Having a Child With Special Needs Means We Can’t Go To Church Anymore

We can’t go to church.

We used to go . . . Finn went with us every Sunday morning.

When Finn turned three we gave up.

Finn had stayed in the baby/toddler room with his wonderful caretaker, Mary, as long as he could. He was trying to escape. He was aggressive. He was extremely loud. It really wasn’t safe for him to be around the babies. His stimming consisted of hurling himself into shelves, throwing toys, crashing into toddlers, spinning until he fell on top of someone.

He couldn’t go to the room for 3 and 4-year-olds. He didn’t know the older volunteers. They didn’t know him. At least with Mary, she had been watching him since he was an infant. It was safe and familiar to him.

The new room meant people and places that didn’t make sense to him. New sights and sounds. Also an easier way to elope . . . no locked door and closer to the outdoor exit.

I couldn’t be in the room where the service was held. I had to take him to a private room where I could hear our amazing pastor from a speaker overhead. But I couldn’t focus. I was just managing his behaviors the entire hour—all alone.

It didn’t feel like church anymore.

It wasn’t like when I used to walk my older kids up front to sit with them for a “children’s moment” when all the kids gathered before service to listen to a special message from a chosen adult that week.

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I could no longer go up there with them or bring Finn. He would just roll and run around, never sitting down with the other children.

My morning was no longer a quick drop off to daycare and Sunday school rooms that followed with me sipping on my Starbucks and chatting with friends before service began.

My Sundays were now a dark, somewhat empty room with only a few chairs watching my Baby Bird spin in circles, bang his head on the ground, and scream.

I tried. I tried to feel the presence of God in that room, listening to Pastor Kelly and the word.

But I couldn’t.

All I felt was isolation.

Pain.

Heartache.

Loss.

Autism was going to take this too . . . just one more thing I’d have to give up.

Church became a prison. That room was a padded cell. I felt trapped. I would sit in that room and think of all the memories we had there.

Our first dear friends in Florida, Lisa and Ben, had brought us there. Before they moved, we sat together. They introduced us to the church and everyone in it.

Our kids went to Sunday school together. Our kids did plays there. My daughter acted for the first time at five years old on that church stage. She had her first singing solo there too. The pumpkin patch, watching the kids paint and play. Landon getting the golden egg at Easter. Landon skating on the “ice” for the Charlie Brown Christmas production. Lilli and her friends as angels and her little brother the chicken. The Wednesday WINK nights for the kids.

Christmas tree decorating and dinners. The time I was pregnant with Finn, Lilli was performing and Landon climbed on stage at two, shouting, “It’s my show!” during the play. I don’t know if I ever laughed harder at church than that day.

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Palm Sunday with Lisa. Our daughter on that stage two years in a row as a mouse. The time she was five, gave me her script before she started the play and shouted, “I don’t need this!” Yeah, she showed them . . . she knew every line.

The moments we shared there as a family were so special. I could have never imagined we’d be here.

Just five years ago, our youngest portrayed baby Jesus at the yearly Bethlehem Experience. I always imagined going there every year, hearing the kids say, “there’s no room at the inn” as they did every year. I imagined they would teach Finn to do it too. Watching Lilli be an angel until she was old enough to be a dancer—that’s what the young girls would aspire to be eventually in Bethlehem—but you had to be old enough.

I never imagined all our family traditions at church would come to an end.

I never thought that my own child could prevent our family from going to church. We even had our family photos done there.

I sit here today, four years later, it’s early this Sunday morning. Finn has woken me up because he wants to play Sega. I drink my coffee and write while Sonic the Hedgehog is blaring in front of me, my Baby Bird, close to me on the floor with his two juice boxes.

My Sundays have changed.

When everyone wakes up, I will cook breakfast. We used to go out after church to IHOP. Now, I teach my daughter how to cook. She has made the eggs the way I do, with cheese, like Landon likes. The older kids sometimes make pancakes, squeezing the batter into silly shapes and characters, using those creative minds. We are in our pajamas most of the early day. No more dressing up in our Sunday best.

The boys will join Finn in video games shortly. My daughter and I are going to bake a pie . . . we decided it’s going to be our Sunday thing.

Our Sunday’s look different, and we can’t go to church anymore, at least not how we used to, at least not yet.

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So I find my church in other things. I find God in other ways. It took time for me to realize I didn’t have to visit the house of the Lord every Sunday to do that.

My church just might look different than yours.

Mine is a night out with good friends who support us and our family—who accept our crazy.

It’s listening to a podcast, song, or Christian rock band perform.

It’s a trip to Target alone with a Starbucks in my hand.

It’s reading and writing like this.

It’s hearing my daughter sing.

It’s watching Landon try to bond with Finn.

It’s having quiet time alone with my husband.

It’s going to a play with my friend Cristina.

It’s going to dinner with my friend Becky.

It’s a three-hour phone conversation with my Chica back in Michigan.

It’s drinking my coffee in the morning and listening to Kate.

It’s a phone call with my mom in Michigan.

It’s watching Finn learn a new skill.

It’s hearing Finn say, “I love you Mommy”—words I didn’t know if I would ever hear.

It’s watching Finn put the star on the Christmas tree for the first time.

It’s having a wine night with Erin.

It’s spending an evening with Lisa when she’s back in town.

And it’s my blog and the Facebook pages—the people I connect with every day, who walk in my shoes, who understand, who might not get to go to church either.

You’re all my religion. You’re all where I go to find God. I see Him and feel Him in all of you.

You are all my church.

Originally published on the author’s Facebook page