Monday, October 26, 2015

Caveat lector

Blogging has changed a lot since I started doing it ten years ago. Back then, most of my readers were regulars – the same handful of people who made the rounds of the same blogs I was reading. We had continuing interaction and conversation in a variety of locations on a variety of subjects. At that time, in most cases, it was safe to assume that people reading one of my posts had read other posts of mine as well.

Not so anymore.

Social media has changed the nature of blogging. If I want anyone to know I have a new post up, I pretty much have to post the link on my blog’s Facebook page. (I guess I could tweet it, if I didn’t loathe Twitter so much.) Once the link has made its way into social media, it takes on a life of its own. It gets posted elsewhere, people see that a friend has “liked” it, and they click to see what it is - and suddenly a large number of my readers are reading a single post in isolation, without any context about me, my writing, or my life.

This isn’t a complaint. It’s just an acknowledgement of a new dynamic – a new reality.

Back when despite being on the internet, the blog felt more insular, I did a lot of meta-communcation – writing about writing, blogging about blogging. I did a lot of deconstructing – reminding people of what I was not writing, and why. I’m guessing that many of my current readers haven’t read most of that writing, and so, here is a bit of a recap, ten years on.

1. Everything I write is true, but there are many truths that I don’t write about.
Everything you read on the blog has actually happened. If I say that Bud did something, you can count on the fact that he did it. But there are many, many, many things that happen in our lives that do not, and will not ever, make it on to the blog. They’re private.

2. If you only know Bud from the blog, then you don’t know Bud.
See #1. Here on the blog, you are getting a glimpse into a portion of who Bud is. He has greater dimension and more complexity and, I’m certain, he is far more interesting in real life than he is on the blog. Please do not make assumptions about his “level of functioning” (whatever that is) based on what you read here.

3. I make no attempt to universalize my experience or Bud’s experience.
As the saying goes, “if you know one person with autism, you know one person with autism.” I can only speak to my own experience, and I am not suggesting that your experience (if you have a child with autism) will look anything like it. As is true with every other element of the human experience, your mileage may vary.

4. If it sounds like I’m telling you what to do, it’s because I haven’t written it well.
This blog is not a “how to.” I don’t give parenting advice and I try hard not to be prescriptive. Anything here that sounds like parenting advice is reflective of my inability to phrase my story well, and not of my intention to tell you what to do. I don't pretend to have the answers.

5. I won’t apologize for being positive.
I am not trying to “whitewash autism” (and I apologize for the use of that phrase, but it’s the one I keep reading in the current press). My blog has a focus on the positive, because that is who I am. My life off-blog also has a focus on the positive, despite the fact that I have experienced some really heartbreaking things. If I were a different sort of person, I could write a different sort of blog, which would be equally true. (See #1 above.)  But I'm glad that I'm not, and that I don't.

So, there you have it. Caveat lector. Let the reader beware. Remember that anyone with a computer and an internet connection can write a blog. I’m just a person who loves her son and wants to share some pieces of her story.

Your mileage may vary.

Tuesday, October 20, 2015

From Raffi to the Wiggles: The power of sideways growth

When Bud was four years old, he was a huge fan of Raffi. Okay, he's still a fan of Raffi - but now, he's a fan of Raffi in addition to a hundred other things. Back then, Raffi was part of an exclusive circle. As a result, we spent a lot of time in those days listening to Raffi's music and watching Raffi's concert videos on VHS. So, when we learned that Raffi was doing a show in Boston, a mere two hours away, we scooped up tickets to take our preschool boy.

The trip to the show was an event in itself - we little country mice packing up for a trek to the big city, with a boy who still required us to pack for a three-hour event as though we were going away for a weekend. But we did it. We braved the Boston traffic, magically found parking, and then walked our boy through the sights and sounds of the city until we got to the concert venue.

It wasn't until we were in our seats that it all started to fall apart.

I couldn't tell you the details if I wanted to. One of the lovely things about being me is that I simply don't retain the specifics of the bad stuff. I remember it in a global way, but I just don't hang on to the moment-by-moment hard times.

So, I know this. By the time Raffi took the stage, Bud and I were sitting in a quiet corner of the lobby, where I was trying, mostly unsuccessfully, to calm his anxiety and sooth his fear. We made a couple of attempts at re-entry, but ultimately, we ended up making the trek back through the city streets, back to the car, and back on the long ride home, without having heard a single note of Baby Beluga - or anything else.

I thought of our Raffi experience earlier this year when, once again, Bud and I ventured out to see another musical favorite, Laurie Berkner.

This time, the experience was completely different.

Though Laurie's audience was as raucous as Raffi's had been all those years ago, Bud hardly seemed to notice the chaos. He was unfazed by the preschoolers shrieking and dancing all around him. When beach balls started bouncing through the audience, he reached for them to swat them away. When Laurie asked a question, he gleefully shouted an answer. And when Laurie asked him to sing along, he joyfully belted it out. And, throughout the performance, he kept notes - or, more accurately, he instructed me on the notes that I should keep, recording each song in order so that he would be able to use the information later.

We had a wonderful time.

A few months later, we learned that the Kratt Brothers were coming to town. (Do you know the Kratts? They are currently the stars of the PBS series Wild Kratts, but they always be "the Zoboomafoo guys" to Bud and me. We've been fans for a long, long time.)  Bolstered by our success with Laurie Berkner, I purchased tickets to both the show and the meet-and-greet that followed it.

Bud had as much fun at the Wild Kratts show as he'd had at Laurie Berkner, but the meet-and-greet was the real draw of the day. We waited in a long line full of very little kids, and when it was his turn, Bud had solid one-on-one time with each of the Kratt Brothers. First, he met Chris.

"What's your favorite animal?" Chris asked him.

"I like dogs," replied Bud. (And, not for nothing, does anyone remember THIS?)

"Oh, do you have a dog at home?" Chris asked.

"Nope!" said Bud.

"You just like them?"

"I sure do!"

Chris signed a picture for him, and then noticed that Bud had brought a book from their first, pre-Zoboomafoo show, Kratt's Creatures.

"Do you want me to sign your book, too?" he asked.

"Sure!" Bud beamed.

And then we were on to Martin. He started chatting with Bud, then noticed the book Bud was carrying.

"Hey! That was our very first book!" he said.

"Yeah!" Bud said, and handed Martin the book so that he could sign it, too.

"Do you have any questions for me?" Martin asked while he signed.

"Yes," said Bud. "Is blue your favorite color?"

"Yes it is!" said Martin. "That's why I always wear a blue shirt!" Then he looked at Bud, and said, "You're wearing a purple shirt. Is purple your favorite color?"

"YES!" said Bud, delighted that he'd guessed right. (And it was only then that I wondered if Bud has planned his outfit, knowing that the Kratts would be wearing their favorite colors, too.)

They chatted about Bud's favorite Wild Kratts episode, and then we headed out. Bud was over the moon.

In the car on the way home, Bud informed me that The Wiggles would be coming to town in a few months. On his birthday.

I booked the tickets the following week.

Last month, on Bud's sixteenth birthday, we headed back to the theater for the Wiggles show. We had our notebook in hand to capture the set list, which would be used to make future PowerPoints. I had my camera at the ready. We were good to go.

On the way to the show, Bud said casually, "I can't wait to meet The Wiggles."

I could feel my panic start to rise. "No, Bud," I said. "The Wiggles aren't having a meet and greet. It's just a show."

"Okay," he said. "We'll see."

"No, Bud," I said, more firmly. "Seriously. We're just going to sit in our seats and watch the show. We're not going to meet them. No one is going to meet them. I don't want you to be disappointed."

"Okay," he said.

"I need to make sure you understand, Bud," I said. "We're not going to meet them. Do you understand?"

"I understand," he said. And then he looked out the window and added quietly, "But we'll see."

We made it to the theater and I recognized instantly that Wiggles fans, as a whole, are even younger than the fans of Laurie Berkner or The Kratt Brothers. For the most part, they seemed to be under five. If Bud noticed, he didn't mention it, and it certainly didn't seem to bother him.

As we made our way through the lobby, a familiar-sounding shriek drew my attention. I looked over and saw a mother with her preschool son. He was upset. Profoundly, inconsolably upset. I don't know them and I don't know their story, but the tableau looked very familiar.

We lost sight of them as the crowd buoyed us along, and soon we were in our seats and the show was starting and we were singing and shouting along with the other fans in the crowd.

If I'd done any research at all, I'd have learned that The Wiggles have some predictable shtick built into their show, and I would have come to the show more prepared. For example, many of the kids in the audience were holding roses - real roses, plastic roses, paper roses, whatever. As it turned out, there was a point during the show when the Wiggles left stage and wandered through the audience collecting flowers for Dorothy the Dinosaur.

As it happened, the family sitting next to us had come prepared. Wiggle Lachy made his way over to get their flowers and, since Bud was sitting on the aisle, Lachy had to lean over us to talk to the little girl, ask her name, and thank her. Then he stood up right next to Bud, and started to scan the audience for more flowers.

Bud saw his opening. "Hi, Lachy," he said. "My name is Bud."

Lachy looked down, and if he was surprised to see a sixteen-year-old fan looking back at him, he didn't show it. Instead, he tucked the flowers he was carrying under his arm and he held out his hand.

"Hello, Bud," he said, with a handshake and a smile. "Are you enjoying the show?"

"Yes, I am," Bud answered, with a firm handshake back.

"Good!" Lachy said. "It's very nice to meet you."

"It's nice to meet you, too," Bud replied. And then, Lachy was off. Bud turned to me with a smile and said, "I met Lachy, Mom!"

My mind flashed back to our car ride and Bud's hopeful "we'll see..."

Then it flashed to the family we'd seen in the lobby when we arrived. The family with the child who was frightened, or overwhelmed, or just simply could not handle it.

Then it flashed to us, twelve years earlier, at a similar venue, sitting in the lobby during a Raffi show.

I wanted to run out of the theater and into the lobby to look for the family huddled in a quiet corner, trying to make it all okay.

I wanted to tell them not to worry, and that if they just gave it time, it would all work out.

I wondered, though, if when Bud was four years old, I would have been able to view him spending his sixteenth birthday at a Wiggles show as a mark of success. I'm afraid that, from that vantage point, I wouldn't have been able to recognize the tremendous growth and development that had led us to that day.

Last year, I read this post by Lydia, a young adult with autism, who introduced me to the concept of "growing sideways," along a unique developmental trajectory that might not always be clear to others. Her words resonated with me deeply.

Bud still loves all of the things that he loved in preschool. His passion now is the same as it was then. But now, he uses the things he loves in entirely different - and extraordinarily evolved - ways.

When he was a preschooler, Bud loved the Teletubbies and Mister Rogers and countless other preschool shows. Back then, he watched videos, and listened to music, and played with toys.

These days, Bud still loves the Teletubbies and Mister Rogers and countless other preschool shows. But now, he uses them as the paradigm through which he expands his horizons and hones his skills. Now, when Bud works with his treasured programs, he researches. He investigates. He catalogs. He transcribes. He narrates. He documents.

Bud is a master of Google and YouTube. He is expert at Word and PowerPoint. He is an extraordinary speller. He can pull out main points to create titles and captions. He uses punctuation appropriately. He types with incredible accuracy and speed. He can freeze frame and cut and paste and size images. He looks for patterns and themes and relationships. 

Bud uses the things he loves as jumping-off point. He researched the Teletubbies and learned about Ragdoll Productions, and the co-creators of the program, Anne Wood and Andy Davenport. He learned how the episodes were constructed. He learned about the actors involved with the programs. And then, he sought them out in other arenas - learning about their other projects, expanding the realm of his interest, and becoming a bit of an Anglophile in the process.

Bud's interest now is in what happens behind the scenes of his favorite programs. His heroes are the voice actors who give life to the animated characters he sees on the screen. He's practicing his own skills as a voice actor, and he does a great X the Owl and an even better Tigger. He can mimic dialects with the best of them.

Bud borrows DVDs from the library to create PowerPoints that catalog them in a variety of ways - the scenes, the actors, the artists, the composers. Right now, he's delving into the works of Julie Andrews and the Sherman Brothers - both sparked by his new-found love of Disney's Mary Poppins (the stage production of which we'll be seeing later this year).

Bud may be the only sixteen-year-old I've ever met who never utters the words, "I'm bored." There is always more he wants to investigate. More he wants to dissect. More he wants to compile.

But Bud's sideways growth has not only been in the areas of British children's programming and the voice actors in classic Disney movies. He is also expanding his social repertoire. Last Saturday, during a visit to the local library, he bonded with our librarian Bill over a conversation about Sterling Holloway, Bud's favorite voice actor, who provided the voice of Kaa in the Jungle Book, Mister Stork in Dumbo, the Cheshire Cat in Alice in Wonderland, and the beloved Winnie the Pooh. Bill told Bud about his son, who is currently enrolled in a degree program in animation and who hopes to work in the field.

And, of course, there is Bud's interaction with Lachy at the Wiggles show. In order to make that happen, Bud had to:
1. Set a goal, then
2. Read the hectic, multi-sensory environment to
3. Identify the exact "right" moment of opportunity, then
4. Communicate at the right moment using
5. The right words,
6. The right tone, and
7. The right body language.
He had to:
8. Initiate
9. Listen, and
10. Respond appropriately,
which meant he had to coordinate his
11. Speech and
12. Movement.
And then, he had to
13. End the interaction gracefully, and
14. Celebrate the achievement of his goal.

And he handled it like a pro.

That's the moment I want to capture and share with the family in the lobby who's wondering if it will ever be okay. Because I'm telling you: if you are inclined to think that Raffi at four to the Wiggles at sixteen does not represent progress, then you need to think again.

What Bud keeps teaching me, over and over, is that when he can use as a starting-point a context that is known and comfortable and familiar to him, it can propel him to life-changing growth. Sometimes his growth might be sideways, but inevitably, it ends up moving him - and moving us both - a long way forward.

Friday, September 11, 2015


Tonight at bedtime, Bud told me that in social studies today, he wrote about how he felt about the anniversary of September 11. I asked him if he knew what happened on September 11, and he answered with a portion of a script from Mister Rogers. Then he told me that is was a sad day and that people were scared and people were hurt.

I told him he was right.

I told him that he was very little on September 11. He wasn't even two years old.

I told him that when the sad things were happening on September 11, he and I were at Kindermusik. I told him that it was a class we took with other moms and kids.

"It was Kindermusik with a k," he said.

"That's right, it was," I said, a bit surprised.

"My teacher's name was Meredith," he said. "What was her last name?"

I told him.

"And we were at Mrs. H's church," he said.

"That's right," I said. "That's where the Kindermusik class was."

"We were singing and dancing," he said.

"Yes," I said. "We were."

Does Bud remember Kindermusik independent of September 11, or is the class etched into his mind because it is connected to that event for him, as it is for me? Though he was too young to understand what was happening that day, could he tell from the rest of us that it was a day we would remember forever? I have no idea.

All I know is that we all remember where we were that day.

Even Bud.

Sunday, September 06, 2015


I had a dream last night.

It was late morning and I was at home (or, I knew it was my home, but it wasn’t my actual home) and there were lots of people there and I realized there was a Big Family Thing going on and there were lots of Big Family Expectations that I was going to need to fulfill, when I suddenly remembered that I had plans to go out that evening with Cathy, my bff from high school, and that I had different plans to meet Karen, my bff from college, for dinner in a location about an hour away.

In the dream, lots of Big Family Things were happening all around me, and I kept thinking that I really needed to shower and change out of my pajamas, so that I could focus and figure out a game plan for the rest of the day, because I really wanted to see Cathy and I really wanted to see Karen, and I knew I couldn’t do both, but, realistically, I probably couldn’t do either, because despite the fact that I had no idea what Big Family Thing was happening, the chances were good that I shouldn’t be ducking out when a Big Family Thing was happening – and, honestly, whether I was meeting Karen, going out with Cathy, or participating in a Big Family Thing, I had a hunch it was all going to go more smoothly if I could just take a shower and change out of my pajamas.

Suddenly, I realized that it was 3:00, and I was supposed to meet Karen at 4:00 at a mall about an hour away, and I knew that I should text her right then and tell her not to leave her house, because I had not showered and I was still in my pajamas and I would not be there in an hour in the best of circumstances, and even if I jumped in the car right then, I would still have to deal with the issue of having simultaneous plans to go out with Cathy, in addition to whatever events had been planned for the Big Family Thing that was going on, but instead of texting Karen to say “I can’t make it,” I texted instead: “I might be a little late."

More things happened, in the whirlwindy way that dream things do, and I realized that it was 4:00 and that Karen, who is always early, had probably been at the mall for at least 20 minutes, and I had still not found my way into the shower or out of my pajamas, and I realized that at the very least, I should call Cathy and let her know that I would definitely not be able to go out with her, because I had Big Family Thing commitments, which surely she would understand, since she, too, is of the Big Family Thing ilk, but I didn’t get to call her because more Big Family Things were going on, and then I discovered that the shower was free and this was my opportunity to use it, but I glanced out the window on my way to the bathroom and saw that there was a car trying to get into the driveway, that was being blocked by a car that was already in the driveway, and I went out to discover that the blocking car was my friend Cathy and her two sisters, who were there to pick me up, and that the blocked car was Karen, who decided to leave the mall an hour away to drive down to find out what was going on, and when I, unwashed and pajama-clad, climbed into her passenger’s seat to try to explain, I discovered that my always calm, totally rational, supremely supportive bff from college was really angry with me for failing to communicate and leaving her hanging, despite the fact that she had put a lot of time and energy into planning a really, really cool evening for me.

And then Bud woke me up and I realized that it was a dream.

And then I remembered that it's just that time of year.

Wednesday, August 19, 2015

Inside Out

Bud and I haven't been to a movie theater in years.  When he was younger, we tried seeing movies a number of times, but we had mixed success. Movie theaters can be sensory nightmares - surround sound that's too loud, audience members sitting too close, aisles too dark, a screen too bright. There were times we left during the previews, and times we left in the middle of the show. There were often tears.  So, after a while, it seemed ridiculous to continue to make tearful efforts in the name of entertainment, and we stopped trying to see movies.

But Bud is a lot older now. He's much better able to advocate for himself and tell me what he needs. A good friend had recommended the movie Inside Out, and I really wanted to see it. I thought that maybe the time was right to try again, and, I reasoned, even if the attempt ended in tears, maybe a movie about emotions would give us a new framework through which we could discuss the way we were feeling about the experience. So I pitched the idea.

Bud thought about it, but didn't respond. I took that as a good sign. Usually, the suggestion that we watch a full-length movie is met with, "I don't think so, Mom."

I suggested he watch the trailer, and he did. Twice.

I told him we could get popcorn.

He watched the trailer again. And then he agreed - not even reluctantly.

We went to the show in the early afternoon and from the time we left the house to the time we entered the theater, I waited for his hesitation, his second thoughts, his panic - but they didn't come.

Bud and I shared a bucket of popcorn and he munched happily through the previews and through what turned out to be a very lengthy animated short.

Then the movie started. Then the popcorn was gone, and I wondered if that would be that.  But it wasn't. Bud was engaged. He said "awww" when the baby was born, and he laughed out loud at the funny parts.

A couple of times, during some slower segments, he asked me if the movie was almost over, and I told him it was. And then, suddenly, the screen got darker and the music got lower and I could tell that the obligatory Disney "scary part" was coming.

I leaned over and whispered, "Bud, I have to go to the bathroom. Will you come with me?"

He whispered back, "No, I'll stay here and wait for you."

I waited a few more minutes until things on the screen got a bit more ominous, then I leaned over and whispered again, "Why don't you come to the bathroom with me, and then we'll stop at the snack bar on the way back?"

"Please, Mom," he whispered back, impatiently, "I'm trying to watch the movie."

And soon enough, the scary part was over, and I decided that the bathroom could wait.

It was a beautiful movie.  It was about emotions - their complexity, their interplay, and their importance. But it was about so much more than that. It was about growing up and dealing with change and letting go and hanging on. It was about childhood and parenthood and empathy and love.

With themes like that, so universal, and yet so deeply personal, with ideas and images that hit so close to the heart, it was no surprise that there were tears before this movie ended as well.  But this time, the tears played out differently.

This time, the tears were met with this:

"Mom, are you - are you crying, Mom?"

And then this:

"Aw, Mom, it's okay. Don't worry. It's only a movie."

And then this:

"Mom, don't you think you should blow your nose?"

And then this:

"Why are you crying and laughing at the same time?"

It really was a beautiful movie.

Tears and all.

Monday, August 17, 2015

The ghost of iPhone past

Last week, my iPhone fell victim to the blue screen of death. I'll be honest - I didn't even know that could happen. I thought the blue screen of death was a Microsoft phenomenon. But, no - there was my Apple product, glowing a serene, peaceful blue, but doing nothing else.

After a couple of hours of Googling and trouble-shooting, I restored the phone to its original factory settings. My photos were backed up, thank goodness, but everything else was gone. Or almost everything.

I opened my contact list and was startled to find that it wasn't empty. My current contact list had been replaced by the contact list I had when I upgraded to my very first iPhone, and it was a startling reminder of how much my life has changed since then. I felt like a modern-day Ebeneezer Scrooge, visited by the Ghost of iPhone Past. My husband Brian was missing from my contact list, and there, in his virtual place, was Somebody That I Used To Know. It triggered an avalanche of images in my mind - images of what was, what is, and what might have been. And, like Scrooge, I emerged from it grateful for where I am right now.

A few days later, my friend Alysia posted to Facebook a question posed by her son Howie: Would you rather go back in time one time or go into the future one time? You could come back to the present time, but you couldn't time travel again.

Strangely, my contact list sprang to mind.

When the past was the present, when my old contact list was not old, I was happy - happy with my contact list, and happy with my life. But I know things now, here in 2015, that I didn't know then, and those things make me view that time differently. They cast a different light on the actions I took and the choices I made. They make that time seem less happy, or they make my happiness seem foolish. They make me judge myself unfairly, and too harshly.

Because here's the thing - as I go through life, I try to do the best I can with the information I have at the time. In many cases, I get new information later - information that suggests that I should have made my decisions differently. But it's simply not fair for the information-rich current-me to judge the informationless past-me for not using the information I didn't have.

And here's another thing about the past. We have all shaped our memories in particular ways for particular reasons. Perhaps sometimes our memories are inaccurate and self-serving, but they are ours, and they play an important role for us as we move forward. If we were to travel back to the past to view or experience that time with our right-now knowledge, we would see that time differently and, I fear, our dearest memories might suddenly seem less dear.

There were some sweet responses to Alysia's post. One person said she'd like to visit the past so she could go fishing with her grandpa one more time. And that is incredibly sweet. But I still wouldn't do it. Because 40-something me would see Grandpa differently - would understand him differently - than 7-year-old me did, and 7-year-old me's perspective matters. It's whole and it's real and it's meaningful, and it's an important part of who I am now.

I wouldn't want to visit the future either.  If, some years ago in my pre-iPhone existence, I had been given a glimpse of my current contact list, I think I would have panicked because of who was missing from it. And despite being told that it all worked out, that I found Brian and Buster, and that different turned out to be fabulous, I think that past-me would have spent those intervening years distracted with worry about how it would all play out. And, in in my distraction, I probably would have missed a lot of the good stuff.

We're all in the midst of an unfolding narrative, and it has to unfold in its own time. I'm glad that no one told me in my youth what would happen in my life up to now. I don't think that back then I could have appreciated that loss and grief would make me more kind, that making poor choices would help me learn to make better ones, or that a diagnosis that seemed terrifying at first would later reveal itself to hold a million different gifts.  I'm afraid I would have lived my life with a sense of fear, or dread, or foreboding. Instead, having let the narrative unfold, and having taken the time to process it as it did, I can appreciate the richness of my experience and the joy of the space I'm in now. (I don't peek ahead at the endings of books either. I just don't want to know until I'm ready to know.)

So, my reply to Alysia, which probably seemed off-the-cuff but was actually the result of considerable phone-inspired pondering, was this: "I'll stay right where I am - blissfully ignorant of the future and happily ensconced in my revisionist history of the past."

But I've learned an important lesson from my recent brush with the past. In the future, I will back up my iPhone.

Monday, August 10, 2015

Phone a friend

When I started blogging, I was hoping to meet other parents of kids with autism. I did, of course, and they have been a great resource. What I didn't know when I started out, though, was that I would also meet a lot of people with autism, and that their insight would be equally valuable to me.

One of the autistic friends I've made through blogging is Chloe Rothschild, a young adult who is a writer, speaker, and autism advocate. Like Bud, Chloe is part of a blended family. Through her experience, she has learned to navigate life with younger step-siblings, so it was natural that as we were chatting last year, shortly after Bud and I were sharing a home with Brian and Buster, the topic would come up.

Chloe asked me how Bud and Buster were doing together. I told her that the dynamics between them could be challenging at times, because preschoolers are notoriously good button-pushers, and our resident teenager has some very easily-pushed buttons. And sometimes, when his buttons were pushed, his response was not entirely kind.

Chloe said that she'd experienced similar things, and said she thought it was important to make sure that Bud had his own space so he could retreat when he needed to. I told her that he often spent time alone in his room, but I worried that he felt like he was being pushed out by this new little person in our life.

"Schedule Mom and Bud time, too," she said. "That's crucial."

And then she asked, "Does Bud have a phone? Does he text? Could he text?"

The question intrigued me. He didn't have a phone, I told her, but yes, he could definitely text.

Chloe explained to me that a cell phone could be a valuable tool for Bud. She said he could text me from another room if he was upset, or if there was something he wanted to say that he knew might be interpreted as rude. She said he could also use it to ask to speak to me alone when he needed to.

I thought a lot about Chloe's suggestion in the weeks that followed, and a short time later, Bud got his first cell phone. He took to texting immediately, and Chloe was absolutely right - it gave him a new channel of communication and a way to express himself without having the pressure of trying to say things out loud in front of an audience. To my great relief, it also helped me to understand that when Bud retreated to his room on a weekend afternoon, he was doing so happily. He liked having space and the ability to do his own thing, and did not feel at all bad that Brian, Buster and I were playing a game or watching a movie without him.

By great coincidence, as I was writing this post, I checked Facebook and saw that Chloe had linked to a piece she'd just written for The Mighty called Four Things I'd Like My Future Step-Siblings to Know About My Autism. I hope you'll click through and read it. I'll be bookmarking it for future reference. I suspect there may come a time when Bud might like to share it with Buster.

Friday, August 07, 2015

A beautiful day in the neighborhood

In the weeks leading up to our wedding, many people asked us if the boys would be playing a role in the ceremony. We'd decided early on, though, that we didn't want them to feel any kind of pressure - no spotlights, no expectations. This would be a day for Brian and me to make commitments: to each other, to our boys, and to our new family. Bud and Buster didn't need to do anything except know that they were wholly and unconditionally loved.

I didn't want Bud to feel like he was being excluded from the ceremony, though, so I let him know that when the day arrived, he could do or not do anything he wanted. We'd planned a very casual ceremony and reception, so there was plenty of room for improvisation. I told him he could say something, read something, sing something, watch quietly, swim in the pool, or spend the time on his laptop making PowerPoints. There were really no wrong answers.

Bud listened to his options, but didn't offer many thoughts as to what he'd like to do at the wedding, except for one: he wanted to wear a tuxedo. I explained to him that it wasn't really that kind of wedding, that Brian and I would not be wearing fancy clothes, and that it might be a hot day and a tuxedo might not be very comfortable in the backyard.

Despite that, he was insistent - he wanted to wear a tuxedo.  We compromised on a short sleeve dress shirt with a tuxedo vest and bow tie. He added a top hat to complete the ensemble. But that was all the prep he seemed interested in doing, so I didn't push it and I waited to see how things would unfold.

The day before the wedding, we were at Nana's house doing all the day-before-the-wedding things that needed to be done, and suddenly, Bud decided what he really, REALLY wanted for the wedding:

He wanted Yo-Yo Ma and Joshua Redman to perform.

You know them, right?  Yo-Yo Ma, world-renowned cellist and Joshua Redman, jazz saxophonist and composer? Yes. That was all Bud wanted to make the day perfect: just one little appearance from these two big stars.

I explained that this was something we really couldn't pull off - that Yo-Yo Ma and Joshua Redman were very famous musicians with very busy schedules, and since we didn't actually know them, they would not be available to come to our wedding.

We spent the rest of the day talking about Yo-Yo Ma and Joshua Redman. Bud seemed sure that there must be a way to make it happen. They had both appeared on Arthur, after all. Why not our wedding?

As nighttime neared and Bud's determination seemed unlikely to wane, I reminded Bud that Yo-Yo Ma and Joshua Redman appeared on Arthur as animated characters, which meant that their appearance was really pretend. I also reminded him that we could pretend, too, and that in our imaginations, anyone could come to the wedding - Yo-Yo Ma, Joshua Redman, ANYONE.

Bud was delighted. ANYONE?

He immediately set about making a guest list. As it turned out, the people who would be coming to our wedding were all people who had also appeared as animated characters on Arthur. People like:
Michelle Kwan
Mister Rogers
Alex Trebek
Marc Brown
Jeremy O'Neill
Art Garfunkel

And, of course, Yo-Yo Ma and Joshua Redman.

Bud spent a lot of time talking about the guest list and making guest-list-related PowerPoint slides.

Of all the guests on his list, though, it was Mister Rogers who really captured his imagination - because in our imagination, in our world of pretend, Mister Rogers could come to our wedding, even though we knew that in real life, Mister Rogers had died.

Bud and I have spent a lot of time over the past year talking about Mister Rogers' death. In early 2014, we lost my father, Bud's Papa and best friend in the world, who passed away after a difficult struggle with Alzheimer's.  We've spent a lot of time talking about Papa too, of course, but I think it has been easier for Bud to process his loss from one step removed, by talking about the loss of Mister Rogers. And certainly, as we gathered for our wedding with the same people and in the same location where we'd gathered to grieve my father's death, it was understandable that Papa was as present to Bud as he was to the rest of us, and that the related emotion was almost too much for him to bear.

Enter Mister Rogers.

As Bud worked on his guest list, he suggested that we might hold the wedding "in loving memory of Fred Rogers." I told him I thought that was a wonderful idea. He went to bed with his guest list complete, excited for the day ahead.

The next day, a few hours before our guests started to arrive, Bud told me that he'd like to make a speech at the wedding. I told him he could absolutely make a speech and started asking questions to try to find out what he had in mind. Bud's answers were definitive; he had a clear vision of how he wanted this to play.

Yes, he wanted to give a speech at the ceremony. No, not the reception.

Yes, he wanted to use the microphone.

Yes, he wanted his speech to start the ceremony.

Yes, he'd like to write it out ahead of time so he could read from a paper.

In fact, he said, he knew exactly which speech he'd like to give. He wanted to give Mister Rogers' acceptance speech from the ceremony at which he received a Lifetime Achievement Emmy Award.

Bud got right to work. He pulled up the acceptance speech footage on YouTube, donned his headphones, and started transcribing. Once he had the speech typed up, we emailed it to our friends across the street so they could print it for us. We tucked it into a lucite frame, so it would have some stability in the breeze, and we were good to go.

Before we headed across the street for the ceremony, I did a final check with Bud to make sure he had everything he needed. His tuxedo vest, bow tie, and top hat were on straight and his framed speech was tucked under his arm. He stopped as we were about to head out the door.

"Mom?" he asked, "Can I take Papa's cane with me?"

My heart nearly melted on the spot.

"Of course you can, Bud," I said. "Papa would love that."

He ran back to the closet where Papa's cane had been hanging for more than a year, and hooked it over his arm.  NOW we were ready.

We made our way across the street, where our friends were gathering. Brian had already gone over and was busy greeting people, and before we knew it, the yard was full and it was time to begin.

Brian and I stepped forward, and our friend, who was performing the ceremony, introduced Bud.

Bud walked up to the microphone.

"Oh," he said, "it's a beautiful night in THIS neighborhood!"

And then he started his speech.
So many people have helped me come to this night.
Some of you are here. Some are far away.
Some are even in heaven.
All of us have special ones who have loved us into being.
Would you just take along with me ten seconds to think of the people who have helped you become who you are? Those who have cared about you and wanted what was best for you and your life.
Ten seconds of silence.
I'll watch the time.
Bud paused and looked intently at his wrist, where a watch would be if he were wearing a watch, and we all waited in silence for what Brian tells me was a remarkably accurate ten seconds.  Then Bud lifted his head and continued.
Whoever you have been thinking about, how pleased they must be to know the difference you feel that they've made.
You know, they're the kind of people television does well to offer our world.
Special thanks to my family and friends and to my coworkers in public broadcasting, Family Communications, and this academy, for encouraging me and allowing me all these years to be your neighbor.
May God be with you.
Bud stopped speaking and stepped away from the microphone. The moment took my breath away, and as I wiped the tears from my eyes, I saw my soon-to-be-husband and our family and friends gathered in a semi-circle around us, smiling and crying and totally getting it.

It was a beautiful day in the neighborhood. Even better than a performance by Yo-Yo Ma and Joshua Redman.

And my father, Bud's Papa. How pleased he must have been to know the difference that he made.

Monday, August 03, 2015

For Jess, 'cause she's awesome

I recently found myself in a conversation about the ethics of restricting toys, books, tv shows, and other things from autistic kids (or, really, any kids) (or, really, any people) because they are not "age appropriate."

In the heat of the conversational moment, the well-reasoned, articulate thoughts on the subject that live somewhere in the recesses of my mind had a hard time turning themselves into actual spoken words. I found it was better to end the conversation before it turned into an expletive-laden diatribe THAT COULD ONLY BE CAPTURED IF I SAID IT IN ALL CAPS.

As my cooler head prevailed, I did what I often do when words escape me, and I looked to see if the wise and articulate Jess Wilson from Diary of a Mom had already said everything I wanted to say. After surfing her blog for a while, I couldn't find what I was looking for, so I messaged her and pleaded with her asked her if she had something in the archives that I'd missed.

She didn't, she said, but she'd see if she could put something together.

And, in less than a week, she produced a thoughtful, articulate post, entirely expletive-and-diatribe-free.

Please click here to read it.

Thanks, Jess. I owe you one.

Sunday, August 02, 2015

Our Wedding Neighborhood Festival

Yesterday, as Bud and I were out for a walk together, I asked him if it would be okay for me to write a blog post that told the story of his involvement at our wedding. He quickly said that it would. I reminded him that it would be published on the internet, and that lots of people who don't really know us would read it. He said that sounded great.

Since then, he has asked me many times if my blog is done.

The truth is, it has been a busy weekend and I haven't even started.

But Bud is really excited to share this with you, so I'm hoping that this preview will be enough for him (and for you) for now. The full story will follow sometime later this week.

For now, I give you three pages from a PowerPoint Bud created, which is titled "Our Wedding Neighborhood Festival":

To be continued.