Saturday, December 20, 2008

All I want for Christmas

Bud had an appointment this week with the medical team he sees for medication management. We started seeing them about a year ago, in the midst of a very difficult time for Bud, and those early visits were incredibly stressful - wild displays of dysregulation filled with heart-pounding public tantrums and meltdowns in the waiting room, the hallway, the office.

Flash forward one year and the scene is very different. This time, Bud stood patiently next to me as I waited to check in at the counter. The two receptionists greeted us and Bud responded with a cheerful "Happy holidays!" They asked how he was and he said he was doing great. They asked what Santa would bring him this year, and he said he'd just like to be surprised. Then he took out his Dragon Tales toys and sat down to wait for me to finish up.

"Wow!" one receptionist said to me, softly enough that Bud couldn't hear. "He never talks to us!"

"I know," I said, beaming. "He's really doing great."

"He's like a different child from the one who started coming here," she answered.

Bud stayed conversational throughout the visit, answering all of the doctor's questions: school was good, he said. Ms. Brett was his best friend there. Kelly was his best kid friend. Sometimes he still got worried going to school, but just a little worried. He was looking forward to Christmas.

The doctor asked about our Christmas tree, and I told her that Bud hung all of the ornaments on it.

"Do you have a favorite ornament?" she asked him.

"Yes!" Bud asked enthusiastically.

"Which one is your favorite?" she asked.

"The heart!" he chirped, his eyes gleaming. I mentally scanned our tree, trying to remember the heart-shaped ornament he was talking about. Our tree has a wild assortment of ornaments - from cut-glass kangaroos to macaroni angels - but I couldn't think of a single heart.

"Which one is the heart?" I asked him, puzzled.

He turned to me and smiled, "The heart for Mom! With my picture on it!"

And then it clicked.

"Bud, did you make me a heart ornament at school?"

"YES!" he squealed.

"Oh, wow!" I gushed. "Is it a surprise?"

"YES!" he shrieked. "It's a SURPRISE!"

And yesterday, in Bud's backpack, I found a present wrapped in tissue paper. Bud told me that I shouldn't wait for Christmas, but should open it on the spot.

It was heart-shaped ornament, hand-colored, with a picture of Bud in the middle. We rearranged ornaments to hang it right in the center of the tree, and the delight of gift-giving set Bud off in a flurry of preparations for a family Christmas of his own making.

Before bed last night, Bud crept around the house gathering up toys and trinkets. He filled up stockings for Nana, Papa, and me - as well as for himself. This morning, I was awoken by his face in mine: "Mama, I need scissors."

"For what, Bud?" I asked, groggily.

"For the wrapping paper. In the playroom."

"What are you wrapping, hon?"

"A present for Nana."

When he had everything ready, he woke us all up and one by one we each opened our Bud-filled stockings and marvelled at the treasures inside. Bud got a teddy bear. I got a Fisher Price camera. Nana got a race car. Papa got a set of chattering teeth. By the time we finished opening our presents, Bud was bursting with excitement and pride for orchestrating such a magical morning.

I think I've already gotten everything I want for Christmas.

Wednesday, December 17, 2008

Extra catch up

After a month of living off the grid, I'm not even sure how to re-emerge into the blogosphere. I've always thought that once a blogger starts beginning posts with phrases like "Wow, I can't believe how long it's been since I've written," it's a sure sign that the blog has jumped the shark.

I gotta admit, I can see the fins circling.

It's funny how it happens, though. It starts with "Oh, this will make a good post. I'll just set that idea aside until I have time to flesh it out," then it morphs into "Maybe I can blend this story with the other one and just have a longer post," which soon becomes, "Okay, I'll just scrap those two and start fresh with this one," and suddenly a post-free month passes and I begin to think that maybe I should just pack it all in and go low-tech.

But here I am in my Fonzie finest, life jacket in place and fingers flying on the keyboard, in a (perhaps futile) attempt to salvage the ratings. And yet, I'm not quite sure where to begin, and if I really try to fill in all the gaps since the last time I wrote, this post will inevitably end up in the dead letter of office of half-written drafts.

So I will begin here:

I've been thinking a lot about how Bud's language has progressed, and about how sophisticated his use of mitigated echolalia has become (as, I might add, Barry Prizant predicted years ago). Bud has an enormous store of phrases and sentences filed in his brain and he's able to retrieve them in an instant, mentally flipping through to find the phrase or quote or snippet of language that most closely fits the real-life situation in which he finds himself. He is so skilled with it, in fact, that unless you know he's using scripts, you wouldn't know he's using scripts. Most people have brief conversations with him in passing and simply think his language is a little quirky.

A favorite recent example:

Bud was sick back in October - nothing serious, but it required a trip to the doctor. At the time, he was geared up to be a doctor for Halloween, so in preparation for his visit he donned his white lab coat, strapped on his head mirror, wrapped his stethoscope around his neck, and pulled a face mask over his mouth. He walked through the medical center with an air of authority and, to a person, the staff and nurses he met treated him with solemn respect: "Hello, Doctor. We're glad you've come to help us today." Bud nodded at them, told them they were welcome, and, through the use of doctor-visit scripts from Elmo and Blues Clues, generally reassured them that he was happy to be on the job.

We got into the exam room and Bud climbed up on the table as Nurse Dan walked into the room. "Hello again, Bud," he greeted us. "I see you you've become a doctor since the last time I saw you!"

"Well," Bud replied matter-of-factly, "I've gotta make a living somehow, you know."

"I hear you, Bud," Nurse Dan commiserated. "Don't we all."

"Yeah," Bud agreed. "Don't we all."

And there you have it. A quick little vignette from my life with Bud to get me started on what I hope will be a roll of more frequent posting.

I've gotta start blogging somewhere, you know.

Friday, November 14, 2008

Good sports

This week, Bud brought home the school's Winter Sports preference sheet, with instructions that the completed form should be returned by the end of the week. I imagine that for most families, this quick turn-around was fairly easy; for us, it was a bit more challenging.

"Winter Sports" is a program at Bud's school that runs on five consecutive Fridays starting in early January. Students choose from among ten different activities and participate in the same activity each week for the entire program. In November, the school sends home a description of the activities being offered and families send back the students' top three choices. The staff uses the preference sheet to balance enrollment numbers and assign activities.

In first and second grade, Bud's Winter Sport activity was snowshoeing. I chose the activity for him based on several factors: it was close to the school and wouldn't require a long bus ride; it was something I thought he could do independently; and, it would likely be low-key and not an activity that would draw a lot of dysregulating screaming and jumping from other children. It played out exactly that way and Bud enjoyed the activity.

So, when the form came home this year, I thought about listing snowshoeing again and sending it back without discussion. As I thought about it, though, I realized that I was not being fair to Bud. The other children had options; he should have options too. And perhaps he'd be interested in trying something new. Last year, he was not doing well enough to take risks, but this year he just might be.

I approached Bud with the form in hand and showed him the description of his options. He was enthusiastic, and indicated an interest in a lot of things: bowling! wall climbing! gymnastics! SWIMMING! I asked about snowshoeing, but he said he wasn't interested.

I read the descriptions of the activities. Bowling involved a long bus ride. Wall climbing was for fourth and fifth grade only. Gymnastics, I knew, would not be what Bud expected (he would expect only trampolines; they would try to get him on parallel bars and balance beams). But swimming... Swimming is a favorite activity of Bud's. He's had lessons and he knows the basics, but he is not yet a strong swimmer. Put him in a life vest, though, and he is king of the swimming pool.

I read the activity description and saw that only students who could swim independently were eligible for it. I wondered though, if a life vest would be considered a reasonable accommodation, given the circumstances. I dashed off an e-mail to Bud's special ed coordinator before I said anything else to Bud.

As I waited for a response from her, I started playing the Winter Sports swim scenario through in my head. Bud is familiar with the pool, but not with the pool full of forty screaming children. He is confident in the water - but would he be too confident? Was he really ready to be in the water without an adult next to him, in an easily-removed life vest? And what about the whole locker-room issue? Would Bud be able to manage the clothing-off-suit-on process by himself? Would he be in the locker room surrounded by towel-snapping, wedgie-giving boys?

The very idea sent my blood pressure soaring.

So, I sat down with Bud once more to talk about Winter Sports options, and as we talked I realized quickly that he hadn't really understood the concept of "listing activities, in order of preference." Instead, he told me enthusiastically, "First I do bowling, then I do swimming, then I do gymnastics!"

I tried to explain "rank order," but fell flat. So, I told Bud, "Let's just choose one."

"Swimming," he said.



"Bowling instead?"

"Yes. Swimming."

"Swimming or bowling?"


"We need to choose one, Bud."



"Okay. Bowling."

"You like swimming AND bowling, don't you, Bud?"


"Let's put bowling on the paper."


So bowling it is. I think it's a good choice: a long but manageable bus ride, an activity he enjoys, and an opportunity for "parallel play" with peers.

And best of all? No wedgies.

Sunday, November 09, 2008

Third grade's the charm

I had a conference with Bud's teacher, Mrs. Hanlan, and the special ed team this week. My sense going into the meeting was that the year is going well, that his teacher and he are a good "fit," and that the dysregulation that was a hallmark of his second grade year has faded substantially in third grade - and I was delighted to hear that the team felt the same way.

They told me about the progress Bud has made in the past few months - like the real conversation he had with a neurotypical peer about a class project on scientists and the stories he's added to his writing journal that are actual accounts of his life and not scripts lifted from Elmo's World (though, I must admit, Bud seems to prefer fiction over nonfiction, as he tends toward revisionist history. One account of a real hike we did together, in which I lost my sunglasses, ended with Bud saving the day and finding the glasses behind a rock. Alas, in real life, it took a trip to the pharmacy to get some new sunglasses on my face.) I also heard about Bud's challenges this year, and while they remain real and significant, there were no surprises and nothing that took my breath away. This, I have learned, is a sign that the school year is starting well.

One story, in particular, captured the essence of his third-grade classroom for me. Mrs. Hanlan told me that last week the children were working in their writing journals on pieces about something they do well. Bud was in the back of the classroom, behind a bookshelf and out of view of the class, writing his essay on the classroom computer with his aide, Ms. Brett. He was good, he told Ms. Brett, at singing. And then, to prove his point, he launched into the ABC song.

Mrs. Hanlan watched as the other children worked at their desks. At first, Bud sang low and the children paid little attention. As the song progressed, though, so did Bud's confidence, and soon he was singing at full voice. The children stopped what they were doing and started listening, looking up at the teacher to gauge her reaction. She knew that Bud couldn't see his classmates' response, so as soon as he finished, she said quietly to the class, "Now you sing back to him."

The children launched into the ABCs in response, and as Bud peered around the corner to watch them, his smile grew and his eyes gleamed. As soon as they finished, Bud, uncertain about how to handle the sudden attention, flushed a bright pink, turned to his aide and said, "Movement break?"

Ms. Brett stood with him and they made their way into the hallway, then Bud turned back, popped his head into the doorway, and said, "Thank you, everybody. Bye, now!"

A girl in the class, not sure what to make of the exchange, giggled the kind of nervous giggle that conveys discomfort - the kind of giggle that says, "That was not what I'm used to, and so I'm not sure if that was okay."

Mrs. Hanlan took her cue and addressed the class. "Bud communicates in a different way," she told them, "And we just had really good communication with Bud."

As she finished recounting the story, she said to me, "I hope that was okay to say. It felt like an important moment."

"It was more than okay," I answered, surprised that I was not too choked up to speak.

As we were wrapping up our conference, I raised the issue that had been on my mind, but that I'd been afraid to address: homework. I launched in, tripping over my words: "Homework is a battle for us. Bud fights it with everything he has. "Home is NOT school!" he tells me. It's not possible to do it during the week - he's exhausted after a full day at school, and by the time I get home from work we have just about an hour before it's time to get him ready for bed. So that leaves the weekends - which is our time - our only time - our Mom and Bud Days - and he resents the imposition of homework on that time - and I dread the battle that I know it will bring - and - and - and -"

Mrs. Hanlan understood completely. Even in the classroom, she said, she saw that she had much greater success when she engaged Bud in an activity without announcing that the activity was about to begin. Proclamations like "In a few minutes, we will write a story" prompted argument from Bud; sidling up to him with a laptop prompted cooperation. So we've decided to take an integrated approach to homework. We're focusing on reading - an activity he has always done at home, but has lately been fighting. And they'll keep me updated with the concepts that I can reinforce at home - for instance, they're currently working with him on the value of pennies, nickels and dimes. So, we can count change at home. Or play restaurant. Or buy candy at the store. But I won't have to clear the Sunday papers off the kitchen table and lay out a stack of printed worksheets and prepare for battle.

Bud's teacher and team also have great ideas about the direction to take with him in the months to come. Music, they said, is key. They will find more opportunities to build music into the classroom - perhaps call-and-response songs, or singing in a round - or dancing, which might appeal to Bud's musical affinity and also address his need for movement and strong sensory input in a way that includes the other children in the class. And they'll focus on peer interaction - one-on-one opportunities to play simple games, to have "parallel" play on the playground when it's not swarming with children, to have back-and-forth engagement and conversation. Bud's ready, they say, and the other children in the class will be eager to participate.

We've still got a lot to work on, of course, and Bud still has challenges, both academic and attitudinal. But there are glimmers there as well. I've mentioned before that Bud starts his school day the same way almost every day - by walking into the school lobby and greeting Ms. Brett, whom he adores, by bellowing "OH NO! IT'S YOU AGAIN!", before turning to me and pleading with me not to leave.

But Friday - coincidentally, the day after my meeting with Bud's team - Bud broke with his routine. We walked through the school doors and Bud approached Ms. Brett and said "Howdy!" I didn't want to give him any time to reconsider, so I gave him a very quick kiss and turned to rush out the door, as I heard his chipper voice behind me call out "Bye, Mom!"

I still don't know what prompted Bud's sudden change of heart and dramatic change in pattern, and I'm certainly not sure that it will last. But it's a start - a good start - and I'll take it. This year - this third grade year - I will gladly take it all.

Wednesday, November 05, 2008

November 4, 2008

"This is our moment. This is our time -- to put our people back to work and open doors of opportunity for our kids; to restore prosperity and promote the cause of peace; to reclaim the American Dream and reaffirm that fundamental truth -- that out of many, we are one; that while we breathe, we hope, and where we are met with cynicism, and doubt, and those who tell us that we can't, we will respond with that timeless creed that sums up the spirit of a people: Yes We Can."

I can't stop crying.

Tuesday, November 04, 2008

Beautiful day

Bud's school is just down the street from my office, but this morning after I dropped him off, I didn't head to work. Instead, I turned around and drove back to my neighborhood polling place. I could have voted after work, but I wasn't taking any chances. If I am hit by a bus this afternoon, my vote will still be counted.

As I drove through the quiet streets of my small town, with the sun glaring through my windows on this unseasonably warm day, U2's "Beautiful Day" started playing on my iPod. It's a song that will forever remind me of the Obama campaign and of the feeling of hope it has inspired in me.

I turned up the volume and as my car filled with music, my eyes filled with tears. I knew the election was important to me - elections are always important to me - but I was startled by the force of my emotion. Admittedly, some of that emotion may be fueled by exhaustion - emotional and physical - as several busy weeks at work and home have meshed with an intense obsession with the poll data, political analysis, and pundit prose that all culminates today. But as I wiped the tears from my face, I realized that it was more than just exhaustion. I realized how tense I have been for weeks - for months - for years - about the state of our country, the state of the world, and what it all means for Bud's future. There is so much at stake in this election - politically, economically, environmentally, educationally, medically. There is so much to lose. There is so much to gain.

I have been hopeful throughout this election season, but I have also been cautious. I have hoped before and have had those hopes crushed. But today, for the first time in a long time, I started to feel like it might really happen. I started believing - not just saying, but really believing - that change might be coming. Right here, right now, today, in polling stations across the country, we just might be changing everything.

Vote wisely.

Vote well.

Vote Obama.

Sunday, November 02, 2008

Bud the plumber

It seems that Bud is supporting John McCain.

The other day I asked him who he thought the next President should be and he answered "Hillary Clinton." I explained that Hillary is no longer running and that the next President would be either Barack Obama or John McCain. Bud said he wanted John McCain.

"Really?" I asked him. "I'm voting for Barack Obama. He is a very good man."

"John McCain is not a nice man?" Bud asked.

"Oh, no, Bud," I said. "John McCain is a nice man. They're both nice men. But I think Barack Obama is a nice man and would be a good President. John McCain is a nice man, but I don't think he would be as good a President. They have different ideas about being President, and I like Barack Obama's ideas better."

"I like John McCain," Bud answered.

Bud is standing by his candidate, even though he has gotten confirmation that his father and grandparents are also supporting Barack Obama and even though he lives in a house that sports an Obama/Biden yard sign (we did get a new one, though I'm beginning to have suspicions about who took the old one...)

Luckily, Bud is only nine, so I've got some time before his votes start counting. But make sure to check in here before the Presidential election of 2020. By then, I imagine that one of two things will be happening: either he will have started embracing his Democratic roots, or he and I will each be travelling to the polls to cancel the other out.

Tuesday, October 14, 2008

What's not to like?

As Bud gets older, I find myself worrying because he is still drawn to toys and videos geared toward the preschool set. I worry that the gap between Bud and his peers is growing, and that before long his interests will inspire teasing - or bullying - from other children. I watch carefully when I bring Bud to school - watch for knowing glances between other children, for rolling eyes, for snickers and elbows in ribs. And so far, I see none of it. Instead, I see children - from his grade and from other grades - go out of their way to say hello to him and give him polite space when he's having a difficult transition to his school day. Everything I see tells me I have no reason to worry.

And yet, I do.

I was struck, especially, last month when Bud turned nine. His very favorite presents - the ones he cherished above all others - were two Elmo's World DVDs and an Abby Cadabby doll. I watched him from across the room as he sweetly cuddled and chatted with his stuffed Muppet and I thought about what the other nine-year-old boys at school got for their birthdays. My hunch is that few of them would be happy with a stuffed Abby Cadabby. As I watched him, I had two strong, simultaneous, opposing reactions - the first, gratitude that such simple things can make Bud so happy, that he is not tearing through childhood at breakneck speed, that sweetness and innocence radiate from him; and the second, fear that someday my son would be a twenty-year-old man, still sweetly innocent, and still cuddling his Abby Cadabby doll and watching Elmo's World. I've been working on holding tight to the gratitude and letting go of the fear, but it's hard. It's hard.

The other day, Bud popped in a Teletubbies DVD and giggled as he watched it, as delighted as he was the first time he saw it, many years ago. The fear crept back in, and I wondered if Bud made the same sorts of comparisons with his peers that I do - Did he know they liked different things? Was he interested at all in trying them out?

"Hey, Bud," I asked, keeping my tone as matter-of-fact as I could, "you really like the Tubbies, don't you?"

"Yes," he answered.

"Do the kids at school like the Tubbies?" I asked.

"No," he answered, definitively.

"Oh!" I said, feigning surprise. "What do the kids at school like?"

"Me," he answered.

Also definitively.

And he's right; they do. So maybe that means there's only one thing for me to do. Maybe, for now, I just need to kill ouch.

Sunday, October 05, 2008

It's a girl!

Warm congratulations to Dierks and Cassidy Bentley on the birth of their daughter, Evalyn Day Bentley!

According to People magazine, baby Evie was born just before midnight last night, October 4. It's a date that's dear to my heart, as October 4 was Bud's due date - though, determined to do things his own way from the start, he was born two weeks early.

And thanks to reader M, who keeps me up-to-date on breaking Bentley news as it happens and who dropped me a line this morning to let me know.

Thursday, October 02, 2008

Talk about soft on crime

If you read the political posts on my blog, then you already know that I'm a capital-L Liberal - a Ted Kennedy Democrat who falls somewhere to the left of the left. It probably won't surprise you that shortly after Barack Obama became the presumptive nominee of the Democratic party, I put an Obama yard sign out in front of my house.

About a week ago, the Obama sign disappeared from my yard. My mother and I commiserated over it, dismayed that this could happen in our rural little neighborhood. "Who would do such a thing?" I wondered out loud.

My mother was quiet for a minute, then said thoughtfully, "I just hope it was taken by Obama supporters who didn't want to spend money on their own sign."

Yes, I'm sure that's it. It was a needy Democrat. Or maybe it was someone who couldn't afford heating oil and needed to burn it in his wood stove.

At least now I know where I get it.

Wednesday, October 01, 2008

Third grade or bussed

Bud's been in third grade for over a month now and he seems to be off to a terrific start despite a few - er - speed bumps we encountered early on.

Let me back up. It all started sometime in early August, when I got a letter from the school department notifying me that because of a necessary shift in bus routes, Bud's school day would be starting a half hour later than it had in the past. Like most people, I had a knee-jerk reaction to the unanticipated announcement: "That won't work. I can't get to work that late." So, before I did a moment of problem-solving, I dashed off an e-mail to the special ed department inquiring about the accommodations that are made for students like Bud who take the bus - Is there a bus aide?, I wondered. Is there a "special ed" bus? I wanted to gather as much information as I could as I formulated a plan. I got a quick response from the inclusion coordinator, who said she'd look into it.

The weeks passed and I realized that my initial reaction was the kind of panic that's borne of unexpected change, and was not routed in any real need for me to arrive at my office at a particular time. I rearranged my schedule to accommodate a later drop-off for Bud, and promptly forgot about my earlier inquiries.

Fast forward to August 26, Bud's first day of school. I was unsure about what to expect from Bud. For the entire second half of second grade - from January till June - Bud cried nearly every day at drop-off - big, soggy, woeful, sad goodbyes that started each day with a broken heart for both of us. I'd seen a turn-around, though, in summer school - four mornings a week that Bud enjoyed and looked forward to. By the end of the summer, most of our drop-offs were tear- free. And besides that, Bud seemed to be looking forward to third grade; he seemed ready for it.

He was in a cooperative mood as we got ready for school that morning, and I was feeling hopeful about making an easy transition. It was just about that time that I looked out the window and saw it: there was a full-size school bus in front of my driveway. I walked outside tentatively and the bus's big doors opened.

As I walked toward the bus, I called to the bus driver, "Are you here for Bud?"

She said she was.

I walked to the door and said, "There must be a mistake. I didn't know you were coming. Bud's autistic - he can't really manage a bus."

"Yes, that's why I'm here. He's the only child on my route."

I stared at her, blinking, while the sentence registered. Then I stepped up and glanced down the long, vast expanse of empty bus.

"This whole bus is for Bud?" I said.

"Yes," she answered.

I looked down the long aisle again. The seats and floor were pristine. I sniffed. The air was full of new bus smell.

"Is this a brand new bus?" I asked.

"Yes," she answered.

"They sent a whole brand new bus just for Bud?" I asked.

"Yes," she answered.

I stood dumbfounded, struggling to make sense of what was going on. I knew I couldn't plop Bud down on the bus and send him merrily on his way. But, my goodness, they'd sent him his own bus, for heaven's sake! It felt ungrateful to simply send it away.

"The thing is," I said, "Bud is a kid who needs preparation. He needs to know what to expect. And I didn't know you were coming."

"Somebody should have called you," she said.

"Right," I answered, "but they didn't. And so I've never even mentioned the possibility of a bus to him. We haven't talked about it at all. I mean, there is just NO WAY that he is getting on this bus today."

"Well, maybe he'd like to just come and look at it," she suggested.

My mind raced. Was that a good idea or a bad one? There was no way to know.

"I'll go get him," I said.

I went back inside and approached Bud. "Hey, Bud," I said as jovially as I could. "There's a school bus outside! Do you want to see it?"

"Okay," he said, following me outside. As we hit the driveway he began to suspect that something might be afoot and he added, "I don't want to ride a bus."

"No, not today," I said. "Today we're just looking at it." Bud climbed on board and the bus driver introduced herself. He walked down the aisle and looked around. He remained calm.

"Maybe someday you'd like to take a bus," I said.

"No," he replied.

"Well, not today," I said. "Maybe someday." We said goodbye to the bus driver, then piled in the car, now running late on the first day of third grade. As we drove, I could feel Bud's anxiety rising.

"I don't take a bus to school," he said. "I just ride with Mom." I assured him that he was right, and I didn't push any further. Despite that, his anxiety was high enough to produce tears at drop-off, so I left his classroom quickly and went off in search of someone from the special ed team. I found Bud's OT in the hallway and gave her the run-down on the bus situation. We quickly brainstormed - Would riding the bus be a good thing for Bud? Was there a way we could make it work? Could we create a social story? Maybe I could ride with him the first time? Or even the first week? The team set to work creating a plan and said they'd contact the bus company.

As the morning progressed, my anxiety grew. Questions and fears raced through my mind. Did the bus have seat belts? Would somebody be waiting for Bud when the bus pulled up at the school? What would the bus driver do if Bud started crying, started panicking, started screaming, started throwing himself around the bus? What would happen if there was a thunderstorm while he was on the bus? And what about global warming for heaven's sake? Could I really justify the use of a whole school bus just for transporting my child to school???

After a few agonizing hours, I called the special ed team back and left a lengthy voice mail message. We didn't need a bus. We didn't want a bus. What we needed was a smooth transition to third grade, and we didn't need to complicate it by throwing Bud a bus-shaped curve ball. I told them to stop the preparations and to call off the bus.

The next morning we were into the final stages of getting ready when I looked out the window and saw the bus back at the end of the driveway. I said nothing to Bud, but slipped out the door, gave the driver a hundred apologies, and sent her on her way. She asked what my concerns were and I gave her the run-down, but told her that, ultimately, it was just too big a change for Bud right now. Someday, maybe. But not now. She was terrific, and said she understood completely. She said she'd let the bus company know, and gave me the manager's phone number in case I wanted to call to talk about options for the future - in a month, in January, next year. I thanked her again, tucked the phone number into my bag, and promptly forgot all about it.

The next day was bus-free and Bud and I finally started to establish a new third grade drop-off routine. Over the next few weeks, we fell into a regular - though perhaps not yet easy - pattern to transition him to his school day. Things finally started to feel predictable.

I was more than a little startled, then, when one morning about three weeks later, as Bud climbed into the car to go to school, I opened the garage door to find a mini bus parked at the end of my driveway.

"I don't want to take a bus!" Bud cautioned. I just shook my head and walked down the driveway, sure that somehow the driver had made a mistake and was at the wrong house.

She hadn't, and she wasn't.

I told her about our earlier bus confusion, about the concerns I'd had, about the decision we'd made to scrap the bus idea entirely.

She knew about my concerns. She said they'd sent a small bus because they knew that a large one was too scary for him. They'd created a three-child route because riding alone was too overwhelming. What else could they do, she wondered, to make this work for us?

My friend Kiki would call this "too helpful by half."

I thanked her profusely, gushed at their accommodation, and gave her the old "it's not you, it's me." I told her that he just wasn't ready to take another big step, then I sent the bus away and drove behind it all the way to school.

Later, the manager of the bus company called me. She apologized and said that she'd intended to call me the previous week to talk about the new plan, but had obviously forgotten. She wanted to know if there was anything else they could do, and then told me she'd make a note in the file that said that I would call them if I wanted to revisit the transportation issue.

That was two weeks ago. Now Bud's back into the new routine - the one in which he greets Ms. Brett, the wonderful paraprofessional who requested to stay with him in third grade after working with him through a very difficult second grade year, by walking through the school door each morning, seeing her, and groaning in a loud voice "Oh no! It's YOU again!," then tugs at my sleeve and pleads half-heartedly "No, Mama, wait, Mama, no, no, no," until I leave and he cheerfully walks to his classroom with his good friend Ms. Brett, ready to start another great day at school.

So, as I said, all things considered, Bud seems to be off to a terrific start in third grade. I can't help myself, though - now that a couple of weeks have passed and we're into October I keep peeking out the window as we get ready to leave in the morning. Call me crazy, but I just feel certain that any day now they'll be sending us a chauffeured limousine.

Sunday, September 28, 2008

Truth is stranger than fiction

I'm not sure which was more outrageous - the brilliant SNL parody or the real thing:

Watch CBS Videos Online

All I know is that this is the first time in recent memory that I've found myself in general agreement with a conservative columnist.

Wednesday, September 10, 2008

Rescue at sea

This is a remarkable story.

Walter Marino and his twelve-year-old son Christopher, who has autism, were swept out to sea and had to tread water for fifteen hours before they were rescued.

It seems that, in some ways, Christopher's autism was actually an asset in helping him to manage the ordeal. Says Walter, “His lack of fear was calming to me. He was on an adventure — I mean, he was laughing. It was just a day in the ocean to him."

This morning, Matt Lauer interviewed the family on the Today show. I dare you to watch it without crying.

Tuesday, September 09, 2008

Burning up the charts

Yesterday, Dierks Bentley released his latest single, "Feel That Fire," to radio stations. He also made it available for download from his website to fans and executive-producer types. I added it to my iTunes playlist and called Bud over to get his expert opinion.

Bud peered over my shoulder to look at the screen while he listened, then read the title, snapped his head toward me, and said, slightly aghast, "I don't want to feel a fire!" He reached out slowly, demonstrating the hesitancy he feels about touching his hands to flames and embers.

"He's not singing about a real fire, Bud," I said. "We never, ever touch real fires." I considered trying to explain the metaphor further, but just then Dierks hit the lyric "she wants to make love on a train" and I decided that I'd already said enough to make my point.

Bud listened to the rest of the song, smiled in approval, and asked me to put it on his iPod. I agreed, assured that he was clear that Dierks was not giving him a directive on the whole fire-feeling business.

Honestly, though, I hadn't realized just how much street cred Dierks has with Bud - enough that Bud would actually consider taking his cues from his long-haired hero. The revelation has started me thinking.

So, Dierks, if you're reading - maybe you'd consider adding a track to your forthcoming album? I'm thinking "Clean That Playroom" has "hit single" written all over it...

Friday, September 05, 2008

Palin by comparison

Two very different takes from two very different people. One single clear message.

Gloria Steinem.

Jon Stewart:

Sunday, August 24, 2008

Biden my time

Yes, I am still here. Thanks to those of you who have checked in to make sure that I haven't checked out. As you may know, I work at a college, which means that this is one of the busiest times of year for me in a regular year, and because of a number of factors at my particular institution, this August has been crazier than most. Add to that the fact that Bud is gearing up to start third grade next week (with all the hopes and fears inherent in that) and that I am trying to squeeze in my RDI "homework" when free moments present themselves, and there's just not a lot of time left for blogging. But I am still here.

Of course, I'm also distracted this week by Barack Obama's announcement that Joe Biden will be his running mate. I like Biden and I think he's a good choice, but I just don't understand the timing of the announcement. Like the rest of the good, faithful Obama supporters out there, I spent all day Friday checking my phone for the big text message announcement that didn't come. I checked CNN before I went to bed Friday night and learned that Kaine and Bayh were out of the running, and all signs were pointing to Biden.

I woke the next morning to a by-then-anticlimactic text message from the Obama campaign that had been delivered at 3:17 a.m.

Seriously? 3:17? Followed by their kick-off rally on a Saturday afternoon, when most of America was at the beach or the mall or anywhere else but in front of their televisions?

What does this mean?

I'm inclined to think one of two things: 1) They intended to make the announcement on Friday, but encountered a technological glitch that would have fouled up the text message thing, and the risk of embarrassment about such a high-profile plan was worse than bad timing for the event, or 2) This was calculated timing, designed to allow the press to publicly vet Joe Biden while no one was paying attention, so that what he was saying (and not who he is) was making headlines by the time anyone started listening.

Or maybe the Obama folks are just as busy as I am right now - which makes me wonder if I might be under-utilizing my time at 3:17 a.m....

Saturday, August 09, 2008


I'm sure it comes as no surprise to you that Bud is one cool dude. Lately he's been adopting a cool attitude with me, complete with cool 'tween language - rendered, of course, in his own inimitable Bud-speak.

The other day I was ranting at him about something that I clearly thought was important and he clearly thought was not. "Bud," I blathered, "You have to stop blah blah blah, or else it will blah, blah, blah, and then we'll have to blah, blah, blah...." You know how it goes.

Bud's face was the picture of pre-teen ennui, and he placated me in that condescending tone that kids reserve exclusively for their parents: "Kill ouch, Mom."

I knew instantly what he was trying to say, and I seized upon the teachable moment: "Bud, you mean 'chill out.' People say 'chill out' when they want other people to relax and stop making a big deal of something. So you wanted to say 'chill out' to me, and not..."

"Mom," Bud interrupted.

"What?" I asked.

"Kiiiiiiill ouch."

Friday, August 08, 2008

Disenchanted and relieved

Thank you, my friends, for being smarter than me.

Remember earlier this year when you sent e-mails and made phone calls and talked politics with me as you tried to sway my vote away from John Edwards and toward Barack Obama? Remember how I said I just couldn't find a reason not to support John Edwards, how I said I thought he put the needs of the country first, how I said I simply trusted him, believed in him? Remember how I said I liked Obama, but how I continued to throw my support to Edwards until he left the race? And then remember how you voted in large enough numbers to put Obama in the lead?

You were right. I was wrong.

If Edwards were currently the presumptive nominee, John McCain would be on the fast track to the White House.

Next time, I will listen to you more carefully.

Saturday, July 26, 2008

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.

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

Thursday, July 24, 2008

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.

Tuesday, July 22, 2008

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.

Wednesday, July 02, 2008

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.

Saturday, June 28, 2008

Unity, or: What I did on my summer vacation

You know how sometimes you're just in the right place at the right time? I had a lot of that this week.

First I discovered that my vacation schedule was coordinating well with the work schedules of Barack Obama and Hillary Clinton, making it possible for me to join them at their historic unity rally in the tiny, rural town of Unity, New Hampshire.

Then I discovered that friends of mine were equally available and equally up for the adventure.

We spent an extraordinary amount of time simply getting to the event. No cars were allowed in town, so like everyone else who attended, we drove to a ski area, stood in a long line to board a school bus, then rode, rode, rode across the back roads of New Hampshire to reach the tiny elementary school that was hosting the rally.

When we arrived, we discovered that most of the other 4,000 people in attendance were already there. My friends and I hiked about a third of a mile to find the end of the line of people waiting to walk through the metal detectors to enter the field. We'd been in line a short time, chatting and soaking up the atmosphere, when a woman with a hand full of wristbands sidled up to me and said in a low voice, "Are the three of you together?"

I couldn't imagine where this was going, but I told her that we were.

"Would you be interested in sitting on the bleachers behind the podium where Barack and Hillary will be?" she asked.

"Yes, we would," I answered, as I turned to my friends in disbelief.

She handed us red wristbands, then we joined a small party of other folks she'd pulled out of line as she marched us past the throngs of people waiting to enter and up to an entrance for special guests. We entered at the same time as Carol Shea-Porter, Congresswoman from New Hampshire.

We continued on with our little group of wristband-wearers and travelled through a maze of barricades and bouncers, until we reached the front of the field - a small bleacher section set up directly behind the stage and directly in line with a bank of news cameras.

The pied piper of wristbands passed us off to another campaign worker, who looked the three of us over, sized us up on I-don't-know-what criteria, then said definitively, "Okay, this row - first you, then you, and then you on the end." I was the "you" on the end.

It was surreal.

More campaign workers came out, handing us signs, working up the energy, and reminding us that we were the "face of the campaign." The energy built to fever pitch when Barack and Hillary took the stage, and we spent the better part of an hour applauding and hooting and chanting and holding up signs and - mostly - continuing to marvel at our outrageous good fortune.

When Barack and Hillary left the stage to work the crowd, we left the bleachers and made our way down to the field, with very little thought that we'd actually make contact. But - since that's just how our luck was running - we did, and now I can say that I shook the hand of Barack Obama, the next President of the United States.

Then it was over and there were 4,000 of us waiting to climb back onto school busses to make our way back to our cars. We decided to take our time and not fight the crowds, so we wandered back through the maze of barricades to try to find one of those hamburgers we'd heard the Kiwanis Club of Unity was selling.

On our way, a woman with a video camera stopped us. "Could I ask you a few questions?" she asked.

Well, of course she did. It was that kind of day.

She interviewed both of my friends, who were characteristically thoughtful and articulate - the kind of interviewees the camera loves. As she said goodbye we asked who she was with, knowing that she could easily be there representing the local cable access channel.

Not so. Her response: "Associated Press."


By this point we were downright giddy. We ate our burgers and talked about whether or not we would ever again wash our Obama-shaken hands and watched as slowly, slowly, slowly the crowd thinned as the campaign staffers loaded school busses and sent them off to their lots - a round trip that meant it would be an hour before each bus would return to reload. We were among the last hundred or so to board the busses - which we did, not in ordinary rain, but in a downpour of epic proportion (so much for never washing our hands again...).

I spent the evening surfing the web and looking at footage from the event - "Bud, look! There's Barack, and Hillary, and Mom!"; "Hey! Hillary and I are making the same face in this picture!"; "Why am I the only person in the crowd who is acting like she's at a rock concert?" MSNBC, ABC, CBS - I was everywhere. It seems that the campaign staffer did me a big favor by insisting I be the person sitting on the end. I was in direct line with the cameras, unlike my friends who were visible when the cameras panned the crowd, but were cut out when they zoomed in on the candidates. I felt bad for a minute - felt like the bad spotlight-hogging friend.

Then I remembered the Associated Press.

Yes. My friends are in syndication - close up, larger-than-life, and articulate as ever. Our fifteen minutes of fame has already lasted an hour and a half.

And the rally itself?

Outstanding. Inspiring. Invigorating. Motivating.

Unity. Hope. Change.

Fired up. Ready to go.

Yes we can.

Wednesday, June 18, 2008

Now that's a lot of good

I mentioned previously that Bud likes a certain Trace Adkins song. Apparently, I didn't realize just how much he likes it.

We were driving in the car the other day and Bud was sitting silently in the back seat, listening intently to his iPod. Suddenly, his voice rang out and filled the car with a passion-filled declaration:

"Ladies Love Country Boys is MILLIONS of good!"

Then he fell silent again, as he calmly returned to his focused listening.

Millions of good, people. And to think the download only cost me ninety-nine cents.

Tuesday, June 17, 2008


It seems there is another MOM-NOS out there posting on the web.

I stumbled upon her posts through a Google search and discovered that "MomNos" is a "Senior Member" of the Autism Speaks community and has been an active poster on their boards since June 2007. I also discovered that she and I have radically different philosophies: she lists her interests as "fighting autism" and her occupation as "helping my child recover from autism."

So, let me just clarify for anyone who might read both this blog and the Autism Speaks boards, and who might be thinking I have a split personality:

She is not me.

I am not her.

We are interested in and occupied with entirely different things.

Sunday, June 15, 2008

Jeremy Cabbage: A hero for our time

Children's author David Elliott creates characters who are much like the author himself: full of humor, full of heart, and just the tiniest bit subversive. I know this for two reasons: first, because David is a friend of mine, and second, because I never miss an opportunity to fall in love with one of the characters he's created. My love affair started with Roscoe Wizzle, the boy who took on corporate greed and corruption when he discovered that fast food was turning him into a bug in The Transmogrification of Roscoe Wizzle. Then it was Evangeline Mudd, the intrepid daughter of primatologists, who taught me the word "brachiate" (now one of my favorite words - you'd be amazed how often it comes in handy) in Evangeline Mudd and the Golden-Haired Apes of the Ikkinasti Jungle. And now there's Jeremy Cabbage.

Jeremy is the hero of Jeremy Cabbage and the Living Museum of Human Oddballs and Quadruped Delights. When we meet him, he is an orphan living at Harpwich's Home for Mean Dogs, Ugly Cats, and Strey Children, a joyless institution in a joyless city - the Metropolis, under the miserly rule of Baron Ignatius Fyodor von Strompie III, whose own sunny and luxurious home at Helios stands in stark contrast to the dilapidated and colorless world beyond its gates.

As we get to know the Baron, we discover that the conditions in the Metropolis have developed less because he is purely evil, and more because he is short-sighted and focused solely on his own self-interest - which makes his style of leadership seem all too familiar in the modern day and makes the plight of the citizens of the Metropolis hit just a bit too close to home. Through their response, Jeremy and his friends - which include a sapient pig, a wuman cannonball, and a couple tattooed with every word in the English language - remind us about the danger of passivity, the insidious nature of intolerance, the power of community, and the responsibility we have to choose to do what is right over what is safe.

There's another theme in Jeremy Cabbage that also hits close to my heart. It explores how we, as parents, hold dreams and expectations for our children when they are born, but sometimes discover as our children grow and develop that our real-life children are very different from the children of our imagination (does this sound familiar to anyone else?) Jeremy reminds us that our mission as parents is to love our children not in spite of who they are, but because of who they are. As one character explains, when asked why he'd want to adopt a waif like Jeremy, "Why does anyone want a child? To love, of course." To love, indeed.

You'll be hearing a lot more about Jeremy Cabbage in the future; the movie rights were optioned by Fox 2000 long before the book was published. But don't wait to be introduced to Jeremy and his friends on the big screen. Get to know them now, in depth and on paper - and be prepared to fall in love.

Saturday, June 14, 2008

Ladies love country boys

Ask Bud who his favorite singer is, and he'll give you the same answer every time: "Dierks Bentley."

But put your head next to his while he's listening to his iPod these days, and it's likely that you'll hear a different voice singing these lyrics:

"Now she's riding in the middle of his pickup truck, blaring Hank Jr., yelling "Turn it up!"..."

It's Trace Adkins belting out "Ladies Love Country Boys." Bud can't get enough of it.

For weeks he's been asking me to download it and I've been resisting. I'm not even sure why. The song isn't offensive. It's just - well, it's just such a guy song and, as I've mentioned before, I'm not sure that I'm ready for my little boy to turn into a guy.

I'm afraid there's not much I can do about it, though, especially when I consider the note that Bud brought home with him before his last school break. I'd unpacked his backpack and there among a stack of math and spelling worksheets was a folded scrap of paper with tattered edges, adorned with stickers of bunnies and raccoons, and labeled "To: You Bud."

Inside were more stickers and a handwritten message:

hope you have a Happy vecashion
Love Kelly
P.S. You are so cool
I like contry to
I like Dirks Bently,
talor SwiFt, Carie
undr wood.

So in the face of this irrefutable evidence, I think I have to admit that Trace and Bud just might be right.

Ladies really do love country boys.

Friday, June 06, 2008

Storms, inside and out

I've been following the online weather forecast closely, loading and reloading the page, willing it to change. But so far, it's not working. Every time I check, it tells me the same thing - that this is what is headed our way today:

This is what's in store for us tomorrow:

This is what Sunday will bring:

And this is what's coming Monday:

If you're a long-time reader, you may recall that two years ago Bud developed an overwhelming fear of thunderstorms. Last year, it got so terrible, so consuming, so all-encompassing, that it got in the way of Bud's ability to function day-to-day. It made medication a necessity instead of an option.

So, though I complained incessantly about the record snowfall around here this winter, I was also glad that the winter brought with it respite from thunderstorm season. But it's nearly summer now. And the thunder has returned.

I knew it was coming, of course, and we have been preparing for it. We've been talking about how sometimes things that scare you when you're younger aren't as scary when you're older. Bud's been talking about thunder with his psychologist, Dr. Susan, who helped us develop an alternative thunderstorm plan that would give us something to look forward to - we decided on a cookie party, as both Bud and I know well the restorative power of toll house.

Dr. Susan even created a beautiful Sesame Street book for Bud, in which Telly and his hamster Chuckie Sue confide to Baby Bear their fear of thunderstorms. Baby Bear comforts them and explains in very basic terms what makes thunder happen ("Thunderstorms happen when two big clouds have a pushing contest. When they rub their hands together, they make a loud noise.") The Count joins them, and explains that counting after a flash of lightning will tell you how far away the storm is. And, finally, Cookie Monster ventures along and announces "Me going to special thunderstorm cookie party. Me like to eat cookies in storm!" He invites them all along, explaining "Everybody eat cookie. Not mind thunder." They all go along to the cookie party and Telly and Chuckie Sue discover that they don't really mind the thunderstorm at all. Bud loves Dr. Susan's book, especially because it features some big bright illustrations of all his favorite characters, so it opens the door to conversation about the subject in a mostly nonthreatening way.

We've also gotten help from Dr. Donovan, the psychiatrist who manages Bud's medication. He has helped to tweak the dosage and timing of Bud's medications over the past several months to find the right balance for Bud to function at his best. And he also reminded us that though thunder is loud, we are too. He told us that we can make our own storms, and that we can be as loud as - and even louder than - the thunder. So, on beautiful sunny days when the forecast calls for nothing but clear skies, we've practiced making our own loud banging noises - rattling an entire roll of aluminum foil, stomping our feet as loud as we can, banging together on drums.

And when the thunder finally arrived last weekend, we were as ready as we could be.

I knew it was due sometime on Saturday, though I wasn't sure when. I didn't mention it to Bud, but planned on sticking close to home for the day. The morning was overcast, but the rain hadn't started, so I thought it was safe to take a quick shower. I was fully lathered up when the bathroom door flew open and I heard Bud's anxious voice asking, "Was that you, Mama?"

"Was what me, Bud?" I asked, though I was afraid I knew the answer.

"That banging sound, Mama? That was just you? That wasn't thunder?"

I started rinsing as fast as I could. Then I heard it: the big, loud, unmistakable boom of thunder.

"That was just you again, Mama?" Bud asked. I could hear it in his voice: he wanted me to say that it was just me. He knew it was thunder, but he wanted me to assure him that it wasn't. I hesitated for an instant, then wrapped a towel around myself and climbed out, dripping and still a little soapy.

"No, that wasn't me, Bud," I said. "That was a little bit of thunder."

Bud started to panic.

I rushed him into my room, pulled down the shades, pulled on some clothes, and put us both to work.

"We'll show that thunder, Bud," I said. "We'll show him that we can be louder than him!" We climbed onto my bed and started banging on the wall together. I heard the rumbling outside, but saw that Bud was too busy banging to notice it. I banged louder and shouted "WE'RE LOUDER THAN YOU, THUNDER! WE'RE NOT AFRAID OF YOU, THUNDER!"

"Let's be even louder, Bud," I said. "Let's stomp our feet, too." Bud was still too distracted to pay attention to what was going on outside, but it occurred to me that a single flash of lightning could redirect his attention and ruin everything.

"Bud!" I shouted. "We need lightning! Can you make the lightning?"

I kept up the banging and stomping and shouting while Bud threw open the door to my closet and flicked the light on and off. I listened for the thunder outside. It had stopped.

We'd made it.

I stopped banging and the sound of the rain - a light tapping when we'd started, but now a full downpour - filled the room.

"Mama, the rain..." Bud said, anxiety creeping back into his voice.

"Let me show you how to make a rainstorm, Bud," I said. And together, we rubbed our hands, flicked our fingers, tapped our legs, and stomped our feet as we simulated the rise and fall of a downpour.

As soon as our rainstorm ended, and before his anxiety returned, I asked "I forget, Bud. What fun thing did we say we were going to do if there was a storm? What did Telly and Chuckie Sue do?"

"Have a cookie party!" Bud answered.

I dashed to the kitchen and grabbed some cookies, then we cuddled together in my bed (Cookies in bed??? This must be a special occasion!) and celebrated a job well done.

"We scared the thunder, Mama?" Bud asked.

"We did, honey. We were even louder than the thunder."

"We scared the thunder all the way to Canada, Mama?" Bud asked.

"All the way to Canada, Bud," I said. "Then all the way to the North Pole, and then right back up to the sky."

"The thunder said, 'Eek! I'm afraid of those people noises!'" Bud said.

We'd survived the first storm of the season. Bud seemed to be managing well. All the same, though, for the rest of the day, and through the next day and most of this week, little signs of the old storm perseveration peeked through - jumping at the slightest noises, asking repeatedly about impending weather, and making proclamations and assumptions based on false correlations: "I'm not wearing my purple Joe shirt. That makes a storm." or "The storm was Saturday? There will be a storm next Saturday?"

And so I'm braced for the onslaught of foul weather headed our way. I'm hoping that homemade thunderstorms can continue to carry the day for days on end. I'm hoping that the thunder runs screaming to Canada at the very first sound of our people noises. And I'm hoping that no matter how many chocolate chip cookies we eat, they never lose their magic.

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.


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!

Wednesday, April 30, 2008

The competition heats up

As I expected, the April optimists never had a fighting chance in Ice Out 2008.

The odds are looking much better for May place-holders, however. After a stretch of warm weather and a couple of rainy days, the front yard looks like this:

I have a feeling that the competition is about to get interesting...

Monday, April 28, 2008

Split ends

Good news: Meg and I are back together.

My search was surprisingly easy. Last night, I contacted a former colleague through Facebook because I knew she was a long-time customer of Meg's, though I knew she'd been living in another part of the state for the past several months and had probably been getting her hair done elsewhere. My friend was shocked to hear from me, because - get this - she had run into Meg at a department store the previous day.

Meg's departure was sudden, and she did not have access to her customer contact information. She asked my friend to spread the word that she was starting this week at another local salon. My friend gave me all the info I needed and must have passed my info on to Meg as well, because when I got home tonight there was a message from Meg waiting for me.

It's like the stars are aligning: all of the fabulous haircutting with none of the awkward interactions with my former stylist.

Don't you just love a happy ending?