Friday, May 29, 2009

Faith Based Inclusion Resources

Until I began to live with autism, I didn't understand the challenges of inclusion of individuals with disabilities.

Since my daughter regressed into autism, however, I have experienced challenges in many places. Church is one of them.

When I asked friends for resources to use in this blog entry, I didn't get many new resources. I did get a lot of "thank you's" and comments about how this is needed.

One friend wrote, "It goes beyond this, though. . . as you know. Not just communication accommodations. Attitude. . . all people being image bearers of God. Giving and receiving grace from one another as sisters and brothers in Christ. Our corporate sonship, with God as our Father. And, it's a challenge to take into account "invisible" disabilities -- Like the young woman with epilepsy who takes meds for epilepsy which exacerbate her ADHD and make it harder to catch the words in her (very smart) brain and verbalize them."

Challenges sometimes seem to be EVERYwhere. Shopping with your child, attending church with your child, advocating for your child at school (homeschooling certainly lightens the load in this area!), at the doctor's office -- some days there are challenges everywhere you go. Strangers butt in with disapproving comments. Doctors question your experience and knowledge. School staff refuse to learn about the latest strategies. Inclusion is a joke and not a reality in many buildings.

This Dan Coulter article illustrates a common experience, and not just at church. Please read, Autism and the Pew Lady.

The *one* place I think I should not have a problem is at CHURCH. And yet, I have. And at a local group of a national Bible study, too.

Log on to internet groups where parents of autistic children communicate with one another, and it's there, too. Staff who don't understand. Disapproval. Demands that a parent stay with the child when the parent needs a break. Refusals to allow the child to draw or play with a toy during story time. Misinterpreting the disability as bad behavior or poor discipline at home.

And, yet, the part of me that grew up without living with autism understands the staff perspective. They have not lived with it. They don't know.

I have been asked if I want to start and lead a ministry or class at church for kids with special needs. NO I DO NOT. I live with it 24/7. I want to be fed when I am at church and I want opportunities serve in other ministries (like the handbell choir). I know a special ed teacher at church who works in the childrens ministry as a volunteer, and she won't help with a special needs anything at church. That's her job, she says, and she needs a break from it. I understand. I need a break, too.

Our small group from church has been wonderful to us, stepping in to babysit when we need them. We are a day's drive from our family and sitters are few and far between, and having trusted church family available to help us is a blessing.

Supporting families is one act of love, but what else are churches supposed to do? My answer, is to learn about disabilities. My experience and expertise is with autism, so the next part of this blog will be heavy on autism, but NOT LIMITED TO autism.

Don't rely on FOOD as a centerpiece to fellowship. My child is one of many with food allergies, and the constant snacks, crafts made from food, and cooking projects often have me scrambling to try to find a comparable substitute or simply leave her out.

Have a Braille Bible available, and technology or an interpreter for individuals who are hearning impairments. Think about accessibility in terms of your parking lot and building for individuals in wheelchairs (and moms with twin strollers).

Consider introducing the subject of disabilities (which is usually an elephant in the corner of the church) by reading a book for children to the entire congregation. "Jessica's Little Sister," by Debi Tyree Haney was written specifically for introducing autism to a childrens ministry at a church in Tennessee. Debi tells me she has a few copies left, at $10 + shipping. (I want her to convert it to an e-book and a PowerPoint presentation for use at church.)

I bought "Jessica's Little Sister" when my child was three or four (six or seven years ago) and I asked the children's minister (at the time) if we could read it to the children and also to the adults in morning worship. My request was ignored. One Sunday, I came out of morning worship to find my daughter alone in the library. She'd slipped out of class when a parent came early to pick up a peer. The (clueless) parent left the Dutch door open. My child could have gone into the parking lot or street. I was furious. I believe part of the problem was because we'd never been allowed to teach the church body about autism. A rotation of buddies was arranged for her after that incident, which is an important support, but I still believe talking about it is important.

There were experiences when *I* was my child's buddy where Sunday School teachers created some problems, making her wait until LAST to get paper, then markers, and later snack. The teacher's demeanor gave me the impression that she thought my child needed to learn the lesson of how to wait. In a class of nearly 20 children, that length of waiting for a child with autism is extremely difficult, and can lead to an explosion. When I suggested we talk to my daughter's teachers in the three-year-old Sunday School class, I was told "no". Could they start closer to my daughter when distributing materials, I wanted to know. Nope. Don't talk to them. Put too much on a volunteer and the volunteer will quit, I was told. That situation frustrated me so much!

Other negative experiences happened when other children chastized and shooshed my child, which did nothing but make my child more anxious and become even louder. The children did not understand -- and I'd never been allowed to talk to them about autism, even though I had the materials.

The obstacles can be so great that the easier option is to "tag team" to church. One parent stays home with the child while the other parent goes to church. Sometimes, a family chooses to keep a child home as a short term compensation because a worship setting is too overwhelming. But more often, they keep a child home because advocating at church is too much work.

In addition to talking about the "elephant" of disabilities at church, I have other suggestions.

There are several "secular" resources that are helpful that I want to mention. I recommend anything by Paula Kluth, but in particular, her books, "You're Going to Love This Kid!," and "Just Give Him The Whale!". Send a group from your church to hear Kluth speak in person.

Another expert in the area of inclusion is Richard Villa. He, like Kluth, is quite creative, and his successes in school settings can be applied in faith based settings. Send a group from your church to hear Villa speak in person.

Carol Barnier is a resource for distractible children, and she has several web sites and books. Some children need to move in order to learn, and Barnier has some great ideas for appropriate movement in learning settings. Her new book, "The Big WHAT NOW Book of Learning Styles," is one of my new favorites. Barnier's presentations to homeschool conventions are available here for purchase(search for her by surname), and, although these presentations are about homeschooling, I think they'll be helpful in worship settings, too, so, I highly recommend her presentations about teaching the distractible child and the one called, "Don't Miss the Gift In This Child".

Ross Greene, PhD's book, Lost at School, is excellent (homeschoolers, don't let the title fool you). (See my post about "Lost at School".)

Children in Sunday School classes need a bulletin just as much as adults in the sanctuary do! Visual schedules are helpful for many individuals with "invisible" disabilities like autism. Consider Boardmaker software for the church. (Some libraries own a copy to loan to patrons.) Linda Hodgdon has some free icons for visual systems on her web site.

Disability is Natural is not specifically a faith based resource, but I want to include it here. I heard Kathie Snow speak several years ago at a church, and, while she never laid a hand on me, I feel like she figuratively grabbed me by the shoulders and shook me hard. She told our group that "WE ALL BELONG". We are all human beings and we don't have to do anything else to belong. Exclusion ANYwhere is wrong, because we ALL belong. Snow is a catalyst for changing the way I think about disabilities, and she has some thought provoking articles on her web site.

Barb Newman and Newman is the author of two books (I own the one about autism). I've seen Barb present in person, twice, and she is fantastic! Barb has just the right words to explain autism to an audience that knows little-to-nothing about autism. Her presentations are full of hints and tips and real life examples. And she knows more than autism. Barb is the author of "Autism and Your Church", and "Helping Kids Include Kids with Disabilities". CLC Network's web site is packed with resources. Please take the time to check it out. CLC Network has produced a training DVD, a social stories template for a worship setting (you add the names and the photographs), and they will come to your church to train staff.

You'll also find Barb Newman at the Calvin Institute of Christian Worship: . This article was first published by the Calvin Institute of Christian Worship,

"Heads Up! is a company designed to provide expert information and products for special needs children. Our items have been selected to accommodate various learning styles and strengths, regardless of curriculum used. These special needs products have been found to be especially helpful for children who are distractible or hyperactive." (That quote is from the Heads Up! web site.) Heads Up is one of my favorite resources. Request a catalog for your church. Faith based settings may be interested in seat cushions, visual timers, fidgets, just for starters.

Heads Up! owner Melinda Boring is a popular speaker at homeschool conventions. One of her topics is about modifying and adapting curriculum, and some of her tips may be helpful at church. Search for her surname, "Boring" at Rhino Technologies to purchase audio CD's of Boring's presentations. Search for "disabilities" at Rhino Technologies, you'll find yet another set of options, although I am unfamiliar with them.

Here's the part of my post where I really get rolling with my "collection" of links and resources. Hold on tight, because I'm going to toss out a bunch in a hurry. *grin* I pray that these resources are helpful.

Kathleen Deyer Bolduc is the mom of a child with autism. She's written a couple of books. I have enjoyed "His Name is Joel" very much. Bolduc poured out her joy and pain in this book, and I suspect most autism moms will identify with her experiences. I met her a couple of years ago when she presented at a conference -- she is a gem.

Another mom with a wonderful book for parents living with autism, and for families and friends is Kristi Chrysler. She's a homeschooling, biomedical, Christian mom who went through autism, lupus and divorce in a short period of time. If you are trying to understand the perspective of an autism mom, I recommend Chrysler's book. She captures the challenges of autism intervention and dietary changes in the pages of her book while offering encouragement. I met her a year ago when she presented at a homeschool convention, and she is an incredible encouragement! I want to re-read her book and journal along the way.

I've seen Bill Gaventa present in person. He is a fantastic speaker and has a gigantic heart for faith based supports. My previous post contains notes I took from his presentation. You can find him here:

Journey Covenant Church in Redondo Beach, California has a ministry for children with autism. I'm proud to know some wonderful people at this church, from our years in California. Contact info is available at their web site: or

A May 30, 2009, "That All May Worship" conference featured keynote speakers Erik W Carter, author of “Including People with Disabilities into Faith Communities: A Guide for Service Providers, Families and Congregations” from Madison, Wisconsin, and Jackie Mills Fernald, Director of McLean Bible Church’s Access Ministry, the largest faith based ministry for people with disabilities in the country.

Local Churches Use Technology to Help the Hard of Hearing

Faith Communities and Their Inclusion of People with Disabilities:

The ministry of Jack and Rebecca Sytsema, Children of Destiny: offers bulletin inserts for autism awareness and daily prayers sent to your e-mail inbox so that you can pray for your family or for a friend.

Interfaith Disability Connection Blog: Be sure to check the blogroll along the side for links to more related blogs.

A Jewish perspective from Rabbi Aaron Bergman: Treatment of disabled puts souls at stake:

Friendship Circle and Lifetown are absolutely incredible!

McLean Bible Church:

The Gray Center has some resources, including a few blog entries:

Friendship Ministries:

Training DVDs and trainers are available here:

Godly Play is being used in some churches. A friend in Florida sent me this link.

Country music artist Tammy Vice has resources on her web site: Go to the lower right hand corner and click on information for special needs ministry leaders and look for the pdf files with info for teachers. Vice recommended this book to me: Let All The Children Come To Me by MaLesa Breeding, Dana Hood, and Jerry Whitworth, which is a workbook for teachers that addresses attitudes and then gives some practical steps to teaching children with special needs. (Spend some time listening to Tammy sing, too!)

The Evangelical Covenant Church has recently added information related to disabilities and special needs:

Joni and Friends:

First Presbyterian Church, Birmingham, Michigan: Look for Celebration Station on the web site. This church presents conferences on inclusion in faith based settings, usually in the winter. You might e-mail them for information if you're interested.

"The Special Needs Ministry Handbook: A Church's Guide to Reaching Children with Disabilities and Their Families" by Amy Rapada

The ARC often has local supports. Check your local chapter. This chapter offers information about local faith based support communities on the back of it's newsletter.

I used the "University of Google" to search for "special needs ministries". Lots of hits there. Here are a few:

If you have read all the way to the end of this long "epistle", I thank you. ;)

If you have more resouces, please send them to me and I will add them. I'll make this a post that will grow as I come across more resources.


SisterTipster said...

Well put Penny! All children are special to God, and "normal" is just a town in IL! ;-))

I suppose folks are just 'uncomfortable' with what we are not familiar with, but with gentle teaching and love, everyone in church can have their needs met~Let the children come...and I am guessing, in fact I know He didn't mean just certain ones!

Tim Tinkel said...

Hi Lori, I found your Hearthside blog through the Homeschool Crew facebook page. That led me to your autism blog. I, too, have a child on the autism spectrum. My 8 yr. old was just diagnosed with aspergers this past December. This post really hit home with me. We have had similar problems with our son in church settings and have also thought of "tag teaming" with one of us staying at home. I have not had time to explore any of your resources yet but am looking forward to being able to in the near future. Thank you for the blog and the hope that you have given. On a side note, I, Tim, have just been selected for the new TOS Homeschool Crew, and have noticed that you are one of those that are staying on for another year. I am looking forward to it. As the only man on this years crew, it should be interesting!

Penny said...

Tim, WELCOME to the Crew! And, I'm Penny (not Lori). Stick around my blog -- I write a lot about autism! ;)

Penny said...

Cheryl, yes, 'uncomfortable' and feeling not competent to deal with the challenges some children bring. I understand that.

I should have said this in the ultra long "epistle": Families dealing with autism have so many challenges every where they go, that churches need to make it easy for them to attend. I know *many* families who simply gave up on church.

JamBerry said...

Hey Penny! We're tag teamers, more or less. There is no Sunday School class our Jman can/should attend, nursery isn't an option (he's 10yo), and the only shadows for him are us. We start out at the service all together, usually bringing along whatever he's currently interested in that might help him stay a little longer (dry erase board, mp3 player, even a Nintendo DS--yes we let him play video games during church sometimes!). When he's had all he can take, one parent will rescue him from the torture that is church worship. It gets really old, and very much keeps not only Jman from connecting at church, but also the rest of the family. I don't blame the folks who give up on church at all. Hopefully they don't give up on God too as a result of the failures of church.

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