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 ChangedThat 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 ChurchIf 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.