Tag Archives: parenting a child with special needs

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

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

Hope at 3am

 

Where we find hope, even at 3:00 am - specialneedsparenting.net

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

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

Those Words that Let Us Know We Aren’t Alone

Those Words that Let Us Know We Aren't Alone - specialneedsparents.net

I brought my son Max to a neurophysiologist’s office for an evaluation. If you aren’t familiar with a “neuropsych eval,” it is a two-hour process in which you must:

1) Sit

2) Remain sitting

3) Give the allusion that you are paying attention while you remain sitting.

Back then, when Max was nine years old, and already years into the diagnosis of autism, fulfilling any of these three requirements was as likely as sprouting gills. Actually, it’s a little known fact that Einstein came up with his Theory of Relativity (E=MC2, the idea that everything in the universe is in constant motion) by watching a child with autism take a neuropsych eval.

As we finished the testing I could feel my shoulders pull tightly toward my neck, like involuntary isometric exercises. I braced myself for the doctor’s response. And do you know what he said about Max?

Neither do I.

All these years later, I don’t remember the results. But I vividly remember how the doctor said it.

“Our kids usually test this way,” he said.

I stared at this man who had a long string of letters after his name, and I wondered, did he mean to say that? And then, he said it again.

Our kids … something-something-something.”

‘Our kids?’  I thought. He didn’t say your kid. He said, “Our kids.”

As a single mom – overwhelmed, living as a hostage of autism, feeling isolated and alone – that little word “our” rolled through my mind and knocked down everything in it’s path. Suddenly, everything crumbled. This wall of anxiety that was bracing me for the terrible news that would certainly be delivered, the intense weight of feeling like I am doing this alone – it all dropped away. Even my steel plated protective armor, that has taken me years to build, fell right off.

But he didn’t stop there. This doctor added other tiny little two-letter words. Words that would never be considered interesting enough to qualify for a spelling bee championship, or fashionable enough to tattoo on one’s arm. They would be considered vocabulary light.

He began to say, “We” and “Us.”

My brain pulled out a giant blue pen and drew circles around those unifying words. And my shoulders began to drop. Autism is too big to be a me; I need to be a we. I need to have more “our” and “us” in my life. I wanted to jump up and hug this man, or burst into tears, or ask him if we could be facebook friends once someone invented it. But instead I put my arm around my beautiful, wiggly, E=MC2 son, knowing I was far less alone than when I walked in.

“Thank you,” I said softly, wondering if he understood the power of those words.

By Emily Colson