Where Lilli Blooms: Church. Part 2: "No Place for Lilli.”

(This is part 2 of a series of posts on church with a child that has special needs.)

No church is perfect. They all have flaws, because they are run by people, and people are imperfect. Our pastor has said, "If you have not been unintentionally hurt in some way by our church yet, you probably will, and we're sorry." Because churches are run by people, and people make mistakes. But I still love my church, passionately so. And I love the "big C church," which is all of the churches together as one. I hope the tone of these posts reflect my loyal love for the Church, despite the areas we need to continue to work on. The Church is a work in progress, as we all are.

Our family of four when we moved here...Josh is on the way.

Continuing the story, we left that state and moved to a place where we knew NO one. We moved so Jasen could go to school, leaving everything and changing careers so he could help Lilli and others like her. (But that's another story.)

When we got here, we were stumped. How do you find a new church in a new town, with kids? It seemed much easier when we were just a couple. We had two children now. Lilli was five, and Chloe was two and a half. Then, surprise! I found out I was pregnant the week we moved in. Now we were going to have to find a new church with a child that had special needs, a two year old, and me with morning sickness.

I didn't want to look for a new church. I felt completely overwhelmed, being in a new place, pregnant and unpacking. But we needed to start sometime. We wanted to worship with a group of fellow believers. We wanted to serve others. We wanted to find another church family to be a part of. We also knew that we needed a break. Honestly, we felt a little burned out, and needed to find a church where we could attend for a short while and get settled in, before we started serving again

We were in great need of rest and time together. A few minutes to just breathe. And yet we were unable to find it. We were learning the new area. We did not know one person. Certainly we did not have a babysitter we could leave Lilli and Chloe with. We were basically older "college students" now with student loans and a strict budget. We did not have the money to go on a date, let alone find a babysitter for a child with special needs, and a toddler. We left our old circumstances with the hope that we could help our daughter more in a new set of circumstances. We were following the obvious signs that God was giving us, to move and make this change. Even though we knew it was the right decision, it was not at all easy.

It is important that you have a feeling of tiredness in your heart for us as you read the next part of the story. It was a stressful time for us, filled with unknowns. Everything about moving to a new state was magnified by the “special needs” aspect of our oldest child. New doctor for Lilli, new neurologist, new therapists, new insurance, new programs with paperwork for a child with autism, new school with new teachers, tons of meetings, new IEP paperwork, new house for her to learn to navigate without bumping into walls. Then we had to figure out everything for the rest of us, including the baby on the way. During that time, I wrote in my prayer journal over and over that I needed rest. Just rest. And I was not finding it.

That first Sunday in our new home, we put the girls in the car and drove a few minutes down the road to a new church. It would feel strange to stay home on a Sunday. We always went to church. We simply picked this church because it was close by, and we liked the name. It looked small. We thought small might be good, since we came from a small church that we had loved.

We did not have a handicapped parking placard back then. I was in denial about that for a few years until I finally broke down and admitted that Lilli needed one. So we parked in the main parking area and Jasen carried Lilli in his arms because she still tripped and fell so much. Greeters met us at the door. Introductions were made, and they asked about putting the girls in Sunday School classes. I felt like I was going to be sick from being pregnant in that summer heat, but I tried to force a smile. Chloe was holding my hand, and Lilli was in Jasen’s arms.

"This is Chloe, she's almost three."

Then we all looked at Lilli, paused, and began the "Explanation Process:"

This is our daughter Lilli. She has special needs. (Awkward pause while the uncomfortable person tries to figure out how to ask what's "wrong" with her without using the words "What's wrong with her?")

Lilli has autism and cerebral palsy. She has seizures. She can't talk. She has a hard time walking and she trips a lot. What, oh Chloe? Yeah, ok, she can go in that three year old class, that's fine. Great…. Um…

Another pause while we try to figure out where Lilli goes.

Lilli? Uh, okay, no, she can't really go in with the other five year olds... (In a whisper: She's not potty trained.) She can't have regular snacks. Lilli chokes sometimes, she can only have the food we brought for her. She's on a special diet for controlling seizures. No, she can't have a juice box. She usually does not have seizures when she is awake so as long as she doesn't get sleepy, we're OK. Oh but sometimes she does have seizures when she is awake, and we should tell you what they look like in case…

...ok...we'll...just come into the class with her. We'll just...take turns.

We all ended up in the toddler classroom. It was Chloe, Lilli, Jasen, and me, in a small room with two other three year olds and two teachers.

Awkward!

We sat in teeny chairs and told the teachers about Lilli's special needs. We could hear the music coming from the service down the hall. After a little while, Jasen asked me if I wanted to go into the service. I didn’t want to go to the service, late, by myself. Frankly, I just wanted to leave all of that awkwardness and go back home. I asked Jasen if he would go to the service and I would stay with Lilli. I weakly made conversation with the teachers, who had no idea what to do with Lilli. They seemed nice, but scared of her. They were quiet and unsure with us. They told a Bible story to the children. I sat on the floor with Lilli next to a pink dollhouse, and repeatedly pulled the dollhouse people out of her mouth. They tried to get the children to the table to color a picture. I explained that Lilli could not color. She could not hold a crayon. I felt so uncomfortable being in the classroom with the teachers. They were a young couple, newly married and they said they had not been teaching that class for very long. I felt like we were making them feel uncomfortable. Lilli and I sat on the floor with the toys in the corner and I counted down the minutes until we could go home.

We did not go back to that church.

They were nice. But we were tired. Even if we had continued to try and go there, it would take a long time for us to get to know people well enough to figure out who could watch Lilli. What class would Lilli go into? She would need a one-on-one helper. I envisioned months of taking turns and re-telling Lilli's special needs to every single person there, and taking turns sitting in that toddler classroom. It was too much. I did not want to feel that uncomfortable feeling every Sunday. Somehow, now, a small church seemed... too small.

We had visited one church so far. Finding a new church takes time. You have to visit more than one.

The next Sunday, we tried a second church. A bigger one. A little further away. My sister and niece were visiting, and they offered to help with Lilli so Jasen and I could go into the service and check it out. We parked waaaay far away from the door because the parking lot was packed, and carried Lilli in. It was a large church, built in an old warehouse, with parking attendants, and a little coffee cafe near the entrance. It had a nice appeal to it, building-wise. It was impressive as we walked in the door. We went straight for the kids section to find out where to check in the girls for class. The kid's classrooms were adorable. The hallways were painted with bright designs, and there were tree sculptures and park benches in the hallways. We were hopeful.

But then we got to the kids check-in person. She did not know what to do with Lilli. It really threw her off. They did not have a place for kids with special needs. We all stood there for a moment, trying to figure out what to do with her. It was awkward. It was upsetting. It made me feel so out of place. How could this be? How could there not be any other children with special needs in this huge church?

The service was starting. My sister and niece insisted that we go to the service and enjoy it, and they would sit with Lilli in Chloe's classroom. Again, we put her in with Chloe, the two and a half year old sister that had already surpassed five year old Lilli in development. My sister waved us off, telling us to enjoy it and they would be just fine.

Jasen and I sat in the back in case we needed to leave because of Lilli. We knew it seemed rude, but we kept our cell phones on vibrate on the seat next to us in case my sister needed to get us. Seizures trump social etiquette.

When the service was over, we went to Chloe and Lilli's classroom, but Lilli wasn't there. My sister was sitting with her in an empty classroom down the hall. She explained that they took Chloe and Lilli to the classroom together, and the teacher seemed stressed and unhappy. She completely ignored my sister and niece, and did not even acknowledge Lilli. My sister tried to explain to her that Lilli had special needs, and that they were there to stay with Lilli so we could go to the service. The class of toddlers sat at the table and made a craft, and then they had snack. Lilli could not participate in any of that. She could not even sit in a regular chair at that age. My sister took Lilli out. Lilli was happy to explore an empty classroom, making squeals and chirpy noises for a half-hour while they waited for the service to be over.

My heart sank. It seemed like a great church. It was certainly big enough that I thought there might be a class for Lilli, or volunteers who could help us. There were tons of young parents and kids. It was so bright and cheery. But there was no place for Lilli. Without my sister and niece there, we would have been in that empty classroom with her during the service.

We did not go back to that church, either.

I felt frustrated. I looked at the church ads in our new phone book. I searched online. When I typed in the name of our town, "Special needs" and "Church," I came up with nothing. We asked our new neighbors. Jasen asked professors at school. We decided to try a third church.

This church was medium-sized and pretty traditional. We found the kids' check-in desk and filled out paperwork with their information. Then we began "The Explanation Process" again.

Of course there was no class for Lilli.

We made the plan to take turns, again. I wanted to go in with Lilli first. I lost interest in this church the minute I realized that yet again, there was no place for Lilli. I was tired of this already. I thought maybe we might start watching church online, or just read some really good books. Was this really worth it? Jasen was more motivated than I was. He was meeting people and shaking hands. I wanted to go home. This is coming from someone who was raised in church and loved the Church. Only a few months ago, we were standing up front leading the worship songs. How could we find a church in our new town when there was no place for our daughter? I was starting to see that this was a problem, not just in one church, but many. What did other families with children with special needs do about church? I wondered.

Again, we put Lilli in with Chloe, but this time the class was multi-aged. That was a little better. It was a large class. The children sat on the rug while one teacher told a story with a puppet and some pictures. Lilli wanted to touch the walls at the back of the classroom, because there was a large painted mural of a forest scene. She liked the deer in the painting. She touched it, and sniffed it. She stuck her tongue out to lick it but I stopped her. She was distracting some of the children who were sitting over on the rug for the lesson. They were watching Lilli instead of the teacher. I tried to make her sit with me on the rug with the other children for a few minutes. I held her in my lap and held both of her hands, trying to distract her and keep her with me. She made happy, loud chirps and squeals that interrupted the teacher’s lesson. Every little head whipped around to look at her every few seconds as she made noises and tried to crawl away. I felt so out of place. I tried to smile. But I was battling with that uncomfortable feeling of curiosity and stares we always get from others. I did not know anyone there. The children did not know what to make of Lilli. The teachers didn’t either.

When it was snack time, the older teacher passed out cups with Fruit Loops, and I inwardly groaned. "Would she like a snack?" she sweetly asked me. All of the kids were happily eating their Fruit Loops at a long brown table, while Lilli stood across the room with her nose stuck on the window, looking outside. "No thanks," I answered for Lilli.

"Are you sure? Here, let me get her some. Here, honey." She walked over to Lilli in the corner by the window.

"No, that's ok, really, she can't...have those. She's on a special diet to help control her seizures..and, thanks... no thanks." She stood there and paused for a minute, not knowing what to do for us. I felt so uncomfortable. Really I can be a pretty bold person. But who enjoys being the new person in any situation? I don't.

Jasen came in and switched places with me. Saved! I snuck into the back of the service by myself, so obviously late, and obviously a visitor. But later, I found out that Jasen ended up taking Lilli out, and he sat in an empty classroom with her for the rest of the service. She was not participating at all, and she was distracting to the other children, so he just chose to take her out. When the service was over, I met Jasen at the classroom. We spoke with a few people and shook some hands while Lilli tried to play in the fountain. Again I felt disappointed. I desperately wanted to leave. I could not wait to get out of yet another situation where we did not seem to fit.

Later that week, Jasen spoke with the pastor of that church on the phone. They had a long discussion about Lilli. The pastor suggested that we come to that church and start a program there for children with special needs, and that we run it. We had only visited there once! My husband explained to the pastor that we were not in a place to do that right now. I was pregnant, he was starting school, we had just moved here and we were overwhelmed and just plain exhausted. It depressed us, to think that if we wanted to go to church, we might have to start our own, brand new program, for Lilli.

We did not go back to that church, either.

Three churches. Nothing in ads or online about a church with a class for kids with special needs. I thought maybe Jasen might just go and find a church without me, and I could stay home with Lilli. I was born and raised in church, I'd been to church all my life. But having Lilli made it so hard to visit new churches. I felt so discouraged from those three visits and all of our asking around, I just didn't even want to go try anymore.

One day, I saw a neat looking bumper sticker on the back of a car. It was the name of a bigger church about ten minutes away. I looked it up online and found a great website, with cool graphics and music playing. OK, this time we were going to be smart. We would ask before we went. There was a "contact us!" link on the website. I wrote a detailed email, explaining that we were looking for a church, and our daughter had special needs. I wrote our phone number, and sent off the email. No one responded. So Jasen picked up the phone a few days later, and called the church office. He left a detailed message on their voicemail, again explaining about Lilli, and how we were wondering if they had anyone that could be with her in a class to help her while we attended service.

No one ever returned our email or called us back.

That made a big impression on us. I know some of my Facebook friends go to this church, and they might be shocked to know that. I wish someone would have returned our email or phone call at least, and told us nicely that they had nothing like that for Lilli. But we waited and heard nothing. We never went to that church.

We did not know what to do. It was beginning to look like we would not be able to go to church unless we took turns. We continued to ask people we met, "Where do you go to church? Does your class have a place for children with special needs?" No one knew of a church that had a class like that. Maybe it did not even exist.

Do you feel a little tired after reading this experience? Do you think that the average family would continue to try visiting churches, when they have to split up and one has to sit in an empty classroom with their child for the service? Maybe you can understand why there are not many children with special needs in some churches.

Then, my niece gave us the news that changed everything. She'd heard from someone she met at college about a certain church. It was a half hour away from us, in a nearby city. She looked it up online, and they actually had a class for children with special needs. We were ecstatic. All from one little blurb on the website. We checked out the rest of their website and decided it was definitely worth a visit.

I'll tell you about it in "Church: Part 3. The Church that Had a Plan."