‘It’s been 5 years since I set foot in church. I have no intention of going back.’: Special needs mom refuses to bring her kids where ‘they’re not fully embraced’

More Stories like:

“It has been over 5 years since I set foot in a church building. I doubt I’m going back. Check that, I have no intention whatsoever of going back.

The reasons I stopped are complex, a woven tapestry of questions and difficulties, which ultimately left me questioning, then abandoning my faith. Not the least of which is the problem of suffering, which is too big of a topic for today.

I could write for days about the many layers of it, but I need to start with the single biggest hurt. A hurt so deep it took five years to scrounge up the courage to address it.

It came down to diapers.

Ben has Hirschsprung’s Disease. For him, the disease, complicated by other medical conditions and his blend of intellectual disabilities (Down syndrome, autism, and ADHD) means that he still wears pullups as a teenager, with no end in sight.

Why does that matter?

Because before he had his bowel management program, and even now sometimes, he has bowel movements that he can’t control.

Poop is where church ends. Poop is the special need that doesn’t get met by ministry. We had ONE volunteer who changed pullups. If she wasn’t available, I was called out of church, called out of volunteering for the girls ministry, and often it was more than once in the hour or two we were there.

Believe me, I know that big kid pullups are not pretty.

And I know that there are concerns about volunteers being able to give privacy for the changes and still have the necessary oversight to ensure that he is safe.

But it was never even about that.

I could try to find a nice way to say it, but the real crux of the matter is that ministry comes with an asterisk.

My boys have been lost in church, to be found in the boiler room or locked in an elevator. They are ‘hard’; they have never done well in inclusive classrooms or fit into programming. We always kept a smile on our faces and kept trying.

Then, one day, the message got through to me. Even in a church with a ministry designed for people with disabilities, I was doing most of the work for my kids to even be there. I was getting called out of services and volunteer time (please note, I faithfully volunteered 6 or more hours a week), and I still carried most of the responsibility for keeping my children safe and cared for when they accompanied me to church functions.

When the message finally got through to me, it broke me. My boys were not wanted, they were only included if I was willing to meet all of the ‘unpleasant’ needs.

When I stopped going, I told myself we would try again.

After two churches, a special needs ministry camp, and about a dozen years of failure and frustration, I had lost the heart, and we still haven’t returned. And we won’t.

I have found the incredible value of radical acceptance. There is something glorious about caring for a human being who has bowel movements in their briefs and has the chutzpah to resist being changed. Recognizing this has brought me past the end of myself; changing the pullups of a teenager has brought me to a place of radical acceptance. My son is worthy and wonderful, acceptable and embraceable exactly as he is. I want him to be with people who recognize that.

The church, with only a few noteable exceptions, is not a place where people recognize that. The message is clear. He doesn’t belong there. We don’t belong there.

I am no longer bringing my children ANYWHERE that they are not wanted and fully embraced.

For a time I was ashamed that we couldn’t make it work. I’ve since recognized that no matter what I did it would not have worked. Ministry comes with an asterisk. There are still lepers and untouchables. There are still many who go around the hurting people, carefully avoiding the untouchables. There is no irony to me in the story of the Good Samaritan, it still plays out today. The chosen skirt the untouchables still.”

From podcasts to video shows, parenting resources to happy tears – join the Love What Matters community and subscribe on YouTube.

Courtesy of Alethea Jo

This story was submitted to Love What Matters by Alethea Jo. You can follow her journey on Facebook and her blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read more stories like this:

‘Mom, I’ve decided something.’ My teen son came out as an atheist. My response? I simply said, ‘Okay.’: Christian mom accepts son’s lack of faith, ‘love is our spiritual center’

‘We don’t go to church.’ I get shocked looks, promises of prayer. ‘How will your daughter know right from wrong?!’: Agnostic mom ‘unapologetically’ raising daughter without religion

Do you know someone who could benfit from reading this? SHARE this story on Facebook with family and friends.

 Share  Tweet