These strangers, these friends, this family

It has been a very sad week.

I got the news on Thursday that Vicki Forman's son Evan died very suddenly and unexpectedly, and I have been reeling since the moment I hung up the phone. I recognize the feeling, because it's one I've had before. I am grieving.

In many ways, I hesitate to put the word in writing, because as soon as I do I think "Who are you to grieve? Vicki and Cliff have lost a son. They are grieving. You are an intruder in their grief."

And yet, I feel it. I carry it: the heavy ache of grief. So I give myself some space for it. I think, "Okay, grieve if you must. But grieve quietly. Grieve privately. This is not your story to tell."

But here I am - writing, because it is what I do, how I make sense, who I am.

I've realized something in this grief: I've realized that I loved Evan. I didn't just read about him, know about him, and grow fond of him. Though I never touched his skin, never heard him sing, and never saw him swing his cane, I loved him with a fierceness that shocks me.

This realization leads me to another: there are many children - so many children - whom, through blogging, I have come to love with this same intensity, this same ferocity, this same wholeness of self. And I am suddenly, painfully, acutely aware of the number of people whom I might not recognize on the street, but who have become woven tightly into my life and into my heart. That awareness frightens me.

It's frightening to know so suddenly and with such absolute certainty that I am this vulnerable, that there are this many people who could trigger this sort of pain and grief in my heart - that there are so many stranger/friends who have become a part of my family.

And then, there's another awareness, another realization, that sidles in to coexist with the fear, as my brain follows these thoughts toward a logical conclusion: If I feel this way about these children, I think, then there must be some stranger/friends out there who feel the very same way about Bud.

I never really understood that until now. I knew people were cheering us on. I knew people recognized Bud's charm and wit and engaging personality - but now, as I grieve the loss of Evan, I recognize that for some of you, your connection to Bud - to us - is something entirely different. Now, suddenly, coexisting with the vulnerability, there is strength; with the fear, there is assurance; with the grief, there is joy.

I am reminded of something that Vicki wrote last year:

Many of my friends who have children with special needs will testify to the profound need we sense for that child to be on this planet, teaching us about love. I have felt that with Evan, and I've seen that with others. These children show us how to open our hearts in ways we never knew were possible. Perhaps that makes our hearts stronger, braver, or kinder. Or perhaps our hearts are simply, by virtue of being open, wider and more expansive.

But inside this wider space we have discovered that amidst the love there is also the heartache, and within the heartache, the joy. The will to live and the will to love.

And I am reminded of Evan, a little boy with an enormous spirit. A boy I loved.

And so I grieve, openly, out loud and in writing. I grieve with love and with heartache, and I struggle to search for the joy hidden within it.

And somehow, my stranger/friends - somehow I have a feeling that maybe you do, too.


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Contributions in memory of Evan Kamida may be made 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

Sleep, little willow

With thoughts of love and peace and comfort and strength in a time of unthinkable sadness, to friends who are far away, but close to my heart.

Is this thing on?

Hey! It's my blog! I remember my blog!

Hello, blog friends! Thank you for continuing to check in to see if I'm here. I'm sorry I haven't been. It's been a busy summer.

It's been busy for a lot of reasons. We've had some vacation getaway time on a lake and at the ocean. Bud's been taking - and loving - swimming lessons at the college pool. We've been engaged with a fabulous summer school program that Bud actually looks forward to. We've been waging the war on thunder fairly successfully. We have, in other words, been busy with lots of things that could make for good blog posts - I've just been too busy living them to have any time to write about them. So I send my apologies to those of you who have checked in day after day to find the very same blog post at the top of the page. I'm glad to say that the hiatus has ended, because there's something that I'm really excited to tell you about.

But, before I do - did you read the news out of Children's Hospital in Boston a couple of weeks ago? Here's the laypersons version of it: Researchers have identified six genes related to the neural connections required for learning that appear to be present and intact, but inactive, in some people with autism, suggesting that the key to treating autism lies in reactivating those dormant genes. Separate but related research shows that many of the "inactive" genes involved in autism also have a high degree of plasticity, which may make them especially receptive to reactivation.

This is very good news, and it has everything to do with the news I need to share, because it's this very theory - a rejection of the "hard boiled egg" theory of brain development (i.e., there is a limited window of opportunity for change, because once it's done, it's done) and the belief that real progress in autism hinges on creating opportunities for a "do over" in development that will create and strengthen the neural pathways that are necessary for learning - that underlies the autism intervention strategy that makes the most sense to me - RDI or Relationship Development Intervention. And we are currently diving head-first into a structured RDI program.

If you're a long-time reader, then you know that I've been a believer in RDI since I attended a two-day parent workshop in the summer of 2005. You also know that since that time, I've done a lot of research on my own and jury-rigged a renegade RDI program without the aid of a consultant, based only on my own limited understanding of the RDI philosophy.

About a year ago, I discovered that I'd gone about as far as I could go on my limited knowledge, and our family life took a detour that required that we focus energy on some other areas of our life, so though I tried to continue to parent through the lens of the RDI philosophy, I stopped actively "doing" RDI.

All that is changing, though, because - as is our luck, in that all the right people come into our lives at just the right times - Bud's former Kindergarten teacher, known to longtime readers as the great Mrs. H, has left teaching after thirty years to work full-time in the world of autism and is in the process of becoming certified as an RDI consultant. We are lucky enough to be one of her first families, and it is very, very exciting.

We had our first official meeting with Mrs. H last week, and my mom and I spent this week watching online seminars and responding to reflection questions, building up our store of knowledge about RDI and boosting our confidence and competence at using it successfully. As I've watched the e-seminars and listened to Dr. Gutstein talk about forming and strengthening neural pathways and giving the brain the opportunity for a developmental do-over, I've had the recent research from Boston buzzing in my head. This is it. We're going to focus on those inactive genes and we're going to figure out what it takes to get them moving, to get them connecting, to get them positively flying.

Because here's the the thing - Inactivity? A lack of progress? It's fleeting. A blip on the radar. It can feel pervasive and eternal when you load the same blog page day after day after day after day and see the same tired post you've been reading for weeks, or when you live day after day after day after day with the same Teletubbies video or the same peanut butter sandwiches as the only acceptable lunch food or the same catch phrase from an Ernie and Bert routine repeated incessantly. But it's not eternal. It's not forever. All it takes to make significant change is having the right person sit down at the keyboard and press the right keys in the right order to create a whole new blog post. All it takes to make significant change is having the right person engage with a child and provide the right opportunities for the right challenges in the right order to create a whole new neural pathway.

Can you feel it? It's happening.

This thing is on.

For want of an apostrophe

Oh, those pesky, pesky pronouns.

I'm often reminded when talking to Bud just how difficult the English language is. This morning I was reminded that, when spoken, the word "your" sounds exactly like the word "you're," and confusion of the two can make the response to a question sound like a personal affront.

Bud woke for the day today at 3:30 a.m. - a phenomenon I haven't seen since late last fall. By the time we stumbled down to breakfast, I was bleary-eyed and foggy-brained, but Bud was full of energy and enthusiasm - and he was hungry. I staggered across the kitchen, took out some bread, popped it into the toaster and stood waiting for it to be done.

"What are you making, Mama?" Bud asked.

"Your toast," I answered.

"I'm not toast!" he shrieked with a giggle as he ran into the other room.

He's got me there. He's not toast.

But he's the best thing since sliced bread.