Church Part 1: "Born Into a Church Family."

This is our “church story.”

It is a three-part post about taking a child with special needs to church.

I tried very hard to shorten it. But it really is three separate experiences that are connected. In the first part, I will tell you about our first church family that Lilli was “born into,” and the challenges that arose as she grew. In the second part, I will tell you about our uncomfortable church visiting experiences when we moved. The last post tells about how I wanted to give up, but then we finally found a church that had a place for Lilli (and this is apparently rare). I told the story with details so you can walk a little bit in our shoes. It will be more meaningful that way, rather than just quoting statistics about churches and children with special needs.

Unfortunately, our story is very common. In the past few years, we have met many other parents who have had similar experiences. Many families have still not found a church, because there are not many out there that serve our population (families with children that have special needs). The most common stories I hear are either that families just do not go to church at all because they can’t find one that has a place for their child, or the parents take turns every Sunday staying with their child while the other one goes to church. And they never get to go together, or get involved because of this challenge.  

I am truly glad that we have this story to tell. It has opened my eyes to a great need in churches everywhere. It seems like this is an area of ministry that is often overlooked. My desire is to help churches become aware of this need.

I will not be naming any of these churches in my story. The names are not important, because hypothetically I could be talking about your church, or the churches nearby to you.

Lilli with the lillies on Easter Sunday - age 2

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Part 1: Born Into a Church Family

Before Lilli was born, church was...different for us. It is kind of like a church "Then," and "Now" in my mind. “Then” was when we were newly married, no children yet.  Lilli was our first baby, so that by itself changes everything. She had special needs. That turned our whole world upside down. I want to explain the simplest thing to you about going to that church before Lilli came along:

We could go.

I mean that in several ways. We could get there. We could go inside easily. We could sit wherever we wanted. We could sit together, for the whole entire service. We could go to church. Do not take this explanation lightly. We know what it is like now, for it to be very difficult to just go to church.

Before Lilli came into the world, my husband, Jasen, and I found a church downtown. We liked the church very much, so we joined it. We started serving. We went to a lot of the church events and got to know people. End of story.

Sound boring? So what, right?

The reason I started out by telling you that is because if Lilli had been born five years before we started going to that particular church, we might not have ended up going there. Know what would have stopped us? The getting to the actual sanctuary part. I mean Jasen and I, going to the service, together. At the same time. Because in order for that to happen, Lilli has to have a place to go.

We know now from experience, that visiting new churches with a child who has special needs can be very frustrating. You might be surprised to hear about an issue that does not seem to have much attention in many churches. But before I tell you about our visiting experience, I want to tell you about Lilli’s first church.

Baby Lilli was surrounded with love and prayers
from our church family.

When Lilli was born, she was born into this church family. We had already been at this church for over a year. We were involved and knew people well. They knew us before she was born, and were there when she was born. Her first few months of life were incredibly difficult, and they surrounded us with love and support. When we needed help, all we had to do was call someone we knew, and ask them for help. We dearly loved the people in that church, and they loved Lilli. They were very good to us and helped us immensely. I could go on forever about all the things we learned from being a part of that church family. I am so glad we were already there when Lilli was born. We met some incredible people and made lifelong friendships there. Some of those people read this blog. I want those people to know, before they read the next part, that we love them and that I hope these words I write do not hurt their feelings. I think that those friends who read this will understand that I do not intend to criticize anyone. Rather I want to highlight a need, and hopefully make a difference by telling our story.

Buddies from the minute she was born.

As Lilli grew, we had many challenges. One of those challenges was where Lilli would go during the church service.

This was a church of about 150 people, and Jasen and I were on the worship team there. We planned the service order and the music, and we led the worship part of the services every Sunday. We were very involved in serving. We truly loved it. Only, we had Lilli. So Lilli went into the nursery while we were in the service.

One of Lilli's biggest fans from our first church.

The nursery was fine…for a few years. She crawled until she was three, and played with baby toys for a long time. She was little for her age, and she could not talk. She fit right in.

But then, after a few years…she didn’t seem to fit in anymore.

One Sunday, a woman we really loved in that church came to me privately. She was teary. I could tell that she was struggling with what she had to say to me. She explained that Lilli was getting too big to go in the nursery with the little babies. After all, she was five now. When other children turned three, they moved on to classes. Not Lilli. She had stayed in the baby nursery.

She threw toys and walked around and tripped and fell, with little babies that were crawling around on the floor nearby. I understood completely. It really was not safe. And Lilli was not communicating back then, so we had no idea what she could understand. (Well, she was trying to communicate, but we had not figured all of that out yet). Maybe she could try going to a class with other children. We said we would figure it out.

There were several people who offered to stay with Lilli and take her out of the nursery. One was a dear older gentleman with a kind heart. He had health issues, but he loved Lilli and wanted to help. He walked her around in the hallways sometimes. He watched her while she crawled up and down the steps over and over. There were others who helped with watching Lilli too, in the hallways and empty rooms. We did that for a little while, but really we felt that Lilli should be in a class with the other kids. Except, where would she go? She would not be able to do what other four and five year olds could do. Maybe the three year old class? Even that seemed too advanced.

There was no easy answer. We tried to think of where Lilli could go, if someone could be her “aid” in one of the children's classes. She could not go by herself, for many reasons. She needed one-on-one attention and help. It was a little tricky to figure out who would be with Lilli during the service every single week, sitting with her and helping her in a class. It needed to be someone consistent. This was tricky because most of the people that were great with Lilli were already serving in other ways, and we did not want to ask them to be with her every week.

We decided to look for help outside the church. In hindsight, I’m not sure that this was wise. But understand that there were no easy answers. We thought this might work.

We hired someone. We found a girl who came and trained at our home, and got to know Lilli. I spent hours with her, explaining everything about Lilli and how to help her. I was planning to have her be Lilli’s “Sunday helper” every week. She would go to church with us and stay with Lilli in a Sunday school class, and it was going to work out just fine. But then the girl stopped showing up, and I did not hear from her for weeks. By the time she randomly showed up to get her last paycheck a month later, we had just started taking turns doing it ourselves. We were moving in a few months, so we'd just do it until we moved. 

This was the beginning of our turn-taking experience at church.

Jasen and I decided that Lilli would go into Chloe's three year old class with her (even though she was five), and he and I would just take turns going every other week with Lilli to be her "personal aide." There was one service. Every other Sunday, I was in Lilli's class with her. She did love it, most of the time. She liked the music. I tried to help her participate. She loved being with the other kids. She didn’t really know how to interact with them other than to try and touch their faces. When the other children sat at the table and colored, I tried to help her hold a crayon. But she couldn’t. She hated it and pulled her arm away. When the children built little bridges out of Jenga blocks and drove cars over them, Lilli sat near them and put the Jenga blocks in her mouth. I sat next to her and pulled them out. When the other children sat and listened to a story, she squealed happily and tried to crawl around. I tried to keep her sitting in the group, which was difficult. Her favorite part was when the kids danced, and it brought me joy to see her stand in the middle, smiling while the children danced around her.

But I felt tired. When it was “my” Sunday, sometimes I felt like I had to drag myself there. I started to feel like maybe it was not even worth going. I was the only mother in the class with her child. The other kids were doing what three year olds can do. It wasn’t the best place for Lilli, but there was no other place. And my heart was not in the right place. I tried to make the best of it, but I began to struggle with the whole situation.

On the opposite Sundays, I felt other feelings. I was joyful that it was "My turn to go to the service!" But then I went to the service without my husband. At first I was up front, playing the guitar and singing without him. Then we stepped down from the worship team because we were getting ready to move out of state. So I sat in the service without him. I felt a little sorry for myself. Maybe some people think that was selfish of me. Maybe it was. I'm just being honest and telling you what was in my heart.  I was having a difficult time with these circumstances.  But that was just the way it was.

I did not want to have to figure this out. I know it sounds awful, but I was with my child every day, overwhelmed by all of her special needs and constant care. I spent all of my time figuring out things for Lilli like school, therapies, medicine, feeding her, helping her in so many ways. Going to church got added to that list, and it all just felt so exhausting. Fortunately, it was temporary, until we moved. Or so we thought.

Having a child with special needs that is born into a church family is not easy. But despite the challenges, at least we could still be involved. I want to emphasize that we loved that church. We were a part of that church family. They helped us immensely with Lilli in so many ways. And everyone there loved Lilli. We tried to make it work on Sunday mornings. It was not ideal, and it was pretty tiring at times. But now we knew what it was like to have a child with special needs born into a church.  I have heard stories similar to ours. The church family surrounds the family with help and love. The child grows and the church family figures it out along the way.

Years later, I look back on that and I think, well, it wasn’t really so bad. If we had stayed there, we would have asked people that were comfortable with Lilli to help us take turns, and we would have figured it out eventually. But then…

we moved away.

And that was when we discovered how difficult is to visit a church… with a child with special needs.

I will tell about what it was like to visit churches with a child that has special needs in my next post, “Church. Part 2: No Place for Lilli.”