Wednesday, September 19, 2012

Thirteen

This morning, before Bud left for school, I reached over and hugged him, feeling a little overcome with emotion at the thought that he’s now, officially, a teenager.

“Happy Birthday, Bud,” I said, pulling him closer.
“Thanks, Mom,” he said, hugging me back.  “You too, Mom.”
I love him so much it makes my head spin.

Wednesday, September 05, 2012

When losing is winning

It was one of those afternoons.

I imagine a similar scene has been playing out all over the country lately, as kids return to school and spend their days trying to manage new environments with new people who have new agendas, but have not yet established new predictable routines.  This time of year is exhausting for Bud and though he's been making a smooth transition to school, it's taking everything he has.  By the time he got to me late this afternoon, he had exhausted his reserves.  The poor kid was just a big jumbled mess of reaction and emotion and dysregulation.

You can probably imagine the behavior that typically results from reaction and emotion and dysregulation - and it played out just that way.  As it did, I tried to be clear about expectations and boundaries and consequences, but, despite that, Bud kept pushing until, ultimately, he pushed too far. 

When the consequences I'd promised finally ensued, Bud's emotional dysregulation escalated and his emotion ran even higher.  I tried to stay even, recognizing that the more he escalated, the more I needed to be consistent.  We spent a lot of time and he shed a lot of tears, but eventually, he accepted the reality of the situation and settled into it.

At about that time, he called his dad.  I only heard Bud's side of the conversation, but I could surmise what was happening on the other end, as his dad tried to assess the situation, seize the teachable moment, and affirm that the consequences were warranted and fair.  But, what I heard from Bud was this:

"I lost my computer today."

pause to listen to dad

"Well... because I made a bad choice."

shorter pause

"I hit Mom."

longer pause

"I'm going to be nice to her from now on."

Bud and his dad continued to process the events of the afternoon, while I sat at the table slack-jawed, deconstructing what I'd just heard him say.

First:  "I lost my computer today."

He didn't say "Mom took my computer" - which really would have meant "I am a victim of circumstance"  or "A terrible injustice has been done to me." 

No.  He said, "I lost my computer today."  In other words, he said, "I am responsible for what happened today."  He said, "I did something that caused something else to happen."

In this story, as Bud told it, the main character, the subject, the one who owned the action, was Bud himself. 

Then:  "I made a bad choice."

He didn't say "I was bad."  He didn't internalize the action and allow it to chip away at his sense of self.  He isolated the event, framing it not as who he is, but simply as what he did

But it was even more than that.  He didn't say, as I've often heard him say, "I did a wrong thing."  He took it a step further and acknowledged that as the event unfolded, he had choices.  He acknowledged that he didn't make the best choice and that he could have made a different one.

Then:  "I hit Mom."

Bingo.  In three words, he acknowledged that he knew exactly what caused him to lose his computer - exactly where the line was - exactly when he made the wrong choice.

And finally:  "I'm going to be nice to her from now on."

In other words, "I know what the other choices look like."  "I know that I have another chance to make a different choice."  "I know that our relationship will remain intact."

By the time Bud went to bed, he was no longer talking about his computer.  He was reading books and going through his normal nighttime routine, complete with cuddling and kisses, and completely devoid of hard feelings.

He understands why things unfolded the way they did today.  He trusts that he will get his computer back, as promised, tomorrow.  He knows how to avoid a similar situation in the future.

It was a hard afternoon for Bud and me.  I know Bud struggled without his beloved computer.  I know that it was a hard and meaningful loss to him.

But it sure felt like an educational, developmental, milestone-marking win to me.

Saturday, July 07, 2012

Down in the jungle room

Sometimes I feel like Elvis.

And not in a good way.

Have you ever been to Graceland?  I went there in 1989.  It was only 12 years after his death, but the house, frozen in time on the day he died, looked dated.  Kitschy.  It was all former glory and used-to-be.

I haven't been back there since.  Maybe it's so dated now, it's hip and retro, but I doubt it.  Now, I'd have to guess, the shag carpets and the fabric-covered ceilings are immeasurably tackier than they were when they were new.

And yeah - sometimes I feel the same way when I visit this blog.

I'm all shag carpets and fabric-covered ceilings over here.

I started blogging in 2005, among the first wave of autism parent-bloggers.  I like to think I was cutting edge at the time.  I kept up with the Jones's for a couple of years, until my life took a sudden turn and my blog was shuffled on to the back burner, and the template became frozen in time.

Autism parent-blogging has exploded since then.  We have to be into the 5.0 version by now, at least.  The latest wave of blogs are draw-you-in shiny.  So, it seems, every time I pop over here and think about adding something new, the blog stares back at me, pleading for some attention, and I end up clicking away to see what someone shinier has to offer.

So my goal in the coming weeks is to bring the blog a few years into the future.  I'm not going to shoot for current - that's just too far to go - but maybe we could reach somewhere around, say, 2010.  And then maybe I'll be ready to add a little new content as well.

Anyway, if you should visit in the next few weeks, don't be alarmed if the site looks different day-to-day.  I have no vision for it, so I'm just going to play around.  But, don't worry - it doesn't mean that I've been hacked.

Just T.C.B., baby.  T.C.B.

Wednesday, April 11, 2012

Hot diggity dog

Seven years ago today, I wrote these words:

"Bud is terrified of dogs. As those of you who live with and love people on the spectrum may know, I am not talking about anxiety. I'm not even talking about fear. This is terror."

Today, I'm posting this picture:


Everything is possible.

Wednesday, March 28, 2012

Autism awareness begins at home

Once again, this year, on April 2, World Autism Day, Bud and I will be swapping out the soft-glow energy efficient light bulb in the entryway of our house for a bright blue bulb, as we join with other households - and with the Empire State Building, Rockefeller Center, Niagara Falls, the Sydney Opera House, the Hungarian Parliament Building, and many other public venues worldwide - in the Light It Up Blue campaign, sponsored by Autism Speaks and directed at shining the spotlight on autism.

I know that this is a campaign that makes some eyes roll - Is this really activism?  In what way is it really spreading meaningful awareness or making a tangible difference in the lives of people with autism?  Isn't it just a campaign that makes people feel like they're doing something good, without actually prompting them to do something good?

Last year, I engaged in some dialogues about the relative merit of the campaign.  This year, though, our blue light feels a lot more personal than political.  And I'll tell you why.

Bud knows he has autism.  A couple of years ago, as I was preparing an autism presentation for his classmates, my mind kept coming back to the disability rights philosophy "Nothing about us without us."  I knew that it would not be helpful to Bud or to his classmates for him to be part of the presentation, and yet, I also knew that it was not fair to give them information about him that he didn't have about himself.  I'd never hesitated to use the word "autism" in front of him, but I'd also never talked to him directly about it.

And so, before I met with his classmates, I sat down to talk with Bud about autism.  As you might imagine, Bud's not an analogy kind of guy, so I steered clear of any mention of toasters or hairdryers.  Instead, I tried to keep my explanation clear, direct, and on point.  I told him that people have brains that work in different ways, and that the way his brain works has a name:  autism.  I told him that autism makes some things harder for him than they are for other kids, and it makes some things easier for him than for other kids.  He acknowledged that he'd heard me - I think he said "oh" - but he didn't seem particularly interested.

"Can you think of some things that are really, really hard for you, Bud?" I asked.

And without missing a beat, he responded, "Change is hard."

"That's exactly right, Bud," I said.  "Change IS hard, and sometimes it's a lot harder for you than it is for other kids.  And that's because of autism."

"Oh," he said again.

"And can you think of some things that are really easy for you?" I asked.

"Computers," he answered.

"That's right, " I said.  "Computers are easier for you than for other kids because of your brain's autism.  And you know how you can say all the words to TV shows?"

"Yeah."

"Most other kids can't do that."

"They CAN'T?"

"Nope.  But it's easy for you because of autism."

"Oh.  Cool."

Bud asked if I had autism, too, and I explained that I didn't.  We talked about other people we know who don't have autism and other people we know who do.  And that was about that.  Bud's world was not rocked, but he did have a new word to carry with him.

From that point on, I'd bring it up from time to time.  If he was struggling with something, I'd help him take a step back by explaining that it was his autism that made it difficult for him.  Once, when we were at the mall, we heard a child making loud but cheerful vocalizations that were echoing through the aisles. 

"Why does she keep doing that?" Bud asked.

"She likes to do that, Bud," I answered.  "You know how you like to say the words from Teletubbies?"

"Yes."

"You like to do that because of your autism.  Well, she has something that makes her like to make that noise.  It might be autism or it might be something else.  Everyone is different."

"Oh," he said.  And then, his sensory integration rattled because of the interplay between the other child's reverberating cheerful vocalizations and his own autism, he added "Let's get out of here."  And we did, as I chalked one up for emerging self-advocacy skills.

A short time later, Claire Hughes-Lynch's wonderful book came in the mail.  Bud, always hopeful that any package delivered to the house will include a surprise for him, asked what was inside.

"It's a book, Bud.  It's for me."

"What's the book's name is?" he asked.

"It's called Children With High Functioning Autism."

Bud gasped.  "Like ME???"

"Yes!  Just like you,"  I said, as he skipped away, delighted to be the sort of person that people write books about.

So, over time, "autism" became a familiar concept around our house - though, to be honest, Bud sometimes has a hard time remembering the word itself  ("What is it, again?").  And so, last year seemed like the right time to introduce the concept of Autism Awareness, through the lens of the Light It Up Blue campaign.

I explained it to Bud this way:  People all over the world would light blue light bulbs on the same day, so that everywhere people went, they would see blue light bulbs, and the blue light bulbs would keep reminding them of the same thing:  People with autism are important.

A few days before April 2nd last year, we went together to Home Depot to pick up a bulb.  "Remember, Bud?" I said.  "We'll light up this blue light bulb to remind everyone who sees it that people with autism are important."

And then, it was April 2nd, and as night fell, I went outside to take out our old light bulb so we could light the house up blue.  It was dark enough that the bulb cast an impressive glow, and I called Bud over to see it.

He stood at the front door, pressed his face against the glass, and stared with wonder no less profound than it would have been if he'd been looking at the northern lights or at a sky filled with the flashes of a meteor shower.

I crouched down next to him and stared out the window at our blue-tinged front yard.

"Remember Bud?"  I said.  "Remember what the blue light means?"

"What?" he asked.

I prompted him with the words we'd been using for weeks.  "The blue light reminds everyone who sees it that people with autism are..."

And as he stared out into the blue, he answered softly in a voice that came from a million miles away:  "Awesome."

So, yeah.  We'll be lighting it up blue again this year. 

To remind everyone who sees it that people with autism are important.

And, more importantly, to remind Bud that people with autism are awesome.

Wednesday, February 22, 2012

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.