Why Special Needs Families Sometimes Skip Sundays

Friends, I grew up in the Midwest—the buckle of the Bible belt. As long as I’ve known, I’ve had my little lace-sock-trimmed hind end in an old wooden pew pretending to sing the bass line with my aunt in the last row and trying not to crack up laughing at an inappropriately quiet time.

As an adult raising kids in a time of choice and pressures-off parenting, my husband and I want to allow space for our own children to figure out what they believe, but as extreme parents, we are losing our chance to do just that. 

Not for lack of trying to modernize worship music or put the “hip” in hipster, most churches today are doing their level best to appeal to a younger crowd, those starting families, and millennials looking for that unnamable thing to fill the void. 

But when you are raising children with special needs, all bets are off.

We want to attend church where we can worship in community, but we have instead chosen the peace that comes from our child’s comfort where we know his needs can be met and he can still learn of God’s love—no matter what he looks like or how his brain works.

RELATED: Sometimes Church is Hard

For us, raising a child with five behavior diagnoses, that looks like streaming church from home and here’s why.

1. Service times are hard.

For many parents with children battling special needs and mental health issues, our kids have trouble sleeping, wake early, or need a great amount of care in the morning. We fight those battles five days a week for school—brushing hair, brushing teeth, getting dressed—and they all come with a price. 

Children with sensory needs tend to struggle more with eating or with having help with basic hygiene. Medically complex children may need help with personal care or getting in and out of a wheelchair. 

When your lowest attended service—one that would lend itself to our favor since there would be fewer people to navigate—tends to be in the early morning, we just cannot get it all done in time. 

Special needs parents fight so many battles every day with our kiddos that making them get up early or go through that rigamarole an extra day of the week tends to become a fight we choose not to pick.

2. Traditional services are too quiet for kids with excess energy.

In our family’s attempt to search for a congregation accepting of our son’s extra needs, we once attended a service where a kind lady with old eyes and silver hair handed our extreme child a felt book with the words “God Loves A Quiet Boy” embroidered on the front. The book was filled with little activities for him to do while he sat through church with his little mouth closed.

Had I not thought better, I’d have left right then. 

Friends, kids most ages cannot be expected to sit quietly and still for nearly an hour. My kids can’t sit for an entire show that they want to watch, much less choir music and a sermon with words they cannot comprehend.

So, no thanks, Susan on pew three with a side-eye that could kill a person. I’ll opt for keeping my kids and their energy at home instead.

3. Contemporary services are overstimulating to sensory sensitive people.

We somehow traded the predictable smiles and warmth of a grandma whose grin reminds you that, although your kid is climbing over the seats, she ‘gets it’ and she’s glad you’re there.  

RELATED: To the Mom of the Rowdy Kids in Church

Instead, we sit impatiently awaiting our child’s number to pop up on the big screen, alerting us our kid needs to be picked up from children’s church. No doubt, a meltdown from the number of kids or the volume level in the play area, the lights from the strobes or the loud music.

The modernization of popular worship services in some church congregations has made the music more relevant for a millennial crowd. Our family—a little bit country, a little bit hippie—enjoys the mixture of a welcomed raised hand of praise and a hint of banjo being snuck in here and there.

Enter our extreme child.

Our boy loves music, but his diagnosis and sensory needs are many, and we have found that the lights, reverb, stacked speakers, and revolving faces at the greeter table have become an overwhelming sense of anxiety and sensory overload for our boy.

So we sing and dance in his room at home where the colors are muted and the songs and volume are what he chose.

4. The support just isn’t there for special needs parents (or our kids with extra needs).

You have a coffee bar (which we appreciate, for sure), friendly church greeters, children’s church for our toddler, and a nursery for new babies, but few are prepared to deal with a meltdown when my child’s mental health is triggered. 

When another parent’s adult son in his 20’s with Down syndrome has an accident and needs his undergarment changed, they can’t cope.

The truth is, church staff isn’t usually trained to handle behaviors in children or adults with special needs.

Friends, pastors, we understand we are asking a lot, but this path that was assigned to us wasn’t something we asked for either. We need more than a room to put our kids in so we can go worship for 40 minutes on a Sunday.

We need meals.

We need support.

We need prayer.

We need interaction with other parents who get it.

These people—extreme parents—we are in your pews. I promise. It’s statistically guaranteed. And we need help . . . but we will never ask for it.

5. We don’t want our child’s needs displayed as your service project.

Not to sound crass, but bringing us a meal or offering to host an Extreme Parents Night Out doesn’t mean we want to sign photo releases for our kid’s special needs to be plastered all over your church’s Facebook page so the community knows you are doing good and giving back. 

Don’t get us wrong. We are grateful—immensely—but the media already tries to make a teen asking our kid to prom into a viral video just because our child isn’t neurotypical. We don’t need that from you, too. 

We just need you to serve our family and love our child simply because we are human beings deserving of that grace.

So, for now, we (and many others) opt for Bible reading and lessons with our kiddos while streaming church online for my husband and me.

Our church family looks like group chats with friends and fellow believers where we ask questions and encourage each other. We go there for prayer requests and text verses of inspiration to each other.

Though our “church” doesn’t have a name or a regular pastor, walls or an offering bucket, we worship through kindness, generosity, and a focus on modeling Christ’s love to our children through our service of our community and others. It isn’t traditional. Some may argue it isn’t even biblical, but it is, for our family, what is best for us right now.

Friends, extreme parenting doesn’t come with a manual. Instead, it is riddled with decisions no parent should have to make, especially in the face of unquestionable judgment from loved ones and perfect strangers alike.

See, we are just like you—the parent raising a neurotypical child.

We are fumbling our way through jobs and bills, school work and doctor appointments. We are doing our absolute best to create a safe space for our kids to grow up knowing they are fiercely loved.

So, if you don’t see us at church (or the park, or a restaurant, or a party), text us. Check in. Things might be completely fine, and we just had to make the decision that was best for our boy that day. Or things could be complete chaos, and we need back-up. But we won’t ask for it. Ever.

RELATED: Don’t Be Afraid to Talk to Your Children About My Child With Special Needs

Don’t be afraid to ask. We welcome questions. We cherish your love of our kiddos. And we covet your prayers.

Sorry we aren’t sharing a pew, but please know we are doing our very best to serve our same loving and forgiving God. That just looks different for us right now.