Category Archives: Down Syndrome

What happens when you yell at church?

photo-40

Something happened at church. Or perhaps what you need to know is, what didn’t happen.

I pulled up to the church and Max bounced out of the car swinging his favorite vacuum. Several people were unsuspectingly milling around by the front door, exchanging greetings. “Watch out for the people!” I yelled behind Max as I watched his 8-pound Oreck swing like a ten ton wrecking ball. I fully expected to see the crowd part like the Red Sea, people diving into the bushes head first as Max and his vacuum bolted toward them. But instead, they extended their arms for a handshake, or a pat on his back.

Every time I walk through the doors of our church I remember the years we lived in isolation, and the five years of staying home on Sunday mornings when we could not find our place. Autism held us hostage. But it is not a bitter memory; it is the soil from which God grew a victory. When I cross that threshold now with Max, it feels like holy ground. Max comes most Sundays to serve as a greeter, and at the Welcome Center, and as part of the clean up team, otherwise known as the “Grunt Crew.” Max has clearly been given one of the lesser-known spiritual gifts of vacuuming. But what has changed Max’s life is what has changed mine: he is loved. He belongs. He is indispensable. We have been back at church for twelve years now, and none of this has been easy; sitting quietly is not part of Max’s skill set. But it’s as if the whole church is learning to breathe a little deeper, and in that, we find there is enough room for everyone.

After a wonderful and slightly aerobic morning, we could see from our seats at the Welcome Center that Pastor Paul was finishing up the message, or “the talking” as Max calls it. That’s Max’s cue. He flew into the sanctuary and took his position in the back. This is Max’s spot, up several stairs beside the sound booth. He worships there most Sundays, all 190 pounds of him, dancing above the congregation. Most Sundays Max bounces so hard that one would expect him to go right through the wooden platform floor, dunk tank style. But he won’t. Some of the men at church noticed the same risk. They got together one day and reinforced the floor where Max dances. It was months before anyone told me what the men had done. There was no mention of cost or inconvenience; no suggestion that perhaps the sound booth should not be used as a 1960’s GoGo booth. Instead, they just strengthened the floor. Maybe this is what we all want – to find the spot where we belong, and to know that others will hold us up in it. My friend, Pastor Brooks, said to me recently, “We move from a family attending church, to a church that becomes a family.”

Max and I could now see the music team taking their positions on stage. Max started dancing even before the music began, bouncing on his toes as if he were walking on hot sand. He was extra excited this morning, anticipating our church picnic that would follow the service. But when the music started, it wasn’t a dance song at all. Instead, it was slow and piercing, a quiet rhythm that pulled us forward. Everything became still. There was a shift in the room, as if the Spirit was pouring in like a gentle tide, surrounding us, lifting us, washing over our feet. The entire church rose in unison to stand in the deep, with our hearts turned to God. And when the song ended, no one moved.

Well, almost no one.

Max could no longer contain himself. He threw his arms over his head and leapt from the platform. He got some good air and then stuck the landing with the precision of a Russian gymnast. And when he landed, he yelled. Loudly. This was not your average run of the mill shout, or even the kind of noise one might expect when leaping from such a height. No, this was the kind of sound one exerts when instigating a food fight.

“BAR-BE-QUE! Max yelled across the church, his arms still stretched to the sky.

I ducked down to make myself slightly more invisible in the now well-lit church, wishing there were a dressing room curtain I could quickly hide behind.

Through squinting eyes I watched as the church moved in unison once again. But this time every head fell forward, every shoulder curled. It was as if a single rogue wave had crashed over the entire congregation. A moment later those same heads bobbed back up for air with a burst of laughter that filled the sanctuary. And then the most remarkable thing happened. Or perhaps, didn’t happen.

No one stared…or sighed…or scowled. No one even turned around to see where the sound had come from. Instead, every person just wiped the salty spray from their faces and turned to smile at the person beside them. The same sweeping tide that had lifted us to God in worship was drawing us together in love.

Max darted into the crowd and started shaking hands with people as if he were campaigning for office. I just leaned against that reinforced platform, trying to decide if this was completely embarrassing, or achingly beautiful. And then I heard something in the distance. It was a man’s voice, rising above the laughter in the church,

“That’s our Max.”

1 Corinthians 12:18,22  “But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be…those parts of the body that seem to be weaker are indispensable.”

Thank you friends,

Emily Colson

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…shutterstock_257655130

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:

photo1

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:

photo2

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:

photo3

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