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.