Saturday, July 26, 2008

Flowers at the Swing

Today, Jennifer Graf Groneberg of Pinwheels wrote:

If you’d like to honor Evan Kamida’s life, but can’t be at the memorial in person, you can do what I’m doing: I’m going to put flowers near a swingset here in Montana, take a picture, and post it with links, so Vicki will know I’ve been thinking of them.

Can you imagine it? Flowers at swingsets and playgrounds all across the country–flowers for a little boy who loved to swing, and for the mama standing behind him. I hope you’ll join me, and help spread the word.

The inspiration for this gesture comes from a piece that Evan's mother, Vicki Foreman, wrote called Mother at the Swings which was published in the on-line literary magazine, Literary Mama. Susan Etlinger read the piece to introduce the panel at BlogHer last weekend. I encourage you to read it.

I took this photo today of some flowers at a swing; for Evan, and for Vicki.

Flowers at the Swing 1.JPG

Friday, July 25, 2008

The Balloon, revisited

After the aforementioned balloon episode, I decided NOT to have the balloon write back to to Ben. It just seemed like it would add insult to injury, no matter how much the balloon would have insisted what a wonderful and happy place Balloonia is.

The memory of the balloon is still very much with us.

Every day since it happened, at some point in the day, usually when he is tired or sad or anxious, Ben will ask me:


"Yeah, Ben."

"Where's my balloon from Trader Joe's?"

"It went up in the sky and now it's in Balloonia."


Tonight was one of those nights when Ben just needed a good cry. The initial trigger was something small, having to do with the bathtub, but part way through the crying jag, he started saying, "I'm thinking about my balloon. I miss my balloon."

It's been three weeks since we lost the balloon, and in between now and then, then he's gotten two more balloons: one at a birthday party and one after a haircut. He's successfully held onto them and had fun with them in the house until they turned, as we like to say, tired and saggy.

We bought a bag of balloons and played with them, blowing them up, letting them go, shrieking and ducking as they spiraled around the rooom.

I was hoping these new positive memories would overwrite the initial trauma. But they haven't entirely done that.

I think for awhile, the balloon will be the ultimate symbol of sadness for Ben; and maybe the best way that he's found to put sadness into words right now:

"I miss my balloon."


I only just met Vicki Foreman and learned about her son, Evan. Vicki is an incredibly talented writer and and advocate for parents who have children with special needs.

Yesterday, I found out that Evan died after a sudden illness.

A woman I spent part of an evening with, a boy I never knew, but still so much sadness at the news.

When you have a child it's like you take a piece of your heart out of your body and put it in the world. You make yourself vulnerable to life's greatest heartache - that you could lose this person - this piece of yourself.

My heart goes out to Vicki and her family.

You can visit Speak Softly... to see a photo of Vicki and Evan.

The family has asked that donations be sent to:

The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children's Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

Wednesday, July 23, 2008

Cops and Robbers

Ben loves, more than just about anything at the moment, to be chased around the house.

Like most things in his life, it's become something of a ritual that follows certain important patterns and rules. We have to chase him in a certain way, in a certain direction, saying certain things. He laughs and giggles and squeals as if each time it is the very first time it's ever happened.

The chasing ritual, like many of the other rituals, has transformed gradually over time to include new twists such that every month or so it's become almost entirely new.

The pattern stabilizes for awhile and then transforms again until we've almost forgotten how we used to do it. It just is.

The current twist on the chase is that Ben demands to be chased and then taken to jail. I suspect that kids at school sometimes pretend to put each other in jail and he's picked it up there. The fact that he might be picking up imaginative play narratives from other kids is staggeringly encouraging.

So, jail is his bed, and as soon as Chris puts him there and - clang! - locks the imaginary door, Ben gets up and - screeeeetch! - opens the door and escapes, running out of the room laughing.

At some point, Chris added improvised Old West dialogue referring to Ben as a "mangy varmint" and shouting things like "dagnabbit!" and "great horny toads!" at points. Quickly the Sheriff Daddy routine became a critical part of the ritual.

"Will you be Sheriff Daddy and take me into jail?" Ben started to request each night.

Just for variety's sake, Chris then started doing it with a British accent, claiming to be, "Inspector Daddy of Scotland Yard" shouting, "Great Scott!" and referring to Ben as a scoundrel and a roustabout.

Ben now directs Chris to alternate the roles of Sheriff Daddy and Inspector Daddy, each time eluding their grasp until finally he is taken to jail, from which he quickly escapes. And it starts all over again. And again. And again.

But luckily the law is persistent, and good at accents, has enough energy to indulge a little boy's quirky antics every night.

Thank you, Sheriff.

Tuesday, July 22, 2008

My New Old Friends

I had the great fortune to attend a panel at the recent BlogHer conference in San Francisco entitled, "Blogging About our Children with Special Needs."

It was organized by Susan Etlinger of The Family Room and featured Jennifer Graf Groneberg of Pinwheels, Vicki Foreman of Speak Softly..., Kristina Chew of Autism Vox, and Shannon Des Roches Rosa of The Adventures of Leelo and His Pottymouthed Mom. (howz that for the best blog name ever?)

Rather than provide a recap, I'll just suggest you check out Shannon's write-up if you're curious.

I was even more fortunate to be invited join the group, plus several other special needs blogger-moms, for dinner and a bit of mild carousing afterwards. We chatted and laughed and compared notes on aspects of blogging, mothering and being advocates for our extraordinary kids.

There were so many things I normally find myself explaining, or dreading having to explain, in a group of other parents. But here, that was unnecessary. So much was already shared and understood that the conversation felt effortless and familiar and deep all at once.

My newfound feelings of community and solidarity were an especially welcome buffer against the ugliness of the last couple days.

It's lovely to make new friends, especially when they seem, somehow, like longtime pals.

Friday, July 11, 2008


Ben is hiding things.

I've discovered trains in the recycling bin and in my purse, colorforms in the freezer and the bread drawer, and matchbox cars in my night table and behind books on the bookshelves.

He's not doing it in secret: he's just as likely to hide things away when we're in the room as when he's by himself.

And he's very purposeful and unselfconscious about it. When he's done with an engine, he'll just walk over and, for example, put it in the dining room cabinet next to the place mats and napkins as if that's where it goes.

I first noticed him doing this when we were at a bookstore where there was a train table. He hid a few of the engines - presumably, so he could keep other kids from playing with them and know he had a stash for himself if another kid grabbed one from him.

At four and a half, he's realized that stockpiling scarce resources = power. Pretty smart, actually.

But resources at home are anything but scarce and there's no competition for them.

Despite this, he continues to redistribute his toys all over the house for no apparent reason.

Rebellion against the ordered Montessori system of bins and baskets? Establishing a just-in-time inventory of toys all around the house? Suddenly averse to clutter?

"Why are you putting the engines in there?"

"Shhh. It's a secret."

Despite his remarkable memory for just about everything else, he forgets where he's hidden things and now will wander around the house asking, "Where's Duncan?" Of course, we're very little help.

I just hope he doesn't start doing it with food.

Sunday, July 6, 2008

The Balloon

Today, Ben let go of a balloon by accident. We were heading back to our car after a stop at Trader Joe's in the Grand Lake area of Oakland. It happened at a busy intersection with a lot of bustling and distractions. He had demanded to hold it all by himself.

Yes, in case you're wondering, there was a loop tied in the string. No, he would not keep it around his wrist.

It happened so quickly and was so utterly unfixable.

Ben broke down immediately, completely, more intensely than I've ever seen before. It was a real, honest-to-goodness tantrum (rather than the aforementioned Robot Rampage). The kind with screaming and yelling and crying, where people up and down the block stopped and stared at us, and perhaps pondered calling Child Protective Services.

He did a couple of interesting things during his meltdown. One is that he used a lot of language and sort of narrated the experience while he was crying.

The other thing is that he asked - pleaded - that he be able to call his cousins on the phone to tell them about what had happened. (We had just said good-bye to them before the Trader Joe's stop.)

Language, plus wanting to reach out to others to tell them about something difficult seemed like a positive development. Although it was difficult to keep this in mind while walking down a busy thoroughfare carrying a flailing, out-of-control child.

In the car, he asked several times about where the balloon had gone. At one point he offered an idea of his own:

"Maybe it went to Balloonia."

I think that "Balloonia" is from a story at school, since I seem to remember him referring to Balloonia before, but I'm not certain. In any case, it's a lovely idea.

"Is Balloonia a happy place?" I asked.


"Is the balloon happy in Balloonia?"


When we got home he said, "Wow. That was so sad and scary."

He asked about the balloon several times during the night. Remembering that his teacher once had him dicatate a letter to me one day in school when he was sad, I asked him if he'd like to write a letter to the balloon, a letter that we could send to Balloonia. He liked the idea a lot.

Here's the very poignant letter that he dictated to me:

Dear Balloon:

I got you at Trader Joe's. And I held on tight to my balloon when the light was red. But then the balloon lost control and went into the sky and I was sad and mad.

I missed my balloon and it went to Balloonia. And I love my balloon. And sometimes things happen. But sometimes when they leave you could feel sad or mad.

I love my balloon. And I love the sky. And I like the clouds.

So, whenever you hold tight to a balloon, it could leave up in the sky. It could make you sad or even mad.


He read it back to me after I had finished writing, choking himself up a bit at "I missed my balloon..."

Now, here's the question: Should the balloon write back?

Stay tuned, perhaps, for tales of adventure from Balloonia.

Saturday, July 5, 2008

Justin Roberts' Pop Fly: A music review (and ode to liner notes)

It's a rare and beautiful thing when you can find music that children and parents can enjoy together.

One of our favorite artists inhabiting this tiny genre is alt-folk-rock-kids' musician Justin Roberts.

His songs are influenced by the pop-i-licious melodies and hooks of 70s and early 80s pop with a bit of acoustic roots thrown in for good measure.

His lyrics are unusually smart and funny for children's music, revealing a kid's point of view in everyday situations like having a buddy for a school field trip (See my teacher assigned him, but I really don't mind him.) and feeding a stubborn baby brother (C'mon baby brother, I know you're not in the mood. But won't you eat a little bit, eat a little bit of this airplane of food.).

And this lyric from Stay-At-Home-Dad:

At the park we get a lot of weird looks

He's wiping noses and he cleans and cooks

And when I'm standing at the top of the slide

All the Moms are freaking when he goes for a ride.

It's no wonder that parents of a certain age enjoy his music as much as the kids. When you listen to Imaginary Rhino for example, you hear a direct musical descendant of Orleans' Still the One or any song from that era where pop hits still were played on real instruments and had back up singers belting na, na, na during the chorus.

Other arrangements unironically feature the laid-back brass section of a Burt Bacharach song or buzzing synth-y power chords reminiscent of ELO or even Rick Springfield.

If I said that Justin Roberts is the kids' version of Fountains of Wayne, and that makes sense to you, then you know EXACTLY what Justin Roberts sounds like.

Last year we went to see him perform live at Twelve Galaxies in San Francisco's Mission District. Twelve Galaxies is a night club usually devoted to very loud bands you've never heard of with names like Flamingo Gunfight and Disastroid, so it was an odd and wonderful sight to see it on a Sunday afternoon, taken over by families.

Most of the parents seemed a bit nostalgic for the days when they would have been hanging out at a place like this on a regular basis, or just for the days when they were awake after 10 p.m.

Ben was a little uncertain at first, especially waiting for the show to start. But he recognized most of the songs, and while he wasn't quite ready to join the mosh pit of 6-year-olds at the front of the stage, he seemed to be enjoying himself by the end.

This week, Chris picked up Justin Robert's new album, Pop Fly, on CD. Since we obtain most of our music via digital downloads these days, this was Ben's first real introduction to liner notes.

Ben has always memorizes song lyrics by playing them over and over, just a few lines at a time until he's committed each line to memory. But he's always done it by ear.

As we listened to this album for the first time in the car this afternoon, we gave him the CD booklet with the song lyrics and he found he had a new, more effective way to learn the song, something that comes naturally to him: reading.

He listened to the first half of the title track Pop Fly over and over, reading the lyrics, moving his finger along the words in the booklet and singing along.

I remember how exciting it was to open a new album and to find that all the lyrics were printed inside, saving you the trouble of figuring them out yourself. I'd sit in my bedroom, listening, studying each song as it came on, reading along.

Of course, I wasn't reading liner notes when I was four. And Ben isn't listening to much Donna Summer.

Still, I loved seeing this door open for Ben - the connection between song lyrics and the printed word.

So, if you don't own any Justin Roberts albums, I urge you to check them out and perhaps you, too, will be soon belting out:

Is it a bird or a plane?

Should I pray for some rain or is it just a helicopter?

Suddenly I'm siezed by a horrible disease

Someone please, someone please

Call my family doctor

'Cause it's a

pop p-p-p-p-p-p

pop p-p-p-p-p-p pop fly, pop fly

Wednesday, July 2, 2008

Dance Recital

Last year, we enrolled Ben in dance classes at a local dance studio that specializes in classes for young children. The emphasis is on imaginative play set to music and creative movement rather than learning specific routines and steps.

Even back when Ben had a lot of difficulty engaging in group activity at school, he always loved when it was time for music and dance activities and would willingly participate. What he lacks in coordination he more than makes up for in enthusiasm.

Dance classes seemed like a good way to combine physical activity with a chance to interact with typical peers in a structured environment. The fact that a ball and rules were NOT involved was a big plus.

The teachers at this studio were incredibly patient with his quirks and managed to bring out the best in him. He looked forward to the session each week and clearly loved his teachers. Even those days where he spent more time making funny faces at himself in the mirror than participating, the teachers still welcomed us back and continued to encourage his creativity.

During last class of each session, parents and family members are invited to watch the children perform.

It just so happened that for the final performance this session, we had several family members visiting from out of town. Of course, they wanted to go to Ben's "recital."

Not knowing what to expect from Ben, I proceeded to set expectations rather low. The day before, after all, he had cowered in Chris' arms and repeatedly asked (okay, shouted) to go home during his preschool graduation as the other children stood in front of the parents and sang songs.

I pictured six adults sheepishly filing out of the studio mid-way through the performance after Ben melted down. I mentally prepared for the worst.

But he was glorious.

He played to the crowd, hamming it up like I've never seen him do before. He fed off his audience, at one point grinning coyly over his shoulder at us from the circle of dancers. Jumping, laughing, prompting the teacher and class for the part that came next.

No one watching would have been able to peg him as being "different" or having a "disorder" or would have described him as "in his own world."

He was just an enthusiastic little boy who loved being in the spotlight.

And, yes, this is part of who he is, along with the part that clings to my neck in noisy places and the part that rarely tells me what he did at preschool.

And for that afternoon, I got to experience the part of me that's a Stage Mom: applauding wildly, waving to him as he peeked out from behind the curtain, snapping pictures, and beaming like crazy.

dance 1.jpg

dance 2.jpg