Church. Part 3: "The Church that Had a Plan."

(This is part 3 of a series of posts on church with a child that has special needs. Part 1 is about how Lilli was born into a church, but grew out of the nursery and had no place to go. Part 2 is about what we experienced when we moved and visited churches, and discovered how hard it is to find a church that had a place for Lilli. This continues the story of church visiting...)

In the Bible, there are tons of stories about people with special needs. Jesus paid particular attention to them. He spent time with them, healed them, and loved them. I love these stories. Jesus heals people who cannot speak. He heals people who have seizures. He heals children. I love these stories the most, because I have a little daughter who has seizures and cannot speak. I love these stories because they show how He cares about people with special needs. Those stories were important enough to be written in the Bible. That is very significant to me. I always imagine how Jesus looked at these people in their eyes. He did not look away and act like He did not see them. How He did not feel awkward or uncomfortable, he just loved them. He touched people that no one else wanted to touch. He spoke to people that no one else felt comfortable speaking to. I love that so much about Jesus.

People with special needs matter to God. They need extra help. A lot of extra help. In the Church, they belong to part of the church family. If they are missing from the church family when we gather together on Sunday mornings, it might be because we are not making it possible for them to get there. If the building is handicapped accessible, (which of course it should be), the family might get inside and find that there is no place for their child. Who wants to go to a church where they feel like there is no place for one of their children?

When my niece told me about a church nearby that had a class for children with special needs, we made plans to visit it right away. We looked at the website and decided it looked like a great place to try.

On Sunday, we packed up the girls and diaper bags, followed our directions and drove a half hour away to visit this church. On our way, we passed the small church we had first visited, two minutes away from our house. I looked at it out the window as we drove by, thinking about our awkward visit there. I hoped that this visit would finally be the church that had a place for Lilli.

It was a huge church. When we arrived, parking attendants waved us way to the back of a packed parking lot. A golf cart driver from the church picked us up and drove us up to the door. Never did I dream that we would visit a church like this. It was big, and not at all traditional.

We found our way to the “First Time Visitors” station to check in our kids. Yes, they had a special class just for Lilli. The volunteers escorted us to Lilli and Chloe’s classrooms, and this is the moment I remember vividly. A young, smiling teacher came out of Lilli’s classroom and got down on the floor in front of Lilli. She smiled big, right at Lilli, and looked in her little face and said excitedly, “Hi Lilli!!! My name is Morgan! We’re so glad you’re here!”

Lilli instantly wrapped her arms around Morgan’s neck, and hugged and kissed her. “She just kissed me!” Morgan said, and looked at us like her heart was melting.

I could have cried. We felt relieved and welcomed. Even now I am feeling teary just remembering it. They were not afraid of Lilli. They were happy to just meet her! They looked right at her and talked to her instead of asking us about her special needs first. That made the difference for both Lilli and us. When we began to explain about her seizures and special needs, Morgan and the other volunteers listened intently with confidence. They were fine with all of it. It was no problem. There was a medical team that could be called if necessary. They would put our name up on the screen in the service if they needed us. They had toys and fun things for the kids. Most of all, they were excited to play with her. There was not one hint of awkwardness or discomfort. They encouraged us to go and enjoy the service.

We walked away, child-less, and a little stunned.

During the worship songs, we both got emotional. I could not believe that we had just dropped our kids off and went to the service, together. It felt so…normal. Jasen took my hand and squeezed it. We looked at each other, knowing that we were both overwhelmed with the simple fact that we had not been able to go to a church service and sit together in a long time. The service was dark while the worship band played, and I was glad. I had tears of thankfulness streaming down my cheeks while we stood and sang. When we sat down together to listen to the message, I felt rest in my soul, the rest that I had been yearning for.

Some parents have never experienced that.

I do not have any hard feelings about our experiences with any of these churches. Instead, I have a passion for change, because I realize that our story is common.  I think that before change can happen, there needs to be awareness. This is taking me down a new path as I serve in our church, seeking to serve families like ours and help them to be able to experience what we ourselves experience every Sunday.

Visiting a new church is hard. Going to church with young children is even more difficult. But going to church with a child that has special needs, seems almost impossible for many families. But it doesn't have to be. I think about our personal experience, and wonder what would have happened if we'd given up. I think about the hundreds, well, thousands of other families just like us.

And I just want the Church to know:

It wasn’t the size of the church. It wasn’t the music. It wasn’t the color of the walls, or the graphics or the videos. It wasn’t any of that. We mattered. We were not invisible. We were not made to feel unwelcome, uncomfortable, or ignored. Our child was welcome, and there was already a place for her when we arrived. A fun place! They were not afraid of her. They were not intimidated by her needs. There was no scrambling or awkwardness when we checked her in. It seemed like the easiest, most natural thing to just find her class and drop her off. This church had thought about the fact that families might come and have children with special needs, and those children would need a place to go. And it already existed.

I know what some of you skeptic-types are thinking. Well, you can have a program like that in a big church. You have more people to help. You can’t do that in a small church.

Maybe that’s true. But maybe…it’s only partly true. I wonder how we might have felt if we had visited any of the other churches, and had the greeters or the childcare check in people treat us a little differently. I wonder what it would have been like if they had not seemed so instantly uncomfortable and unsure of what to do with us. Their awkwardness made us feel awkward and unwelcome. I wonder if we would have felt a little better if the church staff had prepped their teachers to make a plan for what to do if they ever had a child with special needs come to visit their church. What if there was something on their website that said, “If you have a child with special needs, we would love for you to bring your child, please contact us before you come so we can make arrangements for our wonderful volunteers to be ready to care for your child….” What if the last church had simply called us back? They obviously did not have a plan.

This is the difference: “Hi, we don’t know what to do with your child!”

Or: “Hi! We are glad you are here! And we are glad you brought your child with special needs with you too! We were thinking of you, and we have a place for her!”

I said this in a post a few weeks ago: if you look around your church, and you do not see any children with special needs, ask yourself why. Is it that there just aren't any children with special needs in your community? I doubt that. Where we live, there are hundreds of families. Hundreds. But I see them all the time, while you might not know about them. I see them because there are special needs classes in the schools. We see them when we go to the clinic for therapy. We see them at our church. The therapists and teachers that work with our kids see other children with special needs all day long. All you have to do is look at your local school or hospital. Do you know a nurse, teacher, doctor, or a therapist? Ask. You will find these families. Look up the local therapy clinics nearby. They are going there for appointments every week. I know that I am leaving out the fact that if there are children, they grow up to become adults. If you do not have any adults in your church with special needs, that is yet another problem.

But when you think about these families, would you feel comfortable inviting them to your church? Would there be a place for their child?

Back when we first started going, for a few months, there were Sundays that Lilli was one of just a handful of children in that class. Some Sundays, she was the only one there. It did not matter. They treated her like gold. They prayed for us, sent us cards of encouragement.  Lilli loved going to church. They had a ton of great toys, music, and a fun tent for her to crawl in. I was worried that the church might decide that it was not worth it to have a whole room with volunteers for just one or two kids.

I was wrong to worry.

Because now, there are new families with children with special needs that have found out about our church. The word has spread, and it will continue to spread and grow. This is my new passion, to spread this word to families in our community. I want other churches to take a good look at this need.

If you create a place for these children, and you invite a few families, the word will spread. These families have nowhere to go to church! Some of them have actually been made to feel bad about their childrens’ autistic behavior and disruptions by ignorant members of their church family. This ministry is sorely overlooked in many churches.

I recently asked a friend about her church. I have known this family for over a year, and they go to a different church than we go to. They have two boys with autism. A few weeks ago, I asked her, “What do you guys do when you take the boys to church? Is there a class for them?”

Want to guess her answer?

“We take turns.”

She and her husband take turns sitting with the boys while the other parent goes to the service. They have done this for years.

You can make a church building handicap accessible. But once the person with the handicap gets inside the church building, will they have a place to go? Adults with special needs can sit in a service, if they are able. But what about the adults who are not able to sit through a service? What about the children with special needs? The teenagers with special needs? If the current CDC statistic for children diagnosed with autism is one in fifty five, where are all of these families going to go to church? Theoretically if you look at fifty five families in your church, one of those families will have a child with autism. But if there are no children with autism, or any special needs at all in your church, there is a problem.

I want churches to look at this issue. My heart yearns for families like ours to be able to simply go to church – for parents like Jasen and me to sit together in a service, and not worry about their child. I want to find other families like ours, and tell them about my church. I want them to come to visit our church with their children. I want other churches to have a place like this for children!  I desperately want families to come and experience what we experience, because it is so rare! Should it be this rare? I want them to feel like their children are loved, expected, and welcome. I want them to know that their children can come and squeal, crawl, jump, flap their arms, and run around in my church, and it will not be awkward. Their children will be shown the love of Jesus in my church by people who have a heart for serving children who have special needs.  I want them to know they there is a place for their child at our church. Wow, do I love our church. Big, and far away, and imperfect and all, I love it dearly. For so many, many reasons. But mostly, because of one simple reason:

We can go, because there is a place for Lilli. 

For the rest of the story, about our serving and small group experience, please click here

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."

December after our move...Lilli was 5 and Chloe was 3... Josh was coming in two months.

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.”

Telling Someone Else's Story...and Why I Must Tell It

I sat and listened to a woman I'd never met before, as she told me about her two young children. They are undiagnosed, ages two and three. She is on a year-long waiting list to get them in to a developmental pediatrician so they can get a diagnosis. A year! She cannot get more intense or specific services for her children until she gets that official diagnosis. They have early intervention services, with speech, occupational, and physical therapies. But she waits on a long list to get more help. If they do get a diagnosis of autism eventually, they will be put on another waiting list, which is two years long, to get behavioral therapy - ABA therapy for her children.

Despite the OT, PT, and speech therapies (which are one hour each per week) she struggles alone.  She has thousands of unanswered questions. She asks me, "What are the symptoms of autism? How do I know if my children have autism?" She does not even know where to begin. She has no idea what to do about the future. She lives a difficult life, waiting for answers. When you don't have a diagnosis, you don't have direction. When you finally hear the doctor say, your child has "this," at least you know what to focus on as far as therapies and programs. Well, to some extent, anyway.

In the meantime, while she is waiting, this mom's life is on hold. She cannot take them to the grocery store. She cannot take them to restaurants. She cannot get a babysitter. They have stopped attending church because of her children. She cannot take her eyes off of them for one second. She has a job, but she says her kids are in danger of being "kicked out of daycare" because of their behavior. One child is nonverbal and eats all kinds of objects, such as metal screws, crayons, and recently her own feces. The other child is extremely aggressive, has anxiety and volcanic melt-downs in any public place where there are crowds or groups of people, and bites others. The mother struggles to figure out what the non-verbal child wants - as simple as what she wants to drink. The little girl cries and cannot communicate her basic needs. They have feeding issues such as choking often on certain textures. They do not sleep through the night, ever. And...her pediatrician tells her nothing is wrong. Want to know the craziest part? We go to the same pediatrician. Yep. I shook my head and told her that she can't completely depend on the pediatrician for help with this, unfortunately. The pediatrician can make referrals, but the mother will have to ask for them. This mother will have to learn how to advocate and find help for her children by herself.

Can you imagine her life for one moment? Can you imagine trying to keep a marriage from falling apart and a career afloat while dealing with these issues every second? I hear stories like this and I think, why is this mother being made to wait like this? Why is there such a problem with getting in to see a developmental pediatrician? Why is she not getting more intensive therapies? Why on earth is the speech therapist not helping to establish a simple communication system for this frustrated little girl?

I think, What can I do? How can I help this woman? I hadn't even known her for ten minutes and I wanted to help her. You probably feel sympathetic and helpless just reading about her, and you have no idea who she is. I gave her some advice about advocating for her children and researching certain therapies. I showed her some of Lilli's old PECS pictures and explained how she could make some simple pictures to help her little girl tell her what she wants to eat or drink. I recommended the best book I've ever read about helping with her children's issues. I told her about how our church has a class for children with special needs with wonderful volunteers, and she could feel comfortable bringing them there. I will be in touch with this mom and try to think of ways to help her. But I can't do anything about the programs that don't exist, and the therapists that are not helping to establish a communication system, and the therapies that have two-year waiting lists, and the lack of doctors who can see her child and give a diagnosis in less than a year's time.

The whole time we were talking, she kept saying, "Oh, you just don't even know..." as she wiped tears away. But...I do know. Some of it. I don't know what it's like to be her and live her life, but I have shared some of the same experiences, frustration, and feelings of helplessness. She is probably so used to meeting other parents with "typically developing" children (sometimes I do get a little tired of that term because it reminds me that we are NOT typical) and she feels like she lives on a completely different planet when she hears them talk about their struggles. Hearing a mom complain about playdough stuck in the carpet and fighting with a sibling....compared to a mom in agony over her child that's non verbal and eats her own poop?  I personally think there is a difference there, but that's just me. Moms like to connect with other moms about their child-raising experiences and struggles. But when you don't know any other moms who have a non-verbal kid that eats feces, well, that can make you feel pretty alone in the world.

I wrestle with this blog, more than you can imagine. I consider taking my blog down every week. Sometimes daily. I question why I even do this. Am I wasting my time? I could be doing my dirty dishes right now, or a hundred other things. I wonder if people think I am egotistical, writing about my kids and thinking that others care. I do know some that some are irritated or just plain don't care. There are many people that are very close to us that do not read this blog. For the ones that do, thank you. I believe it helps you understand Lilli much better, and I can tell a difference in how people treat her or talk to her. For that alone, it is worth the uncomfortable feeling of baring my soul to the world. For the most part, unless people comment, I do not know what people think about the point of this blog. I write, I delete. I post, and consider deleting other posts I've already put up. It is an internal battle. I feel guilty for writing publicly about my children and my situation, because I know that writing something online is permanent. I cannot take it back. I don't want to embarrass my children or anyone else. I don't want to seem like I'm lecturing the world. I wonder sometimes, what is the purpose of my writing?

Really, it comes down to this: I write because there is no other way for people to know what goes on behind closed doors with a child who has special needs. If you don't know any personally, you might see them in public, rarely. You might feel sorry for them for a brief second. You might look away so they don't see you staring. But they have a story. And I believe those stories need to be told. It is my way of advocating for my own child, and for families like ours.

Why? Because they need help. Because they don't want to be judged. Because they never asked to live this kind of life, and they are trying to figure it all out. Because the next time you see a mother struggling with two young screaming children in the grocery store, it might be this woman.  The woman who is drowning in chaos and desperately needing help with her undiagnosed children, and she just needs to get a gallon of milk and some eggs without causing a huge commotion, but she can't. And lack of discipline or what you perceive to be "bad parenting" has nothing to do with her situation.

Because you might notice that a certain family that you know does not go to church, or to functions like the PTA school carnival, or to the movies, or to birthday parties, or to the neighborhood block party. But it might be for reasons you cannot imagine.

Because you might read this, wherever you live, and it might inspire you to think of a way that you could reach out to a family like this and help them.

Because the next time you go to the movies, shop at the mall, attend church or some other community gathering/event, I want you to look around and ask yourself, "Where are all the kids with special needs?"

If you don't see any, it's not because they don't exist. Trust me. If you don't see any, it's because the place or function you are attending has no accommodations for children with special needs. The same goes for adults with special needs. This is on a large scale for big things, and on a small scale too. The next time you are in a grocery store, look around for all the moms pushing their kids with special needs in special needs grocery carts. Don't see any? It's not because they don't need groceries. (Here is a link to a video about a special needs grocery shopping cart that I wish our grocery store had when Lilli was younger and could not walk as well. Wow, would that have changed my life back then: http://www.youtube.com/watch?v=7HTt9fx5WPE

Think about your workplace. Would a parent be able to wheel their child in a wheelchair into your store? Yes, I know there are laws about handicapped accessibility. That doesn't mean that every place is handicap accessible, not by a long shot. Once many years ago in the state where Lilli was born, I pointed this out to the pediatrician's office staff. I could not get Lilli into the building without a struggle. They had two sets of double glass doors, I'm not sure of the correct term - with one of those little vestibules to keep the cold air out. No handicap automatic button. Pushing a stroller with a baby (Chloe) and carrying a handicapped toddler (Lilli), it was incredibly difficult to pull open those two sets of doors to get into a doctor's office.  I suggested an automatic handicapped button. They thought it was a good idea; it had not occurred to them. A person with a wheelchair, a walker, or a child or two with special needs would have a terrible time opening those doors to get in. I wonder if they ever did anything about that.

Ever go to the movies with your child and think, where are all the kids with autism? They can't go to the movies unless your local movie theater has a special showing for kids with autism (and there are theaters that do this!)

Look around at church. Is there a way for parents who have children with special needs to attend your church? If you did not know I was coming, and I came to visit your church, would I be able to bring Lilli? We had a very hard time visiting churches when we first moved here, because most do not have a place for a child like Lilli. It was a lonely, frustrating experience until we found our current church home. Again I feel like I am getting into other topics that I could write entire separate posts about. So I will stop here, and leave you with this.

I write, because it is one small thing I feel that I can do to raise awareness and advocate for my child, and others like her. If my stories help you to have understanding for families who have children with special needs, I am glad.

I really hope it does make a difference. Please tell me if it does. It might keep me from deleting my next post.