Tag Archives: Dancing With Max

My Thanks to the Stranger

Years ago the grocery store was the last place I wanted to go with my son with autism. Now, it’s the place I don’t want to leave. 

 I followed my son into the tiny grocery, his steps bouncing so high that I thought he might lift right off the ground. He dashed behind the counter and slipped off his coat so that everyone could see the store logo on his shirt. Max is so proud to put on that shirt in the morning, to wake up with purpose. It’s the same eagerness evident in everyone at Max’s day program, a true appreciation for the privilege of working. The other employees in the store burst into smiles as they welcomed Max to work. As I waved goodbye, I gave my son a huge silent cheer and a double thumbs up. I must have looked like one of those over-zealous moms at their child’s first kindergarten play.

Max’s teacher, Kacey, greeted him warmly and the two of them walked toward the refrigerators at the back of the store. Max loves refrigerators. He can identify any refrigerator—anywhere—by the brand, temperature setting, and fan system. He is like the CSI of appliances. I could see Max at the back of the store now holding up a bottle of cleaner and giving the first glass door a few sprays. He was focused, working so quickly that it was like watching a speeded up movie reel. I was mesmerized; I couldn’t leave. And there was Kacey, standing back just enough to let him soar.

To imagine this victory years ago would have been impossible. When Max was younger, he couldn’t even walk through a grocery store. The sights and sounds and smells overwhelmed him. And he was terrified of commercial refrigerators, often melting down before we even walked into a store. He didn’t have the language to explain any of it back then. We stopped going to the grocery…and the pharmacy…and just about everywhere else. For far too many years, autism held us hostage. Even now, nothing is easy about this journey.

But sometimes victories come. Today, at age 25, my son now works in a grocery store.

Then just a few weeks ago, something happened. Kacey couldn’t wait to tell me. It made our years of isolation and struggle come full circle. A customer had come into the store and noticed Max. Actually, it’s hard not to notice someone who works with as much enthusiasm as Tigger. Kacey hadn’t seen anyone watching; just business as usual. But when Max finished his shift, the cashier had something extra for Max.

Max $10 tipApparently, when that customer saw Max working, he stepped in. He approached the counter and handed the cashier a $10 bill. “This is to buy that young man lunch,” he said as he pointed to Max, “Because he is working so hard.”

“Mom?” Max called as he suddenly noticed me hiding in the canned goods isle, watching him work. “Are you going home?”

“Oh…yeah Max,” I said, pulling my emotions together and quickly searching for an excuse for why I was still in the store after dropping him off. “I’m just…looking at something,” I said as I held up a can and pretended to read the label. My vision was blurry with tears as I stepped out of the aisle and waved goodbye to Max again. But he didn’t lose his focus. He just turned back to the job he was doing. After all, he had work to do. It was business as usual.

By Emily Colson

My deepest thanks to all those who help our loved ones with autism serve and work in the community, and to every stranger that steps into the joy of our hard-fought victories. 

Photo credit: Kacey O’Gara

Max’s Two Words about Autism

Max's Two Words about Autism - specialneedsparenting.net

“Max!” I said with the kind of enthusiasm I hoped would be contagious, “We are going to like this new doctor. He has a daughter with autism!”

I tried to mask my own nerves, wondering how we would get through the next-day’s appointment in the city. I watched Max for a reaction as he bounced in his seat and started eating his dinner in a style reminiscent of a wood-chipper. Sometimes dinner in our house is so active that I think our dining room chairs should be equipped with seat belts.

“Max,” I cried excitedly drawing his attention away from the — gluten-free — grain-free — dairy-free — creation that only resembles food by the fact that it is on a plate.

“Who else has autism?”

Max’s eyes brightened. “Max has autism!” he answered, sitting up a little taller in his chair.

“Yeah! That’s right!” I cheered. “So we like this doctor already!”

Our over-zealous dinner conversation hung in the air as I took my first bite of dinner. The word autism has been a part of the conversation in our home since Max was very young. But on this night, when I gave that word a purely positive spin with Max, I felt like a fraud. I’m not telling him the whole story. And in truth, I don’t know the whole story Max would tell me. What would he say about autism?

Thoughts of this journey and the bittersweet sound of the word swirled in my mind. None of this has been easy, yet God has made it beautiful. Autism has been the fertile ground in which God has grown my faith. And it is the ground from which God has brought love and joy and goodness to us, and to others. There have been victories so sweet that I can almost feel myself climbing the stairs of the Philadelphia Museum of Art, hands thrown up in the air like Rocky Balboa, shouting that we are more than conquerors in Christ Jesus.

And then there are the other times…the not so pretty times…when autism collides with life and I fall face down in exhaustion, in weakness, breathing out one-word prayers that lift above me like a feather in the wind.

“Help.”    “Father.”    “Help.”

And God hears.

God sees.

But…Max. What would he say about autism?

“Max,” I said, placing my fork down on my plate and gently turning toward him. “Can you tell me something about autism?” The question lumped in my throat.

Max took another bite of food, as if he hadn’t heard me. I silently reprimanded myself for such an open-ended question. Max struggles with conversation, and especially with questions as big as this one.

I turned back to my dinner and pushed my food around knowing I could let that question float away unanswered. Maybe I didn’t really want to know the truth. What if he told me it was painful, or that he feels frustrated by the challenges, or even that he is simply tired of it all? Because I’m sure, at times, that is true. But God loves me enough to hear my words of pain and struggle when I turn to him. So Max deserves the same, for me to love him enough to hear his truth as well.

I leaned toward him and slid my hand along the table to gently, bravely, ask for his attention. Max is so handsome, almost 25 years old now, and a Christian; he belongs to God. He has touched more lives with is sweet spirit, and his uncontainable enthusiasm, than most anyone I know. I smiled as I caught a glimpse of his missing sideburn, the result of his overly efficient shaving experience the night before.

“Max,” I breathed, “Can you tell me two things you want someone to know about autism?”

He looked down and, without hesitation, spoke two simple words that left me speechless…

“Love.  Peace.”

 

By Emily Colson

Photo credit: Kacey O’Gara

A Man and His Vacuum

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We bolted into the store so quickly that I thought Max might pull the handle right off the door. He was on a mission, but I had one too. My job was to size up the clerk. I looked across the store and saw a rather serious looking older man wearing a black suit and standing behind the counter. This is not going to go well, I thought. We would do much better in a store like this with a clerk who was…say…on a three hour break in the back room. This called for fast action. I quickly approached the clerk, stretched out my hand and introduced myself as if I were on a job interview. “I’m the one who called you,” I said. “My son Max is interested in the Oreck XL 2000 R-1 vacuum.” (Yes, I speak Oreck.)

I pretended not to notice that Max had already darted toward the line up of vacuums and was flying around the store like a helium balloon caught in a wind tunnel. I flashed my biggest smile trying to maintain eye contact with the clerk. But as I locked eyes with this gentleman I could see, with my highly trained peripheral vision, that Max had now turned one of the vacuums on and was pushing it across the carpet with the level of exertion typically required to push an eighteen-wheeler off a cliff. Gripping the man’s hand tightly, which would make it much more difficult for him to point us to the door, I reminded him, “My son is here to BUY a vacuum…with HIS money.”

Max has always loved working. He loves knowing that he can serve, contribute, and be productive, even if he is only working a few hours a week. Working gives Max a sense of purpose, which is essential to every human being. But only now, as he stood in an Oreck vacuum store, did he understand something else. He could buy stuff.

Max's savings chartIt’s all thanks to Max’s amazing teacher, Kacey. Before this, Max didn’t understand the value of money. His paychecks were always crumpled up at the bottom of his backpack. So Kacey made a chart to help Max understand how many paychecks he would need in order to purchase his life-long dream – an Oreck vacuum. All he needed was 11 paychecks! Each week Max dutifully collected his paycheck and marked his chart. And each week as he worked at his jobs, the excitement grew – even his employers were cheering for him. All these weeks of working and saving made this moment in the Oreck store a very sweet victory.

I finally let go of the store clerk’s hand realizing that my distraction strategy was going to become obvious. The clerk turned to get a good look at my son, who was now as electrified as the vacuums. Max’s 190 pounds mocked gravity as his feet hovered above the ground. We both watched as Max set the first Oreck back in line, and grabbed another in his arms. He twirled across the floor as if the store were a 1940’s dance hall, and he were the only man in a room of waiting wallflowers.

I didn’t try to stop him; actually, short of divine intervention or the tiniest of sudden tornados, nothing could stop him. I held my breath as the clerk finally began to speak. “I’ve been selling vacuums for forty years,” he said. I gasped in awe, knowing that this man and my son probably had more in common than one might expect. I looked at him and smiled. “Forty years?” I asked. “Have you ever seen anyone as excited about vacuums as Max?” He laughed, and the sharp lines in his face softened.

We spent an hour in the store living out Max’s motto, which in military terms would be, “No dirt left behind.” Customers came in and out, and Max offered them vacuums, and handed out vacuum bags. You would have thought my son had a share in the company.

As the clerk wrote up the purchase, he looked kindly into my eyes and said, “I have a nephew with autism. And there’s another boy who comes in here every few weeks. He has autism too.” I felt the dust-bunnies in my heart clear out a bit. And then he turned to Max and said, “You can come back here any time you want.”

Max clutched his brand new vacuum to his chest and we walked out the door. As we stepped into the bright sunlight, I could see that his hair and shirt were completely soaked with sweat. His faced was glistening and flushed. But it was from more than just the exertion of vacuuming for an hour.

This moment was truly his.

I put my arms around his warm shoulders and squeezed him close. His smile was bigger than the whole outdoors. Max stood on the sidewalk and held his new vacuum up against the brilliant blue sky, and yelled,

“I did it Mom!”

By Emily Colson

 

 

What We Hope For

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I knew my son valued his job, but I hadn’t considered if his employer valued him.

“Behind you!” I heard Max call as he walked through the bustling commercial kitchen. As a mom, I’m doing an excellent job of “letting go,” just as long as my son wears a hazmat suit, or in this case, perhaps a full-body oven mitt. Fortunately for Max, I’m not his regular job coach in this busy Cape Cod seafood restaurant. But when his coach calls in sick, there is no way I’m going to let Max miss his day of work.

Max passed through the hot kitchen, punched his time card, and made his way into the dining room. “Come on in, Max!” the manager smiled. “Hi Cory!” Max answered as he grabbed the window cleaner. I scurried to keep up as Max washed all the windows and tables in the restaurant, filled the sugar caddies, and restocked the condiments. “How about getting the ice, Max?” Cory suggested. Max bounced up on his toes and followed directions as if autism never clouded his mind, never caused him to lose focus or hesitate.

Finally Cory unlocked the front doors, “Ready Max?” he said as the line of waiting customers flooded in. Max held the door open and greeted people with his mile-wide smile. The dining room is Max’s turf; Cooke’s didn’t make him a back room guy.

I almost blew this job for Max. It was mid summer and Max was scheduled to work on the 4th of July. He only works one morning a week, but with the holiday traffic on the Cape, I knew the commute would be unbearable. So a few days prior I sent Cory an email to cancel. Cory responded almost immediately. As I read his words I felt a tinge of embarrassment. And then I sat back in awe.

“Hi Emily, Max is doing a great job and we love having him! I want you and Max to know that we truly rely on him. That being said, it’s difficult for me to adjust the schedule with such short notice – especially on a holiday weekend. In the future, I’ll need a little more notice for a day off. I don’t mean to sound harsh, but he really is a part of our team and I’m telling you what I would tell anyone else that works at Cooke’s.”

 I knew how much this job meant to Max; I just hadn’t considered how much Max meant to Cooke’s.

“Here’s one for you, Max,” I heard Cory say. I turned to see a tray towering with golden fried clams and a stack of onion rings. “Can you make a food delivery?” I looked at the tray and went a little weak in the knees, imagining how easily those clams could become airborn. But Max just stood tall with his shoulders back as if he’d been waiting his whole life for this moment. As I followed Max into the dining room I couldn’t help but notice how capable my son has become, how valued he is in this restaurant. His steps looked so free that I stopped following.

I let him go.In dining room

I watched from a distance as Max set the tray down with only a minor bump. The customer looked at his plate as the rich fragrance filled the air. Max knew the next part; he’d been practicing at home with his job coach. Cooke’s has made Max the official Customer Satisfaction Representative; we need more employers in the world like Cooke’s. “Welcome-to-Cooke’s-How’s-everything-Enjoy-your-food,” he said as if it were a single word. My heart burst.

The customer looked up and smiled, but didn’t have a chance to answer. Max was already bouncing back toward the kitchen, ready and willing to take his next assignment. I could feel tears well up in my eyes because I knew the unspoken answer. We all knew.

“Everything is great, Max.”

 

By Emily Colson