Pencil and paper

When Ben was about eighteen months old, he liked to color on a flip chart I brought home. He'd sit on the floor and fill up the entire thing with crayon scribbles over the course of several scribbling sessions. He used many different colored crayons and his strokes were big and bold and confident.

Then around age two, the coloring stopped.

Instead, he preferred Chris to draw characters and scenes from his favorite books. Chris' impressive drawing skills met Ben's intense need for verisimilitude. For awhile, we had drawing pads full of Chris' lovely sketches of Maurice Sendak characters, but no scribbles from Ben.

Because of his fine motor delays, drawing was hard. And things that are hard aren't fun.

And why struggle with scribbles when he could simply outsource his art to daddy and get a better result?

Optimistically, we kept bins of crayons and markers and paper on low tables around the house, knowing that if the urge to draw would ever strike, Ben would be only steps away from art supplies.

But over the next several years, they went almost entirely unused.

When he started his special education preschool and occupational therapy, we saw handwriting assignments that proved he was writing at school, but it wasn't something he ever chose to do at home.

As kindergarten approached, I was anxious about his lack interest in writing and drawing. After all, at school, the primary means for demonstrating what you know is still with pencil and paper.

But his new occupational therapist did something I wasn't expecting.

She didn't pull him out of class to work one-on-one with him on handwriting drills. Instead, she worked out a deal with his classroom teacher that she would come to class once a week and work on handwriting activities with the whole class, then focus on Ben and one other student with OT services during the independent work.

Brilliant.

Lots of kindergardeners without IEPs need help with handwriting. The whole class is benefiting, and best of all, Ben isn't singled out as getting "special" help, nor is he missing out on classroom activities to leave for OT.

As a result, his handwriting has improved and he's needing minimal prompting in class to do the work. And he's doing something he never did before: occasionally writing and drawing at home on his own.

Exhibit A: Wall-E and Eve



Exhibit B: A roster of the Superfriends



Exhibit C: Self-portrait (created at school)



Exhibit D: non-required coloring (in the lines! multiple colors!) on a homework assignment



And then there was this.

One morning this week Ben had one of those out-of-nowhere meltdowns that just kept going on and on and on. He would scream at us, go in his room, slam the door, come out several minutes later to provoke another confrontation, go back in his room, slam, scream, sulk, slam, scream, repeat.

Then he stomped into the kitchen. He quietly and methodically collected a black marker, a piece of paper, and a roll of tape, made this neatly-lettered sign and taped it on his door.



Right after that, the tantrum was over. He was his sweet self again and he apologized. It was the first time he'd used writing as a communicative act.

Perhaps in the process of planning out how to make the sign and write the words, that frontal lobe logical brain had to turn on, deactivating the fight or flight lizard brain for a moment.

Whatever it was, there is indeed power in the pen.




Homework time

Our asthma initiation

Since he was less than a year old, when Ben got a bad respiratory illness, it usually manifested as croup.

I'm not sure how many times he had it, but I know it was often enough that whenever Chris and I were awakened by the familiar seal bark cough, we could spring into SWAT team-like action without exchanging many words.

One of us would gather Ben up in a blanket and bring him outside in the cool, damp night air. The other would fling open the doors and windows in the house, start the humidifier, and get a popsicle out of the freezer.

Other times - fairly frequently actually - Ben would just wake up with a garden variety cough and we would blame it on dry air caused by leaving the thermostat too high by mistake. We'd open his bedroom window and wait for it to subside.

The doctor even gave us an albuterol inhaler two years ago during a really bad cold when his cough included wheezing.

But no one ever called it asthma.

Until last weekend, that is.

Ben was sent home from school on Friday with a bad cough. When it didn't get better at home, we tried the inhaler but it seemed empty. I called to get a refill, but the prescription was two years old, and the doctor's office wanted to see Ben before a issuing a refill.

Our plan was to bring him in to the urgent care clinic the next morning.

A couple of hours later, Ben couldn't finish a sentence without wheezing, and with the blessing of the on-call nurse, we headed for the emergency room.

At this point, Ben was cheerful and energetic. He ran and skipped into the emergency room, singing along the way, and goofed around in front of the closed-circuit video monitor. I was expecting we'd get an inhaler and be home in an hour.

The triage nurse examined him and typed "Respiratory Distress" into her computer. The respiratory specialist was incredulous that we hadn't brought him in sooner, given the severity of his asthma.

Asthma? Did I mention he was skipping and singing?

After an hour of inhaling albuterol through a mask, the doctors still heard too much wheezing in his lungs. They wanted to admit us for the night.

I convinced Ben we were going to have an adventure in the hospital and that I would stay with him. He wasn't happy about it, but he stayed mostly calm, given that he had three wires stuck to his chest, a mask and a monitor strapped to his finger.

The really hard part came when we had to tell him he had to stay a second night.

I think Ben was stable and healthy enough to go home, but I get why they were so cautious. Especially if you consider that many families who come to Children's Hospital in Oakland don't have a primary care pediatrician. For some, this is the sole touchpoint to ensure that the family understands and will stick to the "Asthma Action Plan" that will keep the child from coming back.

A nurse sat down with us to make sure we understood what to do: yellow zone, red zone, two puffs, peak flow, identifying the triggers, long-term controllers and quick relievers.

We have a plan, and drugs, and we know what to do now to keep this from happening again, just like 1 out of 6 families in Oakland who have also a child with asthma.

Ben is home, healthy and doing just fine.

Mostly, I'm heartened that he was able to make it through an experience that was a sensory nightmare, that kept him from nearly every important ritual in his life, and one in which he faced nearly constant, difficult limits (like being confined to his bed for two and a half days).

He fussed, sulked, cried, and screamed bloody murder at us several times, but he also happily watched videos on a portable DVD player, read books, and played with the up-down controls on his hospital bed over and over again.

(Can I just tell you how much he loved the bed?)

If you would have told me last week, "Ben is going to have to go to the hospital on Friday night and stay for a couple days," I would have suffered a major anxiety attack.

But, surprise: there we were. And we did okay. He is capable of quite a lot. More than I ever would have expected.



Do you think I'm spoooooooky? (Ben mugs for the camera in the ER)

Anything is possible: two stories

Many of you regularly read the same special needs parenting blogs that I do, so it won't be a surprise when I say that I found myself stopped in my tracks, wiping away tears, and pumping my fist in the air all at once while reading two of my favorite writers recently.

For those of you who have not yet discovered the wonderful MOM-NOS or Drama Mama at Like a Shark, I direct you to these two stories and implore you to stop whatever you are doing and read them.

Every smile a memory: Cassidy, Dierks, and the transformative power of friendship

ability

These are stories about friendship, and about connection, and believing that amazing things are possible when individuals connect with something they feel passionate about.

Enjoy. Bring kleenex.

non sequitur

As Ben runs down our sidewalk
Me: What's wrong? Do you want to run away?
Ben: Yeah.
Me: Why?
Ben: All you need is caffeine

Not on my birthday
Ben: Mommy, it's your very last birthday.
Me: Why?
Ben: Because you're the only one who gets a present.

Ben: Daddy took me to the doctor and the doctor said that one day you went to the doctor and said that you used to take a bath in the morning.

Ben: I have a question for you. What if you open six packages and one suitcase?
Me: I don't know. What?
Ben: It will turn into dollars.
Me: Why?
Ben: Because you forgot to put dollars into it.

Me: Can I have a kiss?
Kiss
Ben: As well as you like!

After waking up in the morning, while still lying in bed
Ben: C'mon. It's under the bed. The table set. There's a cut through the wall.

_______________

I'm alternately baffled and amused by Ben's fascinating use of non sequiturs.

I've been trying to collect them over the past six months or so in order to share them with you. I've been mostly unsuccessful, usually forgetting to write them down, but I did manage to get a few.

We hear these non sequiturs and scrambled syntax pretty often. They linger even as his language skills continue to take leaps.

And Ben still has trouble getting words assembled when he's communicating something fairly novel. Sentences will often come out like this:

"Can you... Can you... Can you... Can you... get a piece of tape for this book? The page is ripped."

Sometimes he has to walk around while he's waiting for the words to come.

I imagine his feet powering gears his brain.

I imagine a spinning icon on his forehead that says "loading...loading...loading."

I'll admit that this post started as one of those, "Isn't he delightful" pieces, but as I assembled this list of quotes, I began to wonder: Is this a specific, clinical phenomenon? Does it have name? Is it common? How is this addressed by speech therapy?

What's your experience with language patterns like these? Do you see them in your child with ASD? Your typical child? Do you have them yourself, if you're on the spectrum?

Send me your thoughts as fodder for a follow-up post on this phenomenon.

I'm going to my room (post script)

I realized, after corresponding with a few of you about my last post, that I'd left out an important bit of nuance.

We aren't "sending Ben to his room" in the traditional time-out sense. In fact, it's been really important that we don't treat this as a punishment.

Again, thanks to Jordan at Communication Therapy for framing it this way.

We suggest to Ben that he go to his room the way a helpful but deadpan maitre'd at a fancy restaurant would offer a very important, stinky cigar-smoking patron a booth far from other customers.

"Sir, I believe you would be much more comfortable in our private booth."

Prompting Ben to go somewhere else to cool off doesn't focus (overtly) on stopping the behavior, it's just about moving it to another location. So it's a relatively unthreatening proposal.

The result is that the behavior does stop - but this happens because Ben self-regulates rather than responding to threats of punishment (which can just pour gasoline on the fire).

And, more importantly, I think that Ben is starting to grasp the real consequences of his actions: "You hurt people's feelings when you express anger this way."

The focus isn't on the anger, but on the expression of it. (Wow, I feel like I'm channeling Jordan right now.)

That's not to say that we aren't trying to teach better ways of coping to begin with, but once we've passed the point of no return in the rage cycle there's not a lot of learning going on.

Reflecting on this made me recall a recent Slate article on how lowering the emotional intensity with which we respond to our kids' behavior is often the best tactic for changing it.

Discrete Trials of Frustration (or: Thank you, Wii)

We have a Wii at our house. Wii is this Nintendo video game where you move around like you're really doing stuff and these characters in the game really do what you're doing and, well...

(So, okay. If you are Amish, or have been backpacking for the better part of two years, or are able to be blissfully unaware of popular consumer culture and you don't know what I'm talking about, it's a little hard to explain. You can go here to find out what Wii is.)

Anyway, we have one and Ben really enjoys it.

He likes the standard Wii games that come with the whole console-controller-thingy: like bowling, baseball, golf, and boxing. But he really loves the newer Wii Sports Resort, in which the Wii avatars visit Wu Hu Island, a sort of Wii Club Med. There, you can pick from archery, fencing, wake boarding, ping pong and frisbee, among other activities.

I credit the hours Ben has spent so far with Wii to introducing him - conceptually - to many sports that never would have come across his radar. Familiarity with different sports and games - even if you're never going to actually play them - is a useful sort of social currency.

After all, knowing things like what a pick-up game is in basketball and what it means to be on the fairway versus the bunker in golf gives you just a few more ways to join a conversation.

It's also helping to build real honest-to-goodness hand-eye coordination and gross motor skills.

Ben's ability to hit a softball in the real world increased dramatically after he mastered it in Wii. He went from not even knowing how to stand or hold a bat to actually being able to connect with the ball in the span of about a week.

(I'm sure some occupational therapist post doc is writing a doctoral thesis on Wii at this very moment.)

But there's another benefit to Wii that I did not anticipate, and it's probably the most powerful and most valuable one. It's also the most painful one for Ben.

Wii teaches you how to lose.

Ben has inherited a double dose of the perfection gene and this is amplified by his spectrum traits. One of the chief triggers for him coming unglued is failure: not being successful at something that he really wants to do.

This is a little different than being competitive. He doesn't need beat someone else to be happy, he just wants to be perfect.

But Wii doesn't care if you're a kid. And Wii doesn't care if you're really cute. And Wii doesn't know that you're on the autism spectrum and after all, successive approximations are really what's important, right?

No. If you miss the shot in ping pong, you lose the match. Your avatar hangs his head and the words YOU LOSE flash on screen.

There are plenty of activities - real and virtual - that provide this brutal, inevitable lesson for Ben, but the thing about Wii is it doles out lots of success along with the failure.

Unlike in the real world, Ben can get a strike in bowling and make par on a the golf course, so he's motivated to keep trying.

Wii ends up being a little like discrete trials in applied behavior analysis, a common therapy used with children with autism. You present the person with frequent, repeated opportunities to perform a skill that's just on the edge of their competence. The frequency means that there's lots of positive reinforcement with success, and failures don't have high stakes, because opportunities to try again just keep coming.

At the beginning of the summer, losing Wii games was one of the triggers for the explosive verbal and physical rages that Chris and I wrote about.

I began to think that I wanted to place a moratorium on Wii for awhile, that he just wasn't ready for it, he wasn't equipped with the coping skills he needed and that the frustration was outweighing the fun.

On the other hand, these frequent outbursts gave us frequent opportunities to try a new strategy for dealing with rage: just letting him be mad, but making him to go to his room and cool down by himself.

The regular frustration that Wii served up like a disappointment batting cage gave Ben lots of opportunities to practice his coping skills, too.

Jordan over at Communication Therapy gave me great coaching on setting this up with something like this: "You can say those words when you're mad, but they hurt our feelings, so if you're going to say them, you have to go in your room where you can't hurt anyone."

At first, retreating to his room was something he did towards the end of the rage cycle, with our (usually physical) prompting.

Then, little by little, Ben would go to his room by himself even earlier in the cycle. Next, it became a regular part of the ritual. Often accompanied by a dramatic door slam and in one case the declaration, "I'm going in my room to (screaming) CALM DOWN!"

Lately when he's upset, Ben often goes to his room and slams the door, with no prompting from us, rather than exploding in a verbal rage or physically acting out.

Usually after five minutes, we hear him happily telling a story with his trains or we peek in to see him engrossed in a book. Sometimes, he even comes out calmly and apologizes.

I think many of you know how amazing this is, what a huge corner I feel we've turned, what a don't-write-about-it-or you'll-jinx-it moment we're in.

Ben's emotional outbursts are still happening and he still has a long way to go to learn the skills that that will let him say, "Oh well - whatever." more often. The period before he goes to his room is not pretty, but it's getting a lot shorter.

And he is learning that he CAN let go of those feelings and not stay hooked. Maybe he is starting to understand that he is the only one who can get himself back to a state of equilibrium.

And I think I have, at least in part, a video game to thank for that.

Dispatches from Kindergarten (and a blatant fundraising appeal)

A few weeks ago, Ben started Kindergarten in a big public school. It's the kind of school where there are bells for each period, and students line up on the blacktop before school starts, and everyone has an assigned desk with his or her name on it, and the hallways have shiny linoleum floors.

At Ben's new school, the students call the teachers "Ms." or "Mr." rather than by their first names, and the principal comes to work in a neatly tailored suit every day, even when the temperatures climb into the 80s. Families are encouraged - but not required - to send their children to school in a uniform.

And there's homework.

Toto, I don't think we're in preschool anymore.

I was nervous about the transition into a much more formal, traditional school environment where expectations would be higher and routines would be more rigid.

But Ben is doing great, possibly because of that high degree of structure and predictability.

His teacher and the whole team of professionals that support full inclusion and his IEP goals - with things like a social skills group and extra help with fine motor skills - are excellent.

And like most schools, a parent organization works to raise extra money to pay for things that public funding no longer can: a library and a librarian, a computer lab, and enrichment activities from local arts organizations.

So here's where you come in. You knew this was coming, didn't you?

Ben's first fundraising activity is a walk-a-thon on October 24th. Students will walk laps around the school campus (ten laps for Kindergartners) and donations will go to the school PTA to support a variety of programs and services for the students.

So if you like the blog, if you support public education, and if you're not also shaking down your friends and family to support your kids' school, click on that Donate button over in the right margin and put a couple bucks in our PayPal account that we can pass along to the PTA on behalf of Ben.

Thanks!