disability ministry weekly round-up {april 20, 2012}

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Nope, it's not Monday, and this usually goes live on Mondays. But I've been so involved with preparation for the Accessibility Summit - which starts today and at which I'll be speaking tomorrow - not to mention the paperwork for home selling/buying and our adoption, that I'm just now getting around to it. Next week I'll have several posts based on my session at the Accessibility Summit, so you can look forward to that!

A heart shattered by a glimpse into autism May we see our children in the faces of those like Tim - just as Rob did - so that circumstances like Tim's begin to change by the response of God's people.

A parent's greatest fear Dr. G. updated this a few days ago, and it's just as powerful for interacting sensitively with parents affected by disability as it was when I first read it.

Warren argues, Dogs and people with disabilities will go to heaven Mark's post is thoughtful and helpful about some unwise word choices from a Christian leader (a leader who, by the way, is known for his commitment to special needs ministry, so I'm sure this was an unfortunate example of not thinking through the implications of words not evidence of anything more than that).

5 Things You Should Know about Child Sexual Offenders Given the research showing that people with disabilities are more likely to be victims of abuse, we all need to consider the hard and disturbing truths here.

Speaking Out: The Gift of Ministering Undeterred by Disabilities I haven't seen this resource from the United Methodist Church, but it sounds promising.

Woman with autism is parish altar server I love articles like this one. And I'll love it even more when this sort of thing becomes so commonplace that it's no longer newsworthy.

the limitations of "never"

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International adoptions never happen this fast.

Except ours is happening this fast.

In this market, homes like ours never sell in less than 24 hours.

Except ours did.

And the first decree in adoption cases in Taiwan never comes in less than two weeks, and even two weeks was the fastest that our adoption coordinator had ever seen. We were told to expect 4-6 weeks.

Except ours came in eight days, on April 18 after a court date on April 10.

 Yes, my friends. You read that correctly. We have the first (of two) decrees already.

 I've known the verse Luke 18:27 for a long time, but I haven't lived like I do. Until recently, I haven't been living a life that expects Him to cast aside man's nevers.

But he said, “What is impossible with man is possible with God.”

Our "never" is limited by God's sovereignty. His plan has included so many sweet surprises for us, and words cannot express how blessed we already are by Zoe Amanda.

 I can't wait to see what God has planned for these little hands, can you?




















(I know the next question from everyone is, "How long now?" Well, from first to second decree is 10-25 business days, so that would put our final decree sometime between May 2 and May 23. Then travel is three to four weeks later, so - judging by expected timelines - we'll depart for Taiwan as early as May 23 and as late as June 20. In other words, we will - God willing - hold our youngest daughter and bring her home in a month or two!)

in which I farm my children out as test subjects

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I like research, particularly about child development. So when the Duke cognitive development lab called us when Jocelyn was a baby, I was more than willing to bring her over to their lab for a research study.

Nevermind that she was the worst test subject ever and completely refused to cooperate. 

Evidently, that initial performance didn't eliminate us from consideration for future studies. We've been over to Duke four times since then, including today's visit. Three of her visits have been with the Brannon lab, which focuses on the "development & evolution of numerical cognition." And two others were at the Child Learning Lab.

Why do we do it? Well, most of us like hearing the results of research, even if we wouldn't word it that way. What parent isn't interested in how kids learn? Or what's healthy to eat for growing kids? Or how much TV is recommended for each age (even if we just want to know so that we can ignore that guidelines when we see fit)? If other parents hadn't been willing to let their kids be studied, then we wouldn't know the answers to those questions and others.

Our first visit, that one ending in failure, was part of a study published in the journal Infancy, Changes in the Ability to Detect Ordinal Numerical Relationships Between 9 and 11 Months of Age. How was Jocelyn described? "Data from an additional 9 infants were discarded because of fussiness resulting in failure to complete at least four test trials." Yep, that's a fitting description!

However, the next couple of visits were successes:
Our latest two have been this calendar year, so I can't share any links with you. I can, however, share a sweet story with you: As part of the study today, some participants were given a variation of the classic immediate vs. delayed gratification test, in which a child is asked to choose between receiving a small quantity of some goodie (in this case, Skittles or M&Ms) right away or getting a larger quantity of the goodie after waiting. Jocelyn was with the grad student in a different room, and while I could see her through a window, Robbie and I were busy reading and rereading the three dinosaur books and two snake books they had. (Over and over and over again. The study lasted an hour, so if you want me to recite any of the books, I bet I could!) As a result, I wasn't sure if they did that task.

When we got to the car, the following conversation ensued:
Me: Did you do anything today with Skittles or M&Ms?

Jocelyn: No. [pause] Why, Mommy?

Robbie: Please, I have some M&Ms, Mommy? Please?

Me: No, Robbie, I don't any M&Ms. Sorry, buddy!

Robbie: I not Buddy. Buddy is a Tyrannosaurus Rex.

Me: Yes, Buddy is a T.Rex on Dinosaur Train. Jocelyn, some of the kids in this study were given a choice of getting a little bit of candy right away or waiting a little longer but getting more candy. Which do you think you would have chosen?

Jocelyn: To wait and get more candy.

Me: Are you sure? You would be willing to wait for more candy?

Jocelyn: Yeah, because if I just got a little candy, then I would eat it all, but if I waited and got more candy, then I would have some to share.

Robbie: Please, Jocy, you share candy with me, please?

Jocelyn: Sure!
Oh, how I love my precious lab rats!

disability ministry weekly round-up {4/9/12} - part 2: family and church insights

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As promised, here is the rest of this week's round-up: links specific to churches or directly from families.

Autism and The Church One mom's plea for other mom to try out church with their children who have autism: "What I am realizing is this: As long as we parents keep our children at home, our church and our community are allowed to remain blissfully unaware of the autism epidemic."

After school pick-up: A mother's reminder of a need for brokeness: This post by my friend Gillian Marchenko is powerful. "God broke me over the birth of a child with a disability. At the time I was a missionary and a pastor’s wife, and I hadn’t even realized my need for brokenness. But oh, how I needed it."

Ministering with love & trust: "Mills-Fernald expresses that the biggest challenge seems to be 'convincing parents that we are for them and want to partner with them. So often times we hear horror stories from parents being asked to leave previous churches.'"

Do More Than Be Aware, Care: "So today, instead of asking you to be aware [of autism], I'm asking you to care. Put faces with the statistics."

Creating Space in the Church for People with Disabilities: Amy Julia Becker, who I met during her recent visit to North Carolina, asks, "What if all churches were known as places where everyone was welcome?"

Going to Church on Easter: This is a simplified social story that you could use as a springboard for creating your own. Social stories are helpful, research-backed tools for helping some people with disabilities, particularly those with social disabilities, know what to expect or how to act in situations that are unfamiliar or challenging for them.

An Investment in Respite Care Saves Families: "Churches and other civic organizations can help answer the need of families with children with special needs by offering low-cost respite care for an occasional evening out for weary caregivers."

'Weak' are indispensable: "If we don’t see inability first, but rather a person’s ability to contribute to our community of faith, it frees us to see and welcome the vulnerability in our own lives."

FAQs: Should Parents Lead the Special Needs Ministry? "We have found that weekly commitments are sometimes hard for parents and families impacted by disability. We are intentional in not placing those parents in an area of service that creates more stress for their family."

Archbishop calls for support for those living with autism: "The Church needs to address the alienation often surrounding those living with autism, especially children and young people, by coming to the aid of those affected, said Archbishop Zygmunt Zimowski."

Autism and the church: "As my little family and I have been making preperations for Holy Week and Easter celebrations, the one thing missing for us when Sunday rolls around is church." Why? Because her son has autism. She describes failed attempts at church and ends with,
As autism numbers grow, and more and more families have this same problem….I wonder what it will take to make the church stand up and realize that sending missionaries to Uganda is great….but they have a bigger problem right here on their doorstep. There are children and families right here in your own communities that need you right now. How long are you going to ignore them?
So?

How long will we?

~+~
As promised yesterday, another of my favorite Resurrection Day songs,

disability ministry weekly round-up {4/9/12} - part 1: news reports

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Sorry I've been silent so long! In the two weeks since I've posted, we: celebrated my son's birthday (three!). put our house on the market. got a full price offer. signed the contract. found a new house. made an offer. signed the contract. found out we're approved on the US side for our adoption of Zoe Amanda. gotten pink eye (my son and daughter). gotten strep throat (me).

Whew!

Now you know where I've been - life has been full, but it has been full of blessings, so we are thankful. Because I missed blogging last week, though, I'll have two days of round-ups this week. This post focuses on the latest news that has caught my eye regarding special needs ministry, and tomorrow will be chock-full of church- and family-specific tidbits!

Russia Struggles to Reform Soviet-Era Orphanages: Why does this matter? Because the body of Christ is not an American creation, and when we learn that "Almost half in this “orphan city” have disabilities or special needs, and their parents are encouraged to send them to an institution," we should be moved to consider what we ought to be doing missionally and internationally, that the church share the love and good news of Christ people with disabilities of all nations.

Sensory Processing Issues Explained: This is a good primer for understanding the sensory issues that might be represented in your church.

CDC: U.S. kids with autism up 78% in the past decade: Yes, this is something we in the church need to know. And, more than that, this should lead us to question, what can my church do to embrace and encourage these families?

New data on autism spectrum disorders: If you just want to read the data from the CDC for yourself, here 'tis!

The New Autism Numbers: This article explains where the new numbers come from. Granted, it is still important for us to be aware of autism, even in places like Alabama where the autism incidence is more like 1 in 210, but we need to know that we're being overly simplistic when we start saying, "the rate of autism is one in 88, so that means if your church reflects those statistics, then you should have at least one child with autism for every 88 kids." My point? Numbers are good to know but not essential; relationships are what matter most. 

And to close this Easter Monday, here's one of my favorite Easter songs, "It is Finished" by Matt Papa. I'll share another favorite tomorrow!