good reads on the web - march 11, 2011

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This will be a regular feature over here. I want to humbly acknowledge that there are many other helpful, and often more experienced, people on the web writing about special needs ministry, theology in light of disability, and family life with special needs. Out of respect for their work, I'll include a snippet here and then a link to the rest of the post/article so you can finish reading at their site. Please know that I'm not endorsing everything that they post, and possibly not even everything in the linked post. If I link it here, I'm just saying that it's worth reading and that I hope it is useful to YOU!

John Knight at The Works of God:
We know that life includes hard things – we simply can’t avoid it if disability has entered our family.  So we read the Scriptures with that in mind, and understand the sovereignty of God as being over all things, including hard things. (Read the rest of his post here.)
 Louise from Chosen Families:
I confess I feel guilty sometimes. When someone presents a need to me I want to help them–my mind goes into problem solving mode and I think of all the things that I can and even should do. But, because parenting is a full time job I rarely have the strength or energy to follow through with my plans. When you add to that parenting a child with special needs, the stress multiplies. (Read the rest, along with some insightful comments, here.)
Guest blogger and high school senior Evan at Disability.gov's blog:
Who am I? Easy – my name is Evan, that's who I am and that's what I'm called. And yet, for some of my friends, there are still people who would identify them by saying, “Oh, him? He's a “special needs” kid, “a SPED,” – a “retard.” (Read the rest here.)
Katie Wetherbee at Diving for Pearls:
Parents raising kids with disabilities know that ”all kids” DON’T “do that.” Even if an exhibited behavior is “typical,” the accompanying  difficulties can remind parents their circumstances are anything but typical. And that hurts.

So what can we do? (Find her suggestions and the rest of her post here - and I would recommend reading post one and two and three, as this is post four in a series about communication.)
Amy Fenton Lee from The Inclusive Church in an article on buildingfaith:
Most children’s ministers with experience in special needs ministry have at some point felt conflicted in how to best accommodate a specific child with a disability.  A child’s temperament and learning capacity may vary from one week to another.  An occasional parent may push an expectation not in line with the church’s immediate capabilities.   And parent-volunteer dilemmas may require the grace and negotiation of a skilled diplomat.

Alyssa Barnes, PhD and assistant professor for pre-service dual certified (elementary/special education) teachers at North Georgia College & State University explains, “The classroom placement of children with special needs is one of the most controversial issues dealt with in the field of special education.   As a result, the church should not find it surprising when it too struggles to find the perfect fit for a child with a complicated set of needs.” (Read the rest here.)
 Kymberly Grosso at Autism in Real Life at Psychology Today:
...in addition to stress, the autism diagnosis frequently is a life changing event for the parents of the child as well as the entire family unit. Therefore, if a marriage is strong, the couple may weather the storm over time and possibly come out stronger. But for couples who are already having difficulties in their marriage, autism is a stressor that can become the proverbial straw that breaks the camel's back. And for those couples, autism becomes yet another reason to divorce. (Read more of this research- and experience-based post here.)

God's good design (a bit of my story, a bit of a new blog annoucement)

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For much of high school and some of college, I was planning to become a pastor. I was sent by my denomination to a summer program at a seminary in South Carolina during the summer between junior and senior years of high school. It was a program aimed at encouraging youth to consider vocational ministry, and I loved the idea of serving God in ministry as a paid job.

Then, as I began feeling disillusioned with some aspects of that denomination, I felt drawn to another passion of mine: education. I taught special education for three and a half years. While a common reaction from friends and strangers was something like, "Wow, special education. I could never do that," I never would have wanted to teach anything else. Even though I was working in public schools rather than religious ones, it was definitely a ministry for me.

Lee and I knew we wanted for me to be a stay-at-home mom before we got married, and I stopped teaching after I became pregnant with Jocelyn, choosing not to start the next school year because that would leave my school without a special ed teacher when I left partway through the year. When I was six or seven months pregnant, though, I received a call from an educational non-profit asking me to consider being their director of design for special education. Right after I got off the phone, we went to our friends' apartment for dinner, and I was agonizing over the call. (Thank you, Jenelle, for letting me talk out some crazy that night!) I didn't take the position, but it was truly my dream job at the time. And while I knew then (and now) that it was the right decision, I walked away from it with a grieving heart.

Only a few weeks after Jocelyn was born, that same organization came back to me and ended up offering me a chance to do part of that job while being a mom. It was a precious blessing, and I loved it, but it limited my ability to serve in church-based ministry because I had little time left after training special education teachers and being wife and mom.

Same song, second verse for grad school: loved it, but limited in ways I could serve at church because it was a challenge to have anything left at the end of the day. It was fantastic to grow in my knowledge and training in special education, and I knew I was ministering to my family at home. I still yearned for meaningful church-based ministry that didn't exhaust me because of the other things on my plate.

Enter the role we're in now as special needs ministry coordinators. Does it fulfill my passion for working with people with special needs? Yep. Does it provide a meaningful place for us to minister in our church and share the Gospel? Yeppers.

Isn't it cool how God works?

As I've had some recent opportunities to talk with people wanting to start or grow special needs ministries at other churches, I've found an even more ideal professional outlet than the job I passed up when I was pregnant. I get to serve my church. I get to help other churches become welcoming places for people with disabilities. I've even had a few conversations about speaking engagements and writing opportunities related to this.

It's good stuff. Looking back, I can see how God has been positioning us for where we are now, weaving together my various professional desires and passions into something bigger than I could have ever imagined.

Yes, I'm still loving my role of stay-at-home wife and momma, and if I can't serve my own family well, I have no place helping anyone minister to other families. That's not changing, nor is my commitment to having white space in our calendar and taking care of my health.

That said, I'm launching a online place (apart from Dinglefest) to support and equip those starting and/or doing special needs ministry. I'll also be able to use it as a networking tool at and following the Accessibility Summit, a special needs ministry conference in DC that our church is sending me to in a few weeks.

So, without further ado, here's the new blog: www.theworksofgoddisplayed.com. It's pretty bare bones now (with the main content so far being re-posts from here), but I'll be posting more and more in the coming weeks to have it running well before the Accessibility Summit.

I'll still be here too. I still need a place for other writings and picture posts and reviews and randomness. The main difference will be that instead of putting posts about special needs here, I'll put them there and link to it here.

I don't know what God is going to do with this. It could fizzle into nothing. All I know is that right now we need to do this to be faithful to what God is doing in and through us.

And we're excited!

more coming soon!

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I'm working on some other projects as well right now, so I'm not ready to share a timeline for the full site to be active yet. That said, here are some hints at what to expect here:
  • posts about the "why" and "how" of church-based ministry to people with special needs
  • reviews of available resources (including books, curriculums, and other ministry tools)
  • a page of online resources that might be helpful to you
  • a page with links to the disability-related blogs I read regularly (some are ministry-related, some not; some are written by Christians, some aren't)
  • a page that lays out what special needs ministry is and isn't all about
And I'm sure some of this will change and evolve over time. My hope is that this will glorify God and equip His people.

Who is welcome at your church?

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Lee and I love leading special needs ministry for families at our church. I wrote this in our Christmas letter this year: "To say we have been blessed to serve in this way would be an understatement. The best description we can offer is this: it’s not really an effort but rather it’s like we’ve been offered a front row seat to watch (and be a part of) the work God is doing in the lives of these children and their families. To Him be the glory!"

And it's true.

A couple months ago, a Christianity Today blog post was titled Is Your Church Open to Autism? I didn't find the post until someone else linked to it on Facebook today. While it's a good post, it was the comments that really caught me.

As in, caught me like a solid punch to the gut.

It's painful to know that church is the hardest place to go for some families whose children have disabilities. No, not because of anger at God or because of any other theological differences. Church is tough because many churches aren't welcoming.

I don't think they do it on purpose. But if your church isn't proactively welcoming people with disabilities as part of your body of believers, then you're probably not welcoming to them. If your church doesn't have an answer if a parent calls the church asking what Sunday morning could look like for their child with special needs, then it's simply not a welcoming place. (The same goes for churches with no answer for what Sunday morning could look like for an adult with special needs.)

I haven't been able to find the research to back this up, but I've seen estimates that 75-90% of people with disabilities are unchurched in the US.

That's just not okay.

Consider this comment left on that blog post:
The most difficult part of having a child with Down syndrome has been at church.

Although I go to a great church, they have ignored her special needs.

When she was a toddler, I was told that "she was to be treated like everyone else."

That was folly. If she had been treated like everyone else, she would have been in nursery until she was five, because she couldn't walk!

Now that she's older, she goes to the children's ministry for part of the time, but they don't require her to do what she needs to do. I walked into one activity where she was wandering and when her younger sister tried to get her to sit down, the leader said, "She's OK." She wasn't OK, and it wasn't OK for her to be wandering.

Our AWANA program has no adaptations for her, although the workers are working with me so she can make progress.

Even though she IS at church, she really isn't included in a meaningful way. It's as if she's a mascot or a pet, not a person with a soul. I read no where in my Bible that there's a special dispensation for people who were born with 47 chromosomes in every cell. The church needs to communicate the gospel to her, too. She CAN understand.

Why don't they?
It sounds like they are working to do something for children with special needs at that church, which is sadly more than a lot of churches do. But the phrases that grabbed me were "included in a meaningful way" and "[t]he church needs to communicate the gospel to her, too." Amen to both of those.

Christ didn't shy away from people with disabilities. He didn't avoid it because it was too hard. He saw in disability the opportunity for the works of God to be displayed.

I wish all churches saw that. I wish all churches preaching the Gospel were willing to communicate it in a meaningful way to those who don't fit a traditional mold of learning or behavior.

I'm glad to be working with our church to make that happen.

And I'm praying for other churches, that none preaching the Gospel would limit to whom that Gospel can be preached.