Different members. One body. {1 Cor 12:12-26}

For just as the body is one and has many members, and all the members of the body, though many, are one body, so it is with Christ. For in one Spirit we were all baptized into one body— Jews or Greeks, slaves or free—and all were made to drink of one Spirit.

For the body does not consist of one member but of many. If the foot should say, "Because I am not a hand, I do not belong to the body," that would not make it any less a part of the body. And if the ear should say, "Because I am not an eye, I do not belong to the body," that would not make it any less a part of the body. If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell? But as it is, God arranged the members in the body, each one of them, as he chose. If all were a single member, where would the body be? As it is, there are many parts, yet one body.

The eye cannot say to the hand, "I have no need of you," nor again the head to the feet, "I have no need of you." On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together.

1 Corinthians 12:12-26, ESV

Fridays from the Families: Invisible

title: No66 19 mar 09 Invisible
photographer: mcfarlandmo

Our guest today is Kimberly Lavoie, the mother of a seven year old daughter with PDD-NOS and three-and-a-half year old twins. She writes about issues of special needs parenting and faith at The Simple Life. Thank you, Kimberly, for letting me share this with our readers today!
 
It is a rare Sunday that our family worships anywhere other than our home church. We attend a small church, and my husband and I are both heavily involved in lay ministry, so we try hard to be there each Sunday – often planning trips to leave Sunday after church and return Saturday night.

Last weekend we were visiting with some dear friends and didn’t have to be at our church, so we visited their church. It is larger than ours with a well-organized children’s program. I mistakenly thought my oldest daughter would like being in Sunday School class with more kids her age. Maybe I didn’t prepare her enough, or maybe she was too anxious from all of the other changes to routine. For whatever reason, she balked and started saying she wouldn’t go to Sunday School before we even left our friends’ house. Sometimes she does this at home too, so we ignored her protests and calmly drove off to church and dropped her twin siblings at the preschool department. I convinced the child to come see the Sunday School room and meet the teacher before making her final choice. The teacher was doing some warm up activities with early arrivals, so it took some effort to catch her eye. She asked my daughter’s name and grade in school, then assured us we were in the right place…still seeming a little confused as to why there was any hesitation. I asked her to explain what they would be doing in Sunday School hoping that one of the activities would grab my daughter’s attention and entice her into the room. No such luck. We said goodbye to the teacher and went to find our friends in the worship center. She seemed relieved and I decided maybe this was the better choice if she was really that anxious about it. We walk a fine line with the child in church – too bored or too stimulated (by anxiety or excitement) – either way can lead to a meltdown. I knew I could keep her engaged somehow during church; dropping her against her will in a new situation was playing with fire.

As we settled into our seats I noticed with my peripheral vision a young man sitting a few rows behind us. With a brief glance I could see that he had some special needs, too. There was an older woman sitting with him to give him support. I didn’t sit and study him or his caregiver, but it was obvious that they needed understanding and care. It seemed he was perhaps non-verbal as I heard some vocalization later in the service that was indistinct, though probably entirely understood by his companion. Meanwhile, my daughter was doing her best to behave. Sandwiched between mom and dad, she buried her face into Daddy’s backside while we were standing to sing. I decided she needed some sensory input, so I sat next to her and squeezed tightly giving her some pressure on her arms, legs, and even on her head. This seemed to calm her down. She enjoyed the music, though we didn’t know most of the songs. During the sermon I found her some paper and a pen, and she doodled away for the rest of the service. We saw the young man later being pushed in a wheelchair by the same woman. I smiled at them to try to communicate my empathy.

I keep pondering this whole experience – while I could see with a glance that the young man who sat behind us needed special care, our family’s need for the extra measure of support and encouragement went unnoticed. I don’t want to level any sort of complaint at our host church. They had no way of knowing our situation, which is my point. It’s more that I want to draw a lesson for my own ministry and others. We may never know which family needs that extra smile or reassurance. We may not know who needs some encouragement or understanding. I hope I am always open to listen, and more importantly I want my eyes to be sensitive enough even to see the invisible.

Special needs ministry policies: Start with the WHY

This post is part of a series on special needs ministry policies. Please see yesterday's post for a little more context: Your special needs ministry policies are worthless if they only live on a shelf.

When someone asks about policies, they're usually asking about how our ministry works - what we do, what our procedures are, how we handle certain circumstances. However, it is just as important – for everyone on your team, from staff to volunteers and even to yourself – to know why you’re doing what you’re doing. What’s the point? What’s our mission? What do we want to accomplish? What does the Bible have to say about this? What qualifies as a “special need” anyway?

You need policies, but you also need a purpose. That's why our policies are called the Access Ministry Guidebook, with the subheading Purposes, Policies, and Procedures to Enable Ministry. The "how" aspects of your policies do matter, and I’m working on many of those pieces right now for our guidebook. We do need to document what the plan is when a new family arrives and how to handle bathroom needs in special needs ministry settings. We do need to outline how to handle common issues. We do need to define rations of adults to children in various settings. All those "how" elements do matter. If you only include the what and the why without the how, then you'll have a concept with no practical application. 

Our policies start with the what and the why and then dive into the how. The first five sections are listed below and linked to previous posts in which I discussed the topic.

1. The church’s mission/vision statement. My church has placed a great deal of trust in me as I lead Access Ministry with my husband. As a reminder that we operate within our church body and as part of that larger vision statement, we put that in the forefront. Because we're technically part of what we call "family discipleship ministry" at our church, we also have included the purpose statement for that ministry area. 
2. The special needs ministry mission statement and goals. We have tweaked this a little from when I posted it, but it's still close to what you'll find here.
3. The biblical foundation for special needs ministry. I usually put this first in any communication we have, because what the Bible has to say is far more important than what we've set as our mission statements. However, we've found that (a) it helps for our folks to have a little context for why these verses fuel our ministry and (b) that when verses are listed first, many people skip past the verses to find the meat of the guidebook (overlooking the fact that the meatiest parts are those verses!). That's why the biblical foundation is section three in our guide. It isn't exactly like this post, but that's one of the places we started from. Also, you might want to check out my Scripture Saturday posts in which I post verses related to special needs ministry.
4. Clarifying note: Ministering with NOT ministering to: The wording of this post is very similar to the wording of our policy on this.
5. What are “special needs” anyway? I realized that many of our volunteers were asking this question. See below for how we've answered it.

Defining special needs can be tricky. Here’s the draft from our guidebook about that topic:

While the educational definition of disability includes 13 handicapping conditions and the federal definition for adults is even broader than that, we aren’t concerned with every one of those categories. What we do care about is people, and we primarily focus on those disabilities and special needs that could hinder an individual’s involvement in our church body. For example, we need to know about food allergies, particularly for those who are too young to protect themselves, because we do serve snacks and other food at times and we want to keep individuals with allergies safe. If an individual’s mobility is limited in some way, then we wouldn’t ask him or her to climb the stairs and we would want to be intentional about involving him or her during game times or outside play times instead of, for example, parking the wheelchair in a corner and ignoring the person. If a disability impacts a person’s behavior or ability to learn, play, or interact with others, then we may need to make some accommodation or modification for their involvement in our church.

Many special needs have names – like autism, Down syndrome, seizure disorders, cerebral palsy, and others. While it is helpful to know those names, it is more important to know the individual. Each label is an attribute of a real individual created by God and not the defining characteristic for that person.

You'll see that I answered the question and sidestepped it all at once. Why? Well, the definition of "special need" in a church setting can vary depending on the context and stage. For example, a child with Down syndrome at our church - I'll call him "Jeremy" - is in elementary school and needs a one-on-one buddy to support him in his class; without that support, there would be barriers to his involvement in class. When Jeremy was two, though, the developmental differences between him and his same-aged peers weren't significant; Jeremy didn't have any barriers to involvement then, so he didn't need much extra support from Access Ministry. On the other hand, we have another elementary student who has Down syndrome and does just fine in her grade's class without any support; even though she's older than Jeremy, her needs are different. You see, it's not the disability label that requires support; it's the needs of the individual.

Tomorrow I'll be sharing a fantastic guest post with you (so excited!), and next week I'll dive into the "how" parts of our guidebook.

Finally, if you're thinking, "wow, I would love a copy of this Access Ministry Guidebook!" ... be encouraged! As soon as it is complete and has been reviewed by some colleagues, I'll be sharing it here at no charge. I would love to help equip other churches - your church, perhaps! - in special needs ministry. I'm willing and eager to share anything we're learning at Providence to help other churches.

~+~
And a couple of quick logistical notes: 
(1) I've added the option to subscribe via email. I've always had a feed which provided this option, but I recently realized that it wasn't a simple process to subscribe, especially if you're not tech-savvy. If you want my posts to come to your inbox, enter your email in the box on the right, just under my picture and bio. You'll have to complete a couple of additional quick steps after that, but it's a painless process! 
(2) I'm thinking about adding one book review - related to special needs ministry - every week or every other week. I think it could be helpful, but I have a few concerns. I would LOVE to get your input on any/all of these:

• I am critical of several of them - though not all! - and I don't want to become one of those ministry bloggers who tears others down with my words. I know I can disagree in a civil way, but is it a good idea?
• I have been toying with the idea of writing my own book. Would it be in poor taste to publicly discuss other books? My concern is that I don't want any critiques to seem as if I'm just being critical so I can later say, "...and this is why you should buy my book." (Am I overthinking this?)
• Currently I post the weekly round-up every Monday, a guest post at least a couple Fridays a month, and a passage from the Bible every Saturday, with Sunday as the blog's day of rest. Adding a regular book review would take one of the remaining days. Is it worth it?  

Thanks!

Your special needs ministry policies are worthless if they only live on a shelf.

I was trained as a teacher. My master's degree is in education, not in ministry or theology. The last policies I wrote weren't for a church; they were for effective goal-setting and instruction in special education classrooms taught by Teach For America corps members.

As such, I know that the field of special education is the most policy- and paperwork-heavy of any corner of education. This isn't because IEPs are fun. In case you don't know that lingo, it stands for Individualized Education Program, and it's a legal document that details the strengths, needs, and supports for each child receiving special education services. IEPs are useful because each child is unique, and the needs of each child with a disability are also unique. IEPs are necessary because kids with special needs haven't always been guaranteed the free and appropriate education that legislation now ensures them and because research shows that individuals with special needs are more likely to be abused and neglected than their non-disabled peers.

For the same reasons, it is useful to have policies for special needs ministry, regardless of how formal or informal your church and ministry are. And putting them in writing is crucial because no ministry should have any person as its focal point, except for Jesus Christ. If my brain holds all of our policies, then I am at the center of it. And I'm not enabling anyone else to lead or serve well.

However, formal policies won't help you if they're not used. Actually, they can make you more liable if something problematic, injurious, or even criminal occurs in your church, because a policy that is written but not followed shows that you knew better but didn't act on that knowledge.

Let me tell you about the first special education guidebook I wrote. It was a beautifully rich and detailed 189 pages. It answered questions that had been lingering in Teach For America practice but had never before been answered. I was incredibly proud of it, as was the vice president who managed my work. And? No one read it. It sat on many shelves. It lived electronically on several servers, rarely or never accessed. It was well-written and strategic and potentially useful.

Problem was, though, that its potential was never realized because no one used it.

Scratch that. I used it. I copied and pasted sections when the numerous emails came my way from program directors around the country, asking me how they should handle various situations. They typically asked about situations that were described in the guide, with questions that were answered there with words and diagrams and examples ... that few people ever saw.

Where did we fail? We focused solely on the guide, perfecting the policies. We put little to no effort in the roll-out. We didn't communicate its usefulness, and we didn't convince anyone that they needed to know what was in it. We knew that it was useful, and we mistakenly assumed that others would know that too, without having to sell them on it.

Don't write policies if you're going to make that mistake. Don't bother wasting your time if you aren't going to use them and if you aren't going to share them. If you have space on your shelves to spare, I can recommend several worthwhile books to fill it. (Or you can send me your bookshelves. Mine have books stacked two or three deep because I don't have enough bookshelf space!)

I will be offering tips for training along with each policy area I discuss in blog posts, so don't panic about having to figure that out on your own. Please understand that I'm not trying to scare you off. I just want you to understand from the beginning that I don't write policy or talk about it as a simple exercise. It matters far too much to leave it at that.

Your church should have a plan for welcoming people with special needs. But don't get confused: it's not the plan that matters. It's the outcome: welcoming people with special needs. A plan on paper can't do that; a plan in action can.

And, finally, any plan - on paper or in action - is powerless without Christ. The aim isn't to welcome people with special needs to show that we love the gospel. It's not even about the gospel first. It's about the gospel. Period. It's about loving Christ because he first loved us and loving others out of the love and grace we have experienced from him first.

And now I'd love to know if you have any specific policy-related questions. There's a lot of ground to cover here, but I wouldn't mind adding a topic or changing my planned order of topics if it would be a blessing to you. What would you like to know?

What I take for granted at church because my kids don't have disabilities

I had the privilege of guest posting on one of Key Ministry's blogs this week, Church 4 Every Child. Dr. Steve Grcevich is a physician specializing in child and adolescent psychiatry and President of Key Ministry, and I am humbled by his kind words at the beginning of the post because I have a great deal of respect for him and his team too. Here's the beginning of my post over there and a link to read the whole thing...

I just watched The Blind Side with my husband this weekend, but I already knew about one scene. I had heard about it from a sermon or two and read about it in at least one book. In it, Big Mike looks around his new room and tells Leigh Anne Tuohy, the mom of the family who welcomes him into their home, “I’ve never had one before.” She says, “What, a room to yourself?” And he says, “No, a bed.” As she walks away, tears in her eyes, it’s obvious that she has been faced with a reality that is starkly different from her own.

If I want to go to Sunday school or a worship service, I do. If I want to serve in a ministry on Sunday morning or go to our church’s monthly leadership training, it’s not a problem. I have a two-year-old son and a four-year-old daughter, and if I want to do those things, I just take my kids to their class or childcare. If we need a babysitter, we call the girls across the street, even occasionally allowing the eleven-year-old to watch them for short stretches.

Like Leigh Anne in The Blind Side, I don’t regularly think about what life is like for kids without beds as I place my son in his bright blue racecar bed each night. And I don’t think twice about bringing my children to church or calling a trustworthy young sitter to come over so my husband and I can have a short date.

Read the rest by clicking here to head over to Church 4 Every Child.

Weekly round-up! {7/25/11}

Families increasingly shoulder caregiving burden. This describes a study about those caring for individuals with life-long disabilities, "caregivers reported feeling stretched financially and emotionally, with 1 in 5 indicating that a family member quit their job due to caregiving responsibilities and the majority saying that they felt tired or stressed some or most of the time." Can the church help them?

A friend of a friend will be releasing an e-book this fall about their son's autism diagnosis and the first year following it. The title is Speechless: Finding God's Grace in my Son's Autism, and I am looking forward to reading it! Here's a little more about it.

When I taught in Texas, "mental retardation" was the category in which a few of my students were classified for special education purposes. Last week Arizona joined the list of states changing the term to the less emotionally-charged and negatively-connotated "intellectual disability."

Here's a news blurb about exposure to secondhand smoke as a possible contributing factor to developing ADHD and other disabilities. I think it's important for those of us in disability ministry to pay attention to news bits like this (and, along these lines, the multiple reports I've seen lately about possible genetic and environmental links to autism), primarily because these issues matter to parents and family members and people with disabilities.I haven't linked to these sort of news blurbs and articles in the past, but I'll start doing so. One warning, though: I don't share these blurbs with parents, and I think you should be sensitive not to bring up any information like this is such a way that it could communicate "you could have done something to cause this disability." Trust me, that doesn't help. I've been on the receiving end of well-intentioned but hurtful suggestions that a change to my diet or habits might have prevented or could now reverse my rheumatoid arthritis. Even if it were true that I could have done something to avoid the disease, what good does that knowledge do me now that I already have it?

My friend Mike of Making Room and Special Needs Ministry shared these ideas of things that can "feed" a child's sensory needs.

The Coffee Klatch shared Temple Grandin's top five tips for parenting a child with autism. Items 1, 2, 4, and 5 are all useful for ministry leaders as well, though I would advise against #3 in most church settings.

I found out about Cassi through Amy at The Inclusive Church, and I am so thankful for that online introduction via her blog. This week Cassi shared some sample forms from her church's special needs ministry. So useful!

It warms my heart when friends read something related to disability and theology, think of me, and email, Facebook, or tweet me with the link. That's what happens with this one: 4 Things I've Learned about God through my Baby who was Born Blind

On a less encouraging note...

•  The behavior of a man with autism at church was misinterpreted, and he was handcuffed and detained by a police officer. And neither the church leader quoted nor the police spokesman seem to think that they should have handled it differently or proactively learned about autism to be able to differentiate between suspicious behavior and the manifestation of a disability. Sigh. Read about it here.
•  Read this thought-provoking opinion piece: Ignoring the disabled is the new racism

And, to close my round-up this week, here are some great stories from churches around the country: one that is in the running to receive funding to build an accessible playground that they will make available to the public, one about a camp - called Camp Able - run by the Episcopal Diocese of Southwest Florida, and one about the FACES of Autism camp in Georgia that I mentioned last week.

And one of our families at our church will be attending a Joni & Friends family retreat next week, and I'm looking forward to sharing their experiences with y'all once they return. I'm so excited for them!

The precious and hopeful word "but" {Psalm 73:26}

My flesh and my heart may fail, 

but God is the strength of my heart and my portion forever. 

{Psalm 73:26}

A lesson in safety from an outing with my kiddos

Yesterday we trekked to Monkey Joe's, a place o' fun filled with inflatables that bring great joy to my children. The first time we went, I was apprehensive because I know they're little - Robbie is 2 and Jocelyn is 4 - and bigger kids could knock them down. After our first few visits, though, my kids had the confidence to run the place. And I was confident about that too.

Until yesterday.

I knew it would be crowded, given that the forecast called for 101 degrees. Now I grew up in Florida and taught for a few years in south Texas, but even I will admit that 101 is hot. Monkey Joe's is an air-conditioned place where kids can run around. I knew we wouldn't be the only ones to find that appealing on such a hot day.

It was crowded. The crowds in general weren't the problem, though. Two school/camp groups were there. One was a perfect model of a group of kids who had been instructed about how to behave respectfully and who were held accountable to that by their leaders. The other group ... well, they were the opposite.

We had planned to stay for a few hours, but the second group changed our plans. My son, who used to act like he owned the place, asked to be held instead and clung to my neck. My daughter asked me last night, "Mommy, why were those big kids so mean? Do they not know about Jesus? Maybe we should have told them Jesus loves them and died on the cross for their sins."

The leaders of that group all sat at tables, only interacting with the kids if they happened to run past. The kids realized this, so they behaved within sight of their leaders and wrestled with, punched, and shoved each other as soon as they were out of sight. It wasn't pretty.

Those kids never meant harm to my kids, but they weren't paying attention either. My kids were pushed down a couple times, once stuck under a pile-up of big kids for a moment. And my kids sometimes had to wait in longer lines because some of those kids cut in front of them.

And so we left. It was not a safe or enjoyable place anymore.

This is why it's important to have safety measures in place in special needs ministry (and other ministries) at church. If your church is not a safe place, then it's not a place any family can be comfortable bringing their children. If our ministry is unsafe, it's not a place where people can even hear the gospel because they're going to be too focused on safety concerns to pay attention to anything we say about Jesus.

Next week I'll be writing about church policies for special needs ministry. Policies aren't always fun, but they are purposeful. One of those purposes is to ensure that our churches are safe places for people with and without disabilities.


(And, to give credit to the folks at Monkey Joe's, I spoke with the manager who offered us vouchers to visit another time. Next time we'll call ahead to inquire about groups scheduled for that day.)

What do YOU think? (...about recruiting volunteers from outside of your church)

I recently stumbled across this ad on a volunteer site. It's a church sharing the need for volunteers in their disability ministry. It seems as if anyone - from within or outside the church - could respond to this. Here's the ad:

Description

We desire to provide 'Buddies' for children affected by disabilities during our one hour Small Groups for Kids program. Because we believe in 'main-streaming' our special needs children, extra support is needed to assist with participation, activities and transitions. A Buddy for a child affected by disabilities can go a long way to telling their families that they are treasured at New Harvest Church.

Skills

• Team Player: 1) Ability to work in with well-established programs for one hour each Sunday morning (either at 9 or 10:45 am), providing needed support for one child with a disabling condition; 2) Willingness to connect with the families of children affected by disabilities, providing a much-needed link between the often isolated with the rest of the Church congregation; 3) Commitment to stay in touch with the Special Needs Coach and Family Life Director as situations and needs change.

Requirements

1. 18 years of age
2. Love for children
3. Willingness to commit and serve 4 Sundays a month, for one hour (with 10 flexible Sundays off) for a period of one year.
4. Participation in training, orientation, which includes a background check.

I don't know anything about this, other than the posting itself. I don't know how they handle it if someone who isn't a Christian or isn't a church member responds. So we can't speculate on this church's practice.

(And, in case you're wondering, yes it can and does happen that people outside your church or even out Christianity might respond. We've had some inquire about serving with us at our church. So don't just assume, "Well, they wouldn't respond unless they had a tie to our church." It happens.)

So let's talk about this one. What do you think about the practice of recruiting ministry volunteers from outside of your church community? I'm thinking about this from a special needs ministry perspective, but you could approach it from any ministry angle.

Please leave a comment to get the conversation started!

When pop culture gets it wrong

A couple months ago I wrote about what the church can learn from pop culture. Today I want to point to a couple issues that remind us that we are to be set apart too, living in this world but reflecting Christ in us rather than the world around us.

If you read much in the special needs community, you've probably heard about GQ's stupidity. In the latest issue, they had a list of the worst-dressed cities. (And my husband would like you to know that he represents Raleigh well on that list. His words, not mine!) I found the page through a link from my local news about Raleigh's place on the list. And, as I scrolled through the other cities, I gasped and tears sprung to my eyes when I saw this: "but due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything."

Wow.

I haven't seen an apology yet for Tracy Morgan's "comedy" warning folks against messing with moms of kids with special needs and comparing those kids to chimps, and I don't know if we'll see an apology for this either. The GQ folks have changed the wording, dropping reference to Down syndrome, on their website.

Noah's dad - also known as Rick Smith - wrote about this yesterday with an open letter to GQ. As Terri Mauro said in her piece yesterday, Denying Our Children's Humanity for a Laugh,

Inbreeding? Really? But I think the key is in that last little bit: When you see people with Down syndrome as ruined, you dehumanize them in a way that makes mocking them no more emotionally involving than mocking, say, a chair. And then you also get to mock the people who get upset about your chair mockery, because, man, it's just a chair! Can't we even insult chairs now?

This, my friends, is why I argue that it's worth taking a hard line with the students in your youth group against slurs about disabilities, like throwing around the word "retarded." I've had youth leaders say, "Shannon, c'mon, there's much more important things to focus on than the word retarded." To which I respond, "so you would be comfortable with them dropping the f-bomb because there are more important things to focus on than that?" Words matter. And even more than that, people matter. This is even more about people than it is about words.

Sure there are examples of secular and religious groups who show love to individuals with special needs, and pop culture doesn't always get it wrong. But there are also countless examples of people and groups and media and even churches who insult or reject people with special needs.

Let's set ourselves apart by showing with our words and actions that "the parts of the body that seem to be weaker are indispensable" (1 Corinthians 12:22).


On a related note, though, our hearts matter more than our words or programs or inclusiveness. Check out John Knight's post yesterday at Desiring God, in which he reminds us: "We can create elaborate programs and train people to use the right words and help people behave properly toward those with disabilities — yet completely leave God out of it, ignoring or even discounting all that God has said about his own sovereignty over all things, including disability." And while you're at it, read about four things Mike Anderson has learned about God through his baby who was born blind.)

I'm not ___________ so that I can ___________.

Last week my friend Steve posted about priorities. And then today Michael Hyatt posted about the importance of saying no. And Jenny posted about how to avoid discouragement in ministry, and her first point was about getting back to the basics, which is hard to do when your priorities are askew. And fellow special needs ministry blogger Amy (from The Inclusive Church) admitted on Twitter that she struggles with that.

God is working on my heart in this area. I'm not sure that I fully agree with Steve's use of Nehemiah 6:3 to support this (because while Nehemiah is saying that he can't come down because he's doing a great work, the issue at hand wasn't the great work but the avoidance of an individual scheming against him), but we do see this principle elsewhere. Christ rests. He waits before running to a need in some instances (like when Lazarus was dying and he waited two days). We see that Christ took time to get away and pray in several verses.

You know the feeding of the 5000? And the story of Christ walking on water to the boat, when the disciples thought he was a ghost? We teach both of those stories, but we often skip what happened in between: "And after he had dismissed the crowds, he went up on the mountain by himself to pray..." (Matthew 14:23). That's why he wasn't on the boat and why he had to walk on water to get to it later. Jesus didn't get on the boat when everyone else did so that he could pray.

How can you fill in those blanks today? I'm not ___________ so that I can __________. 

We have to say no to some things to say yes to the right things.

And this is true in special needs ministry too. Right now at our church we're saying no to certain things so that we can say yes to others. We can't do everything. We do desire to grow to a place in which we can say yes to more things but we have to be wise and honest about what we can and can't do right now. Our church isn't _______________ so that we can ____________. 

For every person and every church, those blanks will be different. What are your answers to those blanks?

Weekly round-up! {7/18/11}

Our family ministry team is meeting this morning (all staff and a few key volunteers from babies through high school). I love all of the individuals who will be at our table, and I am grateful for and humbled by the opportunity to serve with them. And I am thankful for my sweet friend Kelsey, who will be a senior in high school next year and who is doing an amazing job as our Access Ministry intern...and who will be taking care of my two little ones this morning so I can be at the meeting.

Now on to the links...

From the Today show, here's a list of the best travel spots for families with special needs.

Amy shares some great forms for kids with gluten-free needs here. These would be good for churches or parents.

This blog by a different Amy - who is a homeschooling momma of two, one with Down syndrome - isn't new to me, but it might be to you. Here are two great posts from her about special needs ministry: The Church and Individuals with Special Needs and Ministry Alongside People with Special Needs.

In this raw and vulnerable article, Two Minutes to Eternity, Marshall Shelby wrestles with why God allowed his son to live only two minutes (due to Trisomy 13) and why his daughter - who had an intellectual disability - died at age two, not long after his son's birth and death. As you can imagine, this is not an easy read, but it is hopeful too.

A few easy reads, though, are these about churches who get it: a church-based summer camp program of  Familiesof Autism/Asperger’s Care, Educate and Support (FACES) in Georgia, a church who welcomed a child with autism and OCD and allowed her momma to be present and encouraged in the worship service, and the story of a woman who has been teaching first-graders at her church's Sunday school for the past 59 years - and counting! - and who welcomes kids with special needs into her classes (best line of the week, from a parent of a child with autism, about this Sunday school teacher:  I asked if I could stay in class with him, and she said, "Of course, you can.").

Also, Abby Hamilton did a great job with Fellowship Bible Church's first luau for adults with disabilities. Oh, yeah, and she's 15.  (I think if we could get her and Kelsey in a room, they might be able to take over the world.)

A few posts from the past week about struggles facing families who include a member with special needs:

• Terri from about.com on being excluded from the Harry Potter mainstream
• Jen from Living life, with a side of autism on what is and isn't normal for sibling rivalry when one child has autism 
• Life as a Sick Mommy by Living Auto Immune
• Anna from Our Life with Juvenile Arthritis about life every day, all day for her son and their family because of JRA

And here are three great posts from Jackie Mills-Fernald in the past couple of weeks. She is the guru for all things special needs ministry, as the Director of Access Ministry at McLean Bible Church, and I was thrilled when she started her blog a month or two ago!

• Why Have Respite? Part 1 and Part 2
• Ideas & Tips to Create An Inclusive Environment (which I'll be using to help with our church's guidebook for special needs ministry...which will be available here free once I'm done with it!)

The National Down Syndrome Society has a comprehensive page on just about anything you'd like to know about Down syndrome. 

I've never read this blog before, but I love the bullet points near the end of this post: A Culture of Generosity. 

While the title of this post is 10 Simple Things Good Pastors Say, it applies to any ministry leader. Or any parent, for that matter.

And this post isn't specific to special needs ministry, but Emily at Chatting at the Sky consistently captures beauty with her words and camera. This post is about the futures that God knit each of us together for (including, of course, kids with special needs).

Wonderfully, fearfully knit together {Psalm 139:13-16}

For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well. 

My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

{Psalm 139:13-16}

A how-to guide for hosting a prom for adults with disabilities

A decade ago, our church hosted our first prom for adults with disabilities. It was called the Joy Prom, and after that event, our church began a Sunday school class for that same group. I've written about Joy Prom before here and here and the Joy class here.

This is no small undertaking, so if you're interested in hosting an event like this at your church this spring, then now is the time to start. To help you out, here's the manual that one of our Joy Prom coordinators wrote a few years ago; it has been used by several churches across the country to plan their own events.

And here's a video I found on YouTube of news coverage from our 2008 prom.


I do want to share one note of caution in planning and executing an event like this, though: It's very easy to operate from the mindset of "look at this great thing we're going to do for them," setting yourself up as the doers of ministry and them as the receivers. I've seen this become problematic after the event when that mindset continues and can prevent full involvement of "them" as people who can do ministry too. I would recommend cultivating an attitude of "look at this great night we all get to have together to celebrate life;" then you're talking and thinking about each other as friends and partners in ministry from the beginning.

my office and officemates

Because I'm getting an IV treatment for my rheumatoid arthritis today (which means that I feel crummy right now but that I'll feel amazing by Saturday, praise God!), you're getting a shorter and more lighthearted post today.

Here is my "office" and one of my "co-workers."

And here are the other "co-workers."

Life is good.

What if being the church influenced how we live in our communities and not just where we go on Sundays?

Today, I'd like to call your attention to a recent report released by The Barna Group. This research is the result of posing the following question to 1,021 adults:

Many churches and faith leaders want to contribute positively to the common good of their community. What does your community need, if anything, that you feel churches could provide?

The number one answer (as provided by 29% of respondents)? Ahead of all other responses, such as cultivating biblical values (14%), serving youth/families elderly (13%), assisting in recovery (10%), addressing workplace/financial/educations issues (7%),  serving the community (5%), and engaging politically (1%)?

 

In case you're wondering, the arrow to the left (29%) represents all adults, to the top (31%) represents the response of churched adults, and the bottom (25%) represents the response of unchurched adults (defined as those who have not attended church in at least six months, not counting weddings or funerals).

Interesting points here:

• Both those who are churched and those who are unchurched seem to agree here. The church can/should be engaging with our communities on poverty-related issues. A phrase used a lot around my church this year is "engage the church. engage the city." We're not just about one or the other; both matter.
• Disability is only mentioned in the poverty category in this report. While it is true that factors like the financial hardships of special needs and the limited educational/vocational options for some individuals with disabilities can contribute to higher rates of poverty among this demographic, this doesn't capture all people with disabilities, and it only focuses on practical and not spiritual needs. (Don't get me wrong. We need to start with the practical needs. We just don't need to stop there!) We oversimplify the need if we toss "disability" into the "poverty" box and fail to acknowledge that it can be present in any box of ministry.
• There is certainly room to grow. Consider the graphic below. These are the folks who responded that they weren't sure what the church could do to meet needs in the community or who didn't think the church could do anything. I noticed first that a third of unchurched adults responded in this way. But then the churched number caught my eye. Sure, it's only 9%, but what is being preached in our churches if nearly one out of ten of those attending don't know what we could do to reach out to the community or think that we can't/shouldn't do anything? 
  
  
• One conclusion in the report was that those who were unchurched weren't typically hostile toward the church. They were just indifferent. Hostility can be harder to influence, but indifference? Imagine what could happen there if Christians were known more for being the church than simply going to church. If those 33% unchurched adults who answered "don't know" or "nothing" saw the church demonstrating the love of Christ as we serve those in our communities, what difference would that make in their indifference? And not only their indifference to the church but perhaps their indifferent to the head of the church, Christ?
• And, finally, in the words of the report: "Churches are not thought of as contributing to civic enhancement, beyond poverty assistance. Most people do not connect the role of faith communities to civic affairs, particularly local efforts like assisting city government, serving public education, doing community clean-up, or engaging in foster care and adoption, and so on. There are opportunities for faith leaders to provide more intentional, tangible, and much-needed efforts to assist local government, particularly as many services have been diminished by the economy."

From the report itself (which I recommend you check out) or the thoughts I've shared about it, what do you think? How would you answer the question The Barna Group posed: Many churches and faith leaders want to contribute positively to the common good of their community. What does your community need, if anything, that you feel churches could provide?

a rant on injustice

This is a different sort of blog post. It's not refined. It's not planned or calculated or all that intentional.

And it's not exactly the kind of post I usually write, so feel free to ignore this and come back tomorrow.

I started this as a link included in yesterday's round-up. But when the explanation became multiple paragraphs, I knew I couldn't just leave it there.

Here's an article about the Las Lomas colonia just outside of Rio Grande City in Texas. It has nothing and everything to do with this blog. Nothing, because it's about the realities of (usually illegal) immigrant families from Mexico. Everything, because I taught students from this colonia for two years.

A binder from one student still sits on my shelf, his name on the spine so I can see it every day. No one in his life cared about him, and I couldn't care enough to make up for all the neglect and pain in his life. I know he dropped out; I've heard he's serving time. I pray for him daily, and I couldn't make it through this paragraph without tears.

I do what I do - in writing this blog and in serving in special needs ministry at my church - in part because of the memory of the boy whose name is on that binder I see every day and because of the other boys and girls who captured my heart in South Texas. I write because so many other teachers didn't care enough about them to teach them before they showed up in my middle school class, woefully unprepared because previous special education classes were more focused on babysitting than actually teaching and because teachers like me were asked to switch to general education "because you're wasted on these kids and we want you to be teaching kids who deserve you." (Yes, those words were said to me by an administrator. No, I did not switch, and I even managed to hold my tongue to avoid telling that administrator exactly what I thought he deserved.)

I care enough to spend hours and energy and tears and sweat over special needs ministry because I don't want to see people with disabilities cast aside like so many of my students were, and I especially don't want to see that in the church. The colonias you can read about in this article changed me. It changed me to visit kids in homes with dirt floors and a hole in the corner for a toilet. It changed me to be given homework pages that had been soaked during rains because Las Lomas flooded badly. It changed me to have to fight so hard for each of my kids, against so much apathy and so many other obstacles.

And now that I have kids? To consider all of that from the perspective of a mother? I am undone by that.

I didn't mean to make this into its own post, but I'm beyond frustrated that so many people can become indignant over the injustice of one court case while remaining apathetic about the many injustices we encounter - and ignore - every day. (Nevermind that it seemed like more people were outraged by the outcome of said trial than by the death that preceded it.)

It hurts to feel. It can be exhausting to face injustice. It is painful to let our hearts be broken by the things that break God's heart.

But what about the alternatives? Not caring. Ignoring injustice. Living a self-absorbed life. Saying "well, my kid doesn't have special needs..." or "I was born in a country with opportunities..." as an excuse to throw away knowledge of those whose lives are different from our own.

Care. And not just about some kids on the Mexican border or the little girl whose mother was found not guilty. Care about the people in your neighborhood and in your city and at your church.

Don't just talk about injustice; care about it.

Don't turn away. Spend yourself for the Repairer of Broken Walls.

“Is not this the kind of fasting I have chosen:
to loose the chains of injustice
   and untie the cords of the yoke,
to set the oppressed free
   and break every yoke?
Is it not to share your food with the hungry
   and to provide the poor wanderer with shelter—
when you see the naked, to clothe them,
   and not to turn away from your own flesh and blood? 

Then your light will break forth like the dawn,
   and your healing will quickly appear;
then your righteousness will go before you,
   and the glory of the LORD will be your rear guard. 

Then you will call, and the LORD will answer;
   you will cry for help, and he will say: Here am I. 

   “If you do away with the yoke of oppression,
   with the pointing finger and malicious talk,
and if you spend yourselves in behalf of the hungry
   and satisfy the needs of the oppressed,
then your light will rise in the darkness,
   and your night will become like the noonday.
The LORD will guide you always;
   he will satisfy your needs in a sun-scorched land
   and will strengthen your frame.
You will be like a well-watered garden,
   like a spring whose waters never fail.
Your people will rebuild the ancient ruins
   and will raise up the age-old foundations;
you will be called Repairer of Broken Walls,
   Restorer of Streets with Dwellings. 

{Isaiah 58:6-12}

Weekly round-up! {7/11/11}

Happy Monday! Today we are exactly two months away from the new Sunday school year (and in need of at least seven more volunteers each Sunday morning) and about three months away from our first respite care event. I would appreciate it if you could take a moment to pray for our plans for each, that God may be glorified and his love made known.

(And, while you're at it, a stomach bug is running through my house right now, so prayers for health would be appreciated - particularly for mine, because I'm due for an IV treatment for rheumatoid arthritis on Thursday, and I'll have to postpone it if I'm sick. I'm already struggling with daily activities because my last IV is wearing off, so a delay would not be ideal.)

And now to the links...

Welcoming Special Needs Families: Both Jason and I commented on a blog post a few weeks ago at Ministry Matters, and he was asked to follow up with an article. I am so glad they asked him to do that, because this article is worth reading (and thanks, Jason, for emailing me to let me know about the article)!

And to continue my trend of highlighting new pieces about churches who are engaging in special needs ministry, here's one about a church's VBS program including individuals with special needs and another about a church's plans to go to a summer camp for kids with disabilities in Georgia. And here's one about a woman in London who is passionate about including people with autism in churches.

In less positive news, though, here's a piece from England in which the title shares the tragedy: Thousands of being are being aborted over 'disability' My nephew - the handsome fellow on the right - was born with a cleft lip and cleft palate; while the surgeries he needed in the first year of life were not easy, it blows my mind to know that abortions are being performed just to avoid that. Here's an encouraging blog post on a related topic by John Knight: Let us tell our stories and ask God to change things

Which leads me to my next set of links, which are all posts from John's blog this week:
-Sometimes Jesus healed by touching people
-Sometimes Jesus healed them all. Sometimes he didn't.
-And two posts about the sadness and joy of his son's 16th birthday: I am sad. But only for a vapors breath. and She opens her mouth with wisdom...

I'm not sure if they re-did it recently, but Lifeway's Special Needs page seems more user-friendly and helpful than it used to be. Even if I'm just imagining things, you should still visit it if you haven't stopped by before! They have great resources.

Family Relationships with a Complicated Diagnosis: Pamela Wilson does a great job once again.

I regularly enjoy 22 words, but I don't usually link over to it. I'm making an exception for 5 pieces of art by children with autism.

I've been a fan of Missy's blog for a long time now, and I love this post about designer babies and a Designer God.

Finally, here's my friend Katie's recent post about different models of special needs ministry. Please read it, and then heed her request at the end: "What approach has worked for you and your church? Leave a comment here, so that others can learn from your experiences!"

And come on back tomorrow for an atypical rant from me that began with a link I was going to include in today's post ... that is, until my commentary on it turned into something long enough to warrant a whole post of its own.

Living sacrifices {Romans 12:1-2}

I appeal to you therefore, brothers, by the mercies of God, 

to present your bodies as a living sacrifice, 

holy and acceptable to God, 

which is your spiritual worship.  

Do not be conformed to this world, but be transformed by the renewal of your mind, 

that by testing you may discern what is the will of God, what is good and acceptable and perfect.

Romans 12:1-2 {ESV}

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.

---

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