wonder if it’s the same script he was using in the cafeteria today, which may have been mis-heard and misinterpreted, since, sadly, we adults have a very different frame of reference for the tragedies that can occur in school cafeterias these days.

I imagine that we may see some of the same behaviors from Bud as we head into the rest of spirit week, and I think it’s a good idea to have a game plan.  My suggestions:

• I’ve written a brief social story (attached).  I’ll review it with him, and suggest that it might be a good idea to start his day at school with it and revisit it throughout the day as his dysregulation emerges.
• Predictability and structure can make all the difference in the world.  I know he has a schedule for the day, but I suggest breaking it down into much smaller pieces.  Break “reading” into a series of steps that let him know exactly what he can expect during reading time.  It often helps to give him a checklist that he can physically check off as he completes each step – holding it in his hands and checking it off himself gives him a sense of control.
• If he is scripting – or if he’s saying things that don’t seem to make sense – ask “What is that from?”  If he doesn’t answer, just pick a show – “Bud, is that from Sesame Street?”  He won’t be able to resist the urge to correct you (“No, it’s from Dragon Tales.”)  Once he has identified it as a script, it gives you a point of connection from which to build.  Ask him who said it, what made them say it, and how they were feeling when they said it.  It will help you help him talk about how he’s feeling in the moment.  It will also help pull him out of his inner scripted world and into your world.
• If he says anything disconcerting or unusual, please, please, please, stop what you’re doing and write it down verbatim for me.  It is not at all helpful for me to know “he said something about hurting people” and very, very helpful for me to know “he said ‘poison them, drown them, bash them on the head’” (Cruella de Vil – which means he was feeling an excess of emotion and he didn’t know what to do with it, but he knew he had to get it out.)

Thanks for your time, and thanks for your help with this.  I feel certain that if we’re all on the same page, we can help Bud successfully navigate the rest of the week.  Please don’t hesitate to call me.  I’d also be happy to meet at any time, if it seems like more brainstorming would be useful.

All the best,

MOM-NOS

Social story:

It is spirit week at school.

During spirit week, students and teachers dress differently.  Sometimes they wear funny things.

I can dress up for spirit week if I want to.  I can wear my regular clothes instead if I want to.

Even though people are dressed funny, school is the same during spirit week.

Students pay attention to teachers and do their work during spirit week.

I will pay attention and do my work, too.

If I am having a hard time, I will use Bud words to talk to Mrs. Edwards about it.

I will have fun and work hard during spirit week.


2/23/12 - Edited to add:
Several people have written to ask how Bud's team responded to this e-mail.  I'm happy to report that their response was fast and enthusiastic - which is not surprising, since, as I've mentioned before, we work with an extraordinary team.  Each team member responded to me  individually.  They wrote to thank me, to ask if they could share the e-mail with others who work with Bud, to offer new thoughts and suggestions, and to problem-solve.  And through these responses, I got the most important message of all - the one that told me that every one of them is committed to helping my child succeed.

There are good people out there.  Truly.  Find them, and collaborate, collaborate, collaborate.

My thanks to Autism Speaks and Jess from Diary of a Mom for linking to this post and directing so much traffic here today.  If this is your first time here, welcome - and please feel free to click here to follow Bud and me on Facebook.

Flummoxed

I have the coolest friends ever.

Some of my very cool friends are working on the coolest project ever - Flummox and Friends, a live-action video series designed to help kids with social impairments develop the skills and understanding they need to navigate the complex world of peer relationship.

It's fast-paced.  It's engaging.  It's clever.

It's exactly what Bud - and millions of kids like him - need.

But my friends need your help.  Please watch the video below.  Then click on this link to give what you can to support this extraordinary project and help it come to life.  Flummox and Friends will make a real difference in children's lives.  It will make a difference in Bud's life. 

Flummox and Friends will help reinforce the goals that we have for Bud and the skills that we are working so hard to help him develop.  They'll help bolster his confidence, so that when he's ready to seek out meaningful interpersonal relationship with his peers, I know that he will succeed.  And when he does - when his peers are really able to know the Bud that I know - when they have that sort of close, reciprocal connection with him that I have - I know exactly what they'll say:

"I have the coolest friend ever."

Please give what you can to help make it happen.

Insider blogging

A friend of mine is teaching a Creative Nonfiction course this semester and he's asked me to cover a couple of classes while he's out of town. He wants me to focus specifically on blogging and the aspects of writing creative nonfiction in the blog format that make it unique. I'm delighted to have the opportunity - and not just so I can be the cool, fun substitute teacher - but I could use the collective wisdom of the blogosphere as my plans come together.

I'll be teaching two classes. In the first, I thought I'd introduce elements that are characteristic of the medium and decisions that bloggers make and debate as they craft their voices and shape their blog personae. I'm thinking about things like:

- The decision to use your real name or a pseudonym, and the pros and cons of each decision. (There have got to be some great posts out there that dissect this issue. Can anyone point me to one?)

- The ethical implications of using other people's names - or, even, other people's stories, even if the names are changed.

- The further implications and considerations for bloggers who write about their children: Where does the blogger's story end and the child's story begin? What rights of privacy should a child automatically be afforded? What happens when the cute story you wrote about naked five-year-old Sally is discovered by the classmates of awkward eighth-grade Sally?

- The many ways that parent-bloggers negotiate and balance the right-to-privacy or safety-and-security issues with the establishment of veritas and the bringing-to-life of the narrative: real names with photos; fake names with photos; real names without photos; fake names without photos - and the potential benefits and pitfalls of each.

- The self-referential nature of blogging - the ongoing narrative, the link-back to previous posts, the assumption that the reader already has - or knows how to find - the backstory, the presumption that there is always backstory.

- The phenomenon of comments - the dialogue that can ensue between author and reader, or between readers - the way that the best, meatiest, most heartfelt, most meaningful part of a post often appears in the comment section.

- The communities that form through blogging - the circles that emerge - the politics of the blogroll - the danger of creating "insiders" and "outsiders" among one's readership. I remember reading a post somewhere long ago that talked about how blogging was like being back in eighth grade - and then reading a response post on a different blog about how blogging is, in fact, nothing like being back in eighth grade. Does that ring a bell with anyone? Can you point me to a link?

- The existence of blog trolls - people who seem to stalk your blog obsessively, waiting for new updates (and the fact that you know about their existence because you have been tracking your blog stats obsessively) - and people who leave nasty, hurtful comments - almost always anonymously, with no reply address, like grenades lobbed through the blogosphere.

- Flame wars and the way that misunderstandings can escalate quickly and divisively, with lines drawn and opinions entrenched within hours.

- The crafting of a blogging persona and the assumption by some that because you are writing about your own life, the blog reflects exactly who you are - and the reality that blog writers shine spotlights on the areas of their lives that they want you to see, leaving the vast majority of their lives - and themselves - in the shadows.

I'd be delighted - and eternally grateful - if you can point me to any blog posts you've read that delve into these subjects and capture well any perspective on them. I'd like to avoid turning these into classes on autism blogging or mommy blogging, so I'd especially welcome suggestions from further afield (though, by all means, I'd be happy to have examples from closer to home as well).

At the end of the first class, I'd like to assign each of the students some reading, asking them to read a post or a series of posts that captures a quintessentially bloggy phenomenon - something that could only happen through writing on the web - that they can showcase them for us in the second class. Some ideas:

- Real-life implications of online writing - how the same things that make for a wonderfully snarky post can really come back to bite their author. I'm thinking, especially, of things like being Dooced (or, fired for blogging about one's job), pointing them here - or more recently, the blogger who found Child Protective Services at her door because of a post that she'd written.

- The collective power of blogopshere - The Bloggess's recent response to spam mail from a PR firm comes to mind, though I'm sure there are examples with greater heft and import (Like...? Help me out here.)

- The equalizing power of the internet and the instant access that blogging can grant to the often unsuspecting blogger - there was some story I read once about a kid with autism who got to meet his country music superstar hero. And, of course, the one in which the autism mom got invited to the White House to share her thoughts and expertise.

And what else? What posts out there capture the essence of blogging? What are the things that happen in the blogosphere like nowhere else? What makes us who we are?

Oh - just thought of another one. There was that blogger who enlisted the blogosphere to help her teach that class...

Dierks Bentley and NPR

Two great tastes that taste great together.

Click here to listen to Melissa Block's recent interview with Dierks Bentley on National Public Radio's All Things Considered. In it, Dierks talks about his latest single, "Home" - a song that pays tribute to the U.S., not by glossing over its troubles, but by acknowledging them. It's a song that reminds us that our country was founded on struggle and challenge, that patriotism should never be blind, and that what we have, despite flaws that can sometimes be overwhelming, is worth preserving, worth repairing, and worth celebrating.

Melissa Block contrasts the messages in "Home" with other songs in the genre, saying, "If you listen to a bunch of recent country songs about America, patriotic songs that came out, especially after 9/11, there was a lot of chest pounding, Jingoistic tone, us versus them."

Dierks responds, "I was trying to write a song that's just honest... That's where you find a real relief, real inspiration, real hope, real understanding of what's going on. I mean, it's easy to sell something to say 'We're number one!' It feels good, but it's not necessarily truthful or really helpful."

To me, the release of "Home" is well-timed as we head into another election season, because it's a reminder that being truly patriotic - being a REAL American - requires us to look at our own mistakes and missteps and misunderstandings, as we try to move forward - together - in a better direction.

Steve Jobs: Thinking different, changing lives

I have to admit, I'm surprised by the intensity of my reaction to the news of death of Steve Jobs. I'm devastated. I'm stunned. But, of course, I know that his death really wasn't a surprise. We all knew that it was coming, right? What was I expecting? Did I think he would show up unannounced at the next shareholders meeting with "one more thing," as he pulled the cure for cancer out of his back pocket?

No, I didn't expect that. Not really.

But, damn. He was Steve Jobs. If anyone could have pulled that off, it would have been him.

But it wasn't. And now it never will be. And I'm really, really sad.

It wasn't just that Steve was a genius disguised as an Everyman - like he was just cool Uncle Steve, always showing up for holiday dinners with the hottest new toys. It wasn't even that he singlehandedly made it cool to be a geek, raising the market value for so many of us as we make our way in this world.

It was that Steve Jobs changed my son's life.

Where would Bud be right now if Bill Gates had not had Steve Jobs to engage him in the continual battle of one-upsmanship that made home computing what it is today? Where would he be without the point-and-click technology that Jobs pioneered - the technology that works in absolute congruence with his non-typical brain? For Bud, computers are the one intuitive thing he has in a world that is otherwise almost entirely counter-intuitive. Bud has been computing since he was a toddler, and in all that time, computers have not just given him a sense of competence. They have given him a sense of mastery. They are the arena in which he knows that he is not just on par with his peers; he surpasses them.

And it was Steve Jobs who brought us the iPad, the device that has been transformative for so many children with autism - the device that has given them independence and helped them find their voices. While the iPad has not been quite as life-changing for Bud, it's clear that we have only begun to recognize the possibilities that it holds for him as an educational tool. For now, though, it is the ultimate imagination machine, which Bud uses to experiment with multimedia, casting himself as designer, producer, narrator, and foley artist of his own creations. And where will his iPad take him from here? It will be fascinating to find out.

And the iPod - the single most powerful tool in Bud's arsenal. The iPod is Bud's armor in battle, his passport in interaction, and his solace in times of stress. A quick glance through the pages of this blog would reveal how often the iPod makes an appearance here. A look through our (digital - thanks, Steve) photo albums would show you that the iPod is Bud's personal American Express - he won't leave home without it. Would Bud ever have become the model patient at the pediatric dentist if he hadn't had his iPod to help him self-regulate through those early years of visits? Would he ever have conquered his fear of thunderstorms without his iPod to temper the fury? It is hard to imagine.

Without Steve Jobs's iPod, Bud would probably spend most of his time in the public arena with his fingers in his ears or with sound-blocking headphones standing between him and the rest of the world. From a distance, he would look, to strangers and peers, a little different, a little odd, a little "other." But now, with his iPod in hand and his earphones in place? He just looks like the cool kid that he is.

The iPod is his conversation starter ("Hey, Bud - what are you listening to?"). It is his shelter from the storm. It is his socially acceptable and entirely private way to restore local coherence when the world gets overwhelming, allowing him to replay brief snippets of songs or sound bites, over, and over, and over again, as he reclaims control when his world is too unpredictable, as he restores his own sense of internal order when his external environment seems in chaos. For Bud, it's a life-saver - and a gift that only Steve Jobs could give.

Perhaps most importantly, though, it was Steve Jobs who framed a cultural philosophy that makes the world a safer place for my son to be himself, because it was Steve who challenged us to "think different." And for a child whose brain is designed to think different, that celebration of difference, that trumpeting of both the value and the importance of difference - well... it's everything.

We will miss you, Uncle Steve. The holiday dinner table just won't be the same without you. But, truly, your legacy will continue in ways that even you might never have imagined were possible - and, as we all know, that's really saying something.

And, oh yeah, one more thing: Thank you - from the bottom of my heart.

Being there

It's been a hard week.

I've written before about my dad's Alzheimer's and about the beautiful relationship that he and Bud have. Both of these things have been weighing heavily on my mind this week.

My dad fell on Tuesday. He was alone in the yard when it happened, so we don't know the circumstances, don't know how hard the fall was, don't know how long he was down, don't know what he had to do to get up. An x-ray revealed that he had fractured a rib - a problem for which the only solution is time.

The first days after his fall were frightening, because, as often happens with Alzheimer's, the pain, or the pain medication, or both, transformed his dementia into delirium. When he slept, his sleep was fitful, his hands moving, his legs twitching, and his lips murmuring unintelligibly, but with purpose. When he woke up, he was bewildered and angry - he had things to do, he insisted, and we were keeping him from them.

His condition worsened, his pain so extreme that we were unable to move him. He ate very little. His speech was slow and muffled. His eyes were wild. I was afraid that we were - that Bud was - losing him completely.

The past 24 hours have been transformative, though. A visiting nurse and a home health aide have been in. My sister, my mom, and I have been joined by family friends with experience dealing with situations like this. My dad's pain is being managed. He is more mobile. His eyes are clearer. His dementia is less extreme, allowing him to spend longer stretches of time engaged with us and making his mental forays away briefer. It's clear, though, that we can't leave him unattended at all. Not right now. Maybe not ever again.

So, the big questions - the new realities - are still largely unknown and overwhelming, but for the first time in days, I find that I can exhale a little. I'm starting to reflect on the past week - a week during which I feel like I spent my time vacillating between two postures - flailing action and paralyzed inaction. I flailed my way through my life outside the house - tearing through my to-do lists without being able to prioritize in any meaningful way - applying quick-fix resolution to issues that really deserved more thoughtful consideration, and postponing action on mundane things that could have been more easily settled. And then, when I walked through the door to my house - saw my father in his bed, confronted his labored breathing, heard his muddled speech, looked into his wild eyes - my mind went blank. My to-do list vanished. I felt completely at a loss.

Things are better now, of course, but there is still so much that needs to be done, and I find myself struggling to fight paralysis without starting to flail. But it's hard to know what I should be doing. I feel like I should plan - but for what? for how long? with whom? Without knowing what we're really facing, it's hard to know where to put my energy.

My best cues, though - the most useful bits of wisdom I've gleaned in recent days - have come from the two sources I'd have thought most unlikely - the two people whose expertise I'd clearly underestimated most: Bud and my dad.

Because this week, while I stood looking at my father, trying to fight my paralysis, but feeling the panic rise within me, Bud brushed past me, ran to his grandfather's side, and greeted him joyfully, "Hey-a, Papa! How you doing?"

As I stood worrying about my father's hygiene, concerned about the time he'd laid still in bed, unkempt and unwashed, Bud clamored up beside his sleeping grandfather, nestled in, and said, "I love you soooooo much."

As my father slept and I walked aimlessly around the house wondering what I should be doing, Bud sat in the chair by his Papa's bed, matching Papa's labored breath with his own, slow breathing - his eyes closed, his ankles crossed, sharing the stillness.

As I made room for the professionals who came in to help my father sit, stand, walk, bathe, eat, and I found myself hovering on the periphery, unsure if I was staying on the sidelines for the sake of my father's privacy or because of my own discomfort, Bud settled himself in the center of the action, assuming the roles of both head coach and cheerleader. He sat across from Papa, his arms crossed, intently watching the nurses in action, and chiming in frequently with encouragement and support: "Papa, the nurse is going to give you a check-up and it WON'T. HURT. ONE. BIT," and "You're doing great, Papa!" and "I'm very proud of you."

As my father's color returned and his breathing normalized and he settled into an easy chair, I collapsed in on myself, focused on my own relief, but Bud sidled up to Papa, stroking his arms and patting his head.

And my father. My father. Even when things were at their worst - when his eyes were their wildest - when he seemed unsure of where he was, how he got there, and what in the world was happening to him - he consistently recognized Bud. When the rest of us could barely get a response from him, my father still brightened when Bud entered the room. The fog lifted temporarily and my father spoke more clearly than he had all day: "Hey, buddy. How was your day?"

Both my heart and my mind are still trying to process it all. But the messages, I think, are clear.

From Bud, the message is this: Be there for Papa. Stop focusing on who he was and on who you want him to be. See who he IS. Love who he is. Stop thinking and trying and pushing and planning and doing - and just BE with him. Be present to him. Just be there.

From my father, the message is this: Be there for Bud. Set aside your own confusion, forget your own fear, step outside your own pain, and be there for him. Stop trying to plan for, to warn about, to protect from, and just BE with him. Be present to him. Just be there.

And I'm trying. I'm trying to be there. I am. I have two extraordinary role models - two exceptional teachers.

I'm a slow learner.

But I'm trying.

Remembering

I've been thinking a lot today about the post I wrote a year ago on September 11.  The messages in it are helpful to me today, as I confront the bittersweet realities in our lives right now.  I'm re-posting it here in its entirety and, like everyone else in the country today, I am remembering.


This post originally appeared at Hopeful Parents on September 11, 2010.

Some weeks ago, when I learned that I’d been assigned to write for Hopeful Parents on the eleventh day of every month, it occurred to me that I would be posting on the eleventh of September. September 11. I wondered how I would write an upbeat, positive post on such a tragic anniversary. To acknowledge the date would be somber; to ignore it, when I have been specifically designated THIS day to post, might seem disrespectful.

About a week ago, on a day when the stress of Bud’s transition to a new school year manifested in hard-to-manage behavior at home, it occurred to me that my posting date was fast approaching. I wondered how I would write an upbeat, positive post for Hopeful Parents when I was not feeling like a very hopeful parent. To acknowledge my frustration and self-doubt would be somber; to ignore it would be disrespectful to the mission of this site.

And that led me back to thinking about 9/11.

On that day, when the first plane hit the tower, Bud and I were dancing. We were in a Kindermusik class full of parents and toddlers. We were surrounded by baby laughs and mommy hugs, while hundreds of miles away, inconceivable tragedy was unfolding.

I think about those contrasting images often.

They are images that, through their contrast, capture my world view. It’s a world view that may have started to develop in my high school science class, because it seems to have its roots in Newtonian physics: To every action, there is an equal and opposite reaction.

In my own mind, it has become this: The universe seeks balance.

It’s a theme that plays out consistently in my life.

I look at pictures from Bud’s second birthday party, held four days after September 11, 2001. The faces on the adults are ashen, fixed in still-fresh shock and disbelief. And yet, there we were, gathered with joy, gathered in love, gathered because a two-year-old’s birthday mattered, despite the horror we were all still trying to process. We gathered to meet our grief with an equal and opposite reaction.

I think about Bud’s birth itself – the birth in which his twin brother was stillborn. I think about the hours and days that followed – hours and days of profound sadness, made livable - made powerfully joyful - by the healthy baby boy I held in my arms. Equal and opposite.

I think it’s the way that each of us processes the balance – the way we frame the moments and events in our lives that stand together in juxtaposition – that really defines our experience. I could, I suppose, reflect on my life and feel cheated - angry that the sorrow of x diminished the joy of y. Instead, I reflect on my life and feel fortunate - grateful that the joy of y sustained me through the sorrow of x.

So, I cling to my memories of the earliest moments of 9/11 - those moments in which something was stolen from us that we’ll never reclaim - and I remember the dancing. I remember the joy – and I believe that the people who were dancing, who were laughing, who were kissing, who were living with compassion and kindness at that first terrible moment of impact, created an equal and opposite force that kept us all moving forward, that allowed us to preserve something that can never be stolen.

It’s the same world view that keeps me moving forward through Bud’s darkest days of anxiety and aggression – because as challenging as his behavior can be, as powerless as I can feel in the face of it, I know without question that soon we will experience equal and opposite progress – equal and opposite joy.

The universe seeks balance. Better days are coming. And there’s nothing more hopeful than that.

How to explain autism to children

I've gotten a lot of great feedback about the series of posts I wrote about talking to Bud's fourth grade class about autism.  The initial post - A Hairdryer Kid in a Toaster-Brained World - has been especially well-received.

I've also gotten feedback that the posts are difficult to find and that people stumble upon them after they Google something like "talking to kids about autism" and are directed through a circuitous route of posts that reference each other, until they land here.

So this is a housekeeping post.  The title should help bump it higher in the Google hit list and, therefore, help people find the blog more easily.  And if you've landed here because you've Googled something like "explaining autism to kids" or "helping children understand autism," then I encourage you to click here to read the whole series.

(And also:  Welcome!  Come back soon!  We also have a Facebook page...)

Well prepared

We're prepared.

I'm not talking about Hurricane Irene, though we were, indeed, prepared for that, too - the lawn furniture in, the kitchen stocked with bottled water, the counters covered with flashlights and batteries, the cell phones charged, the bathtub filled to the top in case the pump house flooded.  Luckily, though, we survived Irene unscathed.

The real preparation that has had our attention over the past days, weeks, and months, is the preparation for middle school, which was due to start tomorrow, but (thanks, Irene) will instead start on Tuesday.  The middle school prep really started in early spring, when Bud's wise and wonderful teacher, Ms. Parker, arranged for her daughter Gretchen - a student at the middle school - to Skype with Bud.  And so, Bud became introduced to the middle school from the comfort of his known-and-familiar elementary school, through a medium that gives him great comfort - the computer.  Through several introductory meetings, Gretchen talked to Bud, then picked up her laptop and gave him tours of the building, introducing him to people she met along the way.  Those introductions were so successful, in fact, that when I arrived for my first tour of the facility in late spring and was introduced to teachers, staff, and administrators, person after person said to me, "Oh, Bud?  I know Bud!  I Skyped with him!"

As the school year wound up, energy focused on helping the entire fifth grade start making the transition to middle school.  Visit days were scheduled - and for Bud, pre-visit days were scheduled to help make those larger-group events even more successful.  His team developed an Extended School Year plan for the summer that focused on both continuity and transition, with time spent at both the elementary school campus and the new middle school.  By the time his summer program ended, Bud was not only comfortable at the middle school, but he was also starting to feel at home there.

The final week before the start of school was not included in his Extended School Year program, of course, because it's a time when staff and teachers are focused on professional development and on their own preparations for the first weeks of school.  I knew, though, that a week of down time would put Bud at risk of losing momentum, of sliding back from the progress he'd made, and of falling prey to the anxiety of the unknown.  So, when the team met last spring, I pitched them my idea for that final week of summer:  Operation Continuity.

The plan was simple:  Bud and I would arrive at the middle school at the regular opening time with a task list in hand:  give mom a tour of the building, set up your locker, bring supplies to your classroom.  We'd stay less than a half hour, but it would 1) help us hammer out a morning routine that requires us to leave the house 45 minutes earlier; 2) keep him in the get-up-and-go-to-school-each-day routine; and 3) allow him to see the building transform from the empty hallways in which he'd spent his summer to the bustling center of activity it would become on opening day.  All I needed, I promised the team, was their blessing.  No one had to develop the activities or be on hand to meet us or anything else.  I just need to know that no one would stop us at the door or tell us we had to leave.  They gave us the green light without hesitation.

So last week, Bud and I took the middle school by storm.  He toured me through the building and I got to see how comfortable he is there - how well he knows the building and how at ease he is with the people.  We decorated his locker with pictures of Dierks Bentley and he practiced opening and closing the padlock we'd purchased to avoid the frustration that a combination lock would likely bring.  We watched as the O.T. room came together.  We reviewed his picture schedule, already posted on the wall.

And then, toward the end of the week, through pure serendipity, the stars aligned. 

His fourth grade teacher, the incredible Ms. Walker, e-mailed me on Wednesday night.  She said she'd be at the middle school for a workshop in the morning and she wondered if she could come by to have Bud show her his locker.  I was delighted at the idea of having one more transition point - one more person to help usher him into this new environment.

Ms. Walker met us near his home room in the morning and they had a happy reunion.  She was appropriately enthusiastic about everything he showed her, and he was happy to play tour guide.  Ms. Walker asked Bud if he would help her find the room for her workshop and he led her up the stairs to the cafeteria, which was already buzzing with the sounds of teachers catching up with each other after a summer away.

Then, suddenly, as if by magic, the middle school hallway filled with familiar elementary school faces – faces of people who had been his lifelines for the past six years - his former teachers, his paraprofessional aides, his speech-language pathologist, his occupational therapist, his school nurse - all greeting him with hellos and hugs and high fives. 

It was like somebody set off a love bomb.  The air was infused with positivity.  A circle formed around Bud - a circle full of people genuinely delighted to see him - people enthusiastic about his new school - people bursting with pride and warmth and excitement.  Bud was so high he nearly left the ground.

He talked about that moment for the rest of the day.  He called his dad to report on it:  “There were twenty teachers! There were HUNDREDS of them!”  And at bedtime, as we snuggled together and reflected on the day - a day that was good in lots of other ways - time spent with a favorite babysitter, a chance to swim at the college pool, computer time at mom's office - I asked him what the best thing was that day.

"The best thing..." he said, pausing with a far-away look.  "The best thing..."  He fell silent and I waited, reminding myself that if I really wanted an answer I'd need to stay silent for at least 45 seconds.  "The best thing..."

"The best thing was the teachers," he said.

His take-away message was clear:  he finally knew for certain that his long-held fear would not be realized.  He is leaving the elementary school, yes.  But he is not losing the people who have become so important to him.  They are still there; they are still connected.  As he moves on to the middle school, he is simply adding to his village.

We're prepared.  Bud starts middle school on Tuesday.  And he's going to rock it like a hurricane.

More to follow

I have a whole lot of partially-written blog posts bumping around in my brain.  I compose them in the car, I compose them in the shower - I compose them virtually everywhere I go.  I just don't compose them very often when I'm sitting at the keyboard.  There are plenty of reasons; I have plenty of excuses - and some of them are even good ones.  But the upshot is this: I'm just not writing as often as I'd like to.

I've been testing out another forum, though, and have created a MOM-Not Otherwise Specified Facebook page.  It's a modest little site, but I'm checking in more regularly there and I'm finding that it's much easier to dash out a 420-character status update than to do the heavy lifting of string words together to make sentences, sentences to make paragraphs, and paragraphs to make posts.

If you'd like to check it out - and, I know - Facebook - I know.  And yes, I saw The Social Network.  But, still - if you'd like to check it out, you can follow me by clicking here.

I'm still experimenting.  I'm still not sure how I feel about it.  Or, as I posted in another forum:

Increasing the online presence without actually composing whole paragraphs. Thoughtful expansion or indolent cop-out? You be the judge...

Missing teenager

UPDATE, 8/15:  Nathan has been found.  He's safe and the autism community is breathing a collective sigh of relief.

Nathan Carman, a teenager with autism, has been missing from his home in Connecticut since Thursday morning.  Family members think he may be trying to get to New Hampshire.

Please spread the word to friends who live in the Northeast to keep their eyes open for him.

8/15 - Edited to add:  Nathan is still missing.  His family has started a Facebook page, which you can find here.  On it, they write:

This page is for us to help find 17-year-old Nathan Carman and bring him home. He has been missing since 7 a.m. Thursday, Aug. 11, 2011, from his Middletown, CT home. Nathan has Asperger's Syndrome, a high-functioning form of autism. He may appear stoic and may or may not respond when his name is called. He was last seen on Thursday afternoon on surveillance cameras as he exited a city bus on the New Haven, CT Green. There have been no sightings of him since then. Please call 9-1-1. Please, let's bring Nathan home to his family.

You can help by putting this on your status. Let's make this go viral until we bring Nathan home!

Please do what you can to help spread the word.

Direct from the heart

My high school drama director passed away today.  He was a Catholic priest teaching in a public school - irreverent enough to be cool, but stern enough to be respected by a theater full of unruly, hormonal teenagers. I probably haven't seen him in twenty years, but I still feel his influence in my life every day.

He taught me how to challenge myself and how to take risks.

He taught me the value of making difficult choices with integrity and the importance of doing the right thing instead of the popular thing.

He taught me how to work hard, how to persevere, and how to celebrate my accomplishments.

He taught me how to fail.

He taught me how to rely on other people and how to be a person on whom others could rely.

He taught me that it's possible to be both critical and kind - and that, in fact, it's often impossible to be the latter without also being the former.

He helped me to see that all the world really IS a stage, and he taught me to stand proudly in the spotlight, graciously in the shadows, and patiently in the wings.

I would not be successful in the job that I have, I would not approach parenting the way that I do, I would not be the person whom I have become, if it were not for him.

Rest in peace, Father. The world is a better place because of the hundreds of young lives you changed.

Thank you for making my life one of them.