Wednesday, August 31, 2011

show grace.


For church leaders, that means you shouldn't make assumptions about families or judgments about parenting.

For people with disabilities and their family members and friends, that means you shouldn't be too quick to presume that the staff and/or volunteers at a particular church don't care, won't be welcoming, or don't want to be helpful.

For all of us, remember the grace you have received from Christ. You didn't deserve it. Show that same grace to others, whether or not you think they deserve it.

Blessed are the merciful, for they shall receive mercy.
Matthew 5:7

Let your speech always jbe gracious, seasoned with salt, so that you may know how you ought to answer each person
Colossians 4:6

I therefore, a prisoner for the Lord, urge you to walk in a manner worthy of the calling to which you have been called, with all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace. There is one body and one Spirit—just as you were called to the one hope that belongs to your call—one Lord, one faith, one baptism, one God and Father of all, who is over all and through all and in all.
Ephesians 4:1-6

Tuesday, August 30, 2011

But what if our special needs ministry is different from yours?

Whenever I get the opportunity to talk with other church leaders about special needs ministry - as I did several times this weekend at the Connecting Church & Home conference in Louisville, KY - the conversation usually involves lots of questions about what we're doing at Providence. I answer the questions, but I try to do so with this caution:

What we're doing works at Providence. We make choices based on our own church needs, culture, and dynamic. What we do won't be the same as what you do.

I don't know if it's pride or just a love for answers (which is a form of idolatry, if we're really honest with ourselves), but it's hard to send someone away without giving them a plan, especially if they have come to me asking for one: "What do we do?" "How can we start?" "How can we deal with our current circumstances?"

Truth is this: I can't answer those questions. I'll try to offer practical advice by asking questions to learn more about your church, but I can't give you a foolproof answer for what will work at your church.

Most churches start with disability ministry in children's ministry. It's more rare to start with adults - which is what Providence did ten years ago - but that happens too. Many churches provide respite events to give parents the gift of time, and others provide support groups. Some connect with outside organizations to provide family retreats. Some group most kids with special needs into separate classes, while others practice inclusion and still others have a mix. Some churches feel called to reach out to those with more obvious special needs while others are drawn to more hidden ones. 

Here's my point: There is no perfect model. 

Think about the churches you've been a part of, and think about the Bible-preaching churches in your town. They aren't identical. The leaders in two different churches can be faithfully serving and depending on Christ, but the churches may look dissimilar. That's okay. 

Think about Christ. As we read through Matthew, Mark, Luke, and John, we see that Jesus doesn't respond the same way in every circumstance. He sees the needs and loves the people, which means he doesn't follow a formula for his behavior.

What if our special needs ministry is different from yours? Great! I would be concerned that you were ignoring the needs and dynamic at your church if you were simply trying to replicate our model at your church.

Monday, August 29, 2011

Weekly round-up {8/29/11}

Happy Monday! The last week included feeling the house shake from the Virginia earthquake, prepping for the impact from Hurricane Irene (which was minimal for us, as we pray for those who were hit harder), and participating in the Connecting Church and Home conference in Louisville, Kentucky. While God taught me a lot from each of the circumstances from the past week, I'm looking forward to a quieter and calmer week.

The Gospel and the Oncology Waiting Room: This thoughtful article by Mike Pohlman was a good reminder for me that God's glory is evident in oncology waiting rooms and in other places in which we're face to face with the truths that, "He gives us life and breath and all things, and, therefore, we are utterly dependent creatures; that sin is real and has a million tragic consequences; that pride is ridiculously ugly and meekness wonderfully beautiful; that we are called to rejoice with those who are rejoicing and weep with those who are weeping; that people are either saved or lost; that God’s grace is real, His Son all-sufficient, and through the cross, cancer will one day be no more."

'Deselecting' our children: This article made me want to vomit, beginning with the first paragraph. It describes exulting Danish headlines that declare success in efforts to create "a Down syndrome-free perfect society." This, my friends, is why the church needs to be speaking up in Denmark and here and everywhere else. People with disabilities were created by God and matter to God; the gospel is just as relevant and vital to their lives as ours. Killing babies with disabilities does not make a "perfect society" but rather a warped ones.

From a blog post on Kamping with Autism: "On the other end, where he has a high tolerance for pain, he is VERY sensitive to light and sound. At church there are florecent lights everywhere and Kamp is constantly trying to turn off the lights, which really helps the kids stay reverent. He does this because he can see the constant flicker of the lights. Often, flickers that ”normal” people don’t notice until the bulb is about to go out. We also suspect he can hear the slight hum, again, something most of us don’t hear. He hates when the organ at church is turned on and can’t stand stores that have bright colors. He trys to leave, or just screams until we take him out. When he is bombarded by these things, he goes into sensory overload and – more often than not – it usually ends up in a melt down. He feels REAL physical pain; something I’m just beginning to understand; it must be horrible to have to fight these things every day of his life."

Appropriate Language about People with Disabilities: Best ministry-related post I've seen on this topic!

Sensory What? A post from Jackie Mills-Fernald about how we can support kids in church settings who have sensory dysfunction disorders.

And, to close, news bits about faith groups doing life with people who have special needs:

Thursday, August 25, 2011

Practical ideas we'll be using this fall

Have you discovered Pinterest? It's a website that allows you to organize pictures from around the web on your own pinboards, linking back to the original page so you can explore the picture, idea, or concept more fully. I have a variety of boards - related to home decor, crafts, book, quotes, recipes and more - but the one I'm pulling from today is my "To Include" board. I've provided all of the original links, but if you want to see the whole pinboard, go here. (And if you need an invite to join Pinterest, leave your email in a comment below or email me at shannon@theworksofgoddisplayed.com!)

I love this sponge Jenga game. (Go here for the source, which includes instructions and other ideas for these little sponge blocks.) I love it for special needs ministry because it won't make a racket when it falls (which could be unpleasant or even painful for someone with sensory processing difficulties) and because they can't hurt others if thrown (which is a behavior we've seen in some of our kids).

Has anyone used one of these Ikea chairs in a special needs setting? The cover can close to create a personal, private space. And it's only $80.

Here's another sponge activity for you - could play with these dry or wet! I love cheap and easy sensory toys. Here's the original post that explains how to make them.

Yep, that's bubble wrap, spray-painted with stencils and held in place with double-sided tape. Fun sensory play for active friends, found here!

And while the ideas above are fun, my favorite "pins" so far are a variety of sensory box ideas. We're going to make some of these in clear bins with covers and keep them in our supply closet to rotate through as needed. Keep in mind whenever making or using these that supervision is necessary (it doesn't take long for a bean or other small item to go in a mouth, nose, or ear! or for the whole bin to be dumped out, making a mess) and that allergies must be considered (for example, one box I saw used hay pieces; I would find an alternative item to use that isn't allergenic). 
a gardening sensory bin with beans, shovels, pots, and fake flowers; found here

a transportation-themed sensory bin, found here (and, if you're interested in more, this site has a TON of other sensory bin ideas as well; she makes one each month for her son)

an idea (from the same site as above) of making a card of items to find in a sensory bin! keep it with the bin, and you have a sensory bin + I Spy activity

a farm-themed bin, found here, and ...

...another farm one, found here

a "butterfly" sensory tub made with pasta! great idea from here

And I'll end with this, found on Pinterest and pinned from the sidebar of this site:
Ain't that true for all of us?

Wednesday, August 24, 2011

Welcoming parents



Whenever I know we'll have a new family visiting, I line up others to cover the tasks I usually do on Sunday morning so that I can be fully available. Sometimes I only have to greet the family, help mom and/or dad find the right classroom, introduce the volunteers - both the teachers and, if needed, the one-on-one buddy - and walk them to the worship center (we have a large building, so it's not always intuitive to find the service). Other times - like this past Sunday - I spend the entire Sunday school hour with one of the parents, usually the mom, who isn't ready to go to service and would prefer to hang around in case her child(ren) are having a tough time.

Either way, I'm happy to move at their pace.

Here is my list of tips for welcoming parents of individuals with special needs (usually children, sometimes adults who need the support of living at home with their parents; we also talk with caregivers from group homes and other facilities when they are the ones bringing an adult with disabilities to the church, and some - though not all - of these tips apply to those interactions as well). Because this list focuses on the parents, I'll use "child" to refer to adults and children; I might be grown up, but I'm still my momma and daddy's child and will always be.

  • Learn from them. While I do impart information about what we offer during our first conversation, my first priority is to learn from them. They know far more about their children than I ever will. Steve Wright, our pastor of family discipleship with who I am privileged to serve, keeps a container of 112 ping pong balls in his office. Two are black, and the rest are white. Those balls represent the waking hours in a week (assuming eight hours of sleep, so I joked with him the other day that he needs to add more white balls for most of our middle and high school students!). The black balls are the hours spent in our various ministries, and the white ones are the ones spent outside of church. The lesson? We're missing out if we only focus on the black balls. To truly impact our communities, we need to plug into those white ball hours - equipping families to worship God with their lives outside of church and to share the hope they have in Christ with others. And while we learn a lot about our friends with special needs at church, we can learn more if we find out what their lives are like during the white ball hours.
  • Respect where they're at right now. I love the quote in the image (source: here) at the beginning of this post. We don't know the battle being fought by anyone who enters our church buildings or any other area of our lives. We don't need to know it. All we need to know is the grace we've received from God in Christ as the sacrifice we needed but could never deserve. Once we know that grace, we can impart it to others.
  • Encourage parents to trust you and your team. It is huge for them to trust you with their child. Huge. At this time of year, my Facebook feed is full of teary posts about friends who are sending children off to college or school. Take that emotion and concern, and dial it up by a factor of about 10, and then you'll begin to understand how parents of individuals with special needs might feel about leaving their children in Sunday school. 
  • Don't be put off by hesitance or hostility. I'll be posting more about this in the future, but please understand that most of these parents have been burned before. As such, they might not being willing to share much with you or they may be pushy because they expect a fight. Don't let either attitude surprise you or make you defensive.
  • Have a plan for what you'll do if a parent asks to stay in class with their child. In addition to hostility and hesitance, the final "h" we see from parents is "helicoptering." It's hard to just drop a child off, regardless of the abilities, but - unlike with some other parents - it's not overprotectiveness for parents of kids with special needs; it's just protectiveness. We discourage parents from staying in class, though, for two reasons: (1) we want to give parents a chance to engage in our church community outside of their child's class and (2) we require background checks for all volunteers in our children's, student, and Access Ministry classes as a safety measure. Last Sunday the mom we had visiting our church asked if she could stay, and my response was, "Certainly! However, because we require all volunteers in the classroom to have background checks, let's step into the hall instead of staying here in the room." This enabled our Access buddy to take some ownership in the classroom, mom to stay nearby, and me to usher her into the hall, and it did so in a way that helped her feel more comfortable, as she commented, "wow, background checks. That's such a good idea for churches." 
  • Allow parents to serve if they want to, but don't require it. We try to protect our parents by not requiring them to serve, but we have one who prefers it and who has served as her son's one-on-one buddy for most of the past fifteen years and we have another who has asked if we would be okay with her serving as the buddy for her preschool son this coming year. If parents serve, though, they require background checks before they can volunteer in the classroom.
  • Show joy in serving. I had one mom tell me that she liked our church because unlike others, we included her son ... and unlike other churches who were willing to include her son, we didn't make it seem like they were a burden for us. I can get into a task-oriented mindset that gets the job done but that doesn't show that I love people, and that's not okay. The tasks only matter because the people matter. You serve well if you serve with joy, and parents will be more comfortable if they see that.
What else would you - as a parent or as a ministry worker - add to this?


Monday, August 22, 2011

Weekly round-up {8/22/11}

Hi, friends! Sorry this didn't get out as early as usual, but it's been for good reasons: I've been hard at work on some plans for Access Ministry in our church, as well as meeting with parents and redesigning some of what we do in response to what I'm hearing from them. Good stuff, very good stuff.

Tim Challies posted today with ten tips for teaching young children about God. Many of these tips also apply to people of varying abilities at older ages as well.

This article about being courteous and helpful to people with disabilities in retail settings could also apply to us in the church: Pay attention. Offer help if it might be needed. If a reasonable accommodation is requested, honor it, even if it requires a little effort to execute. Show that people matter with your actions, not just your words.

I love this idea for quarterly meet-ups with others engaging in special needs ministry in your city/area. I don't have the time right now to get that going in Raleigh, but I've added it to my "in the next year or two" plans.

Key Ministry and the Pajama Conference is hosting the first Special Needs Ministry Web Summit, called the Inclusion Fusion, on November 3rd through 5th this year. I'll be part of it (YAY!), and it will be a free event you can participate in from your office or home. Check out more info here.

When I taught special education in public school in Rio Grande City, Texas, I connected best with students and families by doing home visits. It helped me understand their lives when I interacted with them outside of school, and it helped them see that I cared about them beyond the 50 minutes they spent in my classroom. This column about some of the debate surrounding home visits and the accompanying comments were intriguing to me, and I bring it up because I think home visits can be beneficial to get to know the individuals in your church's special needs ministry as well. (Another consideration: We reciprocate by inviting them into our home too. We're hoping to sell our current home and move to a wheelchair accessible home within the next year so we can do this with all of our Access Ministry families. We don't just aim to do church together; we want to truly do life together.)

This about.com article, Eight Reasons to Be Inclusive, is a great reminder of why we do what we do.

I can't recommend this entire article - in part, because it was hard to follow - but this quote stood out:
“They [the parents] are forced to make choices other families never even consider:  Can we go to church?  Will we be invited to a family Thanksgiving celebration?  Can I stop for a gallon of milk?  And often, the answer leads to another burden:  they can do those things, but separately.  Except for the times when I’ve been in their house, I’ve never once in eight years seen Bob and Jane together in public.”
...food for thought, huh? What can we do so that "can we go to church?" isn't a question that parents of kids with special needs have to consider?

If you're in the Tuscaloosa area, this church-based art program for kids with autism could use supplies. Check out the info here.

I guest blogged this week at Rest Ministries with a post previously published here: Raise Your Hands if You Really Love Jesus

Jackie Mills-Fernald from McLean Bible Church posted about Communicating and Collaborating with Parents in special needs ministry. Well worth the read!

News bits I found this week about faith groups who are including people with special needs...
Hope you've had a great Monday!

Friday, August 19, 2011

Fridays from the Families: Unspokens

I've been following Jeneil's blog, Rhema's Hope, for many months. She is married to Brandon and has two daughters, Rhema (who have autism and a seizure disorder) and Hope. I love her writing and her perspective. She is graciously allowing me to share this post with you, and I know you'll be thankful for it.

Rhema was a few months shy of her 2nd birthday when she started receiving speech therapy. There was no autism diagnosis yet, but tests indicated a hearing loss due to fluid buildup in her ears. Ear tubes were quickly inserted, and we waited with baited breath for the promised language explosion.

Messages to my faithful friend Cha:
Dec 2005
since she can hear significantly better now, the speech and language should improve. i’m praying to see major improvements very soon… like NOW.
Jan 2006
she is starting to say some words… maybe? i still would prefer that she be quoting shakespeare by now. but there goes God teaching me patience and trust again. =) i’ve even enrolled in a speech therapy class myself – i have homework and everything! trying to do what i can to help rhema catch up…
March 2006
I’m so impatient. I want her to talk, talk, talk and understand everything I teach her. She’s nowhere close to where I want her to be…

Five years and an autism and seizure diagnosis later, Rhema is still pre-verbal. Never has my desire for her to ‘talk, talk, talk’ wavered. In fact, as she grows older the longing to know her heart-thoughts — to have even just one real conversation with my girl– only intensifies.

I was thinking about a funny practice we had in my church youth group. The leader would ask if anyone had any prayer requests. Then he’d ask for “unspokens.” Those were prayers requests that you had but didn’t want to say out loud, so you just quietly raised your hand. Then we’d all pray for the “unspokens.” God heard every word, every request of the heart, even if it was unspoken.

It dawned on me that Rhema has many unspokens. Oh, how she speaks…

Her big toothy smile and giggles tell me she is so happy to be here

Her soft hums say she’s content

Her deep gaze with big brown eyes whispers ‘I know I’m safe with you’

Her spontaneous hug is the only way she knows to say thank you

Her shrieks are excitement uncontained

Her wailing usually means ‘I need cheese or a popsicle stat.’

Her very life is one beautiful, unending song: God is good!

Brandon sent the following message to a friend after Rhema’s ear tube surgery. He could not have known…:
She’s BEGINNING to talk…very little, but my estimate is that she was about 8 months behind, so I anticipate a daughter that we can’t get to stop talking in about 5 more months… You know her name means “God’s spoken word to the soul/heart” as it is used in the Bible. We always prayed that she would be a witness for Christ…and for months we were afraid that she might not even be able to hear or speak. I quietly thought that perhaps the Lord was going to use her to speak in ways that words might not be able to…that she might have a special gift of communicating or living that spoke of Jesus in speechless ways…but it was ironic that we called her that name and went thru about 1 year wondering if she would ever speak…but she won’t be silenced. Jeneil says we will always tell her of this time and the prayers we prayed…and how special her gift of speaking is…
(Smile). Sometimes God’s plans for our children are even bigger than our own.

I daresay, Rhema - and the precious ones like her - do and will speak of Him in ways that words cannot.

And I believe there will be a day (if not in this life, then in heaven) when she will hear and respond and talk and sing to her Maker forever; she will be unhindered by autism.

Until then, there is much to hear.


~+~
If you'd like to read a couple other related posts written by Jeneil, see Autism at Church, Part 1 and Autism at Church Part 2.

Thursday, August 18, 2011

Past. Present. Future.

Don't Let Yesterday - Cherokee Proverb Magnet

It's easy - in any area of life, but particularly at church - to let the past dictate future responses.

"No, we can't do that because we've always done it this way."

"No, we don't go to church because we went once [or twice or...] and it wasn't a good experience. So we just worship God from home."

"No, none of the other churches in the area have ever done anything like that, so it probably isn't wise for us to try either."

"Yes, I know her, but she flaked out on a volunteer commitment before, so I'm not going to even respond to her email expressing interest in serving again. She won't follow through."

"Last time I approached that mom, she blew me off rudely. I'll just focus on the more responsive parents."

"We had one of those autistic kids come to our church before. It was too hard to have him in class."

"Every church we've visited doesn't seem to know what to do with the needs of our family. It's just not worth it." 

"There's no point in bothering with families with special needs at our church. They've never stayed for long in the past, so we should focus our efforts in an area in which we can have better results."

Yes, some of those statements are hard to swallow, but I've heard variations of each one. But look back to the image above: Don't let yesterday use up too much of today.

And, as far as future worries go, "Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." (That would be Matthew 6:34.)

And concerning anxiety for yesterday, today, or tomorrow, how about this one? "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." (That one is Philippians 4:6-7.)

Learn from the past. Live in the present. Dream and plan for the future. Don't sacrifice one for the other, and don't let anxiety creep into any of them. 

And recognize, worship, and follow the Author of yesterday, today, and tomorrow. Find comfort in the truth of Hebrews 13:8: "Jesus Christ is the same yesterday and today and forever."  

Amen.

Wednesday, August 17, 2011

The simple story of a mom's winsome church advocacy

As I prepared for Monday's weekly round-up, I came across this snippet about Jose Angel Oliveras, a guy raising money for autism awareness:
Oliveras was exposed to autism by the mother of an autistic child through his church. As she is a proactive volunteer for the cause, Oliveras was touched and became fully involved. Just the way he was moved by others, Oliveras wishes he can do the same. “I want to continue doing triathlon for autism. Along the way, I also hope I inspire others to do something positive. I need more people to carry the torch.”
What a fantastic model of how parents can influence others to join them in carrying the torch!

Tuesday, August 16, 2011

How do we respond when their theology is their child?

I regularly read the blog A Thinking Person's Guide to Autism, and this recent post is one of my favorites: My Baby Cried Louder Than Science. I know it might be controversial to share it here, as it is staunchly pro-vaccination and unapologetic in its dismissal of vaccine concerns. That's not why I love the post, though, and please know that I'm using this as a springboard to jump to another topic altogether.

In the post, Jennifer Byde Myers writes about taking her daughter - her second child, born after her older son's diagnosis of autism - for a well-baby check-up that included shots. She writes:

When she woke up at home I reached in to get her and she began to wail. "Poor thing, must be starving"... so I pulled her close and set about to nurse her... and she twisted her head this way and that, thrashed about and screamed. And screamed. And screamed. Every time I tried to comfort her, cradling her in my arm like she was a bouquet of flowers, she just screamed at me. She wouldn't eat. I panicked.
Oh my God. My child had her shots two hours ago, and now she is a different child. This is how it is, one minute the child is there, then they're gone; that's what I've heard. My daughter has autism. Oh my God.
In an instant, every single piece of science went out the window, and anecdote took hold. My science was my child,  my screaming child.

In case you don't pop over to the original post, here's the rest of the story: Jennifer called the doctor back, kept trying to calm her daughter, and finally took her baby girl back to the doctor in a panic ... where they realized that she had been causing the crying by putting pressure on one of the sore spots where the shot had been administered. The child was screaming because her momma was pinching her, not because she had a bad reaction to the shot itself. Jennifer was convinced that science supported the practice of vaccinating kids; she was willing, though, in a state of panic and helplessness to change that conviction.

I don't link to this to begin a scientific debate. Actually, I want to change the subject now, steering us away from science and toward theology instead. I've talked with enough parents of kids with special needs to know that this post could have been written about faith instead of vaccines. Instead of "my science was my child, my screaming child," I've heard variations of "my theology was my child, my hurting child."

Jennifer's doctor was compassionate. She didn't dismiss her concerns. She didn't mock her because she, as a mom, was misunderstanding her daughter's cues. She didn't look down on her. She listened. She watched. She helped.

Is the church willing to be just as gentle and compassionate and helpful? Are we willing to listen to the grief of hard theological questions instead of dismissing them? And are we willing to be patient with and available to parents who need support in their moments of panic and anxiety?

Disability raises questions. Hard questions. Sometimes, in an effort to avoid hard questions, we run from the families whose circumstances could force us to ask or answer them. Please, don't do that. Don't walk away from the questions or the individuals posing them. You'll miss out on so much if you do!

Whether or not you're personally comfortable with hard questions, know this: God is okay with them. He can handle them without intimidation or avoidance. He never runs from families with disabilities, even when others do.

Monday, August 15, 2011

Weekly round-up! {8/15/11}

I'm not sure if she reads this blog (because, unlike my other one, I don't include pictures of her grandbabies here!), but HAPPY (belated) BIRTHDAY to my beautiful mother. I hope you had a marvelous day yesterday! I let the blog have a sabbath day on Sundays, so I couldn't include the well wishes until today.

Will We Protect the Little Ones?: If you've read this blog before, you probably know that I admire the way that John Knight points to God's sovereignty in disability with both his life and his writings. This post from the Desiring God blog is no exception:
Prenatal tests are not the problem. The problem is the bias of our culture against the lives of little ones born with Down syndrome. Our culture does not think that these littles ones should be given the opportunity to live.
And there is no neutral ground on this issue: you are either doing something to protect the lives of unborn babies with disabilities or you are letting the culture pressure parents about what they "should do."
'Environment' Poses a Knotty Challenge in Autism: This news article from the NY Times is the best one I've read about the complexity in possible causes of autism spectrum disorders. (And it makes me thankful for the One who holds all the answers.)
Recent research has taught us more about the complexity of the genetics of autism, but the evidence also has suggested an important role for environmental exposures. It has become a very complicated picture: Genes matter, but we usually can’t tell how. Environmental exposures matter, but we usually don’t know which.
Teens, Tweens, and Transitions for the Student with Disabilities: This isn't a recent post - it's about seven months old - but it speaks to issues of age-appropriateness that I discussed in my Q&A last week. Plus it's written by a special needs ministry veteran and advocate I respect greatly, Jackie Mills-Fernald. In the article you'll find specific tips for inclusion and wonderful nuggets like this one:
Instead of saying we have no program for an individual with disability, why not ask, "What do we need to do to make a place for them in the body, so even those with disabilities have a church life like yours and mine?" Jimmy has a life like that; a life where he is able to impact those in the church, community and globally with the love of Christ, even with his diagnosis of Autism, because Jimmy has a church family that sees past his disability and sees his ability and potential as a child in Christ and Kingdom builder.
Eye Contact and Churches Including Children with Disabilities: This article, also from the International Network of Children's Ministry, is written by another passionate advocate for special needs ministry, Barbara Newman. She writes,
While speaking at a conference in Saint Louis, I met a pastor who just finished up a phone conversation with a family friend. He had been asked to fly to their community and lead the funeral service for their five-year-old child who had just died due to complications from several areas of disability. He had asked this family if their own local pastor would also be participating in the funeral service. The family admitted that they had no local church. They had tried eight churches within an hour driving distance from their home, and each one had said, "Sorry, we do not have anything for you here." The church down the road, however, had agreed to host the funeral service. I looked that pastor in the eye and said, "It is amazing that the first time this child's body will be welcome in church will be in a casket".
 Wow.

Now, as usual, here are some glimpses this week of the body of Christ rallying around families with special needs in a good way,

Saturday, August 13, 2011

the same God who empowers them all in everyone
{1 Corinthians12:4-7}

Now there are varieties of gifts, but the same Spirit; and there are varieties of service, but the same Lord; and there are varieties of activities, but it is the same God who empowers them all in everyone. To each is given the manifestation of the Spirit for the common good.

{1 Corinthians 12:4-7}

Friday, August 12, 2011

Fridays from the Families: Humans are human even at church

Donna Ross-Jones is a single mom to a teenage daughter and a younger son with autism, and she is a dynamic writer and advocate for those with special needs. Her post that I'm sharing today first appeared here on July 31, and Donna graciously agreed to let me reprint it.

I expected to feel safe (or at least safe for us) at a church. I expected people to be at their best and I assumed their best would look how I thought it should look. It didn't. At 9 he was too big for little kids church and we were not so welcome anymore. At 11 he started to be too big for kids church. People became less tolerant of his behaviors and they wanted him to move on to tween church, where they thought it would be a better fit. I don’t’ think they were considering what was best for Nick. They complained if he was late, they complained that he didn't seem to be involved in the lesson and enjoying “share” time and he didn't embrace “quite or meditation” time up to their expectation. I was told “Nick just doesn’t seem to fit here.” Gee, really? A kid with ASD isn’t sharing up to par or embracing prayer and meditation and your interpretation is "he doesn't fit." Ouch! I don’t want my kiddo where he is not wanted.

I tried tween church. I’d been introduced to the man who facilitated the program and he has a child with ASD. Maybe it is a better place, maybe the problem is protective mom holding on too long. I put Nicky in. He was quiet, he just sat and observed, he didn’t participate. He didn’t tantrum or disrupt the group with noise or run for the door. He just watched, I thought it was a good day.

As I walked to the car I was stopped by the program leader. He frankly said “I don’t think this is the program for Nicky. I don't think he fits in.” I was blown away. In short I asked why, and how could he say that after just one day? His answers were vague. I’m thinking been there, done that, but why here?

Seems humans are humans even at church, and rejection feels like rejection no matter where it happens.

Thursday, August 11, 2011

Special needs ministry Q&A: Accommodations, distractions in worship services, choir, and youth trips

For the past two days I've been answering a list of questions posed to me in the comments section of one of my first policy-related posts. Today I'll finish with that list, but I would LOVE to answer any lingering questions you have, so feel free to pose some in the comments section or send me an email at shannon@theworksofgoddisplayed.com! To see the other Q&As from this week, go here and here.

Is it unfair to expect accommodation for an adult when there are no other adults requesting it?
No. If it's a needed accommodation - in other words, if the adult can't be included in your church without it - then it's unfair not to discuss it.

I say discuss instead of expect because if a church leader or a caregiver has a specific accommodation in mind that they expect, then the conversation begins with the accommodation rather than the need. It's prudent to begin those conversations with the need; in other words, why is an accommodation needed? Then - together - the church and the family can partner to figure out the best accommodation. God established the family, and God established the church; he is in favor of both, and we ought to operate in unity not opposition.

The model we see from Christ - for example, when he turns to the woman who has been bleeding as soon as she touches his robe - isn't to treat every person in the same exact way. Fair doesn't mean the same. And, more important, treating all people in exactly the same way regardless of their needs isn't following the model Christ provided for us.

what if the person vocalizes loudly during a church service or is distracting by their movements or other appearances? should they be required to go to the 'baby room', 'tv room'?
This is a hard one to answer without knowing what "vocalizing loudly" and "distracting by their movements or other appearances" means. In some instances, the distraction is problematic, and in some instances, the problem is that people get hot and bothered over minor distractions and just need to get over their own mentality of comfort. Is the vocalizing during music as the person's own special way of making a joyful noise unto the Lord? Or is the person shouting during the sermon so that the pastor cannot be heard?

I don't like the word required here. Any decision about removing someone from a typical setting - even when an alternate one is being provided, like a baby room or cry room or other room in which the service is being broadcast to screens or TVs - should be a discussion between the church leaders and the family, not an edict from the powers that be in the church. I do think it's a wise idea to offer an alternate setting, not for the sake of providing the church with a place to hide those families but for the sake of offering options to the families, some of whom feel uncomfortable staying in church with even the most minor vocalizations.

Another key point to consider here is how friendly your church is to kids. Some churches establish so many programs for kids during the service that is becomes clear that the church leaders expect kids to be in those programs instead of in the sanctuary/worship center with their parents. In our family, we bring our four-year-old daughter to "big church" with us, and then she goes to Sunday school after the service we attend (and during our second service) while we coordinate Access Ministry. I've found that churches where children are included in worship services are more likely to be churches where people with special needs are embraced too, because perceived distractions can come with both groups. (I say perceived distractions because - like beauty - distractions are often in the eye of the beholder. Sometimes the distraction is a problem, and sometimes the perception of the beholder is the real problem.)

should people who have difficulty articulating, carry a tune, and/or are non-verbal be allowed to join the choir?
I say yes, but this is a conversation you should have with whoever leads the choir at your church. Special needs ministry advocates should never be antagonists; we don't push our ministry perspective at the expense of others. Inclusion doesn't just mean including people with special needs at your church; it means including all ministries in your church in those inclusion efforts.

Here's an idea from our church: We have a team of vocalists that is audition-only to lead some of our services; if we have a solo, then it's usually someone from that team. We also have a choir, which is open to anyone. Someone who has difficulty articulating, carrying a tune, or expressing himself verbally could participate in the choir.

should youth w/special needs be allowed to participate in youth trips? what about liability & extra assistance/supervision?
Just as I recommend above that a decision should be made about the choir with the choir director and not unilaterally from the special needs ministry coordinator, here a decision should be made with the youth pastor/director and the parents. What is the purpose of the trip? How could the youth with special needs be included safely? What barriers exist to full participation? How can those be overcome? Do the parents even want their child to participate? I can't offer a yes or no here, but I can tell you that it's a conversation worth having and that anytime a "no" is given for something like this, we ought to offer a "yes" in another area (i.e. "on the high school ski trip all the kids are out on the slopes for most of the time, so your child who is unable to ski would probably feel excluded and might not have the supervision necessary, but here is a place we would love to include him...").

At our church, we have youth with special needs at our week-long summer camp (which is an overnight camp in a neighboring state), and we have kids with special needs on our middle school tubing trip and our high school ski trip. We have youth with special needs on mission trips. Disability isn't an excluding criteria, though some adaptations and extra supports are sometimes necessary.

Yes, liability usually increases when you include people with special needs, but as I wrote yesterday, liability issues arise whenever anyone shows up at your church. Extra assistance/supervision may be necessary to limit liability and increase safety. And much communication will be necessary to make sure all parties - leaders, the youth in question, the parents, other kids, and so on - are partners in inclusion.

~+~
This wraps up my Q&A for the week, and tomorrow I'll have a guest post from a parent. Please feel free to leave a comment anytime with other questions, and I'll do my best to answer them! And, as usual, if you have a different answer than what I've given above, chime in with that too so we can all benefit from your perspective.

I hope you're having a great Thursday!

Wednesday, August 10, 2011

Special needs ministry Q&A: Liability, AWANA, number needed for a class, age groupings

This week I'm taking a break from policy - which I'll come back to for at least a post a week in the next month or two - to answer some questions posed in a comment by Tammy a couple weeks ago. Yesterday I kicked off these answers with a reminder that every church and every person is different (and not by accident, but rather by God's good design!) and no single answer will work for every situation. And then I took a stab at questions related to age-appropriate classes, high-sensory youth programs, and the inclusion of adults with special needs.

As I tackle this set of questions, I once again invite YOU to chime in with more questions or different answers. We all have something to contribute to this discussion!

Should a child or youth be allowed to push someone in a wheelchair? aren't there liability issues?
First, let's clarify one thing: if you work with people, there are liability issues. We can't avoid liability unless we sit in a room by ourselves and never communicate with anyone. Are there liability issues with allowing a child or youth to push someone in a wheelchair? Yes. Are there liability issues with allowing a child or youth to set foot on your church property? Yes.

As I'll discuss more tomorrow in one of my responses, the question is how much liability your church is comfortable with. Some churches don't ever administer medication; some do so on Sunday mornings; and still others only do so on out-of-town trips. Each church made a decision about the level of medical liability they were comfortable with, and each set policies accordingly. Those policies range from "we don't administer medication, but parents/caregivers are welcome to return to do so" to "we do in the following circumstances, given by the following people, with the following procedures..." Note that each "yes" usually requires more policy-writing than a "no" does - I don't say that to encourage you to say no, but to advise you to say yes wisely.

Most churches - even the previous church I served with in a rural area with fewer average attendees than my Sunday school class at my current large church - have a lawyer. If you are concerned about issues of liability with regard to any aspect of your ministry, you may want to involve that person in the conversation, at minimum to review your written policies.

Now back to the question at hand... Do I think it's unwise for a child or teen to push a wheelchair? If they are physically able to do so safely (i.e. not a small child) and mature enough not to treat it like a game, then I don't see a problem with that.
 
Should a non-verbal child be included in AWANAs where the main goal to reciting memorized Bible verses?
First, remember that goals don't have to be the same for all kids. We have had kids with special needs participate in AWANA and only learn one verse in the entire year.

As I did with one of the questions yesterday, I'm going to answer this with more questions: Can the child memorize and communicate verses in a non-traditional way (with a picture system like PECS, with a computerized device, with sign language or other physical communication)? Reciting a verse doesn't just mean you speak it. Are you willing to adapt expectations so that, like the situation I mentioned above, you can celebrate a child with special needs learning one verse in a year while his classmates learn ~30? (Please say yes! We did. It was precious.) If memorization isn't happening, how can you include the child in other ways? While one of the primary goals of AWANA is memorization, I know it involves other components too. My husband is a celebrity at church among three- to five-year-old kiddos because he tells the story and leads the puppet show for that group at AWANA, and a child who doesn't memorize verses can still be included in story time. My daughter brings home crafts and coloring pages, and a child who can't memorize verses could be include with those. While kids are reciting their verses at the end of class, only a few kids are reciting at a time while the rest are doing something else; even if he isn't involved in the memory time, he can participate in the "something else" if it's planned to include him too.

Another option might be a separate activity for kids with special needs during AWANA. I'll be observing this fall at a local church who has a class at AWANA specifically for kids with special needs. One of our families participates in that ministry, and they love it.

How many people w/disabilities are needed before a class should be set up for them? is it ok to have 1 class for all ages?
We just had a family leave our church, but we were planning to launch a separate class during the 11am service just for their son. I know that sounds a little odd, but consider this: (1) We weren't able to include him during that service for sensory stimulation reasons, and (2) That made us realize that he probably wasn't the only child who would have trouble with the 11am children's ministry setting. Just as I mentioned in my answer yesterday about starting an adult class, odds are good that for each person with special needs in your church there are a handful at home who don't think being included at church is even an option. You can create a class for the one child and then increase your outreach ... you know, the whole "if you build it, they will come" principle. (I'm sure you can guess the movie quote this time. Yesterday's was from The Land Before Time. I have a two-year-old son, which means I watch those far more than any grown-up shows!)

Check out my concerns yesterday about age group consideration for the second question. If you're asking if its okay for a birth through elderly class, then no, I don't think that's wise and I don't think many of the parents of kids in that class would feel comfortable with the adults being there too. How you split up ages beyond that will depend upon your volunteer team and the needs at your church, but make sure you approach the decision with prayer and wisdom rather than knee-jerk reactions.

At what age is a person too old to attend a younger class of typical kids?
Our policy is to include a person with their same-aged peers whenever possible. In the couple of instances when we have a person in a younger class, the decision of "too old" is less about age and more about physical development (for example, is the child too large for this class, compared to the size of his/her classmates? when a child is bigger than the younger classmate, safety issues can arise).

It's also wise to ask, "What benefit does the person get from being in a younger class? Is there any way we can adapt for that same benefit to be experienced in an older class?" Notice that the emphasis here is on our need to adapt and not any effort to force the person to adapt to us.

how do we determine if the person should be included in a regular class or needs a special class & what if there isn't a special class for an individual's age group?
I have to pull out that classic answer here: It depends. What is a "regular class" like at your church? How committed to inclusion is the rest of your leadership (staff and/or volunteer)? What else could you try to include the person in the typical setting?

Could you create a separate class? Why or why not? Where would you have a separate class for that age group? What can you do in a separate class than you can't do in the typical class? In public school, any time a child is removed from a typical class to receive services in a special education setting, special ed law requires the team to provide a justification for that removal. The principle in practice is called "least restrictive environment," and it's a good one for churches to consider too. If someone is removed or excluded from a typical setting, you need a good reason for it.


~+~
I'll have the last set of questions from Tammy tomorrow, so please come back then!

Until then, what else can you add? Any more questions or different answers? Any other thoughts?

Tuesday, August 9, 2011

Special needs ministry Q&A: Age-appropriate classes, high-sensory youth programs, and adult involvement

Jury duty took the full day yesterday, but I knew I would eventually be dismissed because it was a medical malpractice case in which one of the key witnesses was my former neurosurgeon. (As one of my friends with rheumatoid arthritis put it on Facebook yesterday, "Haha you and a medical case? What were the chances you wouldn't know the doctor?" Yes, my friends, there are some benefits of having a couple of autoimmune diseases and being the rare bird who has unusual complications with each one... you know most doctors in town and are rarely eligible for a medical malpractice jury!)

Meanwhile, the friend who made that comment just has a rheumatologist. She hasn't collected the array of specialists I have. Each case is a little different, and hers and mine haven't followed the same course, even though we have the same disease, similar treatment, and even the same doctor for a while.

I bring that up because, as I dive into Tammy's questions from last week, I want you to be reminded that each situation is unique. More often than you'd probably like, I'm going to answer, "Well, it depends." When I was a brand-new special education teacher, I scoured book after book and website after website looking for the perfect answer I could apply universally in my classes. Did I find it? Nope. And neither will you as you look for the perfect answer that you can apply across the board to every person with special needs at your church.

Remember, it's not the disability you're serving with, it's a person. Ministry isn't formulaic; it's relational. When we see the person and not just the diagnosis, it becomes obvious that our answers won't be one size fits all. Jesus wasn't predictable. When we draw from him - his love, compassion, and strength - our ministry responses probably won't be either, because viewing each situation through his eyes will allow us to see the nuances that he created in each one. While I would give my son a band-aid for a scrape on his knee, I wouldn't try to slap a band-aid on his mouth if he were vomiting. No single solution works in all cases.

And one last disclaimer: some of my answers might raise more questions. Please feel free to ask them! I love blogging more when it engages others; without discussion, it sometimes feels like I'm shouting into the mysterious beyond. (Brownie points for whoever can identify that movie reference!)

Now, onward to the questions...
how are age groups decided for classes of people w/intellectual disabilities?
It depends. (See? Can't say I didn't warn you!) If we're talking about a separate Sunday school class for people with disabilities, there are two important things you must remember: (1) intellectual disabilities do not always impact physical development (unless the intellectual disability is the result of a condition affecting both) and (2) intellectual disabilities do not necessarily affect the onset of sexual maturity. Most folks at our church are too quick to picture a sweet young boy with Down syndrome as our image of special needs without remembering that Down syndrome is only one area of special needs and that the boy will grow up. (Also, just as my sweet girl with no disabilities can be disobedient, it's condescending to think that the "sweet boy with Down syndrome" is always sweet. He's a boy, first and foremost, which means he has a range of dispositions that include sweet and not so sweet too!) It's easier to get churches on-board to welcome that "sweet" boy and his family; it's harder to get churches to welcome him as an adult. That's not okay, but it's the reality I've seen, so I don't want to sugar coat the realities here.

Connie Hutchinson, the Director of Disabilities Ministry at Evangelical Free Church of Fullerton, CA, and the mother of an adult daughter with special needs, shared a story at the Accessibility Summit this year about when an older man in a mixed age class continuing pursued her then teenage daughter romantically. He - having developed physically and sexually at the same rate as other men - desired companionship; however, not having developed intellectually at the same rate, he didn't understand that inappropriateness of his advances due to the age difference. This story illustrates why I definitely advise against adults and kids being mixed into one birth through elderly special needs class and why I advise wisdom for other wide groupings as well.

At our church, we have a separate class for adult, and some older teens do attend that class. When we add another separate class - which we will probably need to do during one of our services, because the children's ministry program then can be overwhelming for kids with sensory processing disorders - it will be for elementary students. This will leave a gap in preschool, which isn't always a problem because the differences among kids isn't always as obvious then, and for those who do need early support, we either accommodate the setting with a one-on-one buddy or modify it by keeping a child in a younger class, if the child's size isn't too large compared to the younger kids. (We only consider younger placements in preschool and for special circumstances; it's preferable to include a child in a same-age class whenever possible.) And it will also leave a gap for middle school and lower high school, which we do plan to fill eventually. We're just not able to fill that need yet, and we're trying to be wise about what where we say "yes, NOW!" and where we say, "yes, but not yet." (I hate that last answer, but it's impossible to give all "yes, NOW!" answers without depleting your ministry. Aim for growth to fulfill the future yeses; be willing to say "not yet" so you can execute today's yeses and have a foundation to build on for tomorrow's yeses.)

what if a teen w/a preschool level of functioning & sensory processing difficulty cannot handle the loud music of the youth program? Should the other youth have to have their music volume lowered? should the teen attend a younger aged class? should the teen be moved outside the classroom where it is quieter?wants to attend a grade school, or pre-school class?
 This kind of scenario is why we're planning to begin a separate class for elementary-aged students with special needs during our third service. (Right now, it's a "yes, but not yet" but it's fast becoming a "yes, SOON!") The typical classes during that hour start in small groups and then combine into a large-group setting that is loud and busy. We're okay with creating a different setting because we have more inclusive options for families during our other services (and because we also offer inclusion during that hour too, though it can be hard for some kids, given the setting).

I would work to creatively figure out a way to include that teen without substantially changing the program. Sometimes it is wise to change the program, but youth typically like the loud music and eliminating all loud music could exclude many other kids (at least it would at our church), so how can we include all of them in unique ways? Is there an area of the room that isn't as loud? Could he wear earplugs or some other device to muffle the noise so he could stay in the room? Can you have loud music at the beginning and then drop the volume so that he could enter at that point? Is there a quiet room nearby where he could go with supervision (at least two adults) if the sensory input is becoming too overwhelming? If a separate setting is deemed necessary for that portion of the youth program, what other portions can be adapted to include him? (In other words, if you decide that you'll say no to inclusion in the instance described, where can you yes?)

We have had some older kids with special needs help as teachers in younger classes, but they need a role of more than just a student in the class because the size of a teen isn't appropriate for him to be a member of a preschool class, even if he is cognitively functioning at that level.

what if an adult w/low level physical & intellectual abilities wants to come and we don't have an adult spec. needs class? (they don't fit in with children or youth or adults).
 Do you want my honest gut reaction? Start a class. As I've examined special needs ministries across the country, I've found that adult ministries are rare. Most occur when members of the children's special needs ministry grow up. My church is a little odd in that our adult ministry to include those with disabilities was more established and developed that our kids' ministry; that's rarely the case. If you have one adult who is interested, it probably won't take much outreach to find a few more adults to make up a class. Few churches are stepping up to include adults with disabilities. Be the one in your area that steps up where others step back or turn away.

Until then, could they fill another role? We have several adults with special needs who joyfully hand out bulletins as worshipers enter each service. They get the opportunity to contribute to the body in a meaningful way, and they love it! It also sends a strong message to every person who enters our church, showing that we acknowledge the value God has given each person and that we offer a place for each one to use his or her gifts for the greater good of the body. (Check out 1 Corinthians 12, starting in verse 12. It's a good passage for thinking about this sort of thing!)

~+~
I assume one aspect to each question: prayer. Pray. Pray. And then? Pray. You can't figure out the perfect answers for your situation, and neither can I. But God? He knows the answers before you ask.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. Or which one of you, if his son asks him for bread, will give him a stone? Or if he asks for a fish, will give him a serpent? If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!" {Matthew 7:7-11}

I'll be prayerfully answering questions for the next couple days. Any other questions? Any different answers? (Don't feel like you'll step on my toes if you disagree - your perspective is valuable, and my answers aren't flawless!)

And thanks for reading. Seriously. I am passionate about special needs ministry, and I love writing about it. I would do so even if no one else showed up, but I'm so encouraged that you do come visit my corner of blogland. Thanks. You're a blessing.

Monday, August 8, 2011

Weekly round-up! {8/8/11}

I'm off to jury duty now. I've never done this before, and I'm not quite sure what to expect! I'm planning to bring a notebook to sketch out some more Access Ministry plans, policies, and dreams, so hopefully the waiting time - which I've been warned will be plentiful! - will be productive. I'll share more on that later, but for now ... enjoy this round-up of links from last week!

Did you love Amelia Bedelia as a child like I did? If so, you'll love this post comparing her literal interpretation of idioms with the challenges some people with special needs, such as Asperger's, have understanding figurative language.

This post set off a bit of a firestorm online. The original one was an opinion piece for the Associated Baptist Press about the church's (negative) response to families with autism. I saw a couple of follow-up, first a Christian perspective Get Up and Get that Kid Out of Here! and then a secular one Autism and the Community: Looking at Church. While I was discouraged by the opinion piece because I hate hearing stories about people with disabilities being excluded from church, I was encouraged that others were unsettled by it too.

I found this article in the NY Times interesting: kids with dyslexia may also have problems processing auditory information. The takeaway for the church? If you ask a question, understand that someone with dyslexia might have difficulty processing it. As you teach a lesson, check periodically to check for understanding, especially if you're relying primarily on auditory instruction (or, better yet, involve other senses in your instruction, such as visuals, movement, touch, or smell).

My friend Barb, who is also foundress of Snappin' Ministry (Special Needs Parent Network), discusses in this post her tough summer and ponders how people who don't know Christ can handle life as a caretaker to children with special needs and an elderly parent with health needs.

This post from The Gospel Coalition was a great reminder for me right now as I'm recruiting volunteers for Access Ministry at our church: The Sin of Insecurity

A pastor at a Christian church who considers himself an atheist, preaches about enjoying this life because it's all you have, and describing the story of Jesus as a nice myth? Yep, that describes the pastor and movement being seen in Denmark and other parts of Europe right now. What we do at church is pointless without a clear understanding of why - rather, for Whom - we do it.

And, finally, churches who are engaging in special needs ministry who showed up in my news feed this week:
I mentioned church names in the list above so that you might notice a trend: in denominations ... or, rather, the lack of one. Disability ministry isn't denomination-specific. I began life at a Moravian church, spent most of my childhood in a Lutheran church, had short stints in a Roman Catholic and then a Methodist church, and have served and been served in Southern Baptist churches for the past eight years. This isn't a denominational endeavor. This is, as my friend Katie would say, "a capital C Church" thing. It's about Jesus.  

I hope y'all enjoy this round-up of links each week as much as I enjoy compiling them. Have a great Monday!

(And please come back tomorrow as I begin answering the questions from Tammy that I posted last week. Feel free to add any other questions in the comments section of that post!)

Saturday, August 6, 2011

that the works of God might be displayed {John 9:1-3}

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

{John 9:1-3}

Friday, August 5, 2011

Fridays from the Families: Reflections on VBS planning with special needs in mind

I am so happy to welcome Becky back to the blog! She was my very first "Fridays from the Families" guest blogger - writing then about helping kids with special needs adjust to church renovations - and it's a blessing to have her join us once again. She blogs about life with Mozart, Picasso, and Princess at paintingwithpicasso.blogspot.com.

We’re a family with 3 children, one of whom has special needs. Our children attended 2 different VBS’s (Vacation Bible Schools) this summer and I wanted to try to gather a few thoughts that might help you as parents or as VBS leaders prepare for a child’s successful attendance at VBS.
  1. Nighttime VBS’s are tough – it’s been a long day for the leaders, and it’s been a long day for the kids. It’s been a longer day for kids struggling with special needs, and it’s likely that they’ll be getting to bed a little later than usual each night. I’m not suggesting you change to daytime VBS’s (although, have you considered that option? My kids attended a daytime one & it was great  – for them and me!), but rather bear in mind that kids with special needs are often are heavily reliant upon a schedule, and VBS is new to their schedule. Often the evenings are “down time” for kids with special needs, after long days of therapies and regularly-planned activities. It will probably take a couple nights for them to really understand this change to their routine – and by that time, the week is nearly done. 

  2. If there’s a way to offer an “open house” for families of kids with special needs, prior to your VBS, it would be helpful. This would give the kids and their parents a chance to walk through all the areas that will be used, see the props, know what will happen at each station, meet the staff, take pictures to assist in picture schedules, and experience the environment in a small group rather than in a large group where they’re more likely to feel a little bit more out of control. This will also give an opportunity for families not associated with your church, to walk through and see how their child will best be able to participate in your VBS. For example, do you have a way for their wheelchair-bound child to get from one floor to another? Will they slip on slick floors with their crutches/braces? Are there water fountains that their children can easily access? These are all questions that you, as the church worker, know the answer to. However, these are things that we, as parents, would rather see for ourselves, than trust someone to answer for us.

  3. Children with special needs often do not like walking into/arriving to large crowds of people. Consider having the option of children with special needs arriving at your VBS before everyone else. For example, if you plan to have kids arrive at 6:15pm, be strict with this time – don’t open the doors before then. Allow children with special needs to enter the building a few minutes earlier (10-15 minutes earlier), possibly through a separate entrance so they can avoid the crowd and already be seated when you open the door for the other children.

  4. Ask questions.
    • Parents – ask ALL the questions you need to ask in order to feel comfortable with sending your child to a particular church’s VBS. Feel free to call the church sometime prior to VBS and setting up a meeting with the VBS leader to discuss your child’s particular needs.
    • For VBS leaders/workers – ask all the questions you need to in order to feel comfortable caring for a child. Also, be willing to field questions from parents of children with special needs. We, as parents of special needs kids, are definitely NOT looking for free babysitting. We have a tough time trusting our kids to school staff, therapists, and all the other regular people in our lives – we’re sure not out to dump our kids on some local church people to enjoy some quiet time. What we want is some normalcy for our children – an attempt to let them participate in those things that the neighborhood kids enjoy.
  5. Parents – if your child seems insecure consider staying in the building. So pack a book for the first night, or something else that will occupy your time. Many children are nervous being left alone and it may help you, the child, and the staff, just to know you’re in the building.

  6. Parents – if you know of another local family with special needs, whose children are participating in the VBS you’re attending, consider volunteering and then swapping kids for VBS – your kids could be in your friend’s group, their kids could be in your group. Often our kids will do better with another adult who understands the needs and knows how to help. Unfortunately, this would mean less free time for you, but it may be just the thing that’s needed to allow both families to come away from VBS having a successful week.

  7. Leaders – as mentioned above, the children with special needs are likely to be tired by the time the VBS program comes around. Many children have multiple therapies and have already worked hard physically, mentally and emotionally. Please keep that in mind. The summer schedule is usually different than the school-year schedule and that takes some getting used to. Additionally, all of their “normally-scheduled things” (therapy, appointments, etc.) may be at different times over the summer adding additional confusion to an already mixed-up schedule.

  8. Leaders - If you’re working to integrate the kids with special needs in with the other kids, you may want to consider adding one or two people to any group that has a child with special needs. This will allow for someone to walk a little more slowly with a tired child, or to sit down and take a break with a child during active times, yet still engage that child and make sure that they don’t feel left out. The saddest thing is to see a child who cannot participate in an activity sitting alone on the sidelines. It may not seem like a big deal at the time, but what you’re ultimately telling that child is, “You’re not as important as these others.” Try to make sure that all of what you do focuses on the preciousness of each child.

  9. Leaders - If you have a class comprised of only children with special needs, make sure you’re adequately staffed. This goes without saying. Remind your crew of confidentiality issues, safety concerns, and be vigilant.

  10. Leaders - Have fun! If you’re having fun (while watching the kids and doing all you need to as a leader), the kids will have a great time as well!

  11. Leaders - Pray. Plan. Prepare. Plan a little more. Prepare even more. And don’t stop praying! You have a unique opportunity to reach some wonderful children with the good news of Jesus! 

A final note from Shannon: because many churches have already completed their VBS programs for the summer, I will re-post this next spring as a reminder. It also might not hurt to bookmark it for yourself if you know you'll need it!

Thursday, August 4, 2011

Special needs ministry policies: Questions worth answering

This post is part of a series I'm writing about special needs ministry policies. I'll be sharing ours in full once they're finalized, and I'll also provide links to those of a few other special needs ministries as well. Here's a list of the other topics I've already addressed in the series:

I asked at the end of my first post in this series if anyone had any policy-related questions. Tammy responded with a great list, which I'll begin answering on Monday. I know, though, that answers to some of these question vary among churches, so my responses will only provide insights from me; while I know about the practices at several other churches, I've only served in special needs ministry at Providence Baptist Church in Raleigh, NC, so my suggestions may be influenced by my own setting. Because of that, I would love to give you the opportunity to consider some of her questions, respond to them, and/or add some of your own questions in the comments.

Here's the list, taken from the comments section of this post:
how are age groups decided for classes of people w/intellectual disabilities?

what if a teen w/a preschool level of functioning & sensory processing difficulty cannot handle the loud music of the youth program? Should the other youth have to have thier music volume lowered? should the teen attend a younger aged class? should the teen be moved outside the classroom where it is quieter?wants to attend a grade school, or pre-school class?

what if an adult w/low level physical & intellectual abilities wants to come and we don't have an adult spec. needs class? (they don't fit in with children or youth or adults).

Should a child or youth be allowed to push someone in a wheelchair? aren't there liability issues?

Should a non-verbal child be included in AWANAs where the main goal to reciting memorized Bible verses?

How many people w/disabilities are needed before a class should be set up for them? is it ok to have 1 class for all ages?

AT what age is a person too old to attend a younger class of typical kids?

how do we determine if the person should be included in a regular class or needs a special class & what if there isn't a special class for an individual's age group?
Is it unfair to expect accommodation for an adult when there are no other adults requesting it?

what if the person vocalizes loudly during a church service or is distracting by their movements or other appearances? should they be required to go to the 'baby room', 'tv room'?

should people who have difficulty articulating, carry a tune, and/or are non-verbal be allowed to join the choir?

should youth w/special needs be allowed to participate in youth trips? what about liability & extra assistance/supervision?
 Choose a question, and leave a comment with an answer! Or leave a comment with one or more questions you'd like to add to the list. On Monday, I'll begin posting my answers.