Wednesday, February 24, 2010

Wish list

Three days ago, KathieC left a comment that I can't get out of my mind.

"I wish," she wrote. "How much of my son's life have I spent saying those words "I wish"... My little man is Bud's age and I often feel, when reading your blog, that I am reading about him. That is, until I get to the posts about his supportive educational environment. Reading this particular post, fresh on the heels of chaperoning my little man's postponed Valentine's dance was too much for me. I spent the hour and a half watching him dance and twirl by himself. Watching the other kids point at him and laugh behind their hands. Watching my sweet, loving boy surrounded by a margin of empty space that no NT child would enter. You and Bud are so incredibly fortunate. I wish ..."

My heart breaks for KathieC and her son. I want to give advice. I want to be able to say, "okay, here's how we did it...," but, truly, all I can come up with is this:

First find a teacher who is flexible, creative, and insightful. It would help if she has had experiences in her life that make her understand your son from the inside out.

Then add a paraprofessional who is working on a degree in education and who approaches her work as both teacher and student, as eager to learn from Bud as she is to teach him.

Throw in a special ed team who collaborate well and are quick to think outside the box. Let them start working with your child in Kindergarten and continue to work with him as he progresses through each grade. Choose people whose smiles and enthusiasm would suggest that they are neither overworked nor underpaid, even if you suspect that they may be both.

Then add a room full of children who have grown up in a positive, affirming school environment. Put them in a school in which, when you walk through the halls and past classrooms, you hear the warm responsiveness of teachers who never seem to raise their voices in anger, even when they don't know you can hear them.

I know. I might as well be saying "click your heels three times and sprinkle a little fairy dust." I might as well be saying "just keep wishing." KathieC is right: Bud and I are so incredibly fortunate.

It may have been luck that landed us in this school with these people, but still - it's NOT luck that makes these people do what they do. Their actions, their attitudes, and their approaches are intentional. They do what they do for a reason, and it works. Or it doesn't work - and then they recognize it, rethink it, and try something else.

I would like to believe that many teachers whose classrooms are not working for our children are willing to try a different approach, but don't know where to start. Maybe they just need some great ideas - some things to get them started - a few sure-fire successes that will set their classroom communities in motion and build their confidence to keep on trying.

So, what do we have to offer them? If you're a parent, what has worked for your child? If you're a teacher, what has worked in your classroom? If you're just a person who has great ideas, what great ideas do you have? What do you wish more people were doing?

Let's try to be concrete here. Let's give people some actual, tangible ideas of things they can pick up and start implementing next week.

I'll go first:

A couple of months ago, Ms. Walker and Mrs. Nee started a program called "Bud's Buddies." Each week, one child in the class is Bud's "buddy." That child goes to the school door with Mrs. Nee to greet Bud in the morning (since Bud arrives a little late to avoid the big crowds) and also walks out with them at the end of the day (since Bud leaves a little early to avoid the big crowds). The buddy partners with Bud here and there throughout the day and throughout the week - on math, on reading, on whatever activity presents the best opportunity, always under the guidance of Mrs. Nee or Ms. Walker. Through their one-on-one interactions, Bud and his buddies get to know each other better and come to understand each other more. "Bud's Buddies" is an optional program. So far, no child has opted out.

Okay, folks, it's your turn. You are the wisest people I know. Let's come up with a few great ideas, so that if teachers Google "best practices in inclusive classrooms" and land here, or if parents stumble onto this post wishing their child's class could be different, they'll walk away with a plan for trying something new or with a suggestion to offer that might help make their wishes come true.

Saturday, February 20, 2010

Opportunity, possibility, and community

I've been given an incredible opportunity. It's been two weeks since the opportunity was presented to me, and I'm still reeling from the possibilities it holds.

I've already told you that Bud's teacher, Ms. Walker, and his paraprofessional, Mrs. Nee, are incredible. But I haven't come close to telling you how incredible they really are - because, really, until two weeks ago, I didn't know. We'd been talking about trying to find a time to meet for a regular, non-IEP, non-crisis-management parent-teacher conference, and two weeks ago Ms. Walker and Mrs. Nee found themselves with an open afternoon. They e-mailed me to see if I was free, and I was, so we planned on getting together for a quick meeting.

Two hours (and many laughs and a few tears) later, I left the meeting with my head spinning. These women are REMARKABLE. Their teamwork is remarkable. Their classroom is remarkable. Their stories are remarkable. Their understanding of and love for my son is remarkable. And the progress that Bud has made with them is truly remarkable. I spent large portions of our meeting saying things like "this is incredible" and "you need to present this at a national conference" and "you guys should write a BOOK!" They are that good.

And in the midst of their reports on Bud's significant progress and on their insights, their strategies, and their incredible year of highs and lows, they presented me with an opportunity. It started as a story:

Ms. Walker had been reading a book to the class while Mrs. Nee and Bud were out of the classroom. The book, Joey Pigza Swallowed the Key, is about a boy with ADHD and is written in the first person, from Joey's point of view. They had gotten to a section of the book in which Joey talks about taking medication. Ms. Walker stopped reading to have a brief discussion about what it means to take medication - explaining that some medications fix things and that other medications just make symptoms more manageable.

A child raised her hand. "But," she asked, "there isn't a medication that can make Bud different, is there?"

Her brave and heartfelt question opened a floodgate from her peers: Bud has autism, right? But what is autism? Will Bud ever be like the rest of us?

Ms. Walker was caught off guard; she hadn't anticipated this turn in the conversation. She didn't feel prepared to answer their questions, but she knew that their questions were important ones and that honoring them could lead to extraordinary understanding. They were questions whose answers could make a difference in everyone's life. So she suggested a solution to the children: maybe Bud's mom would be willing to come in and answer some of your questions. The children were enthusiastic about the idea.

At that point in the story, Ms. Walker handed me a stack of index cards filled with ten-year-old scrawl. "I told the kids to write down any questions they had, and I said I would ask you if you'd be willing to come in. I told them they could ask anything at all, and you would decide if anything was too private to share."

I started flipping through the cards. They blew me away.

What is autisim
Why does he move in circles

Mrs. noos....
Do you know all the Diffrent ways Bud learns?
How come nose bother Bud so much
Why Dose Bud repet so many lines from TV shows or movies?
Why Dose Bud Have to move so much?

- What disability does Bud have?
- Please explain.
- Was he born this way?
- How did it happen?
- What goes on in Bud's head?
- Why does he repeat things?
- Why does he run in circles?
- How can I help?
- How come Bud gets attatched to people and then always wants to be with that person?
- Does Bud know he's different?
- Why does Bud have Awesome hearing?

1. When Bud grows up will he be like us or will he be like he is now?
2. Why can't he say stuff in full sentenses like when he keeps saying the same word in one sentens?
3. Everybody thinks he's much different then us. Is he reely much different?
4. Why is he like that? Is that the way he was born?
5. does he know that hes different from us.

Why does Bud have such sensitive hearing?

How do you deal with Autisum?
How does Bud have such great humor sometimes?

Why does Bud repeat things that are on TV? Why doesn't Bud not like to be with oter kids? And how can I be a person Bud would like to hang out with? Please anwser. (PS. Does Bud know that hes diferent?)

1. What is otizim?
2. Does it help you?
3. Was Bud born with Otizim?
4. Is Otizim suff you need to take meds?

Why does Bud repeat things?
Why does the fire alarm noise scare him?
What is atisum?
How can I help Bud not worry about things.
Why is Bud scard of loud noises.
Why does Bud move in circles?
Why does Bud always miss you.
Does Bud know that he is different from some other people.

- How different is Bud from us?
- What are Bud's conditions?
- What was Bud born with?
- How dose Bud's brain work?

1. how does Bud think?
2. What is Why does he need Movement breaks?
3 Wyy Why does loud noises bother him?
4 Why does he repeat things?
5 How can I help?
6 Does he know he's diffrent?

My Questin are
1. What is otisem
2. What dose Bud thinck like
3. Dose Bud have otisem
4. Why dose Bud hate loud noses
thease are the questins I want to know if these questins are parsin that is fine I don't mind
5 How can help Bud
6 dose Bud Hate thunder storms
7 dose Bud know He's diffrent

Dear Mrs. NOS.
Bud is funny, exciting, and a REALLY good friend
1) how does he remember things from really long times ago?
2) Why does he walk in circles and murmer to himself?
3) What do pills help him do?
4) What can I do to be a better friend to Bud?
5) is it always quiet in your house just for Bud?
6) Why does he hate it so much when it's loud?

I didn't take a moment to think about it. "Yes," I said. "I would love to come in and talk with the class." We decided that we'd find a time when Bud would not be there, and that we'd offer it as an option to the kids - they could opt to eat their lunches in the classroom with me, or skip the presentation and have a regular lunch period in the cafeteria. I told Ms. Walker and Mrs. Nee that even if just one child stayed behind, I would consider it time well spent. Ms. Walker assured me that more than one child would opt to stay. "These index cards were optional," she said. "They wanted to fill them out."

I've spent the last two weeks mulling over the children's questions, developing analogies, and thinking of examples that they'll be able to relate to their own lives. I keep thinking about this comment, which arrived a couple of months ago, and about the way that a well-placed conversation might have made a difference in the life of the commenter and the children he encountered. I keep thinking, especially, about particular questions that Bud's classmates asked:

How can I help Bud not worry about things?

How can I be a person Bud would like to hang out with?

What can I do to be a better friend to Bud?

How can I help Bud?

How can I help?

How can I help?

I love these children. I love these teachers. I love that I have been given this extraordinary opportunity.

Tuesday, February 09, 2010

Five and time

I wrote my first blog post five years ago today.

Five years. It's wild. It was a lifetime ago. It was yesterday.

Gwuinifer was the first person to post a comment on the blog and I was astounded that somebody was reading what I wrote. I think that for a long time she was one of the only people who read what I wrote. In those days, nobody in my real life knew about my blog and most of my posts yielded few, if any, comments.

I'd started blogging as a means of sorting out my thoughts, but communicating with Gwuinifer opened my eyes to the possibility that blogging could be more - that it could connect me to other people who were travelling similar paths. But even with that realization, I never really imagined how important those connections would become to me.

Gwuinifer and I haven't stayed in touch, though I still pop over to her blog now and then to see if she's posted any new pictures of her beautiful children. And there have been other bloggers (and commenters and non-commenting, e-mailing readers) over the years with whom I've connected, then drifted. But there have been even more bloggers and commenters and e-mailing readers who have become an integral part of my life, and upon whose wisdom I have come to depend.

At some point in the past five years, I also started sharing my blog with people I knew - tentatively at first, because I was afraid that mentioning my blog to people would make me seem self-indulgent. But people were gracious and encouraging. They began passing the link on to other people. For a long time, I thought I was living safely under a shroud of pseudonymity, until one day, a colleague stopped me at the salad bar at work and said "I love your blog."

At first, the thought of being "known" was jarring - even panic-inducing. But then I came to realize that the blog helped people to see Bud differently. Reading about our challenges helped people in our lives know how to reach out and offer support. I began to see how, in very tangible ways, the blog was making a difference in our lives. And so, over the past five years, I've loosened my death-grip on anonymity and that freedom has allowed for even more connection and even greater depth.

My life outside the blog has changed in the past five years as well. It's changed in some big, huge, tangible ways - like, I was married five years ago, and now I'm not. And it's changed in some smaller, but significant ways as well. Five years ago, I'd never heard of Dierks Bentley, and if you'd asked me, I probably would have said I wasn't really into country music. Five years ago, I'd never taught a writing course, and if you'd asked me, I probably would have said I wasn't really a writer. Five years ago, I wrote that I saw Bud's PDD-NOS diagnosis as a "sweatshirt-that-never-really-fit-right-but-is-the-right-weight-for-this-weather-so-I'll-wear-it-cause-it's-better-than-nothing." Now, I see it as his skin. Five years ago, I was preoccupied with concern about causation and cure. Now, I am motivated by ideas about education and support.

Of course, the biggest changes I've seen over the past five years have been in Bud himself. When I started writing, he was five years old and in preschool. Today, he participated in his fourth grade music class recital, singing "Trying To Stop Your Leaving" to his class through the microphone of his karaoke machine. Five years ago, his spontaneous language was limited and making meaning of his echolalia-based speech felt like sheer Holmesian deduction. Now, though Bud still loves a mitigated script, we are able to have full reciprocal conversation. Five years ago, Bud's whole world revolved around the Teletubbies. Now, though he still loves "the guys," he says he prefers his real-life friend.

We've been through a lot in five years: a lot of challenge, a lot of upheaval, a lot of triumph. And it's hard to look back on the past five years of blogging without starting to wonder what the next five years will hold. But I remember someone commenting to me during a particularly difficult time in my life that it's a good thing we never know what life has in store for us, because if we knew what was coming, we'd be sure we couldn't handle it. Since then, I've tried not to project myself too far into the future, for fear of creating unreasonable expectations or self-imposed limitations by presupposing what the goals should be or by failing to imagine possibilities.

But still. In five years, Bud will be fifteen and I will be the mother of a high schooler. And what about you? Will we all still be here, floating around together in the blogosphere? Or will we have become like Gwuinifer and me - people with fond memories who used to be in touch?

One way or another, let's make a plan. Let's plan to meet back here five years from now. I'll write down the password and tuck it away somewhere, so that if I've stopped blogging by then, I'll still know how to log in. We can all gather here in my virtual living room, pour some coffee, reminisce and catch up. What do you say? Are you in?

We may not know what else the next five years will bring, but one thing's for sure: February 9, 2015? That's going to be a heck of a time.

Tuesday, February 02, 2010

Full disclosure

Remember a couple of years ago when I told you about the phenomenon in my life in which total strangers start disclosing personal details about their lives to me? Remember how I said I thought I just had "one of those faces?"

Apparently, it's not my face.

This evening, I called Capital One to close a credit card account that has been lingering for too long with a zero balance, adding nothing to my life but another opportunity for identity theft. The woman who answered the phone was warm and professional, asked me all the right questions, and gave me the rationale for why I might want to consider hanging on to that card and earning rewards, rewards, rewards.

Somewhere between the allure of earning rewards and the "have a nice day," I also learned that she lived in central Texas, where winters are warm and summers are hot, but where it is likely to be in the 30's this week. I learned that her fiance had returned from Iraq to a base in Louisiana, but that his return to Texas had been threatened by the freak snow storm that blanketed the southern states last week. The idea that he could be so close and still not be able to get home was, to say the least, difficult for her to manage.

The ending was happy, though. They've been reunited. And my account has been closed.

And, apparently - even if I never show my face - whatever it is? I've still got it.

Monday, February 01, 2010

Forest for the trees

You know how it is sometimes. It's like how you don't notice that your child is growing in tiny increments week by week until the day you look at him and realize that all of his pants are two inches too short. Sometimes you just focus on the day-to-day, taking each presenting issue as it comes, reacting and responding to each incident as a stand-alone, not thinking about what it all means when taken together, until the incidents build up enough to turn into a two-by-four that bonks you over the head and you finally get it.

Or maybe that's not how it is for you. That's how it is for me.

I've noticed a whole bunch of things from Bud over the past weeks - or maybe months - that I only viewed in isolation.

Like, I mean, I noticed how often I'd find him in front of the computer in his underwear, drawn to PBS Kids even though he was in the middle of getting dressed for the day.

There have been lots of times when he's wandered downstairs, leaving his grandfather waiting for him in the playroom. Then, when I've asked,"Hey, what'd you do with Papa?," he'd say "Whoops!" and run back upstairs with a grin.

I've found myself commenting to my mom that he's suddenly started running laps around the house in mid-meal, mid-television show, mid-conversation, mid-everything, the way he did when he was a toddler.

I can't count the number of times he's run upstairs to get something... then never returned with the thing in hand.

I have grown accustomed to the monologue I deliver every time I give him his medication, which must be delivered in three spoons full of jello: "Here you go. Wait, wait, wait. - don't go away - here's another. Good job. Wait, stay here, stay here, stay here. Bud, come back here! Okay, here you go."

It began to strike me this weekend when he sat down to make a list for school of all the things he'd done since Friday. He started writing "Sang song to Papa," got as far as the "S-a-n," then was off to retrieve the CD that had the song that he sang, while he sang me the song that he sang and showed me the dance that accompanied the song that he sang and told me how much Papa loved hearing the song that he sang, all while I tried to redirect him back to the page with a feeble "and what letter comes next?"

But I didn't really get it - the puzzle pieces didn't all fall together - the trees didn't become a thick, green forest - until this morning, when he sang and spun and talked and talked and talked his way through the morning, then dashed past Mrs. Nee as she met him at the school door and immediately started running laps around the cafeteria as I gave her a quick recap of our morning. He didn't stop running to say goodbye, and instead just blew me a kiss from across the room as he ran and ran and ran.

That is when the two-by-four bonked me:

I think his ADHD meds might be two inches too short.