The Power of One {guest post by Bill Gaventa}

Bill Gaventa, M.Div., is a leader in the inclusion of people with disabilities in faith communities, and his unique mix of experience makes him a great thought partner for a wide range of issues related to disability and the church. He is an Associate Professor in Pediatrics and the coordinator of Community and Congregational Supports for The Elizabeth M. Boggs Center on Developmental Disabilities at the UMDNJ-Robert Wood Johnson Medical School. I'm thankful that he's allowing me to share his words in today's post as a follow-up to this post last week. 

Over the years of my ministry, I have heard stories of people with disabilities and/or their families being unable to find a welcoming congregation. That also has included staff working in group homes or providing other forms of support to help assist adults in taking part in community and congregational life.

But early in November, 2010, at a Saturday conference sponsored by the Lancaster Christian Council on Disability, I heard two parents, now fully included in congregations, tell their stories of being asked to leave previous congregations because of their child. One was a parent of a son with a mental illness; the other’s daughter is on the Autism Spectrum. The first family had been asked to leave 7 congregations, the latter, 13. I was stunned.

A congregation may not feel that it is equipped to deal with a child with intense behavioral issues or may think, this is just one family. But it is not just one person or family. When a child is asked to leave, the family does as well, and word ripples about that congregation to other relatives, extended families, other families of children with disabilities. When an adult is not welcomed or asked to leave, word also ripples, not just to families but to young staff in those agencies who may be struggling with their own faith, and end up being further disillusioned. It is evangelism in reverse, sending people of all kinds into the ranks of what some Christians call the “unchurched.”

The opposite is also true. When a congregation welcomes a child, their family, or an adult with support staff (many of whom may not have ever been in a church like yours) and really helps them feel included, it not only is good for those individuals and your church, but it is also a witness. The word gets out. Through family networks, to others in a support agency, and to extended family. That is why some congregations are now citing their development of inclusive ministries as the primary reason for their church growth, because intentional and radical welcome and inclusion often extends to many others as well.

If there are issues or problems, then simply deal with them. First, ask the family or staff what they need, and how you can best support them and their child or person they are accompanying. Find congregational members who may be professionals to help figure out the supports needed. Connect with school teachers or agency staff to help you. Figure out ways to address behavioral or other issues that give the individual a chance to learn your rituals and routines.

After all, those individuals and families are not the only individuals or families that may have posed challenges for a congregation. If we asked everyone who posed a challenge at some point in their life to leave, our sanctuaries would be empty and our light dark. The amazing fact about the two families in Lancaster was the faith of the individuals and families who kept searching and hoping, in spite of the lack of faith and love demonstrated by the rejecting congregations. Start with the one. If you have 99 in a congregation to help you figure it out, then the shepherd has lots of help, and your congregation has the possibility of a journey that will benefit everyone.

What can YOU do to demonstrate God's love for all people, including those with disabilities?

I thought I had something to write today, with several topics in mind. But as I sat to write, I read something else that I'd rather call your attention to. It's part of a talk John Knight gave recently about disability and the sanctity of life, with this segment offering suggestions for what we each can do to affirm God's sovereignty in disability:

You don’t need to be an expert in disability.  In fact, sometimes that is an advantage.  You can do informal things.  If the Kanowitz family had not adopted us and loved us and persisted in love for us almost 16 years ago, I would not be standing here.  They didn’t know anything about Paul’s disability, but they knew how to love.  Trust God to help you, even if the person does what I did, and that was respond with bitterness and derision. They persisted because they trusted God more than they feared me, even when nothing changed in our hearts or lives for a long time. If God can change my heart, he can change anybody’s heart!

You can speak up when the hard issues are discussed.  The abortion movement assumes one of its best arguments for abortion is that it must be legal, especially late-term abortions, because nobody wants the disabled babies.  Don’t let that lie just sit out there – move into it, get underneath it, love the mother and father, save the baby.  Get the mom into Hope Keepers here at Bethlehem, a group Caryn Turner organizes of mothers and spouses experiencing disability in their loved ones.

You can do simple, one-time things.  When Dianne was so sick from treatment for her cancer, we received meals three times a week (coordinated by two wonderful ladies who selflessly served us for nine months).  Some of those meals came from very young people – and I was encouraged that they had the courage to come to the door of a home that, potentially, could be so sad, so angry.  That cup of cold water will never be forgotten by God himself!

Some of you will be called into even longer term service.  We have families at Bethlehem who have intentionally adopted lots and lots of children with disabilities – talk about leaning into the promises of God.  And we have families who have unintentionally adopted children with disabilities, and they are pursuing, in love, the good of the children God has given them, even with this heart-breaking surprise.

Everyone, put a stop to the cruel words like retard and spaz, first from your own mouths if necessary. I know it is possible for children to stand up to that cruelty, because I’ve seen my own children do so without any prompting from me.

If you live with a disability and have gifts that are not being used, please pray about using them here!

Please don’t misunderstand – there is joy, and the sorrow and the suffering is very real.  I have cried more than I thought a man could cry these last 16 years.  I am not saying there is a straight line between serving families like ours and a light, breezy happiness.  But I am saying there is an eternal weight of glory beyond all comparison coming (2 Corinthians 4:17).  And I take comfort that even the tears are valuable to God.

Psalm 56:8: You have kept count of my tossings; put my tears in your bottle. Are they not in your book?

God is sovereign.  Jesus is Lord.  Your sins are forgiven.  Joy is coming.

To read the rest of John Knight's talk about disability and the sanctity of life or to watch the video of it, please go to his blog. And, when you do so, bookmark it, because God is doing amazing things in John's family and church and you'll want to keep reading his blog to hear/read more.

disability ministry weekly round-up {1/30/12}

My baby girl turned five yesterday. I love her so much, and she and her little brother are great motivations for why I do what I do, even though neither of them has a disability. If either of them had any special needs, I would still want them to know Christ. I would still share His truth with them at an age- and ability-appropriate level. I would still love and cherish their lives, and I would want my community of faith to do so as well.

That's why I do what I do, because I know that the moms and dads of the children and youth with disabilities at our church want the same things for their kids as I want for mine and that the adults with disabilities at our church are each someone's child.

My sweet five-year-old Jocelyn matters to me, to the church, and to God. And so does every other person, regardless of disability status.

Ministering to Special Needs: This article describes phenomenal efforts in disability ministry in New York and includes great quotes and one-liners, like "Every week brought new fears, new disabilities, and challenges, but more importantly every week brought new lessons packaged in some of the most beautiful souls I’ve ever encountered."

special needs {recent observations}: Amy Dolan is a great leader in children's ministry, and this post is the result of research she did in local schools to learn about how to best serve kids in ministry settings. Great insights, and also a great idea that could be helpful to do if you're a children's or special needs ministry leader who doesn't have a special education background!

Beautiful Bethenny: Heather blogs about a little girl in Russia with osteogenesis imperfecta who lives in an orphanage and need a family. Would you consider adopting Bethenny or donating to her adoption fund to offset the expense for the family who I pray will step forward to love her?

Why it is hard to tell the truth in my memoir: Gillian Marchenko is a pastor's wife, mother of four (including two daughters with Down syndrome, one who entered their families through birth and the other through adoption), and skilled writer. In this post, she honestly and vulnerably shares about what she calls her "less than Christian response" to her daughter's birth.

Caring for a sibling with developmental disabilities can be a lifelong commitment: We're not doing much as a church to support siblings yet, other than including them in respite nights and providing them with a one-on-one buddy to make sure they have a great evening. What does your church do to support siblings?

How families can benefit from respite programs: Ever wonder why respite care is a common activity in special needs ministry? Then read this.

A Story Worth Telling: Orange Parents writes about Noah, a precious little guy with Down syndrome whose dad blogs about him at NoahsDad.com. His is definitely a story worth knowing.

How to Raise a Child with Down Syndrome: Advice and Resources: Amy Julia Becker is a great resource  herself, and she has assembled useful information and resources for other parents who have a child with Down syndrome.

The Attributes of God: Tim Challies has created this useful visual tool, which I will use and will be passing along to our volunteers. It may not be directly useful with all of the kids and adults we serve alongside, but it is helpful for us as volunteers to reflect upon the characteristics of the God we serve.

 Churches engaging in disability ministry...

• "Teach, Bless, Serve," theme for 2012 Archbishop's Appeal: The Archdiocese of Portland includes plans for increased funding for the Office for People with Disabilities. According to the website, "this ministry assists parishes in accommodating the needs of parishioners with disabilities to enable their full participation in the life of the Church. The office offers training and consultation in ways to create an inclusive worshipping community. It also provides pastoral support and advocacy for individuals with disabilities and their families."
• Special Ministries celebrates 40 years of community ties: This disability ministry in Livingston County, Michigan, was launched by a pastor's wife at St. George Lutheran Church when she started religious education classes for a few high school students with Down syndrome in 1972; it has now become an ecumenical effort with serving 230 people with special needs. 
• 2012-2013 Preschool Round-Up: This round-up includes a listing for the Garden Academy, a new six-day/week program serving people with autism aged 3-21 that is based at St. Andrew Kim Church  
• Millville autism support group Puzzle Peace Moms announces 2012 meetings: Mt. Pleasant Church hosts this support group in Millville, New Jersey. 

And, finally, what could be God's purpose in disability? Here's one testimony of what God has done at Bethlehem Baptist in Minneapolis with the life of a boy born with no eyes (and you can read more from his dad, John Knight, here):

every story has two sides. but.

Every story has two sides.

But.

I’ve heard enough first-hand stories from families with special needs about churches who have rejected them.

I’m not talking about stories like “well, they just weren’t sure what to do with us.”

No, I’m talking about conversations like the one I had with one of our moms after respite, when she, with tears in her eyes, told me, “We love the church. My dad is a pastor. But we don’t go to church anymore, because our last church asked us to leave.”

Please take a moment to process that before you move on. Take a moment to consider how you’d feel if you were asked to leave the church because of your eye color or skin tone or height or IQ or some other attribute you can’t control. This child wasn't aggressive or dangerous; they were asked to leave because the children's ministry leaders said his autism was too distracting.

If I were writing about a church that kicked out a family because their son was black, we’d be outraged. But sometimes when I share the stories I hear from the families we serve in Access, someone responds, “well, you can't really fault the church. They probably just didn’t know how to handle it.”

Maybe it’s because I’m dosed up on enough prednisone to work me into a bit more of a ranty state than usual (and to allow my asthmatic lungs to work), but let me tell you what I think of that sort of response: it’s baloney. When church leaders kick out kids who aren’t up to the general education expectations they are used to, they don’t need our excuses.

 They do need grace. And repentance. And yes, training. And prayer.

 When I see tweets like this one (related to this story)

three prayers come to mind:

Jesus, help this family. 

Jesus, let this church learn from this situation, even if the facts being reported aren’t completely accurate. 

Jesus, please come soon. 

 Amen.

How much does a special needs diagnosis matter at church?

I'm not actually going to tackle the main question in the title, instead leaving that up to my friend Steve, a special needs ministry leader and pediatric psychiatrist who is blogging about that topic this week. Check it out here.

I can and will answer for our church, though. There's a reason our ministry is called Access. Our aim is to support kids and adults whose unique needs make it more difficult for them to access the community of believers that is the church.

So, does that mean that the individuals have to have a diagnosis for us to help? No, not necessarily.

That's the nice thing about being a church instead of a government agency. We can show love without categories, because Christ first showed us love regardless of our abilities or worth. I was talking with one of our moms about this recently. She's a case manager for kids with special needs who receive Medicaid, so she sometimes has to decide - using the proper federal and state guidelines - which kids are disabled enough to qualify and which ones aren't; it's not fun for her to have to turn a family away. Conversely, I have the freedom to look at the individual in need, instead of looking at a list of qualifying diagnoses, and I love that.

When a child who is new to our church is having a lot of anxiety when being left in Sunday school, sometimes it can be helpful to find a one-on-one buddy to support that child for a month or two. Are we implying that the child has some sort of undiagnosed disability? No, of course not. We're just acknowledging that this particular child needs a little extra support to access his Sunday school class, so we're willing to be there. And we've found that this can be more helpful than having a parent stay each week, because (a) often the anxiety is only present once mom or dad leaves and, on a safety note, (b) parents can only stay if they've completed background checks.

My daughter Jocelyn with Tyler, who has served as an Access helper

When a toddler or preschooler is having more difficulty sitting still or interacting socially than her peers, sometimes we find a helper for the child or provide some extra training to the teachers to help them serve that child well. Does this mean that the little girl will likely be diagnosed with a special need once she starts school? No. That could happen, but it's not our role to even speculate about that... and we don't want to make that part of our role. We just talk with parents about the behavior we're seeing and offer an extra helper as one possible solution to help the child fully access membership in that class. (Usually in this sort of scenario, the child was technically a member of the class before help was offered but wasn't yet able to truly be involved as a full member and classmate until she had the support she needed.)

In both examples provided above, we continually evaluate the child's needs to decide when the support is no longer needed. It doesn't help the child or the teachers to keep a one-on-one helper in place any longer than necessary.

As the special needs community is reeling from the report that the proposed DSM-V criteria for autism spectrum disorders could exclude some who are currently classified, I'm paying attention so that I can be knowledgeable when the families I serve express concern about how this might impact their families.

However, I'm not concerned about how the proposed DSM criteria will affect what we do at church each week. We aren't bound by diagnostic criteria. In serving the Lord, we get to serve people, not diagnoses. 

I love that freedom.