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.

disability ministry weekly round-up {1-23-12}

For me, this week includes meeting with a member of the Joni & Friends - Charlotte team, writing for Treasuring Christ curriculum (I currently write the take-home piece for parents), celebrating my daughter's fifth birthday, revising my master's thesis into two articles to submit for publication in a leading learning disabilities journal, seeking donations of gift cards from restaurants to give to parents for our Valentine's Day respite night, and getting over the cold that's currently kicking my butt (and then catching up on the emails that I've let slide while I've been under the weather). Granted, if that last item doesn't happen, some of the others might not either, so please pray for my recovery!

What's your week looking like?

Please respond to this tweet or leave a comment if you know of any autism-friendly churches in the northern Nevada (Reno, Carson City, Dayton) area. I have a friend who is searching for a place for her family, and I'd love your help. (And yes, I did check the listings in this post, but I didn't find anything.)

When the Children's Pastor is Impacted by Special Needs This guest post on The Inclusive Church is from Kristy Moser, who was a Special Needs Ministry leader in her church before her son Wyatt was born with special needs. Here's Kristy's personal blog.

3 Minute Interview: Andrea Roberts Reece's Rainbow, started by Andrea, advocates for orphans with Down syndrome and other special needs, and I am thankful for that organization and for Andrea.

Blessed By The Dozen A newstory about a mom of 12 including three children with Down syndrome who were adopted into the family.

Disability and The Gospel I'm looking forward to this book, being published by Crossway in July.

Going to Church with My Autistic Brother This post provides a mix of personal experience and ministry advice.

Parents of Children with Special Needs Need to Guard Against Caregiver Stress & Fatigue How can your church help?

Michael Aaron, our Special Angel A little boy was born to Christian musician Aaron Shust and his wife last week, with the surprise (to them, but not to God!) that little Michael has Down syndrome. Would you leave a comment at his blog to encourage him and his wife? Go here for his latest post, and - if you're not sure what to say - here's a post from a different blogger with some advice for encouraging new parents of a child with Down syndrome.

KIDS RAISING PARENTS: Parents, Teach Your Children to Make Handicapped Friends On EpicParent.tv, Christ Spradlin's daughter stepped in with a post last about growing up with a mom who only has one leg. Kylie did a great job!

Noah's Story If you haven't interacted with Rick Smith, aka Noah's Dad, you're missing out. Here's a guest post he wrote for the Orange Parents blog.

An Incongruent Culture My friend Barb of Snappin' Ministries (by the way, Snappin' stands for Special Needs Parent Network) wrote a great post about how we view life.

The Church, Autism, and Apologetics A pastor and an autism dad's perspective on theology, church, and the spectrum.

A Harvest of What Is Yet To Come I never promised these links would exclusively feature links related to disability ministry, and I'm taking a bit of blog owner license with this one: Katie Davis, best known by her book Kisses From Katie, traveled to Uganda for a three-week mission stint at age 18, returned permanently after graduation, and has adopted 13 daughters, including ones with medical needs like HIV. (Hmm, maybe this is related to special needs ministry after all!) And this is her post from last week on the {in}courage blog.

thankful that God has confirmed many things for us lately

I know I've been MIA over here until the past week, but I thought I had mentioned our upcoming move before. Maybe I didn't, given the number of questions I've gotten about my mention of it in our last post, so here goes...

Back in May, I shared our plans for adoption with y'all. And at the end, I mentioned that we were planning on staying in our current home forever and ever, amen. Right after I posted that, I told Lee, "You know, now that I've declared this publicly, this means we'll end up moving." That's how it tends to go with us. God is concerned about shaping our hearts in the process, so going through the process of buying a home we thought we'd stay in forever and making renovation plans to add space was beneficial.

But.

He has led us to change those plans. In June, Lee's sister and her husband were looking at homes in the area, and I started helping them. In doing so, Lee and I started finding houses in our price range that were larger and closer to all our frequently visited places (work, church, schools, etc.). We waffled about the idea for a while and, while praying about it, focused our efforts of wrapping up little projects here and there to get our house ready to sell if we did... or to enjoy ourselves if we didn't.

Long story short, we decided that we would move toward selling and wait to begin the adoption process until we're in a new home. A lot of factors weighed in, but one was my health. We actually expected to have the house on the market by October, but my body changed our plans.

In September, my knee gave out, a result of rheumatoid autoimmune disease (which is a term my friend Kelly is advocating for, since it's more accurate than "rheumatoid arthritis").

In October, I had knee surgery.

In November, the breathing problems I've had on and off in the past couple years became much worse.

In December, I was diagnosed with asthma, most likely due to RA lung damage though we won't know that for sure until I see a pulmonologist. (Hi, my name is Shannon, and I'm addicted to specialists.)

Some wonderful news in all this is that the RA damage is not continuing. My IV meds have it under control. The knee and lung issues are the result of RA damage that occurred in the year before I was diagnosed and the year after that when we couldn't start strong treatments because I was pregnant with Robbie and recovering from childbirth.

But isn't it neat how God confirms things for us? You see, one of the reasons for the planned move was that a three-story house for a woman who has a chronic disease that can affect her joints and lungs and heart... well, that's just not the smartest plan. It has become clear to us that we need a home that will work for us, even on my bad days. We had already determined that we wanted our new home to be wheelchair accessible so that we can host all of the families we get to know and love through our church's special needs ministry, and it could turn out that I need that level of accessibility someday too. (Given the success of current treatments, that's not expected, but the prognosis for RA was much bleaker 15 years ago and the meds that work so well for me now have only been out for that long, which means that long-term side effect aren't known. That makes it much more comforting that we worship a God who does know all that this life will hold, doesn't it?)

My recent health issues have confirmed adoption as the right next step for adding to our family too, because another pregnancy would require us to stop my meds. Any prolonged break in treatment makes it more likely for my body to reject the medicine whenever I'm ready to restart it, plus stopping meds means that the damage we've stopped would likely start again.

But the cool thing is that God set adoption on our hearts before we got married. Our premarital counseling surveys are in a box somewhere, but I remember that in response to a question about how many kids we wanted, we both wrote that we hoped to have a couple of biological children and then adopt. For us, adoption was never our plan B. It was and has always been part of plan A for our family. God has just used my health circumstances to confirm that.

So next step, get this house on the market next month. Then, sell it and find another house and buy that one and move. And then get underway with adoption plans.

Please pray for us. In my ideal world, we'll get an acceptable offer the first week our house is on the market and have time before closing to find the perfect-for-us home to buy so that the whole process will be as brief and painless as possible and we can move full speed ahead with the adoption plans. I know that's not the most likely scenario in the current housing market, so you can either pray that everything will go according to my ideal scenario or that God will sustain us through the different scenario He has in store. :)

And also pray for us as we research a tough topic related to our adoption plans. I wish I could share more than that cryptic comment, but I can't yet, except to say that God has drawn us to consider something we hadn't considered before and that we need to be bathed in prayer.

Thanks, y'all.