How the Church Failed Our Family Because of My Child's Disability

I grew up in the church. Scratch that. For the better part of my youth, I lived at the church because of how often I was there: leadership, worship, small groups, ministry training, etc. Some of my most cherished memories are with my high school youth group and a big purple school bus we traveled around the country on; playing euchre and not getting enough sleep. Although my late teens and twenties steered quite a ways from my straight-laced days of youth, I did find my way back to a church in the state my husband and I relocated to after college. I became involved once again, finding what I thought would be our “church family.”

I played on the worship team regularly and joined small groups. I hoped to build relationships and friendships within a large and growing church where it could be easy to fall through the cracks if not “plugged in.” We “dedicated” both of our children at this church, proclaiming that with the support of that church family, we would teach our children about Jesus.

So what happened?

I continued to play on the worship team through my first pregnancy and appreciated the meals and help provided to our family after our son was born. His birth was traumatic and we spent two weeks in the NICU and then another three weeks on home oxygen therapy after discharge. I remember just wanting to be home for Christmas and crying tears of joy during the Christmas Eve service, rocking our new baby (still on oxygen) while singing “Silent Night.”

As our infant grew into a toddler, it became a bit of a challenge to go to church or make it through Sunday service. While the children’s ministry was large and as accommodating as possible, when our son’s behaviors and separation anxiety grew, we would barely make it through the first song or two before our number would show up on the, “please come get your child” board. I always hoarded an aisle seat in anticipation of what was coming. The volunteers were apologetic, letting us know they tried “everything” but that mom or dad would likely be the only ones able to calm him down. Because we usually found him in a state of near hyperventilation, “calming down” was not something attained quickly.

 

I also attended a popular Christian-based mom’s group for a while. The last meeting I attended was shortly after my second child was born. The lead volunteer in the childcare room came to get me stating they were afraid my son  — 22 months old at the time — was going to hurt himself because he was ramming into the door trying to escape. I tried to connect. Really, I did.

Sundays came and went. My husband knew long before I would admit it that church was not working. And while there is still a part of me that wants to believe we will try again someday, I know with certainty it will not be where we were previously attending church.

Why? You see, after we slowed down and stopped going, not once did anyone reach out to say “you have been missed,” or “how are things?” “Motherhood is tough. Let’s grab coffee and talk.” No One. No one on the worship team — not even the worship pastor. No one from a small group. No one. The support promised each time we dedicated our children in front of the congregation was nowhere to be seen when we needed it most.

In the age of social media, many of the people we attended church with or played on the worship team with knew of our son’s eventual autism diagnosis, as I do not shy away from it. We also live two doors down from one of the Children’s Ministry staff, and her children have begun to play regularly with mine, asking once if we used to go to “such and such” church. While I in no way hold any one person responsible for an entire church failing to wrap its arms around a family when it needed them, I feel it is important they know what happened and to send a message to other churches like this one: if a family as connected as ours can be forgotten and feel as though their presence did not matter at all, what about all the families who come through for an even shorter time?

Should a church be equipped to serve children with disabilities on Sunday morning? Maybe a better question is, should a church be equipped to love? Please don’t have the pastor constantly give “friendly reminders” to parents to use the amazing Children’s Ministry so kids do not “disrupt the message.” What I hear is this: your son may blurt out his excitement about something at an inopportune moment, so please take him to Sunday School but we do not have the resources to work with a child on the autism spectrum. Soooooo…..where do we go? My family should belong in church, too.

A few years have gone by. I feel my son would likely handle a Sunday School setting much better but we already experienced how the church fails to include and love kids and families like mine. We may not find a traditional “church family” again, and that is fine. Our family is more than OK — we have the love of friends and family, they mean more than they will ever know. I can handle knowing that our family is not-so-secretly judged for not attending church because our family is already judged enough for the behaviors our autistic son displays when out in public. Instead of handing out a card to explain what autism is or wasting my breath by telling the people with “the look” why my son is behaving a certain way, I now really just want to ask where they go to church. I imagine that question would be answered with a confused look, then I would state, “I know to never attend there.”

I write this because I have had this on my heart for some time and I believe it is important to get this message out. I know I am not alone in this experience. I also know this is by no means representative of all churches and some do include children and families like ours well.

Remember to reach out to people and invite them to go to church, the park, a birthday party, etc. A family with kids with disabilities may not always be able to make it, but the invite itself means more than you may ever know.