Fridays from the Families: Trying church again

I came across this post on the blog autism (and other stuff), and Laurie agreed to let me repost it here. She and her husband have two sons, one with autism and one without, and I love what she writes in her about me section: "Autism does not define me as a person or parent, but has sent me on some unexpected road trips." She has shared a couple encouraging updates with me about how her family is doing at church since she posted this, so this has a happy ending! Read on...

There are many reasons that attending church with our children has not been the best fit for us in the past. The bright lights of the sanctuary, the booming voice of the pastor, even the choir and the number of people walking in the hallways were more than our oldest son could bear (Not to mention the unkind sneers and whispers that we tried to ignore, but sometimes couldn't).

We have tried mellow services, alternative day services, contemporary services and bible schools. Most attempts have lead to serious meltdowns either before, during, or after the service...OR all of the above! (More than once I have had to explain why their is a child, running down the aisle, covering his ears and yelling, "Ahhhhhhhhhhhhhhhhhhh!" Some people were kind and others were, well, not-so-kind. Sad.)

Some families with children who have autism already feel isolated from society for various reasons. For us, we were a young military family when our son was diagnosed and had just transitioned to a new city; needless to say it was tough and we NEEDED the support that a great church could have offered us. Unfortunately, our experiences were such that, whether out of exhaustion, self-protection or ignorance, we had decided for many years that going to church would not be an option for us...until last night!

I saw the invitation sign in front of the church that welcomed families to their Vacation Bible School program. Fleetingly, my mind went to a place that this could be a fun experience that might help the boys to meet new friends. I decided, for the hey of it, to complete an on-line registration and began to talk about "trying it" to test my son's reaction.

Amazingly, both boys sounded excited! Crazy! Although our oldest appeared super anxious in the hours before we left, we worked through our day and he ACTUALLY WENT WILLINGLY! (Our last Bible School episode consisted of crying and clinging and needless to say, I was a permanent fixture on the pew for the entire week.)

We stayed in the lobby for while last night and chit-chatted with some of the staff, all the while listening for signs of distress. It never happened. When we picked our oldest up, we noticed he was anxiously scanning the the sanctuary to find us. When I approached him, his body was tightly wound and he yelled "What the freak!!!" three times, but no one skipped a beat to look in our direction. Thank God!

The woman who was leading our oldest son's group smiled and said he did fine. SCORE! She went on to say, " He was answering questions very honestly!" Hmmm...He is very honest; sometimes TOO honest. (I'm probably better off to not know what he said and take the fact that he enjoyed most of his experience as a gift!! Almost certainly there was talk of zombies and possibly demons; he likes to get a rise out of his audience.)

The take away for us is that we CAN attend church again! Our oldest may have his moments, but, at this point, the good definitely outweighs the bad. Attending a regular church that is supportive of our families' needs is so important for many reasons. As I said above, families with children who have autism can often feel isolated. How many friends have you lost since finding out your child has autism? A few for me, sadly. So this, this, is HUGE for us!!

What are your thoughts and experiences with attending religious services in regards to your child who is on the autism spectrum? What challenges or supports have you encountered?

What's your policy for identifying people with special needs who may need support at your church?

I spent most of Sunday afternoon hanging out with my laptop, a chai latte, and a cinnamon crunch bagel at Panera, pounding out some written policies for Access Ministry at our church. One policy, which you can read in its preliminary form below, is about identifying individuals who have disabilities or special needs that could make it difficult for them to be involved at our church. You see, while some people have visibly obvious disabilities - like the facial features of most individuals with Down syndrome or like a wheelchair or walker used by someone with a physical impairment - other disabilities aren't as obvious.

In two separate instances at our church, a few years apart, two children with autism spectrum disorders were involved in our church each week. While their behavior was not typical, volunteers in one class thought that the child was naughty (because he often flapped his hands, refusing to sit still, and because he yelled and threw things when he became overwhelmed with sensory input, like hearing too much noise or having too many people close to him) and volunteers in another class just thought the other child was withdrawn (because he never talked or made eye contact). We found out about the first child's diagnosis when the teachers spoke to the parents about his behavior after class, and we found out about the other when we converted to a computerized child check-in system (called KidCheck) and the parent typed "autism" in the section labelled "allergies and medical information." (And we're looking into adding a yes/no option with the question "does your child have any special needs?" but we don't understand all the ins and outs of KidCheck yet, so I'm not sure when and if that will happen!)

While some actions can make parents feel more comfortable about disclosing a disability - for example, a confidentiality policy to prevent the information from being shared publicly - there isn't a perfect solution to this. Even adding a question like the one we're trying to add to KidCheck isn't foolproof; some parents may ignore it if they're in a hurry, and others might not want to tell us about the special needs until they're sure they can trust us. I'm not implying that we should give up, just acknowledging that no solution will completely remedy the issue.

Here's our policy so far.

We do our best to identify individuals with special needs who may need additional support to function well in our church body. Some disabilities, though, are not immediately obvious in appearance. Additionally, others are manifested by behaviors that seem disobedient or intentional. And some individuals, especially some of our youngest participants, may have special needs that haven’t been diagnosed yet. Because of this and because you have been shown extravagant grace by God, show grace to each person you encounter.

If we find out that an individual in your class has a disability or other special needs, we will let you know. If a parent or individual shares with you that he/she or his/her child has a disability or other diagnosed special need or that the child is going through the process of diagnosis, please let the Access Ministry coordinators or a Family Discipleship staff member know and do not assume that we already know, even if the disability is printed on the KidCheck nametag*.

*As a note of explanation, allergy information is printed on nametags to advise the teachers, so if a parent lists something like autism in the field for allergies, it does print out in that space. We make sure parents understand that and advise that they remove any information that isn't crucial, particularly for children whose classmates can read. If we add a field in KidCheck for special needs, that will not be printed on the nametags for obvious confidentiality reasons.

What do you think? How does your church handle this? How do you actively identify kids or adults who might benefit from the special needs ministry program at your church?

Using person-first language shows that we focus on people (not categories)

Because we value individuals instead of emphasizing the disability, we want our words to reflect that as well. It is considerate to consider carefully how you talk about individuals with special needs, always referring to the person first instead of his/her disability. (And it's also wise to consider whether or not the disability even needs to be mentioned; oftentimes, it would be better to describe the person by name or by other characteristics.) Below is a table of respectful, person-first language and disrespectful or unkind language.

Respectful, person-first language	Disrespectful, unkind, and/or disability-first language
Individuals with special needs	Special needs people
James, who happens to have Down syndrome	A Down’s guy
Jessica, a girl with autism	The autistic kid
Intellectual disability	Retard or retarded (even the term “mental retardation” is no longer being used in most disability-related fields)
Physical impairment	Crippled, deformed, physically inconvenienced
Has ______________	Suffers from __________________
Person, child	Patient, case

Additionally, some terms meant to empower people with disabilities can also be insulting and condescending because they dismiss the difficult aspects that may accompany the disability; some examples are “handicapable” or “definitely-abled.”

We use the table above to train our volunteers, but it's not just about their own language choices. We also ask them to use this to train others in their ministry areas. For example, it’s unkind for a high schooler to call something or someone “retarded,” but I've seen many church leaders not even bat an eyelash when one of their students throws that word around. We ask our student ministry leaders to address that language if they hear it from students, in the same way that they would not tolerate derogatory slurs related to another minority group. 

And, finally, if you’re having trouble figuring out how to refer to a person, take the advice of disability ministry pioneer, Dr. Jim Pierson[1]: just use his or her name.

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[1] Jim Pierson, No Disabled Souls, Standard Publishing: 1998.

Ministering WITH, not just ministering TO

Most conversations I have with other churches begin with the question, "How can we minister to people with special needs?" While that's a good question, it's only a start.

The aim should be ministry with or alongside those with special needs. Our goal is not to simply minister to them. Throughout the Bible, it is made clear that God has uniquely gifted each of us according to his purpose (1 Corinthians 12, Romans 12:3-8, Ephesians 4:1-16). 1 Peter 4:10 states, “Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms,” and this verse does not exclude those with disabilities, nor do the ones listed in the previous sentence.

Consider John 9:3. Note that the blind man was healed and then shared about Christ to others in response to the Pharisees' questioning. Jesus ministered to him, and he ministered to others by testifying about what Christ did in his life.

We do not aim to simply minister to children, youth, and adults with special needs; we want to encourage them in their areas of giftedness and provide opportunities for them to serve as well, because they are vital members of the body of Christ. Their stories and testimonies matter as much as anyone else's.

On a practical note, here are few examples of what we do: If a class is involved in a missions or service project, the kids and students with special needs in that class are involved too. On most Sunday mornings, at least one of the greeters welcoming people and handing out bulletins is a member of our Joy Class (our class of adults with special needs). One member of the Joy Class recently read the Bible story to one of our first grade Sunday school classes, and I then accompanied her back to her class.

I know this is an area in which we have room to grow, though, so I would love to know what your church is doing or is planning to do to engage in ministry with people with special needs. Or, if your church isn't encouraging individuals with disabilities to share their gifts with the rest of the church, what do you wish they were doing?

Weekly round-up {7/4/11}

First, happy Independence Day (for my readers in the USA, that is)! I hope you enjoy your celebrations.

This sermon from John Piper, one of my favorite preachers and writers, isn't about disabilities. It's about interracial marriage. But think these words of his in light of either, and you'll understand why I'm including it in this week's round-up:

Christians are people who move toward need and truth and justice, not toward comfort and security. Life is hard. But God is good. And Christ is strong to help.

In a church or in a neighborhood, it hurts to be faced with harsh words (or even just thoughtless ones) and lack of understanding about what life with special needs is like.

At churches around the country, I've seen new pieces this week about churches hosting or serving at a basketball league for kids with autism and a biking camp for kids with Down syndrome or autism. Doesn't it warm your heart to see options for such a typical summer activity - camp! - made available through churches to kids with special needs?!? And, on those lines, here's an article about a new special needs playground in Huntsville, Alabama, which is the hometown of one of my best friends; I'll be checking it out the next time I'm there!

And this piece by my friend Jared at Sojourn Kids highlights my church's curriculum, Treasuring Christ, and how it can be used for kids with special needs: Advantages of a unified curriculum for children with special needs

I liked seeing that this special needs resource company understands that churches might need resources too. I have no doubts that they could be using this as a way to sell more products, but it's a promising sign of church engagement with the special needs community if companies are viewing us as a potential market.

I generally find good stuff at The Thinking Person's Guide to Autism. This article is no exception to that: Unfriendly Consequences: What Competition for Limited Resources Does to the Autism Community and Autism Families

And grab your tissues before you mosey over to this post by Jessica at four plus an angel. It's called No Words, and it's about the child with autism who was ministered to finding ways to minister to another. And it's precious.

And, finally, if you haven't seen this featured issue of the Today webzine, with a focus on special needs ministry, by the Evangelical Free Church in America, check it out. It's so good, and it includes pieces from Connie Hutchinson, who is the Director of Disabilities Ministry at First Evangelical Free Church of Fullerton, California and who I heard speak at the Accessibility Summit this past spring, and her daughter, who eloquently expresses her desire - as a woman with Down syndrome - to be included in ministry.