A Life's Work

Or, (reluctantly) learning what matters

A note from Katie: April is Autism Awareness month, and I’m sure you’ve seen many beautiful tributes to the beautiful people that live with autism. Theirs’ is a world that doesn’t make much easy for them, and they deserve every kind word and every attempt at understanding their life we can offer. 

I try to write something to contribute to that effort each year, but I will tell you, this month in this year, it has been one of the hardest months—living and learning with my son’s autism—of my life. 

Disability is a roller coaster. High highs, certainly. But low lows, too. We’ve simply found ourselves on a somewhat of a free fall section of this ride and I’m clenching the safety bar with all I’ve got. 

So my contribution this month is simply to tell the truth, and to tell you all stories about people that matter over here in this part of the world, where lives beat to no predictable rhythm at all because disability does not come with much we can predict–the single parents who show up every day to the near impossible, the big buddies and teachers and principals who never run out of welcome, the people who remind us to keep making the phone calls and tell us that we can do this. 

Many, if not most of you reading this, do not have a child with autism. But the latest data tells us that 1 in 36 of us do. And from my place in that data, I can tell you this: our lives are intertwined, and we need you. We are so grateful for any attempt you make to understand autism, to love our children, and to remind us that our life’s work is in the hands of a sovereign God, and it matters. 

Yours does, too, no matter what it is.

Thanks for being here, friends. 

I’m sitting in the auditorium of a large church in California, looking up at the screen that is broadcasting a live speaker from Chicago, furiously trying to take notes but not take my eyes off of the storyteller in front of me. He’s absolutely captivating. I feel like a child at a party where the piñata has just been burst open; his words the candy thrown into the air that must be claimed before they're gone, before I miss them. This man’s life matters, and it matters in all the ways my twenty-four-year-old heart wants my own life to matter. He’s courageous, kingdom-minded, using his God-given gifts and talents to work for justice and bring God’s name honor all over the world, in some of the places it feels the most difficult to do that. And in his steps of faith, he has seen God do miraculous things. Impossible things. He doesn’t care about being rich. He never set out to be famous. He has simply chosen to believe God is who he says he is, and that his word means what it says. 

What I’m listening to is truly everything I want. Not money, not fame; just faith, and a life that matters. 

He finishes his talk with this sentence, which I scribble in my notebook and hold on tightly to—a little girl who found her favorite candy in the race to find something from the piñata she could call hers, and clutches it to her chest: “If you don’t have a life’s work that requires you to stop and pray for God’s help, his guidance, his intervening power every few minutes, I might suggest that you either need a different life’s work, or you need to do your life’s work in a different way…”

Twenty-four years old, single, equipped with an excellent education, full of fire and searching for the kind of courage I see on the screen in front of me, I nod my head in affirmation. Yes, Lord, I’m ready for that kind of life’s work.

//

Outside the front of my son’s school at 8:40 in the morning, there is a sea of children’s skipping legs and backpacks bouncing up and down. The kids that walk to school get to enter on this side, where the school buses drop children off, and where the “special program” kids meet their teachers every morning. The regular carpool line is on the other side of the school, and it’s much longer than this one. This entrance is designated just for us, where the teacher comes right to the car to hold our child’s hand all the way to the classroom. 

The mom getting out of the car in front of me is really struggling with her son today. He doesn’t want to go in, doesn’t want to give back the iPad he’s been watching in the car. Surely people have wondered, Why did you give him the iPad at all this morning if it’s so hard for him to give it up? to which she has likely wanted to scream in response, Because that’s how he communicates with me! Or, because I am a single mom and I have to get to work and he wouldn’t get in the car without it! I don’t know for sure, but having a son a lot like hers, well, I’m pretty sure I do know.

Her son is now on the concrete in front of the school entrance, surrounded by caring teachers who know he has to go into school on his own, or he’s not going in. He’s big and strong for seven years old, too big to be forced into anything, and everyone knows that would do no good anyway. But his mom has to get to work. Her uniform is already on, and while the retail store she works at is not far from school, she has to leave. Her son needs her right now, but how can she take care of her son if she doesn’t have a job? Four teachers and the principal stand around her best buddy while he lies on the ground, to keep him safe until he decides to get up. They tell her Go, it’s ok, go to work, and I’m sure I see her wiping tears from her eyes as she drives away, leaving her son on the cold concrete with a few people who truly care. 

//

The sky is blue and the sun is shining in a way that we can feel its warmth on our backs, a gorgeous welcome to Spring we’ve all been waiting for. We are all out at the local baseball field, and for the first time in his life, it’s Cannon’s turn to be on the team.

Two incredible local parents have organized a team for children with disabilities, and side by side with Cannon are other precious kids with downs syndrome, autism, or other critical impairments leaving them wheelchair bound.

But today, they just get to be kids playing baseball.

Each child has been partnered up with a “buddy” from the youth baseball league, and these big buddies have sternly been given one task: stay with your partner. Cannon’s buddy takes this assignment so seriously, and it’s honestly the most delightful thing I’ve ever seen. Cannon does not stay on base, does not run in the right direction, does not do much of anything the way a baseball player is supposed to and yet his buddy jogs next to him, tries to tell him where to run, and protects him from fly balls for a solid hour. He doesn’t understand Cannon, but he doesn’t let that keep him from caring about him right now.

I laugh and shake my head from the other side of the fence, and cheer wildly as each child gets a chance to score a home run. I want to walk up to every parent who has let their typical child spend the morning playing baseball with my son, and tell them I know this is one hour of your day and you’re probably just trying to teach your child to be kind to people who are different than them, but I hope you know, this—this welcome to be here feeling—is everything to us.

//

Last week I spent nearly ninety minutes trying to reach the right person at the DDA (Developmental Disability Administration) office. At one point, I was transferred back to the kind volunteer at a front desk somewhere, whom I had talked to thirty minutes before. She laughed at our ring-around-game, apologized, and sent my call through to a different number, where I waited again for someone who could answer my questions. I didn’t find it very funny.

Cannon’s therapy offices recently–and very suddenly–closed down, and after six straight years of five days-a-week behavior therapy, we are currently without it. I’m really hoping to find some help for Cannon over the summer, and I’ve been told his disability qualifications might mean we can get some assistance paying for that through the DDA. But I do need to find the right person to talk to, and so far all I’ve accomplished is a few voicemails on numbers that may or may not be for the right person.

“You have to keep calling, Kate,” my mom encourages me. “You have to advocate for Cannon.”

“I know,” I tell her back, knowing my mom’s encouragement is coming from a place of trust in me. She knows I can do this. She knows I have to do it. So do I, but I’m tired. It’s been a very tough few weeks at school for Cannon, and I sit by my phone every day, a ball of anxiety waiting for the message from the teacher that his head is bleeding from the hitting, or he’s in the calming room again, or I need to come get him, all while trying to manage my other children and the rest of my life. Holding back tears, I barely get the words out, “I just need something about Cannon’s life to be easy right now, mom.”

She nods. “This is your work, Kate. You’ll do it. You are doing it. Leave a message for DDA every day until you get what you need.” 

I’ll try.

//

It’s Friday just before lunchtime, and I get two text messages from Cannon’s school. He’s upset, very upset. I load up my youngest three children in the van and make the twelve minute drive to his school in eight. When they open the side door for me, I can see into his classroom through the window just before they open the door, and there on the ground is the school principal, rocking Cannon back and forth, telling him it’s ok, Cannon, mommy is on her way. He’s hit her a few times, some on the arm, I think once or twice on her face, and she doesn’t budge, doesn’t yell. She just keeps rocking.

I heard a story this week from an acquaintance, her little guy is in a different school nearby, and struggling with various behavior and learning challenges. Her school’s principal told her last week, Look, there is nothing we can do for him and His behavior is a distraction and impediment to everyone who works here. She’s lost and devastated and fighting for him, of course, but it’s so hard to fight for a welcome when it’s clearly not being offered.

My son’s school principal–surely with a hundred other things to do–is on the ground of his classroom, rocking him back and forth. The living picture of unconditional welcome. I open the door of his classroom and burst into tears at all of it– for my son, and over my gratitude for people who care.

I wonder how many stories our principal heard in her twenties, how many speakers and leaders left her thinking, Ah, yes, that’s the kind of life’s work I want. When she dreamt of being an educator and making a difference, or sat in graduate school classrooms obtaining all the qualifications to lead a school–surely imagining the possibilities and the potential accolades for a high performing student population, the notoriety a good principal could earn–did she picture the back of the classroom, and the piercing screams of a frustrated young boy, heavy on her lap?  

//

For more than a decade I’ve wrestled with the Lord about a life that matters. I was ready to go anywhere, do anything, fight for the oppressed, free the captives, be brave, make a difference. 

And the Lord sent me to a place where children struggle with anything and everything–listening, eating, talking, coping– where they (and sometimes their parents) are misunderstood and dying to explain themselves, where phone calls for the right services are long and unclear, where welcome is not always found but when it is, it is absolutely cherished. 

In the last few weeks, I have been writing down everything about Cannon’s day to try and find the trigger, the cause of this extra frustration we’ve seen emerging. Is he eating something that causes a headache? Lacking sleep? Too much screentime? My journal catalogs his food and his mood and the efforts we’ve made to keep him regulated, and then every few lines, at the realization that we could be helping or we could be doing nothing at all with every extra effort, I write a little prayer: God, please help. After writing this several times each day, I’ve taken to saying it, actually speaking it out loud, too.

When I make his breakfast and sneak his medicine in, God, please help.

When I put his shoes on, Lord, keep him calm today.

When I pass his hand off to the teacher at school, Please give him peace.

Every time I hear my phone throughout the day and go look to see if his school has contacted me, God, you made Cannon, you know Cannon, you can help him. 

Give us wisdom give us wisdom give us wisdom, all day, every day.

Please help please help please help please help please help, all day, every day now. 

I think back to that young girl at the conference, her whole life in front of her, listening to men and women talk about what matters in God’s kingdom. In my dreams of that kind of life’s work, I’ve been reluctant for a long time to see it. But I do now, I see it perfectly. A life’s work that requires me to stop and pray for God’s help, his guidance, his intervening power every few minutes— that is exactly what I have.

Perhaps I’ve been prepared for this life, this hard and beautiful work that matters, for much longer than I thought. And I guess if God has always known we can do it, we can.