disability ministry weekly round-up {3-19-12}

Let me start with a head's up: I'll probably be quiet over here this week. We have a huge adoption fundraising night this Thursday (if you're in Raleigh, come on out!), and I'm prepping the silent auction and other details. I'll be back in full force next week, though!

The Includers: "It can be easy to get caught up in a group of peers and be comfortable without even noticing those on the outside." {How can we help kids and adults - with and without special needs - include their peers at church?}

What I'd like you to say to my kid with special needs: "I want you both to treat my son with special needs the same you you treat his sister, or any kid." {How can we do that well in ministry settings?}

Tending the Weeds in Your Ministry Relationships: "You don't have to be afraid of examining your ministry community, no matter how weedy it may be, because God meets you in your difficulty with his amazing grace." {When's the last time you examined your ministry area or your life to determine where weeds need to be pulled so that healthy growth can occur?}

Perhaps you should sue God: I'm not going to quote from this post, a letter from a mom of a beautiful child with Down syndrome directed to the parents who sued medical professionals for the "wrongful birth" of their daughter with the same diagnosis. Just go read it.

Special treatment for kids with special needs (and the fine line we walk as their parents): "I want my child to be treated like every other child. I want my child to get special accommodations for his disabilities. These two things may seem contradictory. Actually, they're not." {Do you struggle with figuring out where to modify and where not to for kids with special needs at your church? In those struggles, do you engage parents as allies in figuring that out?}

Young Life hosts day camp for special-needs children and adults: "A lot of folks just assume that because our friends have mental disabilities, they can't grasp the Gospel, but that's not true. I think our friends grasp it better sometimes than we do." {What are you doing to not just open the doors of your church to people with disabilities but to share the Gospel with them?}

Joni Eareckson Tada on Wilberforce Award, "Better Off Dead Than Disabled" Mentality: "Most of all, it's been my heart's desire to see the church carry out the mandate from the Gospel of Luke, the 14th chapter where Jesus says to go out and find the disabled and bring them in. My life goal is to see the world's one billion people with disabilities embraced and encouraged by the church." {Is this your heart's desire? Is your church helping to reach Joni's goal or not?}

the hope in wrongful birth cases

Yesterday, John Knight did a beautiful job of pointing out the good news in wrongful birth cases like the one that awarded parents nearly $3million in Oregon recently.

The recent decision to award an Oregon couple $2.9 million from a ‘wrongful birth’ lawsuit has left me feeling like there’s actually some good news embedded in this story.

Four years ago a little girl was born with Down syndrome. Her mother had received testing and would have aborted her little girl if the results had shown evidence of Down syndrome. But somebody made a mistake with the test, the mother was told her baby was fine, and the little girl was allowed to live.

So the couple sued, stating they now needed significant financial resources to care for a girl who they otherwise would not have wanted before she was born. A jury agreed.

Here’s the good news from that article: “These are parents who love this little girl very, very much,” Miller said (their attorney). “Their mission since the beginning was to provide for her and that’s what this is all about.”

I don’t know if ‘that’s what this is all about’ or not. Comments and blogs have vilified these parents for their openness about wanting to abort. Yes, I find their initial thinking about abortion to be horrifying as well.

But somewhere along the way they learned to love this child. She went from being unknown to being known. She entered a family and was given a name. And today she is loved.

Abortion is an act of violence against a small human being who cannot defend herself; that is reason enough to be against it. But it is also a final act – that small human being will never be known.

Those of us who have already decided against abortion are frequently dismissed as deluded or guided strictly by manufactured sentiment – of course we’ll see value in and love a child with disabilities.

But this couple was willing and preparing to abort if disability was found – yet love their child today. They cannot be dismissed by abortion proponents so easily.

To read the rest of John's thoughts, go here.

We also saw the same change in the wrongful birth case in south Florida last summer, in which the parents were awarded $4.5million because the ultrasound technicians and doctor denied them the opportunity to abort their son by not diagnosing his missing arm and leg prior to birth. In that case, the mother was asked, "Does his life have value?"

Her response? "Yes, a lot of value. Great value."

While I disagree with a lot in these cases, I can't disagree with that.

that baby girl in Taiwan still needs a family - please pray!

I posted about a month ago about Li-Ru. She's eight months old now. She has some special needs, though her prognosis is unknown right now other than "developmental delays" and "schizencephaly." She's in Taiwan. She doesn't have a family. She will be transferred to an institution soon - probably within a week or two - if she doesn't have a family to adopt her.


 The costs are less than I previously shared: $10,000 for all the in-country costs in Taiwan. Additional costs include US paperwork expenses and travel, which for us will be about $7,000 ($1,400 for our home study, $890 for US CIS paperwork and fingerprinting, $3,500-4,000 for travel and lodging in Taiwan, and ~$900 for post-adoption paperwork and court fees in the US). That brings the total estimated cost for Li-Ru's adoption to $17,000.


Please spread the word. Please do what you can to help us find Li-Ru a family. No, her needs aren't known, but she loves her caregivers and she is making progress, albeit at a different rate than other babies. And she would thrive much more in a family than an institution.


I have a picture and a video and some medical records I can share with anyone who is interested. Just email me at shannon@theworksofgoddisplayed.com.


~+~
 Today I began posting at Support for Special Needs about our adoption journey. I'll be sharing over there once or twice a month about the whole process of adopting a child with special needs, and I'm thankful that they were willing to add me to the line-up!

what I want you to know about my greatest fear in all this

When we began the process of adopting Zoe Amanda a little over a month ago, I was scared to tell anyone. I wasn't sure what the reactions would be.

I spent this morning at the park with a new 60-year-old male friend* (*just kidding. she is a new friend, but she's around my age. I met her online via my other blog, and this was our first time meeting in person, and Lee refers to anyone from the interwebs as a 60-year-old male friend, as in she-could-be-who-she-says-she-is-online-or-she-could-be-a-60-year-old-dude.) Wait, where was I? Oh, right... I spent the morning at a park with a friend who also has two preschoolers and who is adopting a baby girl with special needs in China. She has experienced the reactions we were initially afraid of: people - including other Christians - questioning why they would even consider adopting a child whose needs are largely unknown.

Y'all have been amazing, though. We were scared that this journey would be lonely and discouraging without others cheering us on. And instead, we have been overwhelmed with support. We've been congratulated about this baby's arrival as often, if not more so, than with the pregnancies for either of our older children. Friends stop us to encourage us all the time.

Let me interrupt the regularly scheduled blog post to say: Please, please, please continue to do that. I cannot describe how much the encouraging comments in person and online have sustained us and ministered to my heart.

But the concern I still have? I'm scared that people won't realize that we don't have everything figured out. I don't know if I exude far more confidence than I intend or what, but it seems like most folks think that we know a lot about CP (we don't), that we're not a little freaked out by the recent realization that she probably has some degree of fetal alcohol syndrome (we are), and that my educational and professional background makes us fully equipped to parent a child with special needs (it doesn't).

We aren't heroes. We don't know how we're going to do any of this. We are excited, but that doesn't mean that we're not feeling completely in over our heads sometimes.

Okay, most of the time.

We aren't lying when we say that we're excited. We are.

And when I confess, like I am doing now, that we're scared too, that doesn't mean the excitement is gone. This whole process has taught me a great deal about the range of emotions that can all exist in one person at one time. We're excited. And we're scared. And at any given moment, we have at least a dozen other emotions going on, most of which we can't identify by name.

If I'm honest with you, here's the truth: I've been intentionally keeping myself very busy with house projects and packing and lists and paperwork and writing projects and. and. and... because when I stop long enough to be still, the weight of uncertainty can feel crushing.

When we meet in the hall at church or elsewhere, I'll share the excitement instead of the fear, because it's harder to put uncertainty into words and because sometimes voicing a fear lets it grow more. But I'm terrified that I'll seem so confident to everyone that on days when I'm feeling anything but, you'll think, "Oh, Shannon. She has it all under control. She doesn't need any encouragement."

I do. I need it now, and I'll need it once Zoe Amanda is home. Any confidence you see in me isn't mine. It comes from relying on the One in whom I can be confident, just as Paul did during his missionary journeys:

For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. 
For we were so utterly burdened beyond our strength that we despaired of life itself. 
Indeed, we felt that we had received the sentence of death. 
But that was to make us rely not on ourselves but on God who raises the dead.
{2 Corinthians 1:8-9}

I want you to know that we are confident in God but we are fearful in our flesh. I want you to know that we're not indomitable. I want you know now that I don't have it all together.

And I want you to know, more than anything, that we need you. We need friends who realize that we're human. We need community that sees the fears in our eyes as we're sharing the excitement.

And as much as we need that now, we'll need it even more when we return home and try to figure out what our new normal looks like.

That's what I want you to know.

disability ministry weekly round-up {3-12-12}

A Disabled Adult Child, and an Always Uncertain Future "Reality has hit hard now that our older child has moved out of the nest but our youngest one never will. There is meaning in all of this when I let myself see it, but that can be hard when I’m changing a diaper or giving my 22-year-old daughter a shower. I struggle, nearly every day." {If this mother was in your congregation, how would you encourage her?}


Our Church Needs Brody "It is beautiful when you see children look past disability. There is something touching when you realize that they are not affected by the prejudice of our society. Brody is just Brody, and they too, were proud of him." {Does your church realize that Brody, who has cerebral palsy, is needed in your community?}


Darla, Cade, and the Boy at the Aquarium "We characterize people with Down syndrome by their challenges—much like we portray people in poverty by their problems. I’m so glad I’m not identified by what ails me. Chris? He’s the guy that is overly concerned by what other people think of him. Or, Chris? Oh, he’s a “considers-his-own-needs-above-all-others type of guy. Thankfully, I’m just Chris." {Do you talk about people with disabilities at your church by using their diagnosis or by using their name?}


20 Years Old Living with Russell-Silver Syndrome "I made it, but my father didn’t. I was in my mom’s womb trying to grow when the doctors saw that I was having trouble. “Failure to thrive” was written on my chart and there was concern. Ultimately, I was born a month and a half early at 2 pounds, 6 ounces, but my father was long gone by then. He didn’t want to have anything to do with a deformed kid." {Another dad, John Knight, has been transparent on his blog about the tough time he had when his son was born blind. Is your church a safe place for a dad to battle through the emotions - even the ugly ones - they might face when his child is diagnosed with a disability?}


Forgiveness for Moms who Fail "In my twenty-five years of pastoral ministry, I don’t think I have met a mom, including a preschool mom, who feels like she has done a good enough job." {While not special-needs specific, this article highlights a battle for moms, myself included. Is your church an affirming and encouraging place for moms struggling with these feelings?}


Ending the R-Word: Ban it or understand it? "Every time Ellen Seidman hears the word "retarded," she worries for her 9-year-old son, Max, who has cerebral palsy. She wonders if people will ever respect him, or see him as an equal, if they associate that word with people like him, who have intellectual disabilities. {I know we don't want youth and college students - from whom I hear the r-word more than other groups - to see Christianity all about rules, but are you willing to point out the de-valuing of God's creation every time someone who knows Christ throws around the word "retard" like it's nothing? I mean, you wouldn't be okay with other taboo words - you know, the ones we replace with #*&!$.}


Church helps with religious rites for special needs children "Most religious institutions today provide assistance for families with special needs children to be included in their services. The best thing for a family is to talk to their pastor about their own needs." {How will your church respond when parents whose children have disabilities talk to the pastor or another church leader about their needs?}


The Most Unlikely of Heroes "Emma forces each one us to see life through a different lens. She reminds us daily of what is truly important in life. It has been an incredible time for each one of us to learn to trust in God’s wisdom and sovereignty, especially during the times of suffering Emma has gone through." {This family adopted a daughter with Down syndrome. What does your church do to support families who adopt, keeping in mind that children who are adopted have higher rates of special needs?}


Autism - Don't Look Now, I'm Trying to Think "Children with autism look away from faces when thinking, especially about challenging material, according to new research from Northumbria University." {Do you usually gauge student attentiveness by eye contact? Should you reconsider that for kids with autism or with autistic traits?}


Very special worship "'Nathan's general view of the world is that it is unpredictable, challenging, and scary,' says his father, Seth Horwitz, 'and this provides a really comforting, secure moment.'" {This dad is talking about a Jewish service for kids with disabilities. What can your church do to create a comforting, secure environment for kids whose disabilities might make life unpredictable, challenging, and scary?}


Ministry brings families 'back to church' "'For a lot of families with special-needs children, they just stop coming to church because it gets too hard,' Morgan said, 'and this ministry is kind of something that helps bring people back to the church … and creating a place kids can share the gospel.'" {Where is that place in your church? If you don't have one yet, what would be the first step to creating one?}


Portland-area couple sues Legacy Health for $3 million for 'wrongful birth' after child is born with Down syndrome "The Levys filed suit against Legacy Health, claiming that Deborah Levy would have aborted her pregnancy had she known her daughter had the chromosomal abnormality." {How are you standing up for the lives God created?}