LIFE IS A SPECTRUM

prayerhands

It's Sunday, and the Broadfeet are going to church.

For a long time, I didn't go. It wasn't for any particularly big or important reason. I was lazy and given the opportunity, I preferred not to get out of bed on Sunday morning.

After I had a child, I wanted to find a church. At that time, if I'm honest, my interest was probably as much social as anything else. I wanted Billy to have the kind of fun, joyful church experience I had growing up. My church group performed music and plays, went on trips together, went bowling and roller skating. It was great.

I've written before about the difficulty in finding a church that would embrace my special needs child and his challenges. I'm not going to write more about that today. I'll just say that I feel it's nothing short of miraculous that we eventually found Good Samaritan.

Over the last couple of years, from Billy's autism diagnosis until now, I've been on a kind of spiritual journey. Of course, that makes my thought process sound a lot more coherent than it usually is.

Take prayer, for instance. I've always prayed. I always found comfort in it without really thinking about it. But it's been really hard over the last couple of years to know what to pray. Do I ask God to take the autism out of Billy? If I think He's capable of that, why not ask Him why He hasn't already done it? Why not ask Him why one kid is neurotypical and another completely unable to speak? A lot of my prayers end with, "You can read my mind - could you just pick out the good stuff and ignore the rest?"

Then I feel so guilty. I remind myself how lucky I am. I've known dear friends who have lost children, and they would love to have the problems I have. And yet, many of them seem to have unwavering faith.

Despite my inner conflicts, though – or maybe because of them – I still find comfort in my prayers. Even when they're little more than, “I don't know what to say ...”

Billy's love of church is pure and unconflicted. He likes the candles and the playground and the lovely women who look after him. He belts out Sunday School songs at every opportunity, and he prays easily. He does not like wearing suits or lots of talking. Last week, we had an African-themed service, led by several Nigerian members of our congregation. Billy got to play a drum during the music and dance to the offering plate. If he has an idea of heaven, I imagine that's pretty close to it.

I haven't had the best track record of teaching him about religion. It's hard to know what kinds of concepts he can handle. He loves the Nativity story – there are animals and a baby and kings and stars -- all things he's really big on. Easter, though, was a story we decided to save for later.

He loves the Old Testament: Jonah is the MAN as far as Billy is concerned. Ditto to Noah and David during his giant-fighting days. The New Testament is kind of thin on giant-fighting but he does get a kick out of the song about Zacchaeus, the tiny tax collector who climbed up a sycamore tree.

The only time I've ever attempted to talk to him about the afterlife was when our cat, Biggie, died. Dave had just called me from the vet's office to tell me that Biggie couldn't be saved from her kitty virus. I was crying.

Billy: Mama is crying.

Me: Yes. I'm sad, because Biggie ... is in Heaven. (At this point I realize I'm already in over my head.)

Billy: (looking around) Where is Biggie?

Me: (deep breath) She has gone to Heaven to ... to be Jesus' cat. (I have no idea where that came from.)

Billy: (face like thunder) NOT Jesus's cat! BILLY'S cat!

And he ran screaming from the room. I realized that I had inadvertently given him the impression that either Jesus had stolen his cat or Biggie had shown a complete lack of loyalty and dumped him for a celebrity. Either way, not good.

But his heart is tender, and on some level, he must have forgiven both of them. Because he prays, easily.

Every night, Billy tells God the same thing. It's a simple prayer I said to him once and he has, in true Billy style, remembered it and repeated verbatim ever since. It's a prayer free of doubt or soul-searching or conflict.

“Dear God,” he says, “Thank you for my whole family. Please keep them safe. I love you. Amen.” Then every time he looks up with me with bright eyes and demands, “Can YOU say 'Amen?'”

Amen.

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There's a prayer for that.

I just posted on this topic and linked this post and Church with the special needs child:
http://findmyaddress.blogspot.com/2010/11/church-with-special-needs-child.html

And when I read, "You can read my mind - could you just pick out the good stuff and ignore the rest?" I thought, "There's a prayer for that."

Sure enough, in the Book of Common Prayer, after the Prayers of the People, the Celebrant selects a concluding collect. One of the choices reads, "Almighty God, to whom our needs are known before we ask: Help us to ask only what accords with your will; and those good things which we dare not, or in our blindness cannot ask, grant us for the sake of your Son Jesus Christ our Lord. Amen."

This is a wonderful post and something that many churches should think about when having nurseries and children's church. If we want everyone to come and feel welcome, we have to provide for the needs of the entire family.

The journey goes on

I can't say what it's like trying to find a church for a special needs kid, but I can say that as a person on the spectrum it can be rough not only finding a place but an identity. I've been on a spiritual search since my early teens and grow a little more every day. I identify as an Atheist for simplicity's sake, spirituality is a spectrum in and of itself, with infinite shades. I'm planning on trying a Unitarian Universalist congregation in this coming week.

Good luck to you on your journey!

Oh Amanda! What a touching post. We stopped going to church when my son was two because we were told there was no place for him to go....unless, of course, I wanted to run the special needs class by myself. For a 2000 member church. Uhhh, thanks but no.
At 16, my son has a deeper spiritual understanding than anyone I've ever known. So what he doesn't know the Bible from front to back! Apparently, he is getting "it" directly from the Source. :)

Thank you!

Angels need pets, too

We found ourselves in a similar situation when my parents had to put their cat to sleep. I told the kids that an angel really wanted a cat, and that Gran and Papa kindly shared Zeo with her. That seemed to make them happy, but it wasn't a pet of their very own. Tough parenting moments! I also love to listen to Mikey (my two-year-old) pray and question me about God. He asked me the other day if God had hair. I think he was wondering about the crucifix we had just packed up for our move and whether Jesus had hair, but his curiosity was a good thing, I think. Anyway, great post! :)

Thank you

Well, you succeeded in making me cry. This is such a lovely and true post Amanda. Thank you for writing it.

My family has also struggled with finding a church. I have a very personal relationship with God, and pray daily. But I want to raise my kids in a church where everyone is accepted, without exclusions or judgements. That's a hard church to find. I'm glad you found yours.

Billy's relationship with religion is nothing short of beautiful. Hugs to your little one.

a prayer I can relate to

That is a prayer I can relate to. Amen! I was raised Jewish, though not particularly religious. After losing my brother to cancer and having a son with autism, as well as a number of other things, I have lost what little faith I ever had. But I still identify as Jewish and enjoy the ritual of religion: the songs, the holidays, the traditions.

The image of Jesus stealing your cat cracked me up. I'm sure it wasn't funny at the time, but now...

Frivolous Mom

Our spiritual journeys, I believe are continual and always changing and evolving. The important thing, for me is to remember that it is only through the trials am I able to recognize and appreciate the blessings in my life.

I love this post!

Total 10 comments

I teach Sunday school every other Sunday morning at Good Samaritan United Methodist Church. The kids in my class can range in age from 5 to 10 years old. And they are awesome.

hello-kitty-angel

The first and last time Hello Kitty will show up on my blog.

Occasionally, I have to leave Sunday school and go repent of a few thoughts I've had over the past hour, but I always leave with a fresh perspective on religion, spirituality, life, and sometimes, variations on a few songs I thought I knew.

Usually, the class is pretty evenly divided between girls and boys, but today I had a class of eight girls. All girls.

Girls and boys are different, obviously. The boys will punch one another in the shoulders, make up violent lyrics to children's songs, stick the craft pipe cleaners up their noses, one-up one another and get increasingly loud until I have to shout to hear myself think sometimes.

The girls always raise their hands before talking. Their comments aren't always on point, per se, but they do politely wait their turn.

This morning:

Hand goes up in the middle of our story about an angel breaking the apostle Peter out of jail.

"Yes?" I ask.

"Look what I have!" and an energetic five-year-old jumps out of her chair and pulls a circular plastic lip gloss out of the pocket of her dress. "IT'S HELLO KITTY!!!" she's practically screams. Several necks crane to look.

"That's awesome," I say in what I hope is an adequately admiring tone. "Now let's put it back in your pocket until church is over, OK?"

Ever polite, satisfied and happy that she has now shared this with everyone, she complies and I go back to the story.

Another hand goes up. It's reaching and reaching and reaching, so eager to share.

"Yes?" I ask this new participator.

"I have lip gloss too!" And she pulls it out of her lavendar sparkly purse. An appreciative sigh goes throughout the group about this remarkable coincidence, which prompts a general dumping of purses in the middle of the table as everyone examines the contents of everyone else's purse in the search for yet more lip gloss.

"Ok! Ok!" I tell them. "Purses away. We're at church. And you all look beautiful. But today we're focusing on how we make ourselves beautiful on the INside." I get kudos for bringing this back around to a life lesson, huh?

Another hand goes up.

"Does your comment have anything to do with Peter and the angel?" I ask her.

She carefully considers this for several seconds. And slowly nods her her gorgeously curly head.

"OK," I say. "Let's hear it."

"I'm stronger than my dad."

We all mull this over a bit before several enthusiastic voices pipe up with "Me too! Me! Me!" and "I'm stronger than my dad too!"

After the lesson we went into a bigger room outside the class to play a game. It was a kind of "Tag" game with some kids playing angels and some playing guards and some playing prisoners. At first, they all wanted to be angels, until they realized that the guards had the most fun. One of the “prisoners” nearly got to the point of tears, so fearful was she that she wouldn't be "rescued."

Billy's class, the class below the girls in age, was in the big room too. Their class is less structured. They mainly play with toys, listen to music and have a snack.

The “tag” game with prisoners and angels totally enthralled Billy. He was so excited watching the girls play that he started jumping up and down and running in and out of the players, tagging people randomly.

He approached one of the girls – she's two years older than him but about the same height – and got very close to her. A bit too close for normal social comfort, probably.

But he had a big smile on his face and I could tell that he wanted to say hello. So I got down on my knees next to him and led him through the process of saying, “Hi, my name is Billy!” which he handled pretty well with prompting.

The beautiful big-eyed girl smiled back at Billy and told him her name.

Back in our classroom, I talked to the girls about Billy, about autism, and about how much I appreciate their kindness and patience with him as he learns things like how to introduce himself and how to share – still not his strong suit. They listened and took it all in matter-of-factly.

Later, as I was coming out of the nursery where I was picking up Willow, I saw a table of “my” girls playing with various games. Billy had plonked himself right down in the middle of them, reaching for the games and poking at the parts and pieces. And the girls weren't laughing at him or getting impatient or angry.

On the contrary. They were showing him how the games worked, which parts moved, how to make them turn. One little girl gently took Billy's hand and used it to make the spinner spin. His eyes lit up and a big smile spread across his face. He looked directly into her eyes and she smiled back.

I learned everything I need to know about angels today.

Reader Comments

Hello there!

Hi Amanda! We just connected on Twitter. Thanks for following me too! I have two daughters with bipolar and other neuropsych issues, and am getting certified in ABA so I'm excited to meet and learn from the community online who's affected by Autistic spectrum conditions. Glad to find your site. You're a kindred spirit, I can tell! Intense life, lots of resources to share, but full of humor and normal life too :). Very fun to meet you!

And I just started teaching Sunday school at my church this summer - 5th and 6th grade. Today's class was 7 boys, 1 girl. Wild, silly, and wonderfully fun. But no lip gloss for us ;).

Looking forward to learning lots from you and getting to know you better!

-Laurie

From Amanda Broadfoot

Thanks so much for getting in touch! Looking forward to checking out your blog too ...

High-five to a fellow Sunday School teacher too :-) I was nervous about signing up for that at first, but I've been so glad I did. Please stay in touch!

Total 2 comments

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!

Total 6 comments

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