Sunday, February 24, 2008

To the parents at today's party

I didn't get to talk with many of you at the birthday party today. You may remember me as the one who was sort of hovering around my kid, following him from room to room with a nervous look on my face while everyone enjoyed the food, activities and conversation.

If you wondered why my son wasn’t interacting much with the other fifteen kids or doing the art projects or playing the games it’s not because he doesn’t like people or that he’s a bad kid. He’s actually pretty charming and funny if you can get to know him in a more intimate, lower-decibel environment.

To those of you who were in the room any of the three times when Ben threw a screaming tantrum and tore apart the train tracks I’m sorry if it was unnerving. He’s really a very easygoing kid at home… as long as no one touches his trains.

And to those of you who recognized us from the Montessori School and you asked why you don’t see us at school much anymore: I know that when I started talking about special education services and early intervention programs and autism you may have thought “too much information.”

Thanks for being so nice and humoring me. It’s hard to explain our situation in three sentences or less.

And if you saw me come out of the bathroom and my eyes were a little red, it’s just because I had to unleash a little of the emotion and anxiety hiding behind what I hope otherwise came off as a polite smile.

You see, I have this paranoid feeling that there’s this club that you all belong to: The Parents of Normal Kids Club. And I’m not a member. While we all have a lot in common as parents, I don’t know how to hang out at these parties and look all relaxed and “whatever” and drink coffee and chat with you because I am afraid that at any moment my son might really freak out.

I know all the reasons why this is ridiculous and whiny. That it’s a complete, utter illusion that I project on all of you, and for all I know, many of you might have been feeling similarly ill-at-ease for lots of other reasons.

But today I was reminded what a huge gulf lies between the safe, supportive, predictable environment we’ve created for Ben among our immediate family, and the unpredictable and chaotic world out there. And I wonder how we’ll help him cope.

And I’ll admit one more thing.

When Ben told me, nearing the end of his patience for waiting for the birthday cupcakes, “I want it to be over,” I said quietly, so only he could hear, “I do too, buddy. I do too.”

Sunday, February 17, 2008

The Shiner

I just keep seeing the moment over and over again: his face hitting the granite and me, powerless to stop it.

We were strolling in Yerba Buena Gardens and things were starting off so well. Ben was excitedly running towards a ramp that would take us to the top of a waterfall fountain. He was going at top speed and looking back at me. The look of joy on his face made the moment of impact all the more heartbreaking. He never saw it coming: the stone block - designed as a bench - right in the middle of the walkway.

His legs hit first and the forward momentum wrapped him around the top of the block, smacking the side of his face down on the surface.

We found a quiet place to sit and let him cry. The fact that he was crying, in retrospect, was a good sign. A year ago, he would have gone into an emotionless rampage, attempting to hurt himself the same way again. Having gotten wise to this, the first thing Chris did was show him what happened so that he didn't feel the need to re-enact the injury in order to process it.

He burrowed his face into me and was eerily quiet for a long time. We got some ice and stuffed it into an extra sock that was in the backpack, fashioning a makeshift ice pack. "Does he have a concussion?" I asked, going into my normal worst-case-scenario mode. "I want to go home," he whimpered.

We were both determined to NOT let this send us all the way back across the Bay Bridge to the afternoon doldrums of trains and videos.

After awhile, he sat up as Chris read a book we had brought along. I suggested we go find a treat - some cake or a cookie - and he was amenable to this. "I want to go home," he reminded us on the way to a nearby Starbuck's.

"Right after we have a treat." I knew sugar could buy some time. It's in the genes.

Right next to the Starbuck's in the Metreon is the Chronicle Book Store. After a few bites of a disappointingly dry Snickerdoodle, he wandered over to the books. Things were looking up.

He planted himself down in the children's section and studied a stack of chapter books from the Hot Dog and Bob series, still a few years beyond him. His concentration and focus seemed almost meditative, even more than usual.

I'm not sure if this is common to other Hyperlexic children, but looking at words and letters seems to have a profoundly calming, centering effect on Ben. It has for a long time, since before he could actually read. Today, he sat on the concrete floor for maybe 20 minutes or more just slowly turning pages, disappearing into the book.

When he got up, he was cheerier. He still wanted to go home, but was now transposing a Dora story to our walk. "First we'll go over the steps, then we'll walk over the bridge and that's how we'll get to the car!" We took the "long way" to the car, which was really just strategically walking past the children's playground. By the time he saw the playground, he forgot about going home and the swelling red patch on his face and just ran and slid and climbed.

He didn't even protest when we went and got a burger at a nearby restaurant for lunch. We sat down for one of the most calm, easy restaurant meals ever - all without the usual aid of a stack of books to help pass the time. He was happy to just goof off with the silverware like any other kid.

Back at home, he ended up falling asleep on top of me while we lounged on the sofa. The emerging shiner made him look like a miniature hooligan, passed out after a bar fight. Although the tough guy look was tempered a bit by the fact the he was holding Cranky the Crane in one hand and his stuffed monkey in the other.




Friday, February 15, 2008

Valentine

Me (whispering): Ben. Guess what. I have a secret. Want me to tell you?

Ben (whispering): Yeah.

Me (whispering): I love you.

Ben (whispering): I love you too, Mommy.

Monday, February 11, 2008

The Sound of Language

The hills are alive...

I never thought I’d be saying this a year ago, but Ben has become quite a chatterbox.

Until this year, most of his language has consisted of repeating or reciting. And as I’ve written previously, he has a knack for using memorized language in a plausible context, so the casual observer sometimes doesn’t realize that his language is echolalic.

Recently, however, he seems to be talking a lot more. Seriously, a lot more.

And get this - most of it makes sense.

And quite a lot of it is completely appropriate, spontaneous and ORIGINAL.

(Cue the marching band and the balloon drop.)

Interestingly, even as this amazing burst of language is happening, there’s still something very different about how Ben talks compared to his typical peers. It’s so hard to convey in writing because it’s about intonation and sound.

He has this lilting, chipper style of speaking that sounds like an upbeat TV show host. For Bay Area folks: think Doug McConnel from Bay Area Backroads, for example.

I think I know why this is.

Ben learns language from listening to adults, from reading books and listening to adults read books, from watching videos. He rarely picks up language – beyond the occasional catch phrase – from other kids.

Adults are so much more predictable and controllable for Ben. He can ask us to repeat things. He can have us read the story over and over. He can watch the video again and again. Adults will adapt what they are saying to help him understand.

Language from other children, on the other hand, must go by, from Ben’s perspective, in a confusing, nonsensical blur.

So Ben’s language has a polite, precise and sing-song-y cadence that we adults tend to use when we are reading a story or talking to children, TRYing to TEACH them how to comMUnicate like NICE GIRLS and BOYS!

Grownups find this quality of Ben’s completely charming, of course.

But unfortunately, it’s one of those things that is beginning to set him apart from his same-age peers. Especially those of the 4-going-on-16 variety who have already cultivated an air of adolescent cool. And I have a feeling it’s going to get worse before it gets better. His NT peers’ social sophistication will increase far faster than his own, as well as their capacity to be judgmental and, sometimes, just mean.

I don’t even like to think about it.

Luckily, Ben is already a gifted mimic. I’m guessing that we can, at some point, consciously teach him how to sound more like a kid. And as much as I wish that wasn’t necessary, I know that playground politics will require it eventually.

So far, our best avenue for this is a Backyardigans episode called Surf’s Up where the characters all go around saying, “Dude!”

We’ve already started practicing that one.

Sunday, February 10, 2008

Fourth Birthday

After a bit of a lull due to a business trip, too much work, illness, and generally being too tired at the end of each day to write, Hyperlexicon is back.

In the interim, Ben celebrated his fourth birthday.

Every year on the two days leading up to his birthday, I think back on what I was doing at various moments in 2004 and make remarks like these to Chris at regular intervals:

“Well, right about now we were walking up and down Ulloa Street and I was stopping every once in a while for a contraction.”

“This is right about when I started throwing up.”

“Four years ago right now, they were giving me the epidural.”

“This is when I had been pushing for three hours and they kept saying ‘any minute.’”

The whole experience lasted more than 36 hours from first contraction to Ben’s surgical arrival into the world. The birth I had envisioned as natural and drug-free ended up as a sampler plate of every medical intervention known to modern obstetrics. “If this was 100 years ago,” my OB told me during my follow up exam, “one of you might not have made it.”

In the end, Ben got here his own way. His birth gave me a preview of how hard it is to transition him from one place to another, and it taught me the first, most important lesson in parenting: chuck your expectations overboard and hang on.

*********************

My first requirement for Ben’s birthday party was that it be held anywhere BUT our house. Since it generally rains during this time of year in California, this meant that we find a place indoors to rent.

We scheduled a party at a local gymnasium where Ben took a gymnastics class last winter thinking that several trampolines, a foam block pit and an obstacle course would perfectly suit a group of 3 and 4 year olds. Plus: no house to clean, no toys to fight over.

But when several key guests were unavailable for that date, we decided to have the party on different date. Unfortunately, the gym was already booked. We put our fate in Mother Nature’s hands and invited guests to gather at a local park instead.

It started to rain a week before the party and it didn’t stop. When I realized that we’d have to go with Plan B and host the party at our house, I felt a deep dread in the pit of my stomach. When a few parents called to politely decline due to illness or other conflicts, I was secretly relieved.

You see, Ben is extremely territorial. Usually, when other kids touch his stuff – especially trains – Ben unravels. Would the intrusion of friends from school into Ben’s inner sanctum be more than he could stand? With a house full of kids, we’d certainly have to put the trains away, but what about every thing else?

We set up a few stations around the house with games, musical instruments and art activities, and borrowed my mother-in-law’s enormous box of Legos.

The Legos were a godsend. They were the hit of the party. All the boys gathered around the box and were content for about 45 minutes of calm parallel play. Ben seemed perfectly happy to have the house full of people and since the Legos weren't HIS per se, he didn't seem to mind that everyone else was enjoying them, too. I buzzed around nervously, wondering if this was the calm before the storm. But everyone seemed so…happy.

We seated the kids for pizza and cupcakes. Ben ended up at a little table with two friends who are also into Thomas trains, Aidan and Sawyer. Aidan and Sawyer were talking about the story “Percy’s Chocolate Crunch,” recounting various plot points.

With a little coaching from Chris, Ben joined in the conversation.

He talked ABOUT the story. He didn’t RECITE the story. He sat at a table with two typical peers and CONVERSED about a shared interest, taking TURNS. While it wasn’t exactly the Algonquin Round Table, it was an amazing sight.

In fact, there was really nothing about Ben’s behavior that day that made him stand out to a casual observer as different from this group of neuro-typical peers. My feeling of dread dissipated into euphoric relief.

After nearly 2 hours (I thought we’d only last 45 minutes) the guests from school left, each getting a hug from Ben. His cousins stayed to play longer. When I suggested that they watch a video that Ben didn’t want to watch at that moment, he lost it and melted down into a tantrum.

I think he had worked pretty hard keeping it together, being such a sparkling host. And after all that plus 3 cupcakes, I’d say he did remarkably well.

Happy Birthday, buddy.


Friday, February 1, 2008

Reality Check

Over the last several months, we've seen Ben's skills in imaginative play blossom. It's been amazing and encouraging and just really fun to actually pretend things with him, and while he mostly sticks to a script from a story or video, I see him improvising more and more often. Once in awhile, he just goes for broke and invents something out of nowhere.

It's also been a bit exhausting. His insistence on fidelity to the book or video we're acting out means that we have to stay on our toes and make sure we get our lines right, strike the right pose at the right time and not forget our blocking. He has been known to shove me into position saying, "Mommy stand there and do this." Sometimes I feel like our house has become a summer stock company where Knuffle Bunny, episodes of The Backyardigans and the collected works of Ezra Jack Keats are playing in repertory.

But a few weeks ago, Ben began to do something that made it seem like he was trying to hold his imagination in check.

In the midst of acting something out he'd stop and say, "No, no. I'm not Pablo and you're not Tasha and we're not robots. You're Mommy and I'm Ben and we're at home."

Soon he was saying this every time we began to pretend, and with a tone of slight anxiety. I wondered: just who is he trying to convince - me or himself?

He is clearly such a creative and imaginative kid. Is some part of his brain, perhaps the concrete and literal - and more autistic part - trying to clamp down on the freewheeling, improvising artiste that is emerging as part of his personality? Is it just a battle between his right brain and left brain (or has that concept been finally discredited)? Is the surge in his imagination overwhelming for him and is he just struggling to process what it means to pretend?

In any case, I didn't want him to feel afraid of his imagination, and I thought, "Okay, I'm going to need some Talking Points for this one."

Talking Points, at our house, work exactly the same way they work on Sunday morning political talk shows. I need to get a complex point across, but I can't actually have a conversation with Ben. So I choose a simple and concise phrase that I can repeat each time a situation presents itself. Talking Points are worded in such a way so that Ben can 1) process them 2) memorize them, and eventually 3) internalize and understand them.

Here's what I came up with for when Ben started to show anxiety about our identities:

"We're always, always Mommy and Ben. Even when we're pretending."

I think it's working. Lately, Ben is starting to act out stories again without shutting down the show. He also will remind himself by repeating the line, "We're always Mommy and Ben. Even when we're pretending," if he does stop himself.

He didn't pick it up immediately. But I knew we were making progress when once, after he gave me the "I'm Ben and you're Mommy" lecture he said to me, "Remember...we're always pretending to be Mommy and Ben."

Yep. I guess we are.