LIFE IS A SPECTRUM / Church with the special needs child

We found a church today. At least, I'm pretty sure we have. We've been looking for a while, and talk about finding something right under your nose: We ended up at the same place where we've been attending Kindermusik every Wednesday night for the past 5 months, Good Samaritan United Methodist.

Dave went to the nursery with Billy and Willow to help ease Billy into his new surroundings. We explained to the nursery staff that Billy is autistic, and they were all just wonderful. After an initial, brief meltdown over the site of Mama high-tailin' it to the grownups' room, Billy apparently settled in very nicely. At coloring time, he helpfully shared his orange crayon with everyone, whether or not they wanted a bit of orange on their drawing and seranaded the whole class with a couple of verses of "Jesus Loves Me."

I got a glorious hour to sit in a beautiful room, sing beautiful music, pray quietly and ponder philosophical and spiritual points. It felt downright luxurious. Like a spa for Mama's soul.

There was a time when I took going to church for granted. I grew up in church with a tight-knit group of friends who went on trips together, put on plays, occasionally behaved badly and yet, were ultimately baptized into a family that was more than the sum of its parts. Church was fun -- and yes, uplifting and spiritually rewarding -- but when you're a kid, the fun is what gets you there. I always wanted my children to have the same opportunity.

When we moved to Tallahassee, we started looking for a church to call home. One of our first stops looked very promising: It was known for its extensive children's program, which was a priority to me. For a couple of Sundays, we attended, with Dave going to children's church -- a much more structured environment than Billy was used to -- with Billy. During the Bible story, Billy's echolalia (repetitive talking) continued. He was overwhelmed by all the new people and the number of structured activities; each small group quickly changed from one station to the next activity every few minutes. And he melted down.

But Dave reported to me that he was able to get it under control and felt that with a little time, Billy would settle into the routine.

The next Sunday, though, the teacher made it clear to Dave that Billy was too disruptive to the rest of the class. Ultimately, Dave just took Billy outside to play. When he told me what happened, I wrote an email to the head of education. I was upset, and I probably got a bit high and mighty in my quoting of the Bible and Jesus' words about "Whatever you do to the least of these, you do unto me," and waxing poetic about how it was supposed to be God's house and no one, certainly not a child, should be turned away.

Well, I felt genuinely mortified about 5 minutes after I sent the email. But shortly thereafter, the phone rang; it was the head of education, and my mortification couldn't come close to matching hers, she said. She couldn't have been nicer. She explained that Sunday school teachers were volunteers and they weren't always equipped or trained to handle special needs. I assured her I understood, and the last thing we wanted was to ruin any other child's experience at church. I thought we were really making headway, were really coming to a consensus. Next time, I promised I would attend with Billy; I promised to take him out at the first sign of a meltdown, and somewhat reluctantly, I agreed to teach him his Sunday school lesson by ourselves, in the hallway, so that his echolalia wouldn't disturb the other kids' lesson.

Then before we hung up, she said something that completely changed my mind. "Of course," she said, "I still can't promise you it's going to work."

You can't promise me it's going to work? If it doesn't, then what? We get expelled from church? Really? Ah, just forget it.

Compare that with the response I got from a gentleman at Good Samaritan today: "If we're doing our job right as a church," he said kindly, "you and your son will always feel at home here. No matter what." I admit it: I burst into hysterical tears. Great impression on the new congregation: Mascara smearing everywhere. I'm trying to talk and say, "I'm not usually like this," (If you know me, you know that I actually am just like that, and just lied to my new church), while snorting and wiping my nose. Lovely.

Everyone was so kind. The pastor even said that she had just this week spoke to someone about starting a special needs Sunday school. I assured her there was such a need for it. I'm sure there are plenty of families with special kids who could use the spiritual support of a church family -- not to mention an hour of real, literal peace.

If you attend some house of worship, I'd really love to know how it handles kids with special needs. If you don't know, could you do me a favor and ask someone? I have a couple of reasons for asking this favor: First of all, I'm curious about the various ways this is handled and looking for ideas. Secondly, I think that the more people ask this question, the more likely the issue is to be addressed.

I know most places probably haven't addressed the issue simply because they don't have any special needs kids in their congregation. But that's one of those chicken-egg scenarios. Maybe there aren't any families with special needs in the congregation because attending is just too hard for them.

Again, I'm not trying to give financially- and manpower-strapped churches, synagogues, and their ever-dedicated volunteers a hard time. Not in the slightest. If anything, most of us parents of developmentally challenged children really wish our kids could fit right in, without any special accommodations whatsoever. I hate the idea that anybody would think we expect them to remake Sunday school for Billy -- but would it be OK if he just walked around during story time, while listening, rather than having to sit perfectly still? We'll go with him. We'll keep him from dismantling the carefully put-together Lego Noah's ark and try to keep his singing contextually appropriate (he's just as likely to launch into "The Gambler" as "Jesus Loves Me").

Because let's face it: When it comes to spiritual growth, we all have special needs sometimes.

Reader Comments

Church with special needs child

HI Amanda. I have been reading your posts on Floortime yahoo group, so thought I would visit your site. (I also have a blog: http://wrighthappenings.blogspot.com) it seems like my son is almost exactly the same age as yours (4 in July) I like what you had to say about church. We attend one here in Seattle. The volunteers know he has autism, and he has actually always behaved himself, and can actually sit at the bible lesson and songs (I think preschool has helped with this) he has made progress in that room, and now doesn't tend to just go to the drawing table and line up crayons or draw numbers, but will actually parallel play with some of the other kids. There is only one other child with special needs that I know at the same church and she has global delays.
I am with you on having some church support with having a special needs child. Alot of my church friends don't really know what it is like though and I get more understanding from his therapists and other parents I know with kids on the spectrum. My son is good at memory verses, and he will say the same prayer before eating and we pray before bed. I try and bring Jesus' name up alot. As he moves up the developmental ladder (which he is) I pray that he can come to know the amazing love and grace of our saviour Jesus.

Thanks for getting in touch!

Hi Sarah ...

I'm so glad to hear that you have a supportive church community. I think there is room for education wherever we go -- and there couldn't be a better place to start than church. After all, most people there consider themselves a part of a "family" or should, right? And most, I'm sure, would be ready and willing to jump in to support if they just knew what to do.

I have a good friend with an autistic son and she has a great approach wherever she goes. If they're eating out in a restaurant, she asks the waitress, "Have you met an autistic person before?" Most times, that person gives her a funny look and says, "No," seeming to wonder why she asks the question. Then she gestures to her son and says, "Now you have."

I think that's a lovely way to expose people to the diversity of autism. Most people who haven't been touched by it, probably expect autistic children to be like Rainman or violent or impossible to work with. I think the people at the first church we attended saw one meltdown and figured that Billy was that way most of the time. When, in fact, he was only melting down because he was in a new place. Given a little time and understanding, he would fit right in.

After 10 minutes at our new church, he was actively seeking out other children, participating in coloring activities and singing along with the keyboard. Fingers crossed this continues!

Anyway, I'd love to keep in touch and get to know you and your family even better.

Take care,

Amanda

:)

hi Amanda :) Another fellow Floortime yahoo group member popping in to say hi! This is a topic close to my heart, so I thought I'd share my experience. We're currently in Los Angeles, and haven't found a new church home ... but before we moved here we were in Michigan at a Vineyard Church. I worked in Children's Ministry (infants/toddlers) for several years as well as working with special needs preschoolers (primarily low functioning autism) during the week. I began to see a need for a special needs ministry, or at least a way for parents to feel supported and able to attend church while their children were cared for. We had some kids that needed extra attention in the classrooms and the volunteer staff were overwhelmed. So I launched a small ministry, with a few volunteers serving as buddies for these children. These buddies could help avoid tantrums by playing with the child (positive attention! floortime options!), facilitating peer play, and also helping them attend during lessons.

I've heard of Special Needs Ministries in other churches too, but it's not widely available. You're right to point out that it's a bit of a chicken and an egg situation, I've had the same thought. I wonder what can be done to change that?

From Amanda

I LOVE the idea of a ministry of buddies! That would allow for an "inclusion" model in the Sunday school while still allowing the special needs kids to participate without interrupting the lesson for the other children.

Did you give the buddies any special training? Would you mind giving me an example, in the Sunday school environment, of how a buddy would handle a crisis?

Thank you so much for getting in touch and telling me about this. I'm going to talk to our pastor further this Sunday. I'm very excited!

Buddies

I just saw your reply on here Amanda. Thanks for the message back. Actually I wish my church was more understanding. I don't really consider my church a strong support with this, mainly I think as people just can't relate.

They don't have enough volunteers in his Sunday school group and sometimes there are just too many kids in there. I have volunteered in there myself, but don't do it every week. I love the idea of having a "buddy" for these kids, but as there is only my son and another girl I know that has special needs there, I doubt they would go for this. Though I could approach the head of the children's ministry and ask of course. It is really a good idea. Sort of like having an aide, who can help with including him with other kids etc.

That is really good to hear about your son seeking out other kids. Milo talks alot about other kids and notices them, but his ability to interact is still fairly minimal.

I noticed on your last post you said your hubby has an english accent. I am english, and Milo was born there. He has a strong accent. Where is your hubby from over there?

Anyhow, have a wonderful Easter day tomorrow!

Church with My Special Boy

Our son has not been diagnosed with autism because he is very high functioning, and the school psychologist is even on the fence if he really has autism or not. I think he has Asperger's personally, but what do I know? I'm just a mom. I am taking him soon to have a screening done, though. Going to church has become increasingly difficult for us. We have been attending a non-denominational church, and he has extreme difficulty staying in his seat for the whole service and refuses to go to Sunday school even if I stay with him. The last time we went there, the ushers tried to make me sit in the back of the church when I took him to the bathroom and let him go outside for a minute to get some fresh air and have a chat about staying in our seats at church, and he was running around in the foyer. I have to stay with my husband because we need to be a team in order to keep our son on track. One lady grabbed his foot as I was walking back down the aisle. I was so upset, I left my son with my husband and went back to the bathroom to cry. Then the usher tried to block me from sitting next to my husband! After church, the pastor sat down with me to talk, and she told me that God can help my son to have a full and good life. DUH! I don't doubt that. I'm only doubting that I can pay attention in church while constantly thinking about my son bouncing in the seat, and trying to provide snacks, books and toys to keep him from running the aisles and possibly bolting out the door. He gets upset when people he doesn't know touch him, so that was a bad experience for him also. Since then, I haven't been going to church at all because apparently we are a nuisance to the other people in church, which makes me REALLY sad. I miss being in a church. I know some people are going to say it's just an excuse, but seriously, don't go there. You should put yourself in someone else's shoes before jumping to conclusions. Going to a restaurant is also an extreme challenge, so we RARELY do that. However, no one at Friendly's tells us that we need to change our table or sit at separate tables because our son is disruptive. I am praying about this and would welcome any constructive suggestions that anyone has!

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