The Family Room

Bring on the Andrews!

Way back when we were first wading through therapies and diagnoses and endlessly picking little laminated icons off the floor, I remember thinking how overwhelmed and exhausted we felt every time someone suggested something new. 

PECS never sat well with us, in retrospect, I think, because so many of Isaac's auditory processing challenges are situational. That is to say, his receptive language is fine at home and in quiet places, while he has a much harder time in loud, chaotic environments or when he's upset. So while it may have been essential for the classroom, it usually felt unnatural--and like overkill--at home.

The truth is we resisted a lot of suggestions at first but ended up trying just about everything sooner or later. I remember saying snidely to J. one day that developmental pediatricians should hand out two things to newly-diagnosed parents on the way out of the office: a prescription for antidepressants and a lamination machine.

Because if you are a parent of the child on the spectrum, there is only one absolute truth: everything having to do with autism must be laminated. 

 

Social stories, while they seemed really smart in theory, seemed overwhelming in practice. Find images that your child can relate to, add text to them, bind them together and...what?  A book every time we need to do something new? It's enough to make you want to stay inside all day and bolt the door.

We're way past that now, and I have enough perspective to see that, without really noticing, we now weave social stories into pretty much everything we do. Isaac loves and responds to them, and we rarely if ever need pictures anymore to reinforce the story.  He likes to hear them, embroider them, add silly variations. He asks for them when he's upset or nervous or excited, and he sometimes even tells them himself. It's as natural as conversation, if conversation were, in fact, natural. 

But there's another piece here too. Isaac loves our family photo albums. When he was a baby, I remember seeing a craft project in one of the parenting magazines (inspiring in that Martha Stewart way: impressive, while leaving you with the vague sense that you have failed as a parent, even before you've started). It involved making a mobile out of photos so your little darling could go to sleep with the faces of beloved family members dangling overhead. I never made that mobile, but I did go out and get a bunch of little brag books, which I brought to work in the days after I returned to work to try to retain some continuity with my new, and still unfamiliar, mother self.

Isaac has discovered and fallen in love with these books, and he takes great pleasure in pointing out the pictures of "Baby Isaac," Mommy, Daddy, and his grandparents, aunts, uncles and cousins. To this we have added pictures from school for a bit of social reinforcement.

"Who's this?" I asked the other day as we looked at a picture from last year's preschool class. "That's Andrew!" he told me excitedly. "And this?" I said, pointing to another child. "That's Andrew!"

"Really, Isaac," I asked. "Are ALL the kids in your class named Andrew?" I pointed to each one in turn. "Andrew, Andrew, Andrew, Andrew and Andrew?"

He laughed so hard he started to hiccup, and since then he has insisted that we refer to him as Andrew. 

"Isaac, it's time for bed," I said tonight.

"ANDREW it's time for bed," he replied calmly, grinning at me sidelong: his father's grin.

So I complied, marveling at how a simple story about going to school has meandered its way into a game of pretend, and how right it is that he is now becoming interested in exploring the meanings of routine and friendship and family and identity.

Autism is poetry of the mind

In Ralph Savarese's wonderful book Reasonable People: A Memoir of Autism and Adoption, he discusses the incredible changes in his son DJ once he learned to read. Literacy gave DJ, who does not speak, a way to express himself, and his voice turned out to be quite extraordinary. It's a rare view into the way a non-speaking person with autism thinks.

DJ uses words fluidly, metaphorically. Sometimes his prose is clear and declarative, sometimes it's reminiscent of Romantic or Surrealist poetry. His father, who is a professor of English, understood this innately, and encouraged DJ to tap into his desire to connect.

Here's an early note from DJ to his dad:

Note to Dad

yes.dearest sad dad you heard fresh self and freshly responded deserting your fears and just freed sad dear saved me. yes. yes. yes. yes.

--DJ Savarese

Note the phrase "dearest sad dad." Who says people with autism don't have empathy? Notice how DJ so deeply understands his father's fear and sadness, and the persistence and care it took to find an open channel through which to communicate. Note the music of the phrase "just freed sad dear saved me"; the internal rhyme of "freed" and "dear." Say it aloud.

And the final declaration: yes. yes. yes. yes.

Can we learn more about poetry by studying autism? About autism by studying poetry?

***
The photo above is Isaac's first real independently-written note to us. If you've been following our saga, you may remember that we've been using social stories to help Isaac cope with his fear of unexpected noise, which has become focused (for reasons that are easy to understand) on fire drills.

If you can't quite make it out, the note says:

"Isaac is upset. I don't like fire drills. They are too loud."

He wrote it last week after a fire drill at school. While the prose doesn't rise to the sophistication of DJ's (he's only five, after all), it makes me wonder what will happen as Isaac becomes more confident about capturing his thoughts and feelings on paper.

It's been a gift for me. I hope it becomes a gift for him as well.

Punctuated Equilibrium

Stephen Jay Gould theorized that rather than Darwin's idea of a slow, gradual process, evolution is actually characterized by periods of inertia, followed by (relatively) sudden bursts of intense activity. He called it "punctuated equilibrium." When I look at my son, at the ways that his mind and body continue to grow, it makes a kind of intuitive sense.

It's sort of like this: blahblahblahblah [START TO READ] blahblahblah [GROW AN INCH IN LIKE A DAY] blahblahblah ALL OF A SUDDEN DECIDE HAIRCUTS ARE OKAY. And so on.

Of course I know it's not really sudden activity: all the gears have been in motion, and lots of things are happening, above and below the surface, before we see that emerging skill.

Let's consider the haircut.

A while back, I started chronicling Isaac's haircut experiences because, like many kids on the spectrum (as well as some canny adults), having a very large and strange person repeatedly lunge at you with scissors is terrifying.

Add in the surprise and sensory impact of being sprayed with water, the snick-snick of the scissors near your head, the itchy sensation of hair falling on your neck and down your shirt, and it's pretty intolerable.

So we went through a long period of haircut rejection, and the poor lady at the kids' barber shop did the best she could with a writhing, screaming charge.

We tried social stories, and weaving haircut play into Isaac's therapy sessions. We tried waiting it out in front of the barber shop, while kids filed calmly in around us. We tried trimming him at home (Child Protective Services, Style Division, nearly paid a visit). We tried diversions (videos, books, cameras, whatever). Ultimately, we just gutted it out.

Until this summer.

Rather than waiting until haircut time to broach the subject, we just started talking about hair every so often: about how Daddy needed a haircut, about how mommy was going to get her hair cut, about how, in a few weeks time, he'd need one too.

"No haircut," he'd remind us.

And then, suddenly, he decided he was ready. "I want a quiet, soft haircut," he told me the other day. "Not a loud, hard haircut."

"Okay, Isaac," I answered. "When we get there, you can tell the lady what you want."

And he did, in barely a whisper, after I prompted him. This time involved no squirming, no tears, no drama. He chose his chair, he let the lady put a bib on him, he sat and allowed his hair to be cut.

So my suggestion, for whatever it's worth: PECS, social stories, they're a starting point. But we've found that just remembering to talk about things, even if we're not sure how much he's taking in, has made such a difference.

Sometimes it's so gradual that it doesn't even feel like progress. And then there's this punctuation, and then, for a while, lovely, lovely equilibrium.

In which someone decides he's finally ready

You know the sound your computer makes when it's stuck? Sort of a low laborious whir? That's how my brain feels tonight as BlogHer08 comes to a close. So please forgive me for my slow processing while I look for the appropriate distraction. In Drama Mama's charming turn of phrase, "Shiny! Look over here!"

Kristen and Vicki and went home late enough today to be able to come by with Jordan for a quick bite this morning. Afterwards, I took them to the train and Isaac and I went for a haircut. It's been a long time coming: he'd made the progression from George Harrison to sort of mid-Beck.

I wasn't sure what to expect. The last time J. tried to take him in, it was well over an hour of frantic wailing until he finally gave up. We've been talking about haircuts a bit lately; not quite as social story but as offhanded remark. "Isaac, your hair is huuuge!" we'd say, and he'd answer, "No! No haircut!" Okay, I'd think. No luck, but at least the abstract associations are coming along.

This time, I waited until we were about a block away before I mentioned the idea. He was not amused. But I parked, and we sat for a while, until suddenly he decided he was ready. And he walked right in.

Thus, about a half hour later, I was in possession of one newly-barbered boy. I wish I could tell you what made the difference this time, but I suspect it was a slow build-up to the idea, helped by the fact that I didn't push. But I think the real reason is that Isaac decided he was ready. He's is more and more interested in making his own decisions these days.

To celebrate, we went for pizza.

We don't need no education

In the last few episodes, our young hero was struggling with a sudden, mysterious and and severe case of separation anxiety. It's been a tough two weeks, but there is a pretty interesting twist to all of this. Check it out.

Thursday night, when Isaac was in the tub, I used the opportunity to bring up the dreaded topic and see if I could get more information out of him. Here's our conversation, as accurately as I can reconstruct it.

Me: Isaac, what are we going to do tomorrow?
Isaac: No.
Me: What do you mean by "no"?
Isaac: I want to stay home.
Me: But there's school in the morning.
Isaac: No school.
Me: Why don't you want to go to school tomorrow?
Isaac: Because I want to stay home.
Me: Why do you want to stay home?
Isaac: Because I want to play at home.
Me: How do you feel about going to school?
Isaac: I feel worried.
Me: Worried? What are you worried about?
Isaac: The fire drill.

BINGO! He puts his hands over his ears and starts making a beeping sound: BEEP! BEEP! BEEP! BEEP!

Me: Isaac, was there a fire drill at school?
Isaac (whispers): Yes.
Me: Was it very loud?
Isaac (whispers): Yes.
Me: How did that make you feel?
Isaac: Upset.
Me: You know, most people don't like fire drills. But tomorrow at school it will be quiet. There won't be a fire drill. Do you know what to do if a fire drill happens?
Isaac: Cover your ears.
Me: That's right. We cover our ears. And that makes it quieter.
Isaac: I was sad.
Me: Why were you sad, sweetie?
Isaac: I was sad because [T] (his teacher) picked me up.
Me: Okay, so maybe tomorrow you can tell [T] how you feel.

Eventually, Isaac asked for a "fire drill story." For those of you interested in social stories, I can tell you that we've been able to adapt them lately so that they're a lot less work than they used to be (unless, unlike me, you are extremely crafty and a huge fan of lamination). So this is a pared-down version, which works if, like Isaac, your child has enough language and engagement to contribute to the story but still needs some help putting it together. It went something like this (the bold is for Isaac's contributions):

Once upon a time, there was a little boy named Isaac. Isaac lived in San Francisco. One day, he was very, very upset and started to cry.

His mommy said, "Isaac, why are you crying?" "Because I am worried about going to school," Isaac answered. "There was a fire drill at school, and the fire drill is too loud."

His mommy thought about this for a moment. "What do we do when there's a fire drill?" she asked. And Isaac said, "we cover our ears."

"That's right," Mommy said. "We cover our ears. And if we're scared, we can ask our teacher for a big hug." And so Isaac went to school, and there was no fire drill, and he was very happy. The End.

The next day, I took him to school. "First go to school, then Daddy will pick me up, then we'll ride the elevator," he said. (The elevator is still wildly popular around here. Go figure.)

When we got to school, he strode right in, went right up to T., the teacher who had picked him up and carried him into school, and gave him a hug. T. sat down at the tiny child's table, my son looking over his shoulder, and he began to dictate a new letter:

"Dear Mommy,

I want Momma to come back to school. Because I don't want the fire alarm. I want you to read it and write it again. And again."

This little missive came home in his lunch box, along with another piece of paper that stated, simply, "No fire alarm today!!!"

I'd say that sent a pretty clear message to the American people, wouldn't you?

Since then, he's been perfectly relaxed. We tell a few stories, we write a few letters. We go to school. And he's fine. Just fine.

The End.

Map It!

By Jordan Sadler, SLP

Last week, a post at the blog From Here to There and Back prompted me to suggest that the blog's author create a visual map of a challenging situation her son experienced at school.  The subsequent off line conversation about this with the writer - and comments from her readers showing great interest in the topic - led me to think that perhaps this is a topic worthy of further explanation.

There are many ways to use visual strategies to map out a social situation for children.  What I do in my work is ultimately a combination of ideas I have picked up over the years at numerous workshops given by Michelle Garcia Winner, SLP, who runs The Center for Social Thinking and Carol Gray of The Gray Center for Social Learning and Understanding.  I give both of these amazing women full credit for the way I approach the teaching of social understanding and social thinking to children.  Their work fills gaping holes in what is considered best practice for kids with social-pragmatic difficulties right now.

The ideas proposed by Ms. Gray and Ms. Winner make perfect sense once you've heard them explained, but are not, apparently, intuitive to many therapists because so rarely are children (or adolescents or adults) taught this way.  In effect, we - therapists, teachers, and parents - are encouraged to approach social-pragmatic awareness not as a series of skills to be trained (as has been done in social skills groups and traditional ABA-type therapy), but as a process in which we help people to understand why we communicate the way we do. We want children to understand what kind of impact their behavior and language has on others.  We don't say, "Look at my eyes!" to teach eye contact but rather explain, "People's eyes are a window into what they are thinking about - if Ben is looking at the clock, he might be wondering if it's time to go home."   Non-verbal communication is explained in such a way that it carries meaning and becomes motivating to our clients.  Of course, there is so much more to this, and I highly encourage those interested to seek out books and workshops with the experts in this field.

I am going to provide an example of a behavior map, and in order to maintain confidentiality for my clients, I will use an experience from my own family. 

When my neurotypical older son was about 4 years old, we were at a neighbor boy's home.  Now the neighbor boy's parents were both early childhood educators, and there was no place in the world as fun as their house.  They had a big climbing structure right in their living room!  It is no surprise that my son didn't want to leave.  Ever.  On one occasion, after ample warnings (the "5-minute countdown", I call it) it was time to depart.  My son refused and became quite belligerent.  After trying every strategy we well-trained adults could think of, I ended up carrying him home as he kicked and screamed; I was hugely pregnant, exhausted, and incredibly frustrated.  I know we've all been there in one way or another.

When we got home, I was at my wit's end.  We were infuriated with each other.  I did all I knew how to do in that situation, which was to sit silently on the floor and pull out paper and a marker.  I quietly started to draw.  Now, let's get something straight: I am no artist.  That is not a requirement for this!  In this situation, I sketched out the scene like a cartoon, and my son immediately sat down to watch.  It started with two boys playing happily.  Always show emotion on the faces throughout a social map!  In the next frame, there was a smiling mother giving a 5-minute warning and the boys were still smiling.  As we got down to the 1-minute warning, I showed the expression on my son's face start to shift into anger. 

When the stick-figure mother announced in her little "speech bubble" that it was time to go, I drew a boy with the angriest face I could muster and limbs out of control.  But I think what was critical here was that I also drew the neighbor boy and his parents - all with concerned, sad faces - and myself looking angry.  In the midst of a tantrum, our kids are not generally aware of how their behavior is affecting anyone else.  If you can represent visually to a child the ways in which his actions affect how others think and feel, you are giving him the key to social thinking, or theory of mind.   I pointed out to my son that he did not say "thank you", nor did he say "good night" to our hosts and that when we left they were all feeling sad.  He was really impacted by this.  I explained that when you leave nicely, you are more likely to be invited back soon.   

I then pulled out a new sheet of paper and we started with the same beginning but recreated the sequence of events as he would like them to unfold in the future.  He decided that he could say, "I don't want to leave!" and he could feel as angry as he wanted to, but that he would leave without a tantrum, and we drew the whole thing as he described it.  This sounds like a very long process but we really only spent about 10 minutes doing it.  It's not about the art - it's about keeping the child's attention focused on the unfolding events - so it can move fairly quickly, depending on the situation and the child's processing speed.

We went back to that friend's house a great many times after that night and we never, ever had a problem leaving again. 

There are as many ways to create a visual map of a social situation as there are different social situations for our kids to experience.  There is no required format for this.  Depending on the situation and the age of the child, you could create a cartoon strip, a flow chart, or any other picture that shows a sequence.  The important part is that you visually and simply represent the ways in which the child's actions impacted other people's feelings and how they thought about him, and led to a specific outcome.  Having the opportunity to remap the situation is critical!  Your child will not learn enough from simply seeing the unsuccessful scenario portrayed; he needs an opportunity to think through an alternate ending in order to use different behavior the next time something similar arises. 

Michelle Garcia Winner has a recent publication called Social Behavior Mapping which will undoubtedly provide many terrific strategies, and Carol Gray (who came up with the concept of Social Stories) has a great little book called Comic Book Conversations which outlines another means of using visual support to aid understanding of language within social situations.   There is always more to learn about helping our children and clients improve in their social thinking; we are so fortunate to have these experts as resources.

Those of you in the Bay Area might be interested to know that Michelle Garcia Winner and Carol Gray are running a workshop together December 4th and 5th in San Francisco. They are very parent-friendly speakers!

Regular Boy Haircut

It's common for kids with sensory integration or autism spectrum issues to be afraid of haircuts. When you think about it, it's a pretty rational fear--a stranger straps you into a chair, wets your head, comes at you with scissors--but for kids on the spectrum even the sound of those scissors (or God forbid the electric trimmer) can send them over the edge into a flailing, wailing meltdown.

Our local shop is tricked out with toys, lollipops, even a Thomas train table to soothe the reluctant guest. The first time I brought Isaac he was about a year old, and the Russian woman at the front took a look at him, then me, and asked: "You want regular boy haircut?" Honestly, I had never even thought about it. What are the options, I wondered? Mohawk? Mullet? Bowl cut? "Sure," I answered. "Regular boy haircut." We went home in one piece: he with a new toy train, me with a slightly damp envelope containing a few wisps of his baby hair to keep as a memento.

Isaac withstood the first few haircuts pretty well. He let himself be distracted by one or two of the toys and didn't seem to mind the process much. Then, sometime around his second birthday, I brought him in but wasn't able to stop the haircutter before she spritzed him with water. It was all downhill from there: screaming, crying, hitting, falling to the floor--if you're reading this, you've probably been there. The woman did the best she could with a living, breathing, screaming target. He went home that day unhurt, but with puffy eyes and a cut that made him look a little like Edward Scissorhands on a bad hair day. I left a ridiculous tip.

The next few were similarly awful, so much so that at one point he'd start to cry whenever we drove down that particular block. So without really meaning to, we would stretch out the time between haircuts until he started to look like Elvis junior: at which point we would break down and bring him in again (although I'm telling you: I was sorely tempted to try barrettes). He had to be cut standing at the train table, with his hair dry, no smock, and at least one adult holding him at all times. We asked our ABA providers for ideas, and they suggested we try a social story about haircuts, and weave it in with some pretend play. It was slow at first: he resisted it and didn't seem to want to play haircut any more than he wanted to get one. But we persisted, and started to notice that the next time was easier (i.e., crying, but no flailing and hitting) and the next time, easier still (added bonus: the haircuts got better too). We would reinforce it by casually saying "Isaac, you really need a haircut" while ruffling his hair. Sometimes he'd disagree, saying "No haircut! Haircut's all done!"

Then about a week ago, Isaac was taking a walk with Beata, his nanny, and the wind was blowing his hair into his face. He looked up at her and announced "I need a haircut!" So Jesse took him a few days later. Isaac still cried, but it was bearable. He later informed us that he wanted another one. We didn't oblige, but at least we know we have the option for next time.