Wednesday, May 28, 2008

The tribe has spoken

It takes a village to raise a child.

People say it so much that it sounds cliche, but if you have a child, then you know it's true. What you do as a parent is important, but you can never underestimate the power and influence of the other people in your child's life - especially the people who are with him when you are not. You choose some of the people in your child's village; others are assigned to you. You hold your breath, hand over your child to the village elders, and hope for the best.

I've been thinking lately about how much courage it takes for parents - any parents, but particularly those whose children have developmental challenges - to trust the village that is the public school system. I've been thinking, especially, about two different public school villages: the village at the regional elementary school that Bud attends and the village at the Morningside Elementary School in Port St. Lucie, Florida, that Alex Barton attended.

The villages are a study in contrast, though my hunch is that the boys in question may not be. I don't know Alex Barton, so I don't know what his school year was like. My sense, though, is that this year in Kindergarten, Alex, who is in the process of being tested for Aspergers Syndrome, exhibited some combination of aggressive behaviors, verbal and physical outbursts, emotional dysregulation, anger and defiance. So did Bud in his second grade class this year.

As I said, I don't know Alex Barton. My only information about him comes from this mind boggling news story. I'll sum it up for you: It seems that Alex's Kindergarten teacher, at wit's end with Alex, adopted an intervention strategy straight out of the reality television program Survivor. She gathered together her class of five-year-olds and held a tribal council, in which each child was encouraged to tell Alex exactly what they thought of him and his behavior. Then the children were asked to cast their votes on whether or not to keep him in the classroom.

They voted him off the island.

The day after Alex's horrifying experience at school, I joined Bud and his classmates for a field trip to a farm museum. As we prepared for the trip, I wondered how it would go - How would Bud manage the dramatic change in routine? Would my presence at a school event be a comfort or an additional source of stress? And I wondered what I would see in the interactions between Bud and his classmates. Out of necessity, we have kept my presence in Bud's classroom at a minimum this semester - a quick kiss goodbye at the door each morning with no time to linger to watch Bud with his peers as he settles in to his day. So, I wondered how Bud's classmates were reacting to him these days, after a year of witnessing what was probably startling and possibly troubling behavior from him.

I was surprised by what I saw.

Bud and I had a completely different farm museum experience from the rest of his classmates. While they gathered in small groups to learn about milking cows and raising chickens and churning butter, Bud and I set off on our own, seeking out the places that were quiet, peeking at cows from a distance, making sheep noises to each other, and walking, walking, walking, walking towards emotional regulation as we tried to work out the jitters and find a way to settle in.

But though Bud and I did not spend the day with a group, we were never outsiders. When we passed children on the grounds, they greeted Bud. They engaged with him when he responded to their greetings, and they gave him space when he didn't. By noontime, we'd found a rhythm and I convinced Bud to join a group from a distance, for just a few minutes. He stayed near (but not with) the group, and then, with a little encouragement from his teacher, worked up the confidence to reach out and stroke the downy feathers of a remarkably docile chicken.

Later, we joined the larger group again for ice cream. Bud's friend Kelly plopped down on the bench beside him, asking about his ice cream and reporting on her own, and then, when the ice cream was finished, she raced out to the field with some other children to roll down the hill. Without prompting from me, Bud ran out to join them.

Then Bud asked his teacher if she'd play hide and seek with him. She readily agreed and ran to hide while Bud closed his eyes and counted. Several children saw what they were doing and asked if they could join in. Tom was one of them. When it was Tom's turn to be "it," he closed his eyes and counted while Bud pulled me over to "hide" with him behind a slender birch tree which left all but a tiny bit of us in plain sight. Tom finished counting, looked up, and looked directly at us. Then he turned and walked in the other direction and said, puzzled, "I wonder where Bud is!"

Tom's words weren't striking - but his tone was. He wasn't playing down to Bud. There wasn't a hint of condescension in his voice. He didn't sound like an older boy playing with his baby brother. He sounded like an eight-year-old playing with another eight-year-old. Tom got it. And when he "discovered" our hiding spot a few minutes later, the thrill of the find was genuine for all three of us.

Later that day, when the field trip was over and Bud was at home with Nana, I met with the school team about Bud's IEP for next year. I recounted the story of our day, and especially Bud's interactions with his peers and his game of hide and seek with Tom. They smiled and said they were glad that I got to see what they see every day. Then one of them offered, "That's what inclusive education is all about."

And that's it, isn't it? That is what inclusive education is about. It's what all education should be about. It's what should be at the heart of the villages that raise our children. All of our children.

But it wasn't at the heart of Alex Barton's village.

In the midst of a difficult, troubling year, Alex Barton's teacher called his village together and rallied them against him. Bud also had a difficult, troubling year and, interestingly, his teacher also called his village together for a tribal meeting. Unlike Alex, Bud was not there for the meeting. And the agenda for Bud's tribe's meeting was distinctly different: one of the special ed team members came in to talk to Bud's class and help them understand Bud a little better - help them understand the things that are difficult for him, the things that are easy for him, and the things they could do to support him through the challenging times. Like Alex's village, Bud's village came together. But Bud was embraced instead of exiled.

Because that's what inclusive education is about.

Inclusive education recognizes that it takes a village to raise a child. It recognizes that Kelly and Tom and the other children in the class are an important part of the village that is raising Bud. And - more to the point - it recognizes that Bud is an important part of the village that is raising Kelly and Tom and the other children in the class. They need each other, and they know it.

Our children's lives should not be played like a game of Survivor. The real-life stakes are too high to take our cues from a reality game show. Our kids need to know that survival doesn't mean pushing others down and fighting to be the last one standing. They need to know that survival - real survival - means that we all emerge, triumphant, standing together at the end.

Bud's tribe has spoken. I hope Alex's tribe is next.

Tuesday, May 20, 2008

Bentley buzz

You can't tell by looking, but my blog is on fire today.

Like many bloggers, I have a Site Meter tracking tool that tells me how many people are visiting my blog and how they are finding me. On a typical day, people surf in after searching for things like "echolalia" or "autism every day" or, even, "why am I getting split ends all of a sudden."

But today? Today I have had a constant stream of visitors who have googled "Cassidy Bentley" or "Dierks and Cassidy Bentley" or "Dierks Bentley's wife."

I suppose I should have been expecting my traffic to spike today, after I was tipped off in the comments section of my previous post about a happy announcement by the (expanding) Bentley family.

So, if you are one of those Dierks and Cassidy Bentley fans surfing in for the first time, I'd like to extend a warm welcome and invite you to stay and take a look around. But I think you'll find more about the news that has sparked your interest if you click here.

Wednesday, May 14, 2008

Tuesday, May 13, 2008

So much life, so few words

Niksmom has tagged me for a meme and challenged me to write my life story in six words. I'm guessing that this meme has its roots in the Smith Magazine Six Word Memoir project, and it's an interesting exercise because it forces people to hone in on the essence of what is - or has been - most important, instructive, or instrumental in their lives.

Here's mine:

Amid the losses, so much found.

If you'd like to share your own six word memoir, please leave it here in the comments section or post a link to your blog.

Monday, May 12, 2008

Peering into the shadows

If you've been reading my blog lately, then you probably think that there's not much going on around here and that the only things on my mind are the melting snow, my hair stylist, and Dierks Bentley's new cd.

Au contraire.

Sometimes it seems like there is an inverse ratio at work on my blog: the more that's going on, the less I am able to write. There are a lot of contributing factors. Bud's privacy is the most important one, of course. But my readership has also expanded to the point that now I'm not even sure who reads my blog and also knows me in real life - so I tread lightly when I write about real-life people, lest I misrepresent or offend. I edit heavily and I process more and more off-blog.

But know this: while I've been shining the spotlight on my hair, there have been extraordinary things happening in the shadows. Bud has been transforming. He has been seeing a child psychologist for several months, and though he spends most of the time at his sessions trying to deflect questions and change the subject, it's clear that inside his brain and body, he has been doing work - hard work, important work - and coming face to face with the things that trouble him. He is naming his feelings, owning them. He is saying what he needs. He is struggling to understand and accept the things he can't control. He is offering solutions and suggestions. He is self-advocating.

And in the midst of all this hard work, he is happy. More than that. He is delightful. He's engaged and he's engaging.

This weekend, Bud's favorite babysitter graduated from college and we were invited to a party in her honor. Bud said he wanted to go, so we set off for what I imagined would be a brief outing similar in nature to the Solstice Party we attended not long ago.

Not so.

Bud enjoyed the party. He greeted people. He responded to questions. He hugged the guest of honor. Bud and I were among the last to leave, an hour and a half past Bud's regular bedtime. And the next day? We were off to a Mother's Day brunch in a crowded restaurant, where Bud sat and ate and chatted and had a perfectly wonderful time.

Extraordinary.

So, yes, there is a lot going on over here in the shadows. Some of it is hard. Some of it is frustrating. But much of it - most of it - is hopeful, and helpful, and very, very good.

Sunday, May 11, 2008

We have a winner!

Ice Out 2008 has come to a surprisingly early end.

Back in March, when the contest began, my bet was that Gretchen had the edge with a July 4 guess. But the weather in my area is nothing if not unpredictable, and the thaw has come much sooner than I expected.

So, without further ado, the person who guessed the correct date of the first snow-and-ice-free day in my yard and the official winner of Ice Out 2008 is...

KAL of Autism Twins!

KAL, if you send your contact information to me at momnos at gmail dot com, I will get your prize pack out to you this week.

Thanks to all of this year's participants. You made a long winter a lot more fun!




Friday, May 09, 2008

Wednesday, May 07, 2008

Closing in, icing out

We may be getting down to the wire on Ice Out 2008.

Here's what the yard looked like at the beginning of the week:


Here's what it looks like now:


I will keep you posted with further developments.

Monday, May 05, 2008

Executive privilege

Dierks Bentley's greatest hits CD, Every Mile A Memory 2003-2008, hits stores tomorrow, but because Bud is an Executive Producer, he got his copy in the mail today. And there, in the CD booklet, on one of the nine pages of names in alphabetical order in minuscule font, we saw it:

Other Name, Other Name, Other Name, Bud's Name, Other Name, Other Name, Other Name, Other Name, Other Name...

I pointed it out to him. He squinted at it. "That's me?" he asked.

"That's you," I said.

He smiled and pulled the booklet closer to his face. "That's me and Dierks?"

"Yep. That's you and Dierks, Bud."

Just you and Dierks and a few thousand of your closest friends.


Saturday, May 03, 2008

Bud gets political

I had no idea that Bud's been following politics.

I was giving him a bath this evening when we heard a low murmur of sound coming from through the closed bathroom door.

"That's music?" Bud asked.

"I think Nana is watching something on the computer," I said.

"It's Paul McCartney?" Bud asked.

I listened. I couldn't make out any of the words, but I recognized the rise and fall of the speech. "I think it's Barack Obama," I said, wondering how to explain who Barack Obama is.

"Barack Obama is singing?" Bud asked.

"No, Barack Obama is talking," I answered. Bud was quiet for a minute.

"Hillary Clinton is a singer?" Bud asked. I was startled. I had no idea that Bud knew the name "Hillary Clinton," much less that she was connected in some way to Barack Obama.

"No, Hillary Clinton is a talker, too," I answered.

"Hillary Clinton is Nana's friend?" Bud asked.

"Well, sure," I said. "Nana likes Hillary Clinton."

"And Barack Obama is Papa's friend?"

"Yes," I said, adding, lest Bud think that political allegiance must fall along gender lines, "But Nana likes Barack Obama, too."

"Barack Obama loves Nana?" Bud asked.

"Sure, Bud," I said. "Barack Obama loves everybody." (Have I mentioned that I have finally decided which candidate to support?)

"Barack Obama loves Papa?" he asked.

"Sure he does," I answered. Bud was quiet for another minute.

"Barack Obama loves Hillary Clinton?" Bud asked.

I hesitated before I answered. "Barack Obama and Hillary Clinton are friends, Bud," I said. "They both want the same things."

And then I added, silently: "They just don't act like it."

Thursday, May 01, 2008

Another good opportunity

You may recall that not long ago I told you about Teresa Ulman's dissertation research study at Vanderbilt University, which looks at "the positive growth in mothers and fathers of a child with a developmental disability" in hopes that it will be "a step forward in breaking the myth that a family touched by autism and other developmental disabilities is all doom and gloom."

Teresa recently contacted me to let me know that she has expanded the scope of her study to include parents of children and adults (ages 8 - 25) with a diagnosis of PDD-NOS. I'll be following this link to share my thoughts with Teresa soon. I hope that many of you will join me there!