Tag Archives: special needs parenting

Max’s Go2 Team!

I’m letting you in on the start of a God-inspired project. I don’t know how it’s going to play out, but I do know one thing: life with special needs requires a team. So that’s exactly what we’re doing – building a team around our family.

A few weeks ago I bravely sent a letter to 9 people in Max’s life inviting them to be a part of this team – teachers, buddies from church, family. I’ve attached that letter below. I’m happy to say all 9 have accepted. What a great start!

I hope you’ll follow along as I share progress reports and next steps on this team-building journey. Most of all, I hope you’ll be inspired to build a team around your own family. Here we go…

Dear Friends,

It’s Emily Colson here. I have an idea that I’d like to share. It’s a vision for life lived as a “we,” and not a “me.”

Let me explain.

You know Max – he’s 24, totally awesome, and has a diagnosis of autism. When Max attended school, he had a team. It’s the way school systems work for children with special needs. Max’s team was made up of people from many different disciplines, each bringing their expertise. We held an annual TEAM meeting, and kept in touch throughout the year. Whenever a new challenge came up, the TEAM was on it. We were unified by our common desire for Max’s best.

And then Max graduated…and the word “TEAM” quickly dropped from our vocabulary.

But here is the reality: Autism is a team sport. It requires coordination. It calls for a coach. It can’t be done alone. So bear with me – this is a work in progress.

Right now our lives look like this:

Max and I are in the center, and we are connected to many wonderful and amazing people for whom we are deeply thankful. This is great…until an emergency arises. Or until I’m too tired or overwhelmed to hold things together. Or until one of those giant cartoon anvils drops from the sky, the one that has “1 TON” written on the side, and flattens me like a paper doll.

So, I’m writing to ask you, as someone very special in Max’s life, if you would be willing to let us connect the dots between you and others around Max. I’d like our lives and relationships to form a circle rather than spokes. People in our lives will get to know one another, and bonds will become stronger. Through this process, a complete circle would be built around us, a team of people Max and I can go to.

This would become our Go2 Team!

Our lives would begin to look more like this:

It’s the same principal that makes a wheel roll instead of thump.

This is where you come in! Would you consider being a part of our Go2 Team?

Of course, you might want to know exactly what this Go2 Team is, and just as importantly, what it is not. Let’s start with what it is not.

What the Go2 Team is not:

It is not people who will let me off the hook for the things I am responsible for as Max’s mother. It is not people who will be expected to cover Max when I am away, although some of the team members already serve in this role. It is not people I can call on a whim, like when there is a large bug in my house. Although at times this is actually an emergency. It is not a popularity contest. It is not the same as a legal guardian. It is not people who will make decisions without me, or instead of me. It is not people who will be asked to take over in case I decide to live in a hut in Tahiti. (Don’t worry, I won’t – there are bugs)

What the Go2 Team is:

It is a team I can Go2 when a problem is too big for me to think through alone. It will be a Max “think tank,” if you will. It is a team I can Go2 when the person covering Max gets hit with food poisoning, and I’m all the way in California, or Delaware, or a lounging leisurely at a spa (well, it might happen) and I can’t find anyone to step in. I could send one email asking the Go2 Team to either step in or reach out to their connections – our family or church or Max’s day program for example – and sound the alarm. It is a team I can Go2 when there is a looming concern on the horizon, and when there is a big accomplishment to be celebrated. It is a team that could spring into action in case of an emergency, and help each other navigate an otherwise complicated path. It is a team I can Go2 when I am exhausted, overwhelmed, or when that one-ton anvil has made contact.

We would be a team. Not necessarily an every day team, but a ready and willing team.

Now…there is still a problem.

Autism is complicated. If there really were an emergency, and I became suddenly unavailable, our Go2 Team would need to do more than just pull together as a team – they would need fast advice. Certainly, there would be questions about support services and insurance and medical care and more. And it would be difficult to know where to begin. Yes, I have a “Max Book” to cover the basics, and files organized in a file cabinet. But the Go2 Team would need more. Where would the Go2 Team go for more information and advice?

It looks like we need another circle beyond our Go2 Team.

If we built a second outer circle for emergency help, it could include autism specialists, the family support personnel from state agencies, our pastor, a deacon at our church, disability ministry friends, a representative from Max’s past school program, a representative from Max’s day program, past and present teachers, and Max’s doctors. These are people who know and care about Max, and who have access to his history and story and records. Only those who state a willingness to offer individual guidance in the event of an emergency would be listed in this second circle of support.

Since this outer circle is where the Go2 Team can go for help in an emergency, let’s call this second outer circle the Go4 Team!

Our lives will start to look like this:

Now, this thing is going to roll!

Of course, individuals may come in and out of both of these circles. The most important thing is that everyone will stay connected. I will have a team to reach out to when life gets complicated. And the team around Max will have a place to go for help and advice in an emergency. And when all of this happens, the weight of the really big challenges will become lighter, the joy of accomplishments will become greater, and the bonds between those who love and care about Max will become deeper.

And I can live life as a we, and not a me.

Now, about that flight to Tahiti.

With Love,

Emily Colson

The Privilege of Freedom

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.

It’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

Darkness in a Theater

Update: Emily wrote this post in January of 2014 and has a follow-up piece she wrote in April of 2014. You’ll want to be sure to read “Love to the Max” to see how Emily’s church and community reached out to Max!

We came to see a movie. But I never imagined that we would become the entertainment.

Patty and I found our pre-assigned seats and sunk into the plush leather, with Max sandwiched between us. Despite the exorbitant ticket price, this posh new cinema was completely full. I studied those around us searching for a smile, which is the gold star sticker of acceptance. But no one seemed to notice Max. As we sat waiting for the film I marveled that we could be part of this audience, sitting like everyone else enjoying Christmas with their families. We became something bigger than just us; we were a school of fish moving together in unity, gliding through the deep blue. Max’s eyes darted around the room, his pupils like black pools as the lights dimmed.

“Don’t worry if Max gets anxious in the beginning of the movie,” I whispered to my step-mom Patty. “He needs a few minutes to adjust, and then he loves it.” I felt a little rush of pride come over me, with a desperate hope that it would actually work. Sitting at the movies is one of our hard-earned victories. But after 23 years, I know that life with autism is predictably unpredictable. I clutched my bag under my arm, with Max’s teddy bear peeking out of the top just like the Hollywood starlets carry their Chihuahuas.

The first preview started with eardrum-breaking volume. “I want to go home!” Max shrieked as he folded over his ears. I leaned in quickly, knowing the drill. “It’s ok Max. Our movie will start in a minute. This will stop.” Just as Max was about to completely unravel, our great green friend appeared like an angel on the screen, but with the potential for warts. It was Kermit, as big as a house. Max’s face relaxed, “The Muppet movie!” Max cried out in a jubilant voice that carried unfortunately well with the fine acoustics of the theater. “And Fozzy Bear!” Max laughed nearly slapping his knee. It was apparent that, despite their best efforts, these felt puppets were not bringing joy to the rest of the audience. I leaned into Max and pointed to our movie theater rules. “Whisper voice,” I reminded him.

Finally our feature started, and once again the change startled Max. “I want to go home!” His voice cracked across the silent theater.

But he was quickly drowned out.

“Are you going to make him be quiet?” The older woman next to Patty exploded with aggravation.

Patty leaned toward her and explained, “He is autistic and…”

“I know he is,” the woman shot back as she lunged forward and pounded on her chest. “But why should the rest of us have to suffer.”

“If you don’t make him be quiet,” her husband shouted, “I’m calling the manager!”

I desperately needed an oxygen mask to drop from the ceiling. I couldn’t breath. There in 3D surround sound, my own horror movie began to play.

I threw my hand up toward them in a stop motion. It works for policemen. And I desperately, achingly, wanted it to stop. “Ok. Ok,” I said. “Just give us a minute.” It takes both great finesse and a forklift for Max to leave quickly. My heart leapt into my throat as if it were trying to make an escape before the rest of us. At another time I might have defended our right to be there, but I could hear a strange rumbling of underground thunder. After a minute of dust-flinging commotion, Max stood up beside me, with Patty soon to follow.

And the thunder grew louder.

It was applause for our exit. It was the sound of an angry mob chasing us away with their jeers and taunts.

“And don’t come back,” I heard as we slowly made our way down the stairs in the dark.

I tried to block Max from the view of the crowd, my every step labored, detached, brittle. I wanted to throw my arms around Max to remind him, and everyone else, of just how deeply he is loved. But I couldn’t make my arms work. As we neared the exit, passing center stage, I heard a voice from the back of the theater. It was a man shouting over the thunder of the crowd like a crack of lightening.

“He’s retarded.”

I lost all bearings. I even lost track of watching Max. I stopped and turned toward the sea of faces lit up by the screen behind me. They were colorless, floating, with their little fish eyes watching our every move. The movie must have been showing on top of my silhouette. I don’t know if they could see my hand clutching my heart, my chest heaving for a breath. I tried to squeak something out, but a Boa constrictor had wrapped itself around my throat. I had to find some kind of answer to such cruelty, some memorable response to wash this away.

“There is a lesson here,” I began as I forced my tiny voice forward fearing the movie sound track would suddenly drown me out. “A lesson that is so much more important than anything you will learn from this movie.”

I turned back toward the exit, my arms and legs stiff like metal rods. But just as we were about to walk out, the voice from the back of the room struck again.

“Merry Christmas!” he called to us sarcastically. It was a kick in the back on our way out the door, a final deathblow meant for purely perverse entertainment.

I looked back up at the crowd once more. The little girl in me wanted to storm up those stairs and throw over the monopoly board. Fortunately the grown-up part of me was numb. Plus, I knew I was outnumbered. Just minutes ago, I was a card-carrying member of this audience. And sadly, despite everything that would speak to the contrary, despite my desperate desire for it to be untrue, I knew I still was. I shuddered at the truth of it, at the vile potential of every human heart. Including my own. And then came the strangest sense of clarity, the tiniest bit of perfect peace.

Christmas.

It was a nudge of truth from the Holy Spirit. Even as I share this story with you days later, I feel it. Christmas…when God sent his only Son into the angry lynch mob of the world that groans with self-serving demands and cruelty and hate, to bring us light in our darkness. To bring us healing for our utterly disabled souls. To save us from ourselves – something we cannot do. I couldn’t wait to get my son out of there. But Christmas…Christmas is when God, in his lavish love for us, chose to send His only Son right into this carnage. Christmas is God’s answer to the evil in every human heart.

We stood just a step from the theater exit, my chance for the last word. With my hand still clutching my chest, I scraped up every shred of kindness I could pull together in my fragile splintered self, and breathed words of hope back to the audience, and to myself.

“Merry Christmas,” I whispered.

And the words spilled around us like a little pool of light.

“In Him was life, and that life was the light of all mankind.

The light shines in the darkness,

and the darkness has not overcome it.”

John 1:4-5

Written by Emily Colson