Tuesday, May 28, 2013

Dance Recital in a Different Way

The other night I fell asleep reading a book to Lilli. I guess we both fell asleep at the same time. We were all curled up together, with the light on. I woke up to the slightest teeny movement. Lilli was having a seizure. And this is why we do things differently around here...even going to sleep. We do a lot of things differently. I used to cry about it. Now I can laugh about it. Well, only sometimes. That's a lie, I still cry about it too. I guess I'm just getting more used to it as the years go by.

I really don't know if I sleep deeply anymore. It is something that happens to a mom when there is a newborn around. At first, you wake up at every sigh and sniff that comes over the monitor. Over time, most moms begin to turn the volume down. And eventually, the monitor collects dust, and ends up in a yard sale. That's what happened with Chloe, and then Josh.

But not Lilli.

I don't know that we will ever not monitor Lilli. It seems like whenever we start to loosen up a little because she has not has a seizure in awhile, she has a seizure. And we are back to being uptight again. This cycle has been running for, well, nine years now. We have learned to live with this, but we both could use a really good, deep night's sleep. If our bodies even know how to do that anymore. I am not complaining. Just explaining why we may seem uptight or exhausted sometimes. I try not to talk about it. Everyone is tired for their own reasons. Lots of people don't sleep. Right? That's what I tell myself.

Tonight was Chloe's dance recital. Chloe is six, and needs to do what other six year olds do. There is so much that is "different" about our home life. For example, we keep having to explain to Josh that Lilli's ABA therapist does not actually live here. (When she pulls up, he runs to the window and yells, "Morgan's home!") So we want to try and make some things "typical" for the kids as they grow up. Even though the logistics are not always easy, Chloe has taken dance class for the last two years. And the recital is obviously the special event at the end of each year.

At the playground before one of Chloe's dance classes. 

Months ago, I started to plan for this one night. I have to plan like this. I knew we would not take Lilli or Josh to this recital, although it crossed my mind. But no, this night was about Chloe, not about keeping Josh quiet or Lilli happy in a dark auditorium. However...we have babysitting issues.

We cannot have just any regular person babysit Lilli. There are so many reasons why. We feed her, bathe her, she is still potty training, (that is my positive way of saying she needs to be changed, and we don't want just anyone changing our nine year old) she cannot talk, so the person watching her needs to really know her and understand what she needs and wants.

But the biggest reason is of course, her seizures.

When we leave Lilli with someone, we have to explain to them what to do if she has a seizure. That involves giving her emergency medication, which is administrated rectally so that it can go into the bloodstream immediately. Yes. Read that sentence again. Its purpose is to stop the seizure. Sometimes it is not needed, if the seizure is short. Sometimes it is needed for Lilli, because the seizure does not stop. Many times in the past, it has not even helped at all. The whole reason why we moved here and changed our lives has to do with this medicine sometimes not working. One day soon I will tell you that story.

Imagine how awkward that is to pull out a sheet of directions with pictures explaining how to do this. But we have to. We can't take chances. This is the biggest reason why we can't just have any babysitter for Lilli. It has to be someone that can take all of this in and be OK with it. It is a lot to ask of anyone.

Not your average instructions for a babysitter.
(I have to add an aside here, and say that the oddest things can connect special needs moms. I made a new friend once because I noticed she was holding one of these medicine packs. I saw it and instantly knew that this stranger lived the same rarely talked about life circumstance that I did. I walked over to her and introduced myself because of that medicine. She was holding it for her son. We became fast friends.)

We used to qualify for nursing care. That made it easier to leave Lilli and have peace of mind. But we don't qualify anymore. Lilli has a lot of needs, but not enough for a nurse. So we asked a trusted person we know - one of the only non-family members we would leave her with - over two months ago if she would watch Lilli and Josh for this one special event: Chloe's dance recital.

Jasen and I talked a lot about just how long we would be gone. Leaving Lilli for any length of time is often stressful for us. Most people are happy to get a break from their children, for a date or special event. We are happy for a rare break, but then... we worry.

The morning of the recital, I drove by myself almost an hour away to a church volunteer event. It was amazing, for two reasons. One reason was simply because... it was an amazing event. But the other reason was because I got to be just me and not worry about anyone else for about five hours, because the children were with my husband. It was a blessed escape.

When I got home, things were in their normal full swing. Lilli was working with a therapist, Chloe was playing store, Josh was...being his three-year-old-boy self and bugging his sister.  I was just starting to fold some laundry when I heard the therapist shout, "Seizure!!"  I yelled, "Seizure!" to Jasen, who tore around the corner and grabbed the emergency seizure medication we always keep on a table in the same spot. He bolted by me and flew down the staircase.

Lilli had been downstairs reading with the therapist. Jasen ran down the steps, grabbed Lilli, and ran back up the steps carrying her.

Afterwards, as the three of us looked at Lilli and tried to figure out what set that seizure off, I looked at Jasen and said something about getting ready for the recital.

"Well, I don't think that's going to happen for me now." Jasen said, his eyes still on Lilli. "How can we leave her now? The last time she had a seizure like that, she had another really bad one a few hours later."

I remembered. I didn't say anything, and I thought about it. Both of us wanted to go. Who was going to make the sacrifice and miss seeing sweet Chloe dance her big moment on stage?

Then, I had an idea. I explained the crazy plan to my husband. He listened, and slowly agreed that we could probably make that work. I went back to getting Chloe ready for the recital, wondering how it would go.

At 4:00, I left with little Chloe, hair in a bun and pink tights and all. Jasen left twenty minutes later in the van with Josh, Lilli, and the babysitter. They pulled through McDonalds and got Josh a rare treat - a happy meal to keep him busy in his car seat. Ten minutes before the show started, they pulled in and I met Jasen in the parking lot. He was carrying Chloe's surprise rose.

I had saved two seats down front. We slipped in right before the lights went down, and Jasen texted the sitter out in the van in the parking lot to make sure the last five minutes had gone OK. The plan was for her to text or call us if Lilli had a seizure, and Jasen could dash out to her in the parking lot and be by her side in seconds. It was a little unconventional, having our kids be babysat in the van in the parking lot for a few minutes, but it was the only way we both felt safe to attend the recital. We would only stay until Chloe danced.

Chloe was the third group to dance, and Jasen watched her with his phone in his lap just in case, while I videoed Chloe with my phone. As soon as she was finished and the ballerinas did their little tiptoe-run off the stage, Jasen and I slipped out a side door.

We met Chloe in the room where all the other dancers were, and Jasen gave her the rose. I took a picture of her with her daddy, and then Jasen said good bye. He left to go back to the van where our other two children were with the sitter, happily watching a Sesame Street movie.

I would not say a picture is worth a thousand words for this one. You can't tell what is going on behind the scenes.

We'd made it through. No seizures. Total time together in the auditorium was I think twenty minutes.

Chloe and I snuck back in and watched another hour of dancing. She snuggled on my lap, still in her tights and ballet shoes. I don't even think she knew about any of that behind-the-scenes-craziness. And that's a good thing. She doesn't need to know all of that. She only needed to know that both mommy and daddy came to see her dance recital.

I don't like to use the words "always" or "never." We don't know what God can do, and sometimes the seemingly impossible can be made possible. But there are just some things I think it is safe to say "always" about. I am pretty sure that we will always need other people in our lives to help us with Lilli. It will probably change over time, how people help her and how they help us. Maybe one day, we will be able to take Lilli certain places that we have not been able to take her. Until then, we depend on others to help. And I am so thankful for all of the helpers God has put in our lives. I depend on all of them so much. If someone can't come to help me, it usually changes our plans for the day. If someone can't help with Lilli, it often affects whether we do certain activities as a family. I am thankful for the help, and sometimes worry about what will happen when certain people move on and cannot help us anymore. But then I remember, God knows what we need, and He will put someone else in Lilli's life to help her.

And we will just keep doing things... in a different way.

Tuesday, May 21, 2013

Church. Part 5: Small Group and Special Needs

Continuing the story from Part 4 about Serving...

Hitting a Wall After Joining

Two of the biggest ways to get involved in a church are serving, and small groups. But this is where some special needs families might join your church, and hit a "wall."

The special needs of the child affect every person in the family, and every aspect of everyday living. This is why I write this blog, so others can see a little into our lives and understand that it is very different. So even something like the parents serving at church or joining a small group is directly impacted by their child's special needs. I will do my best to explain why.

In the previous post, I told how we found a way to serve in our church, even when I didn't think I had much to offer. We were guided by another person in the church, who helped us find a specific place where we were able to serve.

Things were going well with serving on the Prayer Team for many months. We had discovered a way to serve others in a way that worked with the life of having a child with special needs. One day, we were picking Lilli up from her special needs class after the service. Marianne, a volunteer in Lilli's room, asked us a simple question: "Do you guys go to a small group?"

This one question led us in a completely new direction of serving. I am so thankful she asked us.

We explained to Marianne that we wished we could, but we had tried and it did not work out. See, we had signed up for small groups - we filled out a card during a service with information expressing our interest in joining a small group. We actually contacted several group leaders near us, but we always hit the same wall: what about Lilli? As in, what do we do about childcare for her while we go to a small group meeting?  We even called the church to offer hosting a small group in our home, thinking that we would take turns watching our own children in another room. (which would not have been ideal at all.) After a few weeks of phone calls and emails, we gave up. We could not take her. We could not get a babysitter for her (I will explain why in a minute). We almost decided to split up and take turns - one of us going to a small group every other week. But we take turns a LOT, and we just didn't want to do that. We wanted to go to small group as a couple.

Overcoming the Obstacles

This is a list of possible issues for parents who have a child with special needs:

1. No childcare or childcare that is not appropriate. The child cannot be left with just any neighborhood teenage babysitter, it has to be a responsible adult who is comfortable and can care for their special needs. Can I leave my other two children with a babysitter? Absolutely. Just not Lilli. An added challenge is that we have no extended family nearby to help us.

2. Money for childcare. This goes for any young family in the church. I don't think I need to explain that one. Well, maybe I do. Many families with a child with special needs are trying to make it on one income so one parent can stay home and care for the child. There are extra expenses that come with special needs on top of the regular expenses of raising a child. If there IS "extra" money, there are always long lists of things - needs, like "necessary wish lists" for children with special needs - it is usually hard for these parents to put themselves first. For example: Hey, honey, my aunt sent us thirty bucks! Should we spend these thirty dollars on a set of adapted utensils from this special needs catalog because our child can't hold regular utensils when she eats and insurance does not pay for something like this? Or... should we hire a babysitter so we can go to Bible study tomorrow night? Even little decisions are tough.

Maybe that's a bad example. I am struggling with trying to sum up why I think families with special needs children would probably not hire a babysitter to go to a Bible study. Maybe some would. I just don't know any.

3. Childcare too far away. Ok so let's say we had a great, trustworthy, adult babysitter that was free, or we had the money to pay for one. We would still need to be close by. Why? Because Lilli has life-threatening seizures, and if that babysitter calls us and calls 911, we need to fly out of there fast and be by her side in seconds. This same scenario goes for children who have any range of medical needs, or even behavior issues that hinder a parent from ever being too far away from the child. For this reason, we needed to have Lilli in the same building as us when attending a small group.

So, taking a look at our list of challenges, Marianne went to people in the church, and helped to get our small group going:

The small group for parents of children with special needs.

Marianne asked us if we'd lead it, and she would coordinate the childcare for right there on site, in a nearby room. We were happy to lead it! Marianne went to the pastor about our group. Our church does not have a building - we are a load in - load out church at a temporary location, so meeting at our own church building was not an option. She found a safe, handicap accessible, free place for us to meet and recruited volunteers to watch our children. We stepped down from the Prayer Team, and moved into our new serving positions of leading this small group. There was immediate interest from other parents who have children with special needs. Who wouldn't want to come to a Bible study to meet with other parents who understand what you are going through? And, bonus, responsible adults are watching your child for free in the next room!

In our small group, we all have something huge in common: we each have one or two children with special needs. Our very first group meeting was unforgettable. What was your first small group meeting like? Maybe lots of getting to know you chit-chat, an icebreaker, a little teeny discomfort in figuring out how it all works, with the sharing and reading and prayer requests.

Not this small group.

There was instant connection and bonding with everyone. We went from surface chit chat to serious heartbreaking stories and emotion in minutes. We told each other our stories, about our children and their medical needs, diagnoses, how hard it was to do simple things in life like grocery shop, eat a meal together, find time alone with our spouse, get more than four hours sleep straight. How heartbroken we were about certain things, how hard it was to work on our marriages when we spent all of our time and energy dealing with special needs. And there was no pity. No awkwardness. No, I don't have any clue what your life is like and I feel so sorry for you. 

We all felt like we were in the same boat. It was like a support group, except... it wasn't. We were supporting each other, but we were supported in God's word together and could support each other in prayer. There are a lot of support groups in the community for various things like Downs Syndrome, Autism, and other special needs. But special needs support groups in the community don't have the part about Jesus, prayer, God's promises, and leaning on Him for strength and hope.

That first meeting, honestly, I think we all cried. Well I'll say that some of the guys got "choked up." (Gotta save face for the men.) It was moving, and I was amazed at how quickly we all connected. It's wonderful when you have someone that "gets" your crazy life without you having to explain it to them.

How the Group Changed

That was a few years ago. Since then, some things have changed. We still have a group, but it is a little different now.

Sometimes things happen, and you don't understand why until much later. All you really need to know is that we lost our meeting place. It was no longer made available to our group. So we stopped meeting, because there was no place for us. (Is this ironic?) I was not OK with the fact that since we had no place to meet, our group might just stop meeting. But our small group, well we can't just meet in someone's home. It has to be handicap accessible - which our home is not, because Lilli is not in a wheelchair. Plus would need a large space, with extra rooms where volunteers would watch our children. None of us have large houses with this kind of space. We would need something very specific to meet our needs. It felt overwhelming, and maybe impossible.

So I asked God for it.

I prayed pasionately, I prayed constantly. For months.

I asked God to do something BIG, to meet our needs and take it further than we could ever imagine. My heart was burdened for families like ours in our community. If we could just find a place to meet, we would ask families from all over the community to come. We would welcome them and they would be able to come and be a part of a small group. If they wanted to come to our church, great! If they went to another church, great! But... chances are, we guessed they could not participate in a small group in their church for the reasons I listed above. So we wanted to have a small group Bible study for any family with a child with special needs - not just in our church, but in the whole community.

Then, after praying, I had to do my part. So I took a few days (well, a few weeks) and made hours of phone calls and kept a notebook. I asked around, I Googled, I made some random phone calls to people at different agencies, including the local NICU and special needs services in our area. It was sometimes awkward and required explanation, but most of the time people were interested to hear about our group. One even told me that when we did find a place, to please call back and let her know so that she could come (and she did!) Everyone I spoke to said the same thing: there is nothing like that in our community. Families need something like this. What a great idea. 

I was encouraged. I kept praying, and I kept calling. During that time, I started to get to the point where I felt like giving up. But that is where faith comes in. Faith is not easy. You don't really need faith when you have instant gratification. Faith is being sure of what we hope for and certain of what we do not see. I could not see what God had prepared for us, but I was sure that this was a need that only God could fill.

And what do you know, one day, through a series of calls and a short visit, God gave us a fabulous, free place to meet. Five rooms offered to us for the parents and for childcare, and a kitchen, in a local church downtown. It was perfect.

The very first meeting a few weeks ago, we had 16 parents come, and 22 children. If I counted right, 13 of those children have special needs, the others were their siblings. We had volunteers from my church come to watch our children. Two of the volunteers took charge and asked the other volunteers to come, so I did not have to coordinate that part. Some of the parents that had been coming to our group for awhile helped and brought food and drinks. We put together a nice dinner for everyone. It's always great to meet with food. (The food helps to lure the guys there.) Jasen and I put together a short Bible study. What was it about?


When we all got settled and I looked around at this circle of overwhelmed, soul-weary, selfless parents, I felt emotional. It felt like home to me. I cannot wait until the next meeting.

People are hearing about this group through facebook, word of mouth, and good old fashioned flyers. The interest is growing. I've received emails and messages from people I have never met, asking questions and expressing their desire for something like this. Some go to church, but don't feel like they are connected. Some don't go to church at all, because they have not found one that has a place for their child. Some go to our church, but were not able go to another small group because of their children's needs. Several people wrote that they wished they had something like that in their community, because we are too far away to come to ours.

We know that there are hundreds of families right here in our area that have either no church family, or no way to go to small group. So we believe it will grow.

Something like this can only come together because God does it. But I know why He is doing it. Because we matter to Him. And if families in our area that have children with special needs want to do something as seemingly "simple" as go to church, and go to a Bible study, I'm going to ask Him for His help. He answered. He sent help, in the form of a few volunteers from our church that realized we needed something a little different, and those people did something about it.

Look at Your Church

If pastors and churches are taking a good look at this issue of special needs families in their churches, this is a part of all of it. If you make a place for the children, the families will come to visit. The logical next step is for those families to get involved and connected somehow. But how? After a church creates a place for these families, how will they get involved? Will they be able to serve, or join a small group? If you help them, they will be able to. Many times this is not an "I don't want to" issue, it is an "I'm so overwhelmed and I don't see how it is possible" issue.

I share these experiences, because I know there are families like us who have felt the same way about getting involved in a church. If you want to know if it is an issue in your church, I guess all you would have to do is look at the parents of the children with special needs in your church (if there are any). Are they serving? Are they in a small group? Maybe you could ask them. Of course, they may have other reasons. They might not be interested. They might be like many families who just come on Sunday morning, and that's it for them. Maybe they are very overwhelmed, and they cannot imagine how they could add one more thing in their life. You can show then that small group could be a break for them, if volunteers help. What if they do want to get involved, and they don't know how because of their child's special needs? They might need just need some caring volunteers to see a need and do something about it.

I hope all of these posts about church have helped encourage those who are interested in this issue of special needs ministry. I love hearing from everyone who comments, and I pray that these posts will be passed to churches who have never given thought to any of this. I want to tell those churches: it's ok. I never thought about any of this stuff either, until we had Lilli. So I hope it is helpful to read about our experiences. I pray that it will be passed on, to those on whose hearts God wants these words to land.

Church. Part 4: The Rest of the Story...Serving and Small Group (without complaining)

People that are following Christ will grow and change. Ministries that are led by God will grow and change. So since we first visited the church that had a place for Lilli three and a half years ago, a lot has happened. The first three posts about our church experience were only the beginning. I think it is important for readers interested in this issue to know that simply having a place at your church for children with special needs is important and needed. And it will be a blessing to everyone in your church body - mostly the volunteers I would say. But, it is not the end of the story. It is just the beginning....

This is our "serving and small group" story.


Why we Kept Going Back

Our family had been attending this church for several months. Lilli did great in the special needs class, and Chloe loved going to church because it was fun, and she was learning about Jesus on her level, as a three year old can understand. Then we had baby Josh, our third child. We were continually surprised at how much thought and planning this church had put into the smallest details. We brought newborn Josh to church and discovered that there was an entire area just for nursing moms. I sat in a comfortable rocking chair in a completely private area, and watched the service on my own tv while I took care of Josh. Go ahead, ask me, because I know some of you moms are thinking it... why I didn't just stay home and watch it online in the comfort of my own home? Because I wanted to go to church with my family. Because I need community. I need contact with the outside world. Because I want to go to church and be there with my husband and with other people. I want to participate in some way, and be a part of it, even if I have to do it in a different way. (You can apply this analogy to anyone, especially people with disabilities. How ironic.)

In this private area, a female volunteer always came back to check on me and see if I needed anything, every single single service. There was a changing table with wipes nearby. Next to me on a small table, there were thoughtfully placed granola bars and water bottles. It was nice. I felt loved. (I just feel like I should add that this is a load-in, load-out church. That means someone carried those rocking chairs and all that stuff in just for nursing mothers - every week.) We went to church together as a family, and I still got to be a part of the service. I did not have to sit in a silent, empty room (or worse yet, in a bathroom while toilets flushed) staring at the wall while I waited for the baby to eat. That, I had experienced many times before.

I would argue the whole "staying home because it is too hard to go to church" opinion forever. And as usual, I think that could be another entire post. So I will move on....

One thing about this church was that they seemed to try and think of some small inconveniences that might hinder a person from coming. I felt extremely blessed to have found a church that had both a place for our daughter with special needs, and a place for nursing moms. Everything else was just bonus. See, it really does matter when people can't simply attend a church service because there are no accomodations for them, or for their children. Some churchgoers complain about things like lighting, or worship style and music, and it seems so absolutely frivolous to me. After the last nine years with Lilli, we see that just the simple fact of being there is a blessing. If we are blessed enough to be able to attend a service as a family, we would never dare complain! If hypothetically I weren't too fond of a song, I'd keep it to myself. I'm fortunate enough to even BE there choosing whether to sing it or not. It's not about me. I am there to worship my God, and I am so very happy to be there. (The bonus for me is that I happen to love the worship songs at my church.) In the Christian world, there always seems to be the small crowd of cranky complainers. Complainers about things in their own churches, and complainers about things in my church. But if you are one of those complainers, ask yourself if your church would have a place for my family. Child with special needs, nursing mom, and all. Not just a "place," a thoughtful place. If you don't, now you see why we kept going back to this church, without complaining.

And we decided to join it.

Joining, and Figuring Out How to Serve

In our church, we don't call it "membership," we call it "ownership." Because members have rights, and owners have responsibilities. So as a new "owner," we attended an "ownership class" and met with people to decide where we would like to serve. All of the serving area responsibilities were clearly described on a hand-out that we were given during a presentation, and then we were divided up to meet with someone to pray and decide where we would like to begin serving. This is where my "special needs parent" story comes in.

As I looked carefully over the list and at the time and description of each church job, I began to feel overwhelmed. I could not figure out when or where I could serve, because of Lilli.  I could not serve in one service and attend another - Lilli could not last that long in childcare. We could not split up and come at separate times to serve - We live a half hour from the church, and my husband and I are a team. We need each other when we bring our children to church. Getting from the parking lot to the check in station with our children is often like playing "pin ball" with three balls at once.

When you have a special needs child with overwhelming needs and care, sometimes it just consumes a person. It's your whole life, it kind of seeps into every single area until nothing that's "just you" is left. With a five year old that had seizures, could not talk, was spoonfed pureed food, wore a diaper, had walking and balance issues, and slept in our room with a blinking monitor all night because of her seizures, we were drained. On top of that, we had a three year old, and a needy newborn. Jasen was in a full time doctorate program. I think that was why we felt like I could not figure out how, or where to serve in church. I was depleted in every way just by serving my children all day and night. Three and a half years later, some things have changed. I remember that back then, Jasen and I were both burned out and stretched extremely thin. (Now we are back to just being plain old exhausted and slightly overwhelmed, but we're good with that.)

I was paired up with my "ownership partner." I sat across from a sweet young woman with blonde hair, and she asked me about how I met Jesus. I told her my story, and then we started to talk about the different areas of serving, and what I was interesting in trying.

I thought about what I had to offer. It didn't feel like much nowadays. Years ago, (in another life) I taught Sunday school. I worked in the nursery. I sang, played the guitar, helped with planning the service. I had done a lot of different things in the past that I could not figure out how to do now because of Lilli. I'd become a different person. I felt like I was drained dry and had nothing left to give on Sunday mornings.

That was when I was blindsided with an embarrassing, out of nowhere, flood of emotion. In a room full of people I did not know. I felt the tears coming to my eyes and thought, oh no, What? Come on, don't cry, no, not here, get yourself together! 

"I'm so sorry," I explained, absolutely mortified at myself.  "I want to serve... I just....I can't figure out how I can serve, because we have a daughter with special needs and she can't last in childcare for that long..." I fumbled to explain my odd emotional reaction to the list of serving descriptions. How embarrassing. How could I explain my very different life to a complete stranger in a minute or two? I couldn't.  I told her a little about Lilli. I tried to sum it up by explaining that whatever I did, it would have to be something that would work with Lilli.

Because absolutely everything we do in our lives depends on Lilli's needs and care. Her seizures. Her...everything.

I glanced across the room at my husband, who was smiling and laughing with his ownership partner. Goodness, I was such a mess. I wondered what he was picking off his list over there, cause his issues were the same as mine. Except for the hormonal-nursing-mother-woman part.

I looked over the list again, and she suggested the Prayer/Care Team. As she explained the team to me, I began to envision how I could serve in that way. Yes! I was relieved. I could do that! I went over and pointed it out to Jasen, and he decided he wanted to serve on the prayer team too.

This is why meeting with another person - a woman - one on one, was so important. I could tell her about my life, and she helped me find a place where I could serve. If I had just been expected to sign my name on a list somewhere and show up, well, it would never have happened. I needed that extra guidance to help me see that yes, I am able to serve. Just not in a traditional way. And why is it so important to serve? some of you may wonder. I mean, come on, look at how needy we were, you'd think I would just say that we needed to BE served, not serve others, right?

Wrong. I can't explain serving to you like a pastor would. I can tell you that when I serve others, it gives me joy. It takes my focus off of myself and my little world and my own problems. I might be exhausted before I get there, but I love it while I'm serving. I am a part of it all. It is actually exhilarating to me. I can help someone else, instead of being helped. That is a gift to me. Serving others is not a chore. It is a privilege. All I can say is if you are serving and it feels like a chore, you might want to change how you are serving. I can't think of a much better feeling than serving others, and if you don't feel joy, you're doing it wrong.

Serving through Prayer

At first, Jasen and I became a part of the "Prayer Team," and prayed throughout the week for all the many prayer requests that came in from people during the service (the little cards you can fill out and drop into the offering.) The team met for a few minutes before the service to touch base, but the real serving happened starting Sunday afternoon at home, when the prayer requests were emailed out to us. The prayer team leader would type them all in and send them to the team members. Then we would pray for the requests all week long, and contact the people we were praying for to let them know that they mattered, and that real people were specifically lifting their requests up in prayer.

Praying for others? No problem! This I could do while I was taking care of baby Josh, pureeing Lilli's meals, driving her to therapies, in the middle of the night with an awake was an important job that this multi-tasking mommy could definitely handle.  It was perfect for us. A few times I even got to serve on the Care Team during the service and pray with people in person, and I loved that.  It was great to finally be involved and meet new people in our new church. Many times, there were prayer requests from us. And now we knew the people on the team that were praying for us.

Families who have children with special needs might feel like they cannot serve. Sometimes it is simply enough that they can get their family to church. I think a church should take care not to pressure these families to serve or make them feel bad for not serving. They are in a different category. I don't know how to explain why in a simple way. These parents are not soccer moms or little league dads. They are appointment/therapy/medical-procedure moms and dads.They are living every day just trying to make it through each moment. It's like the exhausting state of mind of having a needy newborn, but as the child grows older, that state of mind never, ever, goes away. And for many parents, the diapers, the bath times, the dressing, the feeding, and everything else never goes away either. It continues on and on, with no reprieve, and the child gets bigger, and heavier. It's just a very different, often difficult life for parents raising special needs children. This you might glean from reading some of my other posts. I could tell a hundred stories about the many challenges of these families. If you spent a few hours at one of their houses... you would understand. That's all.

So let's say these families with special children are coming to church, but they don't seem connected. They come, (sporadically maybe, because their children might be sick or having seizures, or surgery, or again, a long list of reasons that have only to do with special needs)....and they seem interested in being involved, but they aren't connected. Don't give up on them. They need encouragement in a different way. They can serve. There are ways that they can serve, it just might be in a way that does not involve being at the church for two services.  I don't know the answer, because every church is different. All I know is that for us, we wanted to feel connected to the church body, but we had trouble figuring out how. We needed someone to help us see that we are able to serve, just in a different way.

The prayer team was a great first serving job for Jasen and me. But then as things usually go in life, one day, everything changed. God had exciting plans for us through serving at our church.
Please read the next part of the story in my next post: "Small Group and Special Needs."

Wednesday, May 1, 2013

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.


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


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.”