Monday, February 23, 2009

"I think I have a problem..."

I've been dreading this inevitable moment:
Ben: Mommy, I think I have a problem at school.

Me: What's the problem?

Ben: It's at [Montessori] not at Tilden.

Me: Okay. Can you tell me about it?

Ben: Well, sometimes J. yells at me "Go away!" I chase him and copy him and he yells at me.

Me: It sounds like that makes you feel sad.

Ben: I feel a little disappointed.

I knew that a few of the kids in Ben's afternoon program have been teasing Ben and excluding him sometimes, but this was the first time I heard from him that he's aware of it.

And I suspect that he's more than just "a little disappointed."

In the short term, we need to help Ben understand that not all kids like to be copied - even though his older cousin accepts that this is Ben's form of hero worship.

In the long term, I don't know how to help Ben understand and deal with teasing and cruelty from other kids. I started working on some strategies with him this weekend, like going to get help from a teacher, or finding some different friends to play with.

Ben has got some of his own ideas as well.

"If a friend is teasing me, I can tell him to stop or kick him."

Okay. Partly right.

I think real root of my dilemma is that I don't think Ben fully understands the ways in which he's different from the other kids, and right now, there's something really great about that.

But as he grows up, I want Ben to be self-aware and conscious of his strengths and challenges. I want him to be proud of his abilities and his identity as a person on the autism spectrum, understanding that there are aspects of life that will be hard, but that he can learn and adapt.

So when do you start that conversation? I get what that conversation might sound like at 10 or 12, but what about at 5? It doesn't feel like something I should bring up before he begins to discover it and talk about it on his own, as painful as that process may be.

Ben's differences aren't physically obvious - such as tics or stims - and they are hard to put into words a 5-year-old with information processing difficulties can understand.

For now, I just plan to take things one issue at a time and keep addressing some basic social skills, hoping that the deeper understanding will unfold naturally, over time.

I'm looking for your guidance on this one, friends.

How have you helped your child with issues of teasing or exclusion or being different? When and how did you help your child develop self-awareness and self-advocacy? How do you talk about your child's differences without allowing him or her to become defined by them?

Sunday, February 15, 2009

Spectrum Siblings

I'd like to introduce you to one of my favorite new blogs, Spectrum Siblings, written by Cale. He's a college student with Aspberger's who is studying Behavioral Neuroscience and Social Psychology. Or as he puts it, "I'm majoring in autism."

I think of Cale as a Sherpa guide for spectrum families. He specifically reaches out to parents through his blog, explaining what our kids might be going through from his own personal experience.

He's able to describe in vivid, insightful and often funny detail what it feels like to have sensory overload, or to not know how to interpret arbitrary, unspoken social rules - like knowing which way to go in a hallway to avoid an oncoming person (How does anyone figure that out, anyway?) - or the absurdity of asking a child to name a single favorite color (color for what? a house? a shirt?)

For those of us with younger children who are not yet as self-aware and articulate as Cale, his posts provide a glimpse into what the possibilities of life on the spectrum as a young adult can be.

And those possibilities are pretty exciting.

Thursday, February 12, 2009

Please Save Tilden School

Ben has been incredibly lucky to have spent the past two years in an amazing program at Tilden Elementary School in the Oakland Unified School District.

Unfortunately, Oakland wants to close Tilden next year and distribute the students and teachers to four under-enrolled schools.

Tilden serves children from pre-school to third grade. It's unusual in that 80% of the students have special needs and about 20% of the student body are general education kids from the surrounding neighborhood.

The schools is a model for inclusive education. The special needs students are fully included in the life of the school, and the regular education students learn from a very early age to accept and embrace the differences in their classmates as a fact of life.

Some teachers have a double credential in special education and general education and they teach integrated classes with a mix of special needs and typical students.

There are also special day classes - like the Language-Enriched Pre-K class Ben attends - that focus on specific special needs.

When Ben walks the hallways, every adult knows him and says hello. Teachers who have never had him in their classes stop me on campus and tell me about a funny thing he said. All of his teachers have been extraordinary and feel like members of our extended family.

The general education students do well here too. Probably because the teaching staff is so savvy about what it takes for all children, regardless of their learning style, to succeed. The second graders scored 799 on their API numbers this year. The state considers 800 to be the score of an excellent school.

But its an expensive school to run with such a high population of special needs students. The facilities are run down and in need of repair. The district, like every public institution, is facing difficult trade-offs.

Tilden is a school of underdogs: special needs kids, but also the general education population. They don't come from one of the affluent hills neighborhoods, but rather from more disadvantaged areas where parents are often working more than one job to make ends meet.

With fiscal shortfalls and facility code problems, the district thinks that closing this small school and shuffling students around is the best option.

But it would be such a shame to lose this little diamond in the rough of a school: run down on the outside, but so full of heart and compassion and dedication on the inside.

Our family will be okay. It appears that Ben will be placed in one of the full-inclusion programs in a regular kindergarden next year. But I'm worried about the other families, and the families that come after us that won't have Tilden as an option.

So I'm working with the PTO to fight against the closure of Tilden and I have a request for you, especially those of you in the East Bay.

We're establishing a Friends of Tilden list. Community organizations, educators and families (alumni of Tilden, especially) can sign a letter to say they support the PTO in our opposition of the closure. It's a small thing, but maybe the school board will see that this is not just a small group of difficult moms, but a larger community.

Email me or leave a comment if you or anyone you know might be willing to sign up as a Friend of Tilden. Perhaps there's a small chance we can keep this wonderful school alive.

Monday, February 9, 2009

Paul Collins (and me) on The Big Bang Theory

Paul Collins recently wrote an article on the CBS sitcom "The Big Bang Theory" for Slate Magazine.

I thought it worth sharing for a couple reasons. First of all, if you have not read Paul Collins' book Not Even Wrong: A Father's Journey into the Lost History of Autism, stop reading this right now and go either order it online or, if you're concerned about the demise of local small businesses, go out to your favorite independent bookseller and purchase it.

Not Even Wrong is part historical investigation of autism (Collins is a historian and McSweeney's editor) and part memoir of a family coming to terms with their son's diagnosis. The two distinct aspects of the book are beautifully threaded together, illuminating each other, creating a story that is far more compelling and intelligent than the typical parent-autism-memoir.

Previously, I've written about the radio interview with Paul Collins and his wife, Jennifer, that led me to this book.

But, anyway, this article in Slate.

I watched a few episodes of The Big Bang Theory after my parents recommended it. The premise involves:

...the travails of four Caltech researchers... The running joke of The Big Bang Theory is that these guys are brilliant at understanding the workings of the universe, yet hopeless at socializing with...a waitress who lives next door.

But a more subtle theme is that [one of the characters] Sheldon — flat-toned, gawky, and rigidly living by byzantine rules and routines — appears to have Asperger's syndrome.

I found a good deal of it funny and well-written. Clearly, there are a bunch of real scientists and geeks on the writing staff because regular people just could not make up the dialogue, especially the diatribes on Klingon scrabble or quantum physics.

It's fun to see a character on the spectrum, even if not explicitly stated, in a comedy rather than a weepy Hallmark Hall of Fame-type show. It seems to normalize the traits, while at the same time highlighting (lovingly) their comedic aspects.


But, for me, The Big Bang Theory is actually more funny when you're talking about it or quoting it than it is when you're watching it. That's because it's shot live, in front of a studio audience with the laughs "sweetened" after the fact by a laugh track.

For me, the sound of a laugh track helps me understand what it might be like to have Sensory Processing Disorder. The sound is grating to me and makes me feel agitated such that I can't focus on anything else.

Not to mention it ruins what would otherwise be fine comic timing, as lines are "held" unnecessarily for laughs.

If this show were shot and edited like 30 Rock or Arrested Development, with all the quick cut-aways, throwaway flashbacks, and faster, more subtle timing, it might be one of the best shows on TV.

Or, perhaps you could just combine the best of both worlds. Sheldon and Leonard could somehow get hired as some sort of physics consultants for GE, and they would meet Tracy and Liz and Jack, and get caught up in some kind of hijinks and mistaken identity on the set of the late-night comedy show and...

I guess I'll just leave that one to the fan fiction crowd.

Sunday, February 8, 2009


Ben was drinking hot chocolate from a small, fancy tea cup that came from my grandmother's china set. When I was a kid, she used to serve me coffee in it - with lots of cream and sugar - and it made me feel very grown up.

I pointed out to Ben that the cup belonged to Edith and reminded him that Edith was my grandma and that Edith was grandma Judy's mom.

tea cup.JPG

"She died a long time ago." Ben added.

"That's right. Before you were born."

The concept of death has just entered our vocabulary and Ben is still figuring out what it means. He experiments by dropping it into conversation now and then.

"She's an invisible spirit."

The idea that people who die become invisible spirits was my first clumsy attempt at a reassuring death narrative, since we haven't yet given Ben a theological framework for the afterlife.

Then, seemingly out of nowhere, Ben asked:

"Does Edith look like Brittany?"

Brittany had been Ben's wonderfully fun and loving aide at his afternoon pre-school, until she recently got a full-time teaching job.

At first I dismissed the comparison as one of Ben's frequent non-sequitors.

Then, I stopped in my tracks and had the realization: Oh my god. He's right. Brittany does look like a young version of my grandmother.

I went to my dresser and checked a photo that my mom gave me for Christmas. It's a portrait of my grandmother in her late teens or early twenties.

The likeness was uncanny.

The photo had been lying face down on my dresser since the night I had unwrapped it.

To my knowledge, Ben has never seen this photo (or any others) of my grandmother. Chris didn't show him. Neither did my parents.

I can't figure out how he made that connection. How did he know about this likeness, one that I had not even realized?

I'm at a loss for a rational explanation.

Maybe that spirit is not so invisible after all...

ben and brittany2.jpg

Brittany with Ben


My maternal grandmother, Edith Johnson