Wednesday, June 25, 2014

three reasons why families with #specialneeds opt out of VBS #SpnMin #kidmin #church #inclusion

We're full swing in Vacation Bible School this week at church, and as I'm the director for special needs inclusion and a mom of a child with cerebral palsy, I'm reflecting a lot about why many families whose kids have special needs are absent from VBS (or "Super Summer Adventure" as our church calls it).

Why do some families like mine opt out of VBS?
1. You never gave them the opportunity to opt in.

I know you pour your heart and soul and time into VBS planning each year. Truly, I do. I've done it myself. But as you plan the stories and crafts and schedules and games and songs and so on, did you stop once to think, "How will this work for kids who think or behave or interact or communicate or move differently from typical kids?"

If you didn't, then you haven't proactively considered families affected by special needs, because disabilities affect one of those areas of development. And if you're not planning with kids like theirs in mind, then you're unintentionally saying, "Our VBS is only for kids without special needs."

I know that hurts to hear, because you are working so hard to plan an awesome week for all those typically developing kids. But it hurts even more for those parents to hear the message you're accidentally communicating, which is that church is not for their child.

Tip: Next year, reach out to families affected by disability in your church (or, if none are currently at your church, in your community) and ask them to be involved in the planning stages so you can be more thoughtful. Also, trust me when I say that one-on-one helpers for kids with special needs who need that support are just as crucial to an inclusive VBS as class teachers; your volunteer roles might need to be a little more diverse to include our families well.

2. A lot of kids with special needs don't handle new environments well.

Even if your church is their usual environment on Sunday mornings, VBS is different: Louder. Longer. Busier. Bigger. Maybe at a different time or in a different part of the church than other children's ministry programming. During summer, which is already a time in which family routines are thrown off and kids are often in a state of major dysregulation.

Simply put, that's hard for a lot of our kids.

Tip: Respect that some of our families, just like some families with typically developing kids, will happily opt out of VBS without any hurt or hard feelings. For those who want to come but feel like they can't, offer two helps: (1) invite the family and child to walk through VBS before it starts, either by physically visiting the church beforehand or by sharing a social story - with pictures of each area if possible - that describes step by step what will happen from the moment the child arrives until the moment he or she is picked up and (2) let families know that they are welcome to try it out without any expectation that their child will come for the entire week.

3. Kids with special needs often have full calendars already.

Let me share what our week looks like during VBS:
  • Every morning: Arrive with my six kids at 8:45(ish), take them to their classes, and then go serve the other kids I love.
  • Monday: Pick Zoe up at her class at 11:15, drive home for her physical therapy at 11:30, check in with Lee to make sure he has all the room numbers to pick up our other five when VBS ends at 12 noon during his lunch break from work, and welcome our other kids home around 12:30 as our therapist is heading out.
  • Tuesday: Pick up all the kids from their classes at 12 noon, have one of the big kids feed Zoe a light snack/lunch in the car, arrive home to put her down for a nap, do lunch for the rest of us, and then wake Zoe up for another snack just before speech therapy at 2:45, which I had to reschedule with the therapist since it usually would have been smack dab in the middle of Monday's VBS time.
  • Wednesday: Same as Monday.
  • Thursday: Pick up all the kids from their classes at 12 noon, have one of the big kids feed Zoe a light snack/lunch in the car, arrive home just in time to meet our occupational therapist at the house at 12:30, and feed the rest of the crew while Zoe has OT.
  • Friday: Same as Thursday, except it's speech at 12:30 for Zoe and then Robbie (once again, at a rescheduled time because our usual time conflicted with VBS).
It's totally worth it for us, but IT. IS. EXHAUSTING. For many families like ours, it's not worth it or even feasible.

Side note: Local friends, forgive me if I disappear next week. I think we all might need some time to recuperate and regroup after this very fun but very full week!

For some families, their child's educational special needs have them in a school setting during the day even when other kids are out for the summer, which might conflict with a morning VBS. For other kids, medication wears off by the evening or bedtime routines are sacred for everyone's sanity, so an evening VBS might not work. (For example, our family has to keep a strict nighttime routine because our son with epilepsy is less likely to have seizures if we protect that time. That means we skip a lot of evening events at our church for the sake of our entire family, because seizures are disruptive and scary for all of us.)

In other words, some families affected by disability won't come to your VBS because it doesn't work for them, so don't take it personally. Do, however, make sure you extend the invitation to let them decide. Invitations mean a lot of our families.

Tip: Make sure your families know that it's okay if they can't come every day. Even if you're pretty certain that a child won't be able to come because of conflicts with their specialized schooling, therapies, or routines, INVITE THEM ANYWAY. You don't want these families to feel left out!

All of the pictures in this post are from our church's Facebook page. In the first three days of our church's VBS, we've included a whole lot of typical kids as well as precious ones with Down syndrome, global developmental delays, cerebral palsy, hearing impairments, ADD/ADHD, anxiety disorders, HIV, and autism, all learning together about Jesus.

If your church is including kids with disabilities at VBS this summer, I'd love it if you leave a comment sharing what you're doing! Or if you're a parent of a child with special needs, how can churches like ours welcome you and your kids? 

All for His glory,

Wednesday, May 28, 2014

what's your church's elopement plan? #kidmin #stumin #familymin

No, no, I'm not talking about people running off to get married. I'm talking about one expression of several disabilities: elopement. It would be described in lay terms as wandering, running away, escaping, or darting off. We have a couple of repeat offenders on Sunday mornings in our ministry.

Two of our most committed elopers at our church have Down syndrome, but this is a common behavior among kids with other diagnoses as well. In a survey of 800 parents of children with autism, findings indicated that about half of kids with autism wander. Additionally, children who have been adopted from hard places are also more likely to elope, especially those kids who have lived in a setting (like an orphanage or a child-led household) without much adult guidance and who might not understand the benefit of loving supervision.

Helpful note for parents: 
Sometimes it helps to use disability-ese with church leaders. Saying "my kid wanders" doesn't always communicate the amount of supervision needed. Trying saying something like this instead: "In the world of special needs, there's this word 'elopement' that means a child might try to escape from the group and not understand the dangers, and elopement is something my son does sometimes. Here are a couple of things that can help keep him safe. [Insert suggestions.] Do you have any questions?"

Below I have a list of tips for working with individuals who elope in ministry settings, but please leave a comment if you have anything else to add!
  • Talk with the parents/caregivers. If someone is eloping at church, it probably isn't the first time. What has worked in the past? What hasn't?
  • Be proactive. It's always best to avoid elopement if you can! This extends to planning space well (such as arranging the room so that no one has any reason to be near the door) and planning class activity well (so that individuals are less likely to wander). Also...
  • Pay attention, and try to figure out the cause(s). Behaviors don't just happen. If someone is eloping, odds are good that something is triggering that. Pay attention to what happens before the person tries to leave, including what other volunteers are doing, what classmates are doing, and how the individual is acting (frustrated? bored? overstimulated?). According to the research linked above, parents reported the following reasons for elopement: the child enjoys exploring (54%), heads for a favorite place (36%), escapes demands/anxieties (33%), pursues special topic (31%), and/or escapes sensory discomfort (27%). In a church setting, that means a child might elope to get to his/her parents, to explore the rest of the church, or to escape from a loud or busy class.
  • Be careful not to reward elopement. I know that sounds a little odd; I mean, why would you want to reward that? But consider this: one of our kids who elopes tends to run away, giggling and looking back with a huge grin. If it weren't so unsafe, it would be cute. (Okay, okay, it's a little cute either way!) It takes a lot of self-control not to giggle with him, but every time he sees a helper laugh at that behavior, it reinforces it. Don't reinforce a behavior that you don't want to continue. Don't act like it's a game; treat it as a serious safety matter, because it is one.
  • Plan transition times well. During our Kids LIFE classes (aka Sunday school), most preschool kids go to the playground. On special days, our elementary kids have small group time in their classes and then large group time in a bigger room. During the transitions from one place to another, I aim to position myself so that I can avoid a running situation with either of our kids who elopes. 
  • Make it more difficult to elope. In the past, we've used chimes on doors, baby gates in classes that usually wouldn't have them, and closed doors in classes that would usually have the door open. Also, we have arranged class environments so that no one in the class is by the door at any time other than pick up and drop off. Speaking of that...
  • Have a plan for pick-up and drop-off times. Classes tend to be a little more chaotic at those times, as do church hallways. Exercise extra caution and prevention in those instances, and plan activities that keep the person who elopes away from the door. If one class's teachers are leaving while new teachers are arriving for the next ministry hour, it's easy to lose a little one and assume he or she has been picked up, so have a plan to prevent that!
  • Ensure that you have enough volunteers. We know the parable of the 99 sheep that Jesus told, in which the man leaves his 99 sheep in search of the one that is missing. That is a wonderful parable and a good reminder of why we want to welcome these families, because otherwise we're sending that one sheep away from a church. However, it's not good or safe ministry practice to emulate it by leaving the rest of the class unattended while you go in search of the person who wandered off. Make sure the rest of the class will be fine with other volunteers while one pursues the wanderer (two if the individual might be in a more remote area, because it's never wise or safe practice to create a situation in which the volunteer will be alone with the child).
  • Make sure other key staff and volunteers are aware of the best ways to respond when they see someone eloping and the best ways to prevent it. This might not be any different from what you would do for any other child. Or it might involve specific tips for the child or adult in question; for example, if she is fearful of strangers, it might be best for an unknown stranger to follow the child until a known helper arrives to approach her and bring her back to class.
 And, to highlight why this is important, consider these points from the survey I mentioned earlier:
  • More than one third of children who elope are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing
  • Two in three parents report their missing children had a "close call" with a traffic injury
  • Wandering was ranked among the most stressful autism spectrum disorder (ASD) behaviors by 58% of parents of elopers
  • 62% of families with children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
  • 40% of parents had suffered sleep disruption due to fear of elopement
  • Children with an ASD are eight times more likely to elope between the ages of seven and 10 than their typically-developing siblings
Please don't miss in these stats that parents of children who elope are often stressed out - not sleeping, not participating in typical activities, possibly not coming to church at all. Find ways to show them love and, if possible, give them a break. Sunday morning can be that break, as can respite care (which is a topic covered extensively by our friends at Key Ministry, 99 Balloons, and Nathaniel's Hope).

Which of the elopement tips above do you think is most useful?
Any other tips you would add?

Tuesday, May 27, 2014

disability & Christ: links of interest

A Ministry for Parents at the End of Their Rope

In 1992, the senior pastor at Mclean Bible Church, Lon Solomon, and his wife Brenda were busy with the church and raising three boys. Then their daughter Jill was born with a seizure disorder that left her with irreversible brain damage. She needed constant care and supervision, and her parents began to feel physically, emotionally, and spiritually exhausted. One of their friends organized a group of caregivers to care for Jill and give her parents a break. Brenda sometimes says, "Respite gave us hope. It changed our lives." They don't know where they'd be today if they hadn't gotten it.
The nurse continued to speak, but I couldn’t fully understand the noises coming from her mouth. I was like a spirit no longer present with my body, floating there in the hospital room, not sure where to go or what to do. If I could have spoken, I might have said something like:

‘What do you mean Down Syndrome? That’s not us… That’s not our lives… Parenting a person with special needs… Our lives are too complicated now as they are. This just can’t be…’

When Christian Parents Should Seek Out a Christian Mental Health Professional
I had previously shared this post reflecting my opinion that Christian parents are best served by seeking mental health services from professionals who reflect excellence, regardless of their personal beliefs. Today, I’ll share a couple of significant exceptions to that rule.

I Wasn't There: The Tragedy of Adoption
I will cuddle her now and kiss her booboos now. I will tell her that she is brave and loved. I will be there as she fights the emotional trauma from her life in the orphanage. I will stand with her and be a steady presence as we tackle PTSD (post-traumatic-stress), anxiety, depression, RAD (reactive-attachment-disorder). I will be there when she doubts herself, reminding her that she can do it.  

From Empowered to Connect's FB page

Thursday, May 22, 2014

why I'm not going to my senior prom
{Kelsey's 2012 post about why she chose Joy Prom instead}

Kelsey posted this on her own blog two years and one week ago. She has graciously agreed to let me repost it, and I'm thankful that our friend Heather captured some wonderful dance floor pictures that I could include at the end! 

(If you missed it, here's the post from a couple years ago where I introduced Kelsey, and here and here are other guest posts from her. And here's Kelsey's follow-up to this post.)

Recently, I’ve heard a lot of reasons why I’m not going to prom.

That’s right, from other people. I just want to clear the air.

It was not an act of defiance. I am not skipping out on prom because I’m too cool or too hipster or because I think anything badly of the whole concept of prom.

It was not because my last boyfriend and I recently broke up and I’m too heartbroken to go outside. How lame is that?

It was not because I couldn’t get a date. It was not based on my own insecurity.

It was not because I am afraid of seeing people who I used to hold close to my heart there. I am not spineless.

It was not because my last prom experience was terrible. It was actually pretty decent.

It was not because my mom said I couldn’t go or because I am too tired or because of any other reason besides this:

I have something else to do. Something I have to do. Not because I am some sort of prom martyr, but because I have a passion. Because I am someone fortunate enough to truly love to do something, and even more blessed to know exactly what that is.

I should give a backstory. (I actually wrote my college essay about this)

When I was in tenth grade, I had my heart set on going to prom with this guy. Things didn’t work out between us, and he decided to take someone else instead, and that crushed me. I searched all over for a different prom to go to, and my mom directed me to one that my church was having for people with special needs.

Now I was scared of people with special needs. I thought they were out of their minds and dangerous. But, for the sake of being able to look pretty for a night, I went.

I loved it. I spent the night with some absolutely amazing people, talking dancing and singing and having a marvelous time. But the thing is, it wasn’t about me anymore. I threw aside my social inhibitions and focused on giving these wonderful, unappreciated people the fabulous time they deserve. Here is my original post from the night.

Person after person I encountered at joy prom confirmed this new passion I had unearthed. I love people with special needs. They are the most joyful and trusting and humble and lovely human beings you will ever meet, and they are so often looked down upon, when in reality they are people just like us who want to be seen as something more than their disorder. I want them to know that the love of Christ envelops them and covers a multitude of sins, and one way to convey that is to love them with a love that transcends all understanding - despite every social barrier. I could go on about this, but I’ll save it for another post. I’ve spent the last two years working with kids with special needs, making sure that they feel valued and loved and important just like everyone else, and it is undoubtedly something I want to pursue for the rest of my life.

I know what you’re thinking. This is just one of those human rights things that teenage girls get into. But this is no kony 2012 deal. This is a present issue that people are facing every single day, and I have a good bit of proof for you if you want it. This is something you can change, and really, something I can change.

So this year, I’m going to joy prom. I’m sure going to miss dressing up and looking nice and riding around town with my date and taking pictures and eating great food and dancing with my friends and staying up all night at a breakfast with my senior class. But I know that in 20 years, this time I had wont matter one bit. But the fulfillment I get from helping someone disgustingly undervalued feel like a prince or a princess for a night will last for far longer.

I am in no way condemning prom - I am merely stating the call on my life. My sacrifice is not for attention, and I do not write this to call attention to myself or to be dramatic - I simply want you all to know the truth. That I am not going to my senior prom because I am going to be partaking of my life’s passion.

Really, it’s no sacrifice at all.

Wednesday, May 21, 2014

reflections from Joy Prom 2014: your ministry isn't about you

I was reminded of a sweet lesson last week, as our church held the 10th Joy Prom, a night to celebrate our guests whose differences are more often ignored and an opportunity to live out Luke 14.

This lovely couple asked my friend Sherri Callery to take their picture.
All the pictures in this post are courtesy of her skills, love, and generosity!

Actually, the lesson began months earlier.

When the first Joy Prom meetings began, we were newly home from Uganda, as a family of 8 whereas we had been a family of 5 before that trip. Lee and I simply weren't ready to jump in to our old roles, him in charge of facilities and security and me helping Katie with training and volunteer support as well as overall behind-the-scenes execution on the big night.

No, this isn't how our Worship Center usually looks.

We still expected to help as the event got closer and closer, but then Patu had a breathing emergency that was ultimately diagnosed as asthma on the day of the first Joy Prom volunteer training.

He carried that corsage around all night...
until he found his lovely date.

Then I was there for the next one, but I had to cut out early as Robbie had thrown up earlier in the day and I didn't want to leave Lee alone with six kids if one was potentially ill.

can your youth pastor pull this outfit off?
yeah, I didn't think so. Pastor Bryan rocks.

Then came the day of Joy Prom. I thought I was having a worse time recovering from a tooth extraction than expected but by the time Joy Prom kicked off, I was hit with a bout of what Robbie had earlier in the week... so as the guests and volunteers danced the night away, Lee cancelled our babysitter, and I hung out near a bathroom, watching The West Wing for approximately the millionth time.

hey, Mr. DJ...

Please, don't feel sorry for us, though! We're on the mend, and it was a lesson we needed to learn: that God doesn't need us to do His work.

Smiles all around!

We love to serve, but when we aren't able to do so, God can provide someone else.

Her reaction every time footage of her and her friends showed up on the big screen!

It isn't our ministry.

It's His.

We roll out the red carpet. Literally.

And as the Facebook and Twitter and Instagram posts shared the wonderful stories of Joy Prom 2014, I was sad not to be there, but even more strongly I was once again thankful that God's work in and through and among His people isn't up to me.

Listen y'all, we're Southern Baptist. If we can set aside our hang-ups to show Christ's love to an under-loved population,
what might your church need to set aside to do the same?

He is faithful, and He is enough.

Now, enjoy a little bit of the festivities... 

“When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. For you will be repaid at the resurrection of the just.”
- Jesus (as recorded in Luke 14:12-14)

Tuesday, May 20, 2014

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.

Because that's who we all are.

Monday, May 19, 2014

disability & Christ: links from last week

From abp news, Experience on Broadway enriches Baptist couple's calling to special needs advocacy
“Their passion in helping the rest of the world see people with disabilities in a positive way is inspiring,” said Jeannie Troutman, minister to children at First Baptist. “Within our church they have been real advocates for our special needs children.”
Out of Tallahassee, New Sunday morning ministry welcomes kids with special needs,
"We were at a place where we had given up on church. We didn't have a place for our daughter to go on Sunday and hadn't gone to church for eight months," Adams said. "When you're a person of faith, coming to church is detrimental and not being able to do that is heartbreaking."
From Huffington Post, Teen Will Carry Brother With Cerebral Palsy 40 Miles To Send A Powerful Message
The goal of this walk is to get the attention of our up and coming leaders, doctors, engineers, and entrepreneurs and show them the face of Cerebral Palsy and the need for innovative ideas in mobility aides and medical procedures. We need modern equipment that doesn't look medical. We need walkers that can handle playground mulch, ball field gravel, sand at beaches and uneven grass at parks. We need mobility aides and classroom adaptations that work with then newest computer technology. We need handicap accessibility to truly mean accessible, accessible for all.

From The Dallas Daily News, 10 tips for strengthening the relationship between the church and special needs families
People with disabilities can be disruptive or require accommodations the church is not prepared to make. I’ve heard it said that for people with disabilities, the [accessibility] problem at church is not the stairs, but the stares.
 From Tim Challies, The Disabilities Dilemma
Not too long ago a good friend of ours attended an evangelical pastors’ conference to tell people about his ministry to the disabled, to their families, and to their churches. There were nearly one thousand godly, theologically-astute, gospel-enamored leaders in attendance. What an opportunity, right?

As we spoke to our friend in the aftermath of the event, he told us that his booth, located in a prime spot in the busy exhibit hall, had generated a grand total of five conversations—five conversations in three days. Two of those were with inattentive attendees who apparently mistook the display for something else. In an attempt to escape the awkward moment, one of them uttered, “This doesn’t affect me” before turning his back and rushing away.
A final note from Shannon: This affects all of us, if we are in Christ. If you don't think it does, re-read 1 Corinthians 12, Luke 12:12-14, and Psalm 139... or just look around you at the world God calls us to go into with His good news.

If we say that disability doesn't affect us or act in that way, we're saying the gospel is only for people who look or act or behave or think or talk or walk or connect like we do. And? That attitude is simply not biblical.