Church and kids with Autism

23 Jul

Inspired partially by this story:

This topic has been a bit of a mindworm for me for several weeks, ever since we visited the church of my father-in-law while on vacation. And again this week, while a local church is having vacation Bible school (VBS).

Churches and houses of worship are pretty central to the community life of a lot of people, especially families. It is often considered an extended part of the family where friends are made and met. Churches provide a valuable source of social interaction that can be less pressured than the formal structure of school.

Or is it?

It’s difficult for me to think of a place where a meltdown is less welcome than at church. At school, in stores and parks tantrums are pretty common amongst all children. They also happen at church, but for some reason they inspire a level of shock and horror of Biblical proportions. People can and will complain, gossip and talk about a child’s behavior. When it comes to support, church can definitely be a mixed bag.

Some of the earliest indications of troubles for Thomas were evident in church. When he was in the nursery, it seemed like Jane was always getting called down there to tend to some sort of mishap. We moved to another community when he was 18 months old, and this church’s nursey had a beeper system. Parents would get a vibrating pager and if there was a problem, we would be paged. And it seems like we got paged alot. All. The. Time. In fact I remember the first Sunday we didn’t get paged. We were nervous and convinced that the batteries had gone dead or that the pager was broken! Thomas was prone to meltdowns in the church setting, crying almost the entire time or to a point where he would throw up. The fact that he was prone to reflux didn’t help matters.

Before he was diagnosed, we thought he was just fussier and more temperamental than other kids. I don’t think other parents were so judgmental in the early days as much as they were thankful this wasn’t their child!

Neurotypical kids often meltdown when they separate from parents, especially when the parents don’t attend very regularly. I remember volunteering for a two year-old nursery one Easter Sunday. 9 little girls, all dressed in their best Sunday Easter dresses cried, screamed and tantrumed for a good 30 minutes before we could redirect them into some play activities. And then it repeated when parents started to pick up their kids, and those left behind thought they were being abandoned. Most of these kids had not been in a church since Christmas or Easter the year before!

But Jane and I were regular attenders. We were there pretty each and every Sunday unless someone was sick. We also were involved in other church activities outside of Sunday mornings. But Sunday mornings were a source of constant anxiety.

First, we had to get there. A lot of families can relate to the struggle involved in getting everyone there on time, without some sort of meltdown. And these are regular, neurotypical intact families! Getting Thomas ready involved extra time as he does not do well when he’s rushed. And it seems like we were always rushed.

Then we would drop him off to his Sunday school class, while we went to our adult Sunday school class, which I sometimes taught. But invariably, the beeper would go off, and usually it was Jane who would have to see what the problem was. It got to the point where Jane just quit going to our adult Sunday school class and stayed with Thomas in his class. The anxiety of waiting for the pager to go off was just too much.

After Sunday school, we went to the worship service. At 3, Thomas was too big for the nursery, and attended with us. This posed a big challenge as he often wanted to “talk” and make noise at exactly the wrong time, which was during the pastoral prayer. Keep in mind, this prayer and the sermon were often taped and broadcast over the radio the next week. I remember actually being able to hear him while listening several times! Then there is the business of staying in your place and following the liturgy which involves standing up and sitting down at certain times. Outside of school, church is often the most structured place a child attends, but unlike school, the rules are not so explicit. However, there is a decent level of consistency in the service they he eventually started catching on to.

Midway through the service, before the sermon, the kids up through 3rd grade go to children’s church. So the big task was getting him through the children’s sermon, which segued into the kids leaving to go to children’s church.

Getting through to that point often involved bringing candy and snacks. This was actually pretty successful as long as they didn’t give him too much during Sunday school. As long as he was munching away, he seemed fairly content. Mixing the snacks up also helped slow him down as he would first get the peanuts, then raisins and finally the cheerios. Otherwise, he would finish the snack before the pastoral prayer, and then we were in trouble.

The children’s sermon took place in the front of the alter, where all the kids would gather around the person delivering the short message. Sometimes it was the pastor or assistant pastor but sometimes it was someone else from the congregation. Since we sat in the back in the balcony (an attempt to keep from being too much of a distraction) it took extra time for Thomas to get up front. Either Jane or I would have to go with him him and then try to keep him contained during the short children’s sermon. More than once he got away from us and would walk around the sanctuary, much to the amusement of the congregation but mostly to my own horror. He really never got into the children’s message and pretty much had to be forced to stay in his spot. And then it was time for him to go to children’s church.

Children’s church was not as structured as Sunday school. The kids were often wilder and more unruly and the people who volunteered for this were not always very well prepared. The chaos and noise didn’t sit well with Thomas, so either Jane or I would have to go with him and stay.

The end result was that we (but mostly Jane) were missing a lot of church. The reason to go there is to participate in a corporate worship experience in order to facilitate a more complete experience of Joy with God. But often for us, it was anything but joyful. It was almost hellish. Jane was seriously whithering on the vine, spiritually. It was stressful pretty much from beginning to end.

An associate pastor saw our plight and started a program where other adults or teenagers would go with Thomas to children’s church. This was called “Angel Buddies.” They even brought in Thomas’ preschool teacher to help answer questions and help them understand how to deal with kids with autism. We had about 7 volunteers at the beginning of this program and it did seem to work out pretty well at first. Jane and I could finally attend church together and it was often the only time we were together without any kids all over us.

But the Angel Buddy program’s success was short-lived. The associate pastor left within the year and the next person who took over the schedule was not very diligent. In fact, Jane or I were included in the rotation every month. We were told this was so that the other helpers wouldn’t get worn out with it. But often, the helpers would be out of town or not at church and we would have to do it anyway. While we were grateful for any assistance we got, we hated to impose on other people. The list of volunteers who were faithful and diligent to this ministry got smaller and smaller as people moved on to other ministries and as teenagers went to college.

I should mention that the few teenagers who volunteered were some of the best and most diligent people in the Angel Buddy program. I think Thomas and they both benefited a lot from being together. But it became less and less of a program and was dwindling away.

In the meantime, people were talking and complaining about Thomas’ behavior. He seemed to choose church as a testing ground for defiance. One of the only times he was ever spanked was outside in the church parking lot. And the side effects from that weren’t exactly desirable. Jane and I were not together during church time, and one or both of us were not among other adults. It was a source of stress and conflict with each other and within the church community.

One would think that the safest place in the world for children with disabilities would be in houses of worship, among people dedicated to God, love, mercy, grace, compassion, faith, and forgiveness. But this is not true at all. The worship service itself, with constant demands for compliance and conformity, is hostile for those who are inherently different from everyone else. Anyone who is unable to conform to the structures of the service is not welcome and asked to leave. The larger the church, the more true this will be.

I may editorialize more on my feelings toward church and those with disabilities later, but I want to talk a bit about how churches attempt to deal with this unique and growing population. In this particular church spoken about above, they attempted to recruit helpers in order to help Thomas participate in the same activities as his peers. I think the intent of the program was excellent, and it started out well enough. But without diligence by a committed coordinator, it becomes just another chore to dread like ushering, parking lot duty, being a greeter or assorted other mundane tasks and ministries in the church. Yes, we are the boy’s parents and he is our responsibility which we take seriously. But no one was caring much about our own spiritual growth or struggles. Staying home is a more Holy, peaceful and rejuvenating experience for many families that have children with disabilities. Church is often a hostile, hellish experience where families are segregated or ostracized. I don’t think Jesus would approve.

That’s not to say Thomas got nothing out of it. He did memorize the Lord’s prayer and the Apostle’s Creed. He also picked up on it enough to threaten his Sunday school teachers with crucifixion more than once!

Other churches set up a separate class and program for people with disabilities that is set apart. On one hand this makes it easier to concentrate human volunteers and resources in one area, but it also segregates people with disabilities into a sort of modern-day leper colony.

When we visited my father-in-law’s church, Thomas spent a bit of time during the service just wandering around. I was keen to hold him down or take him out, but Jane tried letting him loose. Talk about anxiety! An usher came up and said something to him, so I retrieved Thomas. The usher said that we could use a back room where we could here the whole service. I decided to try that.

Many churches do have a “cry room” where parents can take crying babies or mothers can actually nurse their babies while being able to see the whole service through one-way glass. This room was actually pretty cool because it had nice comfortable couches and Thomas found some toys to keep him content and occupied. It was like a little living room or a one of those box suites they have in stadiums. The usher even brought him a cookie! I was totally into this until a couple mothers came in and wanted to nurse their babies. So we spent the balance of the service in the large lobby area, just walking around. Last summer, at my parents’ small church he was getting disruptive, so Mom took him out to walk around the block.

Jane and the boys have been going to another church where the structure is a bit different. The kids spend the entire service in their own big area where the have plays, they dance, sing and basically have a big party. The staff have been pretty good with him and have worked so that he feels comfortable there. But he still has his moments. The setting is very, very loud. They probably amp up to over 100 decibels at times, which means he spends a considerable amount of time with his fingers in his ears. The open space, the loud contemporary music and the dancing around are more conducive to Thomas just walking around the room in circles, which he prefers in such settings.

I remember years ago attending a service at a small country church near my parents that they attend sometimes. There wasn’t more than 25 people in the place and people dressed fairly casually. Thomas wasn’t with me, but the was a boy about his age, wandering around the little sanctuary and amongst the people. No one made a big deal about it, as it was a fairly informal setting. Plus, the boy was the pastor’s son so that probably carried some weight. But I never forgot the comfort the boy and other members felt in that place. There a distinctive lack of anxiety or concern there. Basically, it was a bunch of neighbors getting together, and they weren’t too concerned about impressing one another.

It occurs to me that larger congregations and groups are going to have a harder time with people with disabilities. In large groups and institutions, conformity is a big deal. It’s the only way to have any sort of order in these places. But smaller groups may allow for more inclusiveness and flexibility. That’s just my general impression.

This is not an exhaustive treatment of the subject, but I’m just throwing this out there for discussion where maybe others can expand or extend with their own experiences. I’ll be jumping back into school related stuff soon, as us teachers report back this Friday!

D.

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12 Responses to “Church and kids with Autism”

  1. Donnell Kenworthy July 25, 2008 at 4:39 pm #

    D. I check in every once in a blue moon on your blog and find it refreshingly real and candid. I am a mom to 5, the youngest (13) has Down syndrome, Autism and ADHD, as well as a host of medical challenges. I appreciated your post about church and autism especially. My hubby and I are former pastors and I agree with so much of what you have said. Church SHOULD be a place of refuge and support. It is not for many families affected by autism. My husband and myself, having taken ourselves out of pastoring now, are choosing to volunteer in our local church to spearhead a ministry to families and individuals affected by special needs. It is a needed ministry and we can’t help but feel that God has placed us here for a reason. I pray you find a place for your family to be able to worship together, and I pray that your children experience the relationship that God desires with them. I agree that our families’ worship experiences may LOOK different than those of NT families’ worship experiences, but that they are nonetheless valid worship experiences! God Bless………………………………………..Donnell

  2. Daniel Dage July 30, 2008 at 12:06 pm #

    Thanks for stopping by! You are right that support for families of children with autism do need extensive support, and bless you for stepping up! Worship is not necessarily restricted to a “place” or even a time as long as it is done in spirit and in truth. And sometimes, those on the spectrum might be further ahead of us than we think.
    D.

  3. Polly M. August 19, 2008 at 5:14 pm #

    Hi Dick…I love your blog. I am the mom of a 3-year-old with ASD and I am also a spanker. I totally get what you say about that, btw.

    However, as far as churches go, I have to disagree. We are in Houston and attend a 6,000 member church. We have a WONDERFUL special needs Sunday School that our daughter attends, called Oasis. The teacher is a certified ABA therapist and any volunteers that help her are well-trained in expectations. The best part of it is, she gets to spend as much time as she wants in the regular 3 year old Sunday School class. It is just a few doors down. More often than not, she will go there for circle time, when everyone sings or the teacher reads a story. She will also go out on the playground with the other 3-year olds. It is really awesome to know she is being so well cared for and understood while hubby and I can attend Sunday School and worship.

    There are some good large churches out there! Don’t give up!

  4. Shay West August 26, 2008 at 2:23 pm #

    Daniel:

    It almost feels like you wrote this blog post about MY son Thomas (now seven years old, autism Dx before age 3). When we first told our congregation about Thomas’s autism, the help poured out. Ladies from the church came over to play with Thomas for an hour on each weekday, and workers were abundant in the “nursery” during the Sunday morning service. However, as time went on, support dwindled down to nothing, and it became rare that anyone would sign up to play w/ Thomas in the “nursery” during the service. The last time we went to church was late winter. Heck, the pastor hasn’t even called to see if we were still alive! Not going to church leaves a huge hole in the beginning of the week. I guess we need to change churches.

    Shay West

  5. Daniel Dage August 26, 2008 at 8:27 pm #

    Thanks for stopping by, Polly! Glad things are working out for you in your church. for younger kids, I think there are many more accommodations and people are willing to go further for you. It gets harder the older (and bigger) the child gets as it becomes less cute and more annoying. I do have a lot of respect for those who donate time in church setting, though, at any age and level!

    Shay, I believe church is more than a Sunday morning thing, and you experienced that at first when people came ’round. However, people simply do not have the kind of endurance most of us parents of ASD kids have developed. Church is something you are more than what you do, I believe. So I don’t really look for a Sunday morning refill as much as try to stay diligent in my faith throughout the week. ASD certainly does add to a lot of loneliness and isolation so getting out and about with other adults (without the kids underfoot) is important. Changing churches might help find new friends or finding new friends in the old church. But I’ve learned not to expect much in the way of help as ASD kind of frightens people, which gives me a chance to educate and minister them out of their fear. Getting a lot from church is difficult sometimes!
    D.

  6. calliemae August 27, 2008 at 4:33 pm #

    Isn’t it funny that at the one place no one is “supposed to judge” that it’s the place you feel most self conscious. I am an early childhood special ed major in my senior year of college, and I want to get my masters in autism, and I am fascinated by this disorder. I agree with Daniel with the fact that ASD does frighten people, and how are volunteers of a church nursery equipped to deal with melt downs and tantrums of children with autism? They aren’t and so they proceed to gossip, because they are ignorant to the fact that it’s not the “parents fault”, it’s that the child requires different ways to be handled. I applaud all parents who take their hard to handle children to church, because that’s what we must do as advocates, learn to adapt to the environment.

  7. melissa November 27, 2008 at 10:33 am #

    I am a children’s ministry worker at my church and I found your blog very helpful. We have 2 children with special needs and one particularly is more challenging. We have had other workers who believe that the parents should sit with their child during each service but I personally disagree. I believe it is our responsibility to teach and show the love of Christ to these children and allow the parents to be able to get the spiritual feeding that they need. I was doing some research and trying to get ideas of how to work with ASD children when I came across your blog. We had already been discussing having a volunteer working one on one with this particular child (the other child works well independently most of the time.) I am just sad that you have had such negative experiences in church settings. I am thankful that I have others in my church who feel the same way as I do. If you look at the people who Jesus spent most of his time with it was those who would be considered “special needs” today. These kids were lovingly created by God and so who are we (churches and church ministries) to not love and reach out to these kids and their families.

  8. LeAnna December 14, 2008 at 10:58 pm #

    Wow. I have bookmarked your blog to come & check frequently, but this post about churches really hit me. We have 3-1/2 yo twin boys with autism. We have been in our community for 5 years (before they were born). Our church has a lot of loving & well-meaning people, many who are our friends. Unfortunately, not many spend enough time with us to know that this isn’t just a “bad parenting” thing or a “bring them to every function and while we’ll stare during their meltdowns, we’ll inwardly keep thinking they’ll just outgrow their brattiness”…the list goes on. We have often felt alienated rather than loved unconditionally. Recently, I (mom) had the opportunity to put it into eloquent words (so NOT my talent) with an elder of the church and he actually GOT what I was saying – for the first time in 3-1/2 years I didn’t feel like I was walking into another planet. Thanks for your blog & I’ll be checking frequently!

  9. janny226 January 4, 2009 at 10:12 pm #

    Thanks for your post. You’ve inspired me to ask for help from the children’s ministry coordinator at our church. My 6-year-old does well sometimes and other times not, and the teachers rotate so no one quite knows how to deal with him. And then there’s the coffee hour situation, where the kids want to play in the gym but if either or both husband and myself are supervising him we are either (1) not socializing with our fellow Christians together or (2) as was insinuated today, in need of some basic parenting training. *Sigh.*

  10. Abby January 27, 2009 at 10:20 am #

    At the church we just left, they did separate the disabled children from the others for sunday school (I have an autistic child). However, they made an effort to always send each child to their appropriate group session (by age) with a helper. Then, when all the children returned to their individual classrooms, the disabled children returned to their classroom. Their classroom was equipped with the latest is sensory technology, innovations, and had a very large enclosed playground right outside the outside classroom door. I was very impressed by how much they cared.

  11. Jen January 30, 2009 at 7:33 pm #

    Hi I just found this post after myself receiving a letter from our church of years that our son can no longer be with the “typical” kids. He and another child with autism have been too “distracting” and they can no longer come to Kids Own Worship. They have designated a room for them to go into without instruction because there isn’t enough volunteers to teach them. I understand that volunteers are always short so I provided a HIRED one-on-one aide to go with him. He was still banned. I was looking on the internet for some comfort because I am in so much pain with this. Its comforting to know others are out there and feel the same way. I agree…church is where everyone should be welcomed and that is what God would have but we sinners just always ruin it. I think autism makes people uncomfortable and makes things more difficult in church. I think in my church what the staff has said to me makes me believe that the job just got harder when my son walked in and therefore he had to leave. I think if they complained to God about how hard it was that Sunday when my son was there, He would have just said “Find a way and minister to all my children. Not just the easy ones.”

  12. Jen January 30, 2009 at 7:35 pm #

    Hi I just found this post after myself receiving a letter from our church of 10 years that our son can no longer be with the “typical” kids. He and another child with autism have been too “distracting” and they can no longer come to Kids Own Worship. They have designated a room for them to go into without instruction because there isn’t enough volunteers to teach them. I understand that volunteers are always short so I provided a HIRED one-on-one aide to go with him. He was still banned. I was looking on the internet for some comfort because I am in so much pain with this. Its comforting to know others are out there and feel the same way. I agree…church is where everyone should be welcomed and that is what God would have but we sinners just always ruin it. I think autism makes people uncomfortable and makes things more difficult in church. I think in my church what the staff has said to me makes me believe that the job just got harder when my son walked in and therefore he had to leave. I think if they complained to God about how hard it was that Sunday when my son was there, He would have just said “Find a way and minister to all my children. Not just the easy ones.”

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