Tag Archives: parenting special needs

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.

Apparently, 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

Hope at 3am

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Dear friend,

I started to write you a charming little story and was halfway through…when Tuesday night hit.

Let me just say that most of our days and nights are good. Not easy, but good.

For the past two months, however, Tuesday nights have been different. It’s as if autism grabs hold of our lives like a 1950’s sci-fi flick, the one with the pretty little plant that suddenly starts eating unsuspecting by-passers. But there are no cheesy special effects here. No curtain to peel back to see what’s behind. It is 2am, and life is loud and messy, all of our tried and true strategies failing.

I breathe in and force prayer into my mind and mouth, to drown out the noise and my ugly thoughts.

I ask God for strength for the next second.

I blow it.

And then I ask Him again.

Finally the raging battle, which is too big to be fought on earth alone, subsides. It is quiet. My son is asleep.

I stand in the bathroom with my toothbrush in hand. I have no energy to fall on my knees, or close my eyes. “This is really difficult,” I tell God as if He were standing in the bathroom beside me, helping me to hold the weight of my toothbrush. “I know you are here with us. I know, even when it is this hard.”

I turn on the television to clear my mind. I watch an ad for a body lotion that will shimmer in the light and make your arms “look thinner and more toned in your holiday dress” the voice claims. And then I hear about a door buster sale, with record-breaking low prices, on toys. More and more toys.

So let me clear through all the clutter and noise – in the midst of the Christmas season, in the midst of your Tuesday nights, or Wednesday mornings, or Saturday afternoons. There is one truth. Jesus.

God sent his one and only Son, Jesus, into this world as a tiny baby. He sent His Son into this world of Tuesday nights, to be our hope. God planned this before He ever created you or me, knowing that this world, and our hearts, would be filled with brokenness and struggle. He knows it’s difficult. He has not forgotten us. He tells us, “In this world you will have trouble, but take heart, for I have overcome the world.” He tells us, “Never will I leave you. Never will I forsake you.” He tells us, He knows the plans he has for us, plans to prosper us and not to harm us, plans to give us a hope and a future. God sent His Son Jesus into this world so that whoever believes in him shall not perish but have eternal life. Jesus is all that is true and noble and right and pure. Jesus is the One Truth left standing when all else has crumbled.

So I will save that charming story for another time. Because right now someone else might be standing in a bathroom at 3am with a toothbrush that is too heavy to hold alone. And if that someone is you, take comfort.

There is One Truth we can hold onto.

It is the same Truth that holds the whole world together.

Jesus.

Sincerely,

Emily

Max’s Two Words about Autism

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“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

Max’s Go2 Team!

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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