The rain pounded against the roof of the restaurant. “I’ll get the car,” my dad said, as we stood under an awning ready to leave. I did my best to shelter Max and keep him dry. Max loves to get wet in a pool, or in the shower, but one drop haphazardly landing on his clothes can throw him into a panic. My dad popped open an umbrella, and darted across the shiny street into the night.

While we waited for the car we stood beside an outdoor bar that took full advantage of the warm Florida climate. I looked inside and saw that it was desolate. There were only a few people sitting on barstools, and most of the tables were empty. It sounded like live music, so I studied the bar out of curiosity. The musician was actually just a few feet away from us. His back was to us and he was hunched over his guitar, his arms moving quickly to the song’s beat. And he was good. But when he finished, no one responded. There wasn’t a sound.

I’ve seen a lot of restaurant musicians lately. When I took Max to a new restaurant recently, I noticed the singer only because I was concerned that the live music might upset Max. She was belting out tunes as if she were on Broadway, but no one even rested a fork to acknowledge her presence. Last summer, when my dad and I stopped for a quick meal on the way to a radio program, a silk-clad singer approached our table and immediately emptied her lungs. Her voice was lovely, but her timing was not. My dad and I needed to talk, and we couldn’t. Neither could anyone else in the restaurant. When she finished her song, a little chirp of applause came from scattered points around the room, like crickets.

Here we were again with another musician giving his very best, and yet there was not a spec of feedback from anyone in this outdoor Floridian bar. I held onto Max and studied this musician from the back. How does he feel when he goes home at night? I wondered. Does he love playing music enough to live without acknowledgment for his work? Will he tell his wife that it was a good night’s work, or will he roll his eyes like a 13 year-old girl?

Sometimes I feel like that restaurant musician. All of us wrestle with this at some point in our lives. We work hard. We exercise discipline. We make sacrifices. And then we don’t get any feedback. We begin to wonder…does it matter? Am I making a difference? Does anyone notice? I often see these ponderings sweep across the lives of those of us who parent special needs children. We’re tired, and often isolated; we could really use a cheering section sometimes. But even when there isn’t an audience in front of us, we have to keep playing the song God has written for our lives, and in our hearts. Because, as I would discover this night with Max, we don’t always see the impact our lives have on others.

A crowd of people had now gathered under the awning, all of us waiting for the rain to stop. We watched from behind as the musician began to play an old Cat Stevens song, the crisp notes hanging in the humid air before spilling across the emptiness of the bar in front of him. Quite suddenly, lightness came over Max body, and his arm slipped from my gentle grip. He shuffled into the middle of the crowd and stood just inches behind the musician. And then Max began to dance, as he does so easily. His arms were out to the side like a huge bird and he hopped on one foot to the beat of the music. The crowd immediately stepped away creating a perfect circle around him, giving Max more room, and them a better look. Max was luminous, floating in the milky light, while the smiles and laughter of the spectators willed him on.

The musician ended the song and began to play another without as much as a pause. I’m sure he assumed that, once again, no one had noticed. But the crowd behind him erupted. There were cheers and whoops and applause. Everyone under that awning was overcome by the music of the moment. The musician stopped playing and looked up from his guitar. I could see him searching the empty bar in front of him. Finally, he turned all the way around to find a cheering crowd behind him. And he smiled.

It’s a bit of a cliché. The three days in which I had to prepare a talk on the joys of life with Max, were the same three days in which Max decided to follow his genetic predisposition and become the kind of teenager I was – moody, irritable, and at risk of being sold to the nearest band of gypsies. We went to the beach…he lost his iPod. We went to a parade…he lost his wallet. We came home…I tried my best not to “lose it.”

Max was nervous, that’s all. I knew he was struggling with anxiety because I felt it too. In just a few days we would leave for Florida to stay in a hotel for several nights. Max had never done that! And he’d never eaten every meal in a hotel restaurant, or walked into a conference hall the size of a the Astro Dome. And if it didn’t work, there would be no turning back, no way out. But we had a wonderful opportunity in front of us. The Autism Society would be presenting Dancing with Max with an award, and had invited me to speak at their national conference. Imagine, hundreds of people who understand autism under one roof. And it would all happen at a fantastic resort at the epicenter of fun: Orlando. As much as I was nervous to the point of a three-day migraine, how could I leave Max at home?

We arrived at the hotel and Max immediately approved our room based on the Kohler toilet and breathtaking window view of the highway, two essential features of any fine resort. He liked it – we had our first victory. My niece came with us to help, and the three of us found the one restaurant that would allow us all to order from the kid’s menu. The waitress brought us water, and crayons, and told us that we were just in time for the band. My stomach dropped. I turned to my niece and looked at her as if the waitress had just announced that the restaurant would be lit on fire momentarily. But when the band began to play, Max didn’t bolt. Instead, he began to sing.

I let out a deep breath and soaked in the moment. After a week of packing and organizing and stress, we had finally arrived. And it was working. Even though I didn’t feel like I’d had enough time to properly prepare for my talk on faith and joy, the trip was already a success. I could feel my confidence level rising and tapped my niece on the arm. “After this,” I said cryptically. “Lets go to the…” and jabbed my finger toward the pool. Her face lit up.

With our bathing suits on, we took a walk around the grounds of the resort, which were more manicured than my fingernails ever thought of being. There was a golf course, a bocce ball court, even a croquet lawn. We studied our map and set out for the larger of the two pools.

As we approached the fence we could see hints of a tropical island paradise, crystal blue water with exotic tiles around the edges. I grabbed for the gate but hesitated as I read the sign, “Adults Only.” No problem, I thought. Max is 20. My niece is 18. And even though we all ate off the children’s menu, I certainly qualify as an adult. We peered over the gate and studied the pool for a moment. There were just a few heads peeking above the water line, still as statues, floating like coconuts. There wasn’t a ripple in the water. I could almost hear elevator music playing in the minds of the soakers.

“Maybe we should check the other pool,” my niece suggested.

“Right,” I nodded.

The other pool was not for “Adults Only.” The other pool did not have a volume control. The other pool was churning with children like a vat of piranha. Bingo! The three of us plunged into the water and began jumping and splashing.

My niece stopped for a moment and giggled. “Aunt Emily,” she whispered. “You…still have your glasses on.”

“I know,” I said, trying to make an excuse. “I didn’t have time to put in my contacts.” But I could see by subtle the look on her face that I had crossed over a non-negotiable line. My niece, who has recently been accepted into MIT, is qualified to identify a nerd when she sees one. And after all, I thought, I’m speaking here tomorrow. And I’m the only speaker without a long list of letters after my name. I looked around at all the other adults who were sitting in lounge chairs beside the pool. They were sipping cocktails, and dressed in sporty resort wear. Maybe I should think about my image, I realized. Perhaps I should appear a bit more sophisticated.

I slipped out of the pool and bravely set my glasses on my towel. Instantly, the air became soft and moist and colors danced around me in a filmy fog. I turned back toward the large blue area and walked forward to find Max and my niece. Max was easy to pick out, jumping and squealing with joy. I could hear the palm trees rustling around us with the wind.

“Mom,” Max yelled as I got into the pool. “Let’s go down the slide!” Even without my glasses I couldn’t miss the 20 foot-high vivid green octopus stationed along the edge of the pool. I turned to watch a few blurry children shoot out of the slide, become air born for a moment, and then plunge face first into the water. This didn’t exactly fit the sophisticated image I was going for. But I couldn’t resist Max’s enthusiasm. So the three of us climbed the steps of the over-sized sea creature and stood in line. A crowd of curious 8 year olds stared up at us, cutting in front of me as if I weren’t actually in line. My niece went down the slide first so that she could catch Max, and I got ready to follow Max. I sat at the top of that slide for a moment with the wind blowing against my wet skin. I could hear several 8 year-olds vying for their chance to be next in line. “I’m going after the lady,” I heard one child demand in a squeaky voice. And I started to laugh. This is what I came to talk about, I thought. This is the best preparation for my presentation. I gave myself a push, and flew helplessly down the side of that green octopus. There was no stopping mid-way. No changing my mind.

We must have gone down that slide together 30 times before Max realized that it was even funnier to watch me go down it alone, his mother landing in the water with a breath-holding splat. We stayed in the pool right up until dark, when the combination of no glasses and no light became a significant problem. And I was pretty sure I couldn’t depend on those eight year-olds to lead me around. I don’t know if anyone picked me out as a conference presenter, but it’s ok if they did. It’s the reason I came to the conference, and the reason Max and my niece came with me – to tell others about the kind of joy that redefines the journey.

And, if they were watching me, I’ll never know. I didn’t have my glasses on.

Dear friends at Willow Creek.

Thank you for your hospitality. I am overwhelmed. My dad and I had a wonderful time speaking at your church this weekend. Thank you for caring so much about our families with disabilities.

I loved meeting so many of you after the services. But I needed more time! I want to hear YOUR story. Would you share it with me here? If you have a story that might help others, I’d love to post it. And if you weren’t at Willow Creek today, we missed you.  I want to hear your story too.

“You turned my wailing into dancing;

you removed my sackcloth and clothed me with joy,

that my heart may sing to you and not be silent.

O Lord my God, I will give you thanks forever.”

Psalm 30:11-12

“My son has a job here,” I said in a much too loud voice, loving the sound of it. “So we have a family membership.” The girl behind the counter scanned my YMCA card. “My son got this for me, because he works here.” I almost couldn’t help repeating myself. I knew I sounded like one of those older women…the ones with the multi-colored tracksuits and cloth visors who constantly refer to their first-born as, “My son the doctor.”

Max has a job. That’s right. It’s part time, mind you. Very part time. And it’s through his school’s vocational program. But it’s a job! Two mornings a week he works for the YMCA helping to clean up the grounds. Sometimes he washes windows. Sometimes he vacuums.

After his first day on the job, Max came home and announced that he wanted to walk on a treadmill. Since our super-helper, Lena, spends every other hour at the gym, she jumped on the idea. And it was a grand success. Max spent 30 minutes in the “Wellness Center” learning how to use the exercise equipment.

So last night, though we didn’t have Lena with us, I thought I’d bring Max solo. I don’t exactly fall into the athletic category. Nor am I a sloth. I’m a walker. My idea of a good workout is three times around the neighborhood instead of two. I call that my triathlon. It’s a large neighborhood mind you. And while I walk I often talk on the phone. So I think that works my arms.

I remember belonging to an exercise club back in the…um…er…1980’s. Going to the gym back then was all about aerobics class. Jane Fonda was in her glory and spandex was in the prime of its life. Most of us were wearing it at some point during the day. I had the aerobics clothes – the pink spandex top, and something that looked like a bathing suit bottom, which you wore over black tights. I remember spending an hour in the dressing room choosing that outfit. I’m sure I struck a few Olivia Newton John poses as I studied myself in the mirror. But when it came time to go to the gym, I was smart enough to leave those clothes in the drawer, and opt for a tee shirt and old baggy sweat pants.

I believe I still have those sweat pants. Because I believe I wore them to the “Y” last night with Max.

Max and I spent the first 20 minutes, side by side, each of us on an elliptical trainer. Max was listening to his iPod, bouncing up and down with each step. He even proved that he could work the machine standing on one leg with the other pulled up like a flamingo. He’s in great shape. All that jumping and dancing, which has collapsed our living room floor, has given him endurance. And style. After our workout, Max dutifully wiped down our machines, and we moved to the treadmills.

This area of the “Wellness Center” intrigues me. There must be 50 treadmills lined up like cars in a parking lot, each occupied with a walker or runner. Windows surround us, showing the beautiful wooded grounds. But we stay inside, in this little glass bubble, as if there weren’t enough oxygen to sustain us in the outer elements. It feels a bit like the nose of a space ship, with all passengers mandated to strength training duty in preparation of alien attack.

No one speaks on these treadmills. No one interacts or even makes eye contact. Not exactly the social opportunity I had hoped for. People face forward, and typically wear headphones attached to an iPod or TV. Actually, the social standard appears to be in line with the characteristics of autism. Max wore his headphones, but oddly enough, he didn’t fit the social expectations. He was too excited, walking on the treadmill at a brisk pace, his lips moving as fast as his feet.

It was 6pm. The YMCA was packed to capacity. Every machine was now occupied. Max kept smiling at me, yelling with excitement in an outdoor-voice. I did my best to smile at the women on either side of us. One was my age, the other a bit younger. Both were wearing spandex. I was not. Neither would acknowledge our obvious presence. I didn’t know people that thin could walk without assistance.

Suddenly, Max stopped his treadmill. I jumped to the side and hit the stop button on my machine. “Are you done, Max?” I asked. “Are you ready to move to the bike?” But he didn’t answer. He looked up at the ceiling, cupped his hands over his headphones, and started to sing. And then, right there on that motionless treadmill, he started to dance. It’s the kind of dance that Max is known for, the kind of dance that happens when the music becomes a part of you, when joy fills the room like confetti. His knees were bouncing and arms flinging. Instead of facing the glass windows, he spun around a few times to face the people behind him.

I held the sides of my treadmill, and bent over in laughter. When I picked my head up and looked around, everyone behind us had caught Max’s joy. Eyes were squinting, smiles were wide, their faces red and sweaty. Even the two exercise queens beside us couldn’t hold back. I might not be athletic, but I’d like to see endorphins do that.

After his 30 second dance, Max started up his treadmill, and resumed his walk.

Yes, my son has a job here.

We are now scheduled to speak at Willow Creek on June 11 & 12.

I hope you can make it! It’s going to be a great time!

Let me tell you what I most love about sharing these Picture Talks. They help us understand how much of the world someone with autism takes in, even if they don’t have the language skills to tell you. All experiences are imported like a computer, scanned and perfectly preserved. But once that information arrives in the mind, portions get twisted and turned and routed to the wrong file folder. Experiences that should be stored under “Inconvenient,” get filed in the emergency category. I’m sure there have been times when Max, unable to communicate the urgency of his situation, wondered why the rest of us were acting so callously. And we wondered about his behavior.

It happened when Max was 10. Max had been agitated for months, crying hysterically before each visit with his dad. Sometimes his tears would begin a week before a visit. My initial response was to provide comfort. But after a few hours of anguished cries, comfort turned to questions – “Did something bad happen at dad’s house?” “Was someone mean to you?” “Tell me what happened, Max?” I would demand.

Max tried to give me the answer. On several occasions he pulled me outside to the driveway and asked me to say, “Oh Bulls Eye,” and, “I’ll see you in a couple of days.” I’d cooperate, and stand there scratching my brain.

The crying started at Christmas and went on for 7 months. I brought in specialists. Nothing helped.

Finally one afternoon as we stood in the front yard, Max said, “I need pictures of the pizza crust.” I didn’t know what he was talking about. I certainly didn’t think it had anything to do with his struggle to visit his dad. But my son is a very smart boy. I grabbed paper and a pen and we sat on the couch together.

Max began telling me about riding in the car with his dad, to our house, to pick up pizza crust. As I was writing and drawing pictures of everything Max was saying, I suddenly got it. I knew what he was talking about! I remembered too.

Max is on a special diet so he brings all his own food on visits with his dad. But on this occasion, I didn’t have all of his food ready. So Max and his dad came back in the middle of their Christmas visit to pick up the pizza crusts. When they drove in the driveway I could see Max sobbing and screaming in the back seat. I opened his car door and tried to give him a hug, but it only upset him more. So I pointed to his new toy, “Bulls Eye.” I reassured him that I’d see him in a couple of days. And then the two of them drove back to his father’s house. I didn’t think much about it, except that I couldn’t understand why Max was crying so hard – he always lit up when he saw me.

Now, here we were 7 months later sitting on the couch as Max dictated his memory and I recorded it on paper. When we finished our Picture Talk, Max grabbed the page and studied it as if he’d just uncovered the Dead Sea Scrolls. He was smiling. His eyes were wide and darting across the page. “It’s the pizza crust! It’s the pizza crust!” he kept repeating. “Max,” I asked cautiously. “Is this why you’ve been upset about going to dad’s house?” “Yes,” he gasped.

Max’s dad came a few days later to pick up Max for a visit. Max held this Picture Talk in his hand and waved it to his dad. Max ran with full throttle excitement and jumped into his car. No tears. Not even a whimper. Max showed the Picture Talk to his father as if to say, “Look! This has been in my emergency folder!”

In our 11 years and 1,400 Picture Talks, this one is my favorite. Max dictated this to me when he was 14 years old. While Max’s early picture Talks centered around his constant and consuming fears, his later Picture Talks show growth, a shift of focus, and yes, the passing of puberty.

Max likes girls.

If all Max wants is to have a date on paper, with me as both artist and moral compass, it’s a mother’s dream.

In this Picture Talk Max asked me to draw the “Toxic Girls” waiting for him as he came home from school. The Toxic Girls are the back up singers for Brittney Spears; seems like an appropriate name to me. Their first fun-filled activity is to watch King Max as he sits in his Audi seat in the middle of our living room. Then the Toxic Girls fetch another girl for Max’s ponytail harem – Sharon, who’s also a singer. Apparently Max began to wonder if he could handle so much estrogen on his own, and asks me to draw Sharon calling for reinforcements – mom. Good boy Max. But before he had me show up, the date took an interesting twist.

Like many teenage boys, Max struggles with awkward social situations.

How do you end such a perfect fantasy date?

a) Kiss the girl, or in this case, girls.

b) Shake hands.

c) Walk her to the door.

d) Ask her to fall in a manhole.

If you answered d, fall in a manhole, and you are a female singer with a blond ponytail, you are invited to our house.

But I’ll draw myself in as a chaperone.

Our visit to Willow Creek Church in Chicago has been changed! My dad and I will now be speaking there on the weekend of June 11 & 12. My appologies – we have a family emergency. But the great news is that Willow Creek Church is very excited to focus the entire weekend on loving and serving those with disabilities.

Please mark your calendars, spread the word, and share your thoughts here!

Our message is titled, “Unexpected Joy; Lessons in Love from a Special Needs Child.

If you love someone with special needs, or if you have special needs, I know you have something to say. And I want to listen. I treasure your input. I hope I will represent you well. You can send me a message here. And please let me know if your message is private, or if I can post it on this site.

So…what do you want people to know about your experience?

Is there a special story that stands out in your mind?

If you had just one thing you’d like people to know, it would be…

Ok, your turn.

This is one of our very early Picture Talks, from 2001. Max was 10 years old at the time. Oh, and did I mention, adorable. But anxiety ruled his, and therefore our, life.

Max and I had gone to one of our favorite discount stores. It was a risk – Max didn’t handle stores well back then. But this wasn’t exactly Tiffany’s. And to me, finding a good bargain is a much of a rush as a good coffee. As we entered the store we could see piles of potential bargains, some with smoke damage, water damage or missing essential parts. It looked a bit like one of the TV shows about hoarders. But the hunt is part of the sport. You go with an open mind, look through everything. Sometimes you don’t know how desperately you need something until you find it.

A pile caught Max’s eye, and he dashed for it. It was a heap of stuffed bunnies, all wearing lavender ballerina costumes. Max was comfortable enough with his boyhood masculinity to lunge for one, pull it close, and give it a hug. He face lit up. Then he noticed a sticker on one paw. “Push here,” it read. Max pushed the button. Out came a much too loud version of “Here comes Peter Cottontail.” It even hurt my ears.

Had this been any other store, we would have been asked to leave, asked to pay, or met our first police man. But no one seemed to notice what happened next. Max heard the music and went into a panic. He took that bunny by the ears and whacked it against a table until the batteries shot across the floor. The music stopped. Knowing Max’s pattern, I was pretty sure I knew what was next. When something scared Max, hurt or upset him, he would repeat it. I think he was trying to make sense of it. I even saw this behavior when Max was a toddler – when he’d fall down on the floor and scrape his knee, I’d brush him off and give him a kiss. But as soon as I’d set him back on the floor, he’d throw himself down in the very same spot. He wouldn’t stop until I picked him up and removed him from the setting. Looking at the large heap of bunnies in front of, I panicked. I felt badly about Max knocking the stuffing out of that bunny, but I felt worse about the idea that Max might give the Bunny Extinction Treatment to every Floppsy and Moppsy in the place.

With divine intervention, we left the bunnies and walked out of the store.

When we arrived home, we sat together and had a Picture Talk. We’d been using this strategy for a few months, but I hadn’t yet realized how powerful our Picture Talks were. I asked Max questions, and he helped describe the event, from his perspective. I wrote down and drew everything he said, and added a few things to help connect the dots. I minimized Max’s behavior in the drawings, so as not to reinforce the negative. When we finished, I let Max review it a few times, and then I tried to take it away. I wanted to put it with our other Picture Talks, out of Max’s reach. Until this point, I’d only let Max see our Picture Talks under my supervision so that we could review them together. But Max wouldn’t let this one go. Even thought it frightened him, he wanted to keep it.

For a month, several times a day, Max studied this Picture Talk. He was so afraid of that bunny, waking at night telling me that he would never go back to that bargain store. Whenever his fear would peak, he’d grab his Picture Talk and study it. I was pretty sure I was headed for the Bad Parenting Hall of Fame, allowing my son to visually review such a disastrous moment. Was this reinforcing his behavior, intensifying his fear?

After a few weeks of studying, Max began to point to the bunny in the Picture Talk, and say, “That’s my bunny.” And then, just one month after that hare-raising moment in the discount store, Max brought the Picture Talk to me, and said, “I want to go to the store and buy my bunny.”

Now, I’ll tell you that I was pretty sure my son had cooked up a scheme to destroy the entire store, rid the world of singing bunnies and anyone who fraternizes with them. But…I was curious. So, we returned to the store, which was now completely restocked with new piles of “bargains.” We searched. We scavenged. There wasn’t a bunny in sight. Finally, 30 minutes – two dandy potholders – and a purple can-opener later, we found a bunny. Max clutched it to his chest, his face euphoric. He pulled the bunny away, studied the paw, and said, “Don’t push it mom.” Well, you can bet I wasn’t about to do that. But I now understand that Max had been practicing, processing, rehearsing this moment on paper through his Picture Talk. My son had come back to this store for one reason – he had faced down his fear and this was his final exam. He visibly braced himself, turned slightly away and squinted as if he were squeezing a lemon. And then he pushed that button. Well, praise God; the music didn’t work. Max darted breathlessly to the cash register and we bought that bunny.

For the next two months, Max carried his “Dancing Bunny” like a trophy, a badge of courage, and a stunning glimpse of the power of a Picture Talk. I let Max keep them from that moment on. And I didn’t have to feel badly about our earlier trip to the bargain store– I’m pretty sure we bought the same bunny we broke.

Oh, what Max told me here! You have to know the story behind this Picture Talk. I learned something very important about Max. This is one of our very early Picture Talks. Max was just 10 years old.

If you’ve read dancing with Max, you will laugh when I tell you that at age 10, Max developed a debilitating fear of commercial refrigerators. Really. This young Man who now knows every model and make, who has “faced” refrigerators in every county from Cape Cod to New Hampshire (no one can make a refrigerator look as neat and tidy as Max), and who has become a near legend in our local convenience stores, was once afraid of these chilling beasts.

By the time Max was 10 years old, he was so fearful that I couldn’t even coax him into a store that had refrigerators, even if they were all the way in the back of the store. Unfortunately, this was pre-drive-thru era in Massachusetts. And I couldn’t just leave Max in the car while I did my errands. If he did come in, it was usually, well…memorable. Some of you know how hard it is to get the most basic things done.

As I’d tuck Max into bed at night, I’d often grab paper and pen and ask Max what he wanted to talk about. And on this night, he wanted to talk about CVS. And refrigerators!

He told me about a time when he heard the refrigerators in CVS – they sounded like Christmas bells. In the next image, I explained that the bottles were simply jiggling. Maybe he needed that information, maybe he didn’t. But the most startling thing is what he had me draw next.

Max asked me to draw a picture of him walking in front of the refrigerators. Max would never have done that in real life! Never! And then he had me draw another picture of the two of us walking past a refrigerator!

On paper, Max could do anything.

You know that I try not to guess too much when it comes to these Picture Talks. I can’t fully understand what they mean to Max. But here is what this one means to me – Max didn’t want to be afraid. He didn’t want to live as a hostage. He wasn’t trying to make life challenging with his behavior. He wanted to overcome.

And he has.