When Church Means Pain, What’s a Parent to Do?

Families with children diagnosed with autism, learning disabilities, and intellectual disabilities need their church families. But churches are ill-equipped to welcome them.

I’m embarrassed to admit this.

I never thought about what it must be like to take a child with a hidden disability to church.

 

From my spot among the choir, I’ve watched my friend Jennifer assist her son Joshua to the altar to receive communion. I’ve observed the deacon gently, reverently place the consecrated host in Joshua’s mouth so that he can receive the Body and Blood of Christ. Jennifer helps Joshua make the sign of the cross. I’ve noticed how lovingly and kindly people make way for his motorized wheelchair and ensure his mother has the handicapped spot next to the ramp for her van.

It never occurred to me, however, that the family who sprawls on the last pew behind the choir, with the tow-headed boy who yelled “BOOBS!” at the top of his lungs during a particularly quiet part of the Mass might have a reason for their son’s outburst than sheer bad manners.

I’m horrified that I never considered that perhaps the reason why the little boy in the superhero t-shirt standing in the aisle of church marching to the tempo of the music may physically need to move about during the hour-long service because of his hidden sensory processing disorder.

I want to hide my head in shame at the number of times I’ve given these kids the stink-eye.

This, coming from me, a woman who was incensed when someone whispered that her mother was drunk because her speech was slurred.

“She’s not drunk!” I shouted. “She has multiple sclerosis and damage to the part of her brain affecting speech!”

I can’t believe I never realized how difficult it is for parents of children with hidden disabilities to bring them to church.

My awakening came on, appropriately enough, Pentecost. Christians believe that this is the day that Jesus sent his Advocate, the Holy Spirit, to the apostles and to all believers to be with us until the end of time. I learned in parochial school that the Holy Spirit imparts seven gifts: wisdom, knowledge, understanding, counsel, fortitude, piety, and fear of the Lord.

I was severely lacking in wisdom, knowledge, and understanding when it came to special needs children and their families attending church.

My friend’s daughter posted a Facebook status announcing it was their family’s last day at church. The color drained from my cheeks. What had happened? How could this be? Her husband sat on the board of directors at their Protestant church; their family was deeply involved at the large, sprawling mega-church in our local community.

I imagined all sorts of horrible reasons why they were no longer going to their church but I never once imagined the real reason: their son had been diagnosed on the autism spectrum with sensory processing disorder.

Church, my friend’s daughter wrote, is painful to our son, to the point where he has begun to associate God with pain. He cried when she pulled out his church clothes on Sunday mornings. He begged not to go. She offered to sit with him in the vestibule where they could hear the service and not be so crowded with noise and people who jangled his senses, but he cried harder.

He didn’t want to be separated from them.

He wanted to be with his family.

He didn’t understand, this five-year-old who is so brilliant at so many things, why church hurt him, but not his little sister, or why they couldn’t sit together as a family.

My mind flashed back to a bright spring day when their family had come to our farm to help my husband dig apple trees. The children shrieked happily and raced through the orchard, tumbling like puppies among the daffodils we had planted among the trees. Her son collected snail shells, rocks, pocketing quite the natural history collection before they were ready to go. I couldn’t reconcile this bright, inquisitive child with the child who screamed and cried because the noise at church wasn’t just deafening, but agonizing.

I had to look up sensory processing disorder to understand it better. It helps to imagine crossed wires. In the case of children like this little boy, wires cross in the nervous system and mix up the signals, most commonly for light and sound receptors in the brain. Bright lights, loud sounds overwhelmed his central nervous system. The result? Pain.

Their church attracts hundreds of people each week with its loud, modern praise band. It offers social activities, babysitting, and so much more for its congregation. But for the parents of a child on the spectrum, it offered a weekly challenge they just couldn’t overcome. Rather than perpetuate the “church equals pain” formula for their oldest child, they opted to remain home, a Christian family unmoored, at sea without a church family.

Andrew Whitehead, a sociologist, experienced this firsthand when he and his wife were told his children were “too disruptive” to be with the other children during services. Both of his children are also on the autism spectrum. Their nonverbal ways weren’t welcome.

“When my family needed our faith the most, we couldn’t attend because of our ‘disruptive’ children,” said Andrew in a Washington Post op-ed piece.

The situation inspired Andrew to use his powers as a sociologist to study the situation in a broader context. He found that children on the autism spectrum are twice as likely as their same-age counterparts without autism to not attend church. Children with developmental delays or learning disabilities are also 1.4% more likely not to attend church.

Compare this to statistics showing that children with other problems such as diabetes, vision, and hearing problems are no more nor less likely to attend church than their typical same-age counterparts and you’ll quickly realize that churches are indeed neglecting those who may need them the most.

Throughout the New Testament, Jesus frequently welcomes the children. “Let the little children come unto me,” he tells his followers when they try to shoo away those pesky kids who want to bother the rabbi. Throughout the gospels, he warns his disciples that they must become like little children in order to enter the kingdom of heaven. Clearly, God likes kids.

Why, then, is it so hard for churches to find a way to be inclusive to families whose little children do not conform to society’s definitions of normal?

These are children who may blurt out inappropriate things during quiet periods at church (my little friend who likes to shout “BOOBS” is a prime example). Or perhaps they can’t sit still, like the child I mentally nicknamed Metronome Boy because he tick-tocks to the hymns, standing in the aisle, like a little metronome pendulum. Loud music like the worship band may be too much for some kids or crowds or making eye contact.

What do we do for these families?

We tell them they aren’t welcome. As Andrew found out, as others have found out. Their children are dubbed “disruptive” and asked to leave.

Just when these families need the support of their chosen community — their faith community, who should be the first ones to stand beside them — they’re on their own.

Autism occurs in roughly 1 in 59 children, according to the CDC. But unlike my friend’s son, who coasts down the church aisle in a sporty yellow motorized wheelchair, autism, intellectual disabilities, sensory processing disorder, and learning disabilities display no outward signs.

Instead, we judge the parents of such children as if they’ve failed somehow to ‘control’ their child’s behavior. We don’t question our systems, our Bible classes, and nurseries where children play under the watchful gaze of a benign Jesus.

As I think about these children, with their hidden needs, and their parents, with their painful burdens, I feel like beating my chest, as we do during the Act of Contrition and saying, “Through my fault/through my faults/through my most grievous faults” as I beg their pardon and forgiveness.

I don’t have an easy answer. But the first step in solving any problem is awareness of it. And, as a wise person once taught me, naming it. I name this problem ignorance and I challenge every house of worship to find a way to support families struggling to teach their children the love of God when God’s love feels like pain searing through their miswired nervous systems.

All I can say is, “I’m sorry.”

I’m sorry for all the times I judged you and your child acting out in public. I’m sorry for the things I’ve said or done that added pain to your pain instead of eased it.

Help me to learn, Lord. Help me to be your love to these families and welcome them into your home as you would welcome them.