disability ministry weekly round-up {2-16-2012}

It's Thursday. This usually posts on Mondays. That tells you a little about our week. It's been marvelous and busy and paperwork-y and tiring and refreshing and paradoxical.

The coolest thing about this week? I can't remember another time in my life that has so transformed my faith and increased my trust in God. You know the announcement I made last week? Well, we hadn't even started our home study then. And now it's done, being sent via email to Taiwan today to be translated into Chinese and being sent via express mail today to U.S. Citizenship and Immigration Services at the Department of Homeland Security with our application for advance processing of orphan petition. (And I may frame it because it says my housekeeping standards are excellent. How many wives and mothers of small children have an official document stating that?)

Oh, and did I mention that we're awaiting word about a funding source for a large portion of our adoption costs? (And by large, I'm talking five figures. I'm talking 75% of the funds we need covered in one donation. Please pray.)


And now, on to the links:

"That lovely, lovely man" I love how this story highlights the way in which God can swap "the minister" and "the one ministered to." (HT: Challies)

7 Simple Steps that Will Help You Keep Volunteers Good and relevant post for what we're working through right now at our church.

Before and After Club: One-Year Reflection This ministry of Northview Church started as a way to help kids with social challenges from various special needs connect with each other, God, and their community, and this is a neat report on what has happened in the past year.

Getting people to see the ability instead of the disability Amen.

Why 'Autism Linked To...' Headlines Don't Tell the Whole Story Useful article in thinking about how the media sometimes (mis)handles research and how we ought to think about new links to conditions like autism.

Books Explore Ministry to The Disabled, Suffering I have only read the first two books here (and highly recommend them), and I look forward to getting the third one.

Beeping Easter Eggs Great guest post on The Inclusive Church about an adaptation made to one church's Easter egg hunt to include children with visual impairments.

I know I've overlooked other links in the busy-ness of this week, so let me know if you've seen anything noteworthy that I should include in my next round-up post! (And please don't be shy if it's a post you wrote, as long as it applies in some way to disability ministry.)

Free childcare AND a gift card for dinner? How to partner with local restaurants for a successful respite night

We had our third respite night this past weekend, and we added something new this time. Not only did we provide three hours of childcare for children with special needs and their siblings (10 and younger), but we provided every family with a gift card to a local restaurant or coffee shop... without spending any money.*

*Well, we could have if we started early enough. We did buy some gift cards from a coffee shop to make up for the donations we didn't get because we started so late. But if we had started earlier, we wouldn't have had to spend anything!

You see, restaurants typically have a budget for charitable donations. If your event serves the larger community and not just your church members, then many restaurants will be willing to draw from that philanthropy budget to provide one or two gift cards for families. We haven't perfected this, but I'd love to share what we learned this time!

Lesson 1: Start early. 

We didn't do this. We started two weeks before the event. Several restaurants wanted to help, but they couldn't. What will we do next time? Start a month or month and a half early. 

(Also, know that many chain restaurants have a certain amount of money provided to them each month from their corporate office for donations, and for many, that budget re-starts on the first of the month. So if you make a request that is turned down on March 15th, for example, it might be wise to try again on April 1st.)

Lesson 2: Explain why you're doing what you're doing.

What's the point of respite night? Who does it serve? Why does it matter? Get your best motivational speaker or Hallmark movie thinking cap on, and figure out your spiel. You'll need to be prepared to share it when you make verbal requests, and you'll need to include it in written requests. (And if the other members of your respite leadership team can all articulate this clearly defined purpose for and description of the event, then every member of the team can solicit donations from different restaurants so no single person shoulders all of the work!)

Lesson 3: Put your request in writing, and make it specific.

What do you want? For us, we asked for a gift card or voucher suitable for an appetizer, two meals, non-alcoholic beverages, and a dessert AND a 5:00pm reservation. (Our event runs from 4-7pm.) Some restaurants gave us exactly what we asked for, some don't do reservations but provided the gift card, and some gave a gift card that would cover part - but not all - of what we asked for. In other words, our specific request told the managing partner of the restaurant what we would like, and then each one used his or her discretion to provide what they could in return. We graciously received each donation, thankful for whatever was provided. 

Lesson 4: When you put the request in writing, use church letterhead with the church's tax-ID number listed. 

Most restaurants will require this. I made a few requests before I knew that and then had to resubmit them on Providence's letterhead with our tax-ID number. Save yourself a step by doing this from the beginning. 

Lesson 5: Work with - and not against - other ministries in your church.

Check with your church leadership to find out if other ministries are doing anything like this. Work with them so that your church only has one request at a restaurant at a time. Your church could look disorganized and a little demanding if a restaurant received multiple requests in the same time period, and the managing partner of the restaurant will be more likely to say no to both ministries' requests. Working together is working smart. 

Lesson 6: Let families know in advance.

Some families will already have other plans, and that's okay because some gift cards will be more flexible. For example, two different Chili's restaurants partnered with us, and I knew parents could use those gift cards another time (including picking up a take-home order via Chili's To Go if they can't go out). I emailed parents a week before to ask them if they would be able to use a voucher with a fixed reservation or if they preferred a flexible gift card for any time. (And let me tell you, parents get REALLY responsive when you email with a question like that!) 

The night before respite, I emailed each family with the gift card they would be receiving, so they could plan accordingly. One benefit of this? Every family came to respite - no no-shows! - and everyone arrived on time because they were excited about their plans. 

Lesson 7: Thank the partnering restaurants afterward!

Write a thank you note. Share the names of partnering restaurants with the rest of your congregation so that they will be motivated to thank the restaurant with their business. (I know Lee and I have a whole new list of places we'll go on date nights now, because we'd prefer to spend our money at a place that supported the ministry we're passionate about!) If you eat out there, ask to speak to the manager so you can thank him/her in person and let him/her know that you decided to eat there because of the donation made for respite night. 

And - on that note - Raleigh friends, you might want to visit Brio Tuscan Grille at Crabtree Valley Mall, the Chili's on Glenwood Avenue, the Chili's at Brier Creek, Carino's at Brier Creek, Longhorn Steak House at Brier Creek, Crabtree Tavern, and Brixx Wood Fired Pizza at Brier Creek. And tell them THANK YOU for supporting Providence Baptist Church's respite night in February.

Thanks!

so you must know a lot about cerebral palsy, right?

Nope.

My MAEd is in special ed, but my concentrations were learning disabilities and autism. I taught special education for four-ish years, but the preschool I was at focused on kids with developmental delays and fetal alcohol syndrome and my middle and high school teaching experience was mostly to kids with learning disabilities, ADHD, behavioral/emotional disturbances, and mild intellectual disabilities.

I'm not incredibly familiar with brain injuries or abnormalities. Physical disabilities aren’t a world I know well, though I technically would be classified by some medical professionals as having a mild degree of physical disabilities in my hands due to damage for rheumatoid arthritis. And my experience with people with intellectual disabilities is limited.  (Learning moment for today: “intellectual disability” is the new term for what we used to call “mental retardation.”)

So what outcome are we looking at for Zoe Amanda? Some degree of physical impairment with a possible side of intellectual disability.

(Can you tell from my metaphor that I’m hungry? Planning for this baby has me wanting to stress eat without the justifiable excuse – It’s for the baby! – for it.)

(Though, considering that I gained more than I should have with my two pregnancies, perhaps that excuse wasn’t so justifiable then either.)

We’ll be setting up an appointment soon with one or more medical professionals to review Zoe Amanda’s MRIs, but the three top pediatric neurosurgeons who have already seen them (before we knew anything about her) have each confirmed that the range of possibility is wide for her. On one end of the spectrum, she could be in a wheelchair and have mild-moderate intellectual disabilities (as a point of comparison for you, most people with Down syndrome who have intellectual disabilities fall in the mild-moderate range). On the other end, she could have typical cognitive functioning and a limp.

Here’s a good link describing CP, and I think the liberal use of “sometimes,” “different,” and “may affect”/”may occur” show well how varied CP outcomes can be. The root of CP is always in the brain, caused by injury or abnormalities that occur in utero, during birth, or in the first two years of life. Zoe Amanda was born at 30 weeks gestation – that’s 10 weeks early – and while lots of babies with CP are preemies, recent research indicates that the brain issues could cause the prematurity or the prematurity could cause the brain damage. It’s one of those, “which came first, the chicken or the egg?" sort of things.

(And now I’m hungry for chickens or eggs.)

We know that Zoe Amanda’s CP is caused by several small areas of periventricular leukomalacia (PVL) that are spread out in her brain.

Peri-what? you say?

Here’s a link for you other research-loving nerds, but my best description is that she has small areas of dead or underdeveloped brain tissue. The fact that they’re small instead of big and spread out instead of all concentrated in one area could be a good thing. Or maybe not. Basically, brains are complex, and a small boo-boo in a crucial spot can affect someone just as much as a big boo-boo in a less vital area.

We’ll know more after reviewing her MRIs with people who know what they mean, but the best indicator of how she’ll develop is how she develops throughout her preschool years. Right now, she’s responding well to caregivers and, other than some muscular tightness in her upper thighs, seems to be developing typically so far; she’s only three-and-a-half months old, though, so only time will tell what the outcomes will be for her.

In other words, right now we have a diagnosis; we won’t have a prognosis until Zoe grows more and shows us what she can and can’t do.

For now, we’re trusting God with the unknown, and we’re thankful that He has called us to adopt so that “having a family” is one thing she can do. 

life worthy of love

Note: Today's post and - to a greater degree - tomorrow's will give some details about what Zoe Amanda's special needs are expected to be. While many of you have asked questions and I do want to answer them with transparency, I am taking a risk by posting about this so early in the adoption process. You see, cerebral palsy is something that Zoe Amanda has, not what she is. We want you to love and care for our baby girl as a person, not as a label. In most cases, you'd see pictures of a child and meet her before learning of a diagnosis, but we can't yet share pictures publicly and we haven't even met her. Information in the absence of a baby in our arms could have a dehumanizing effect, and we certainly don't want that.

Lee's approach to this? He just tells people we're adopting and doesn't mention special needs. His take is that everyone will figure it out eventually and he wants people to remember her name and not her disability. Me? Well, I'm sure it doesn't surprise you that I like to learn and offer as much information as possible. 

So read on, but as you learn about the special needs Zoe Amanda has been diagnosed with, please think of her as a kid first and foremost. If you think that might be a struggle for you, then just skip this post and tomorrow's and pick back up with us on Thursday or Friday. 

Thanks.

~+~

I’ve started a baby registry (one on Target, and another at my obsession Amazon), not so much for gifts but rather to help us keep track of what we do and don’t have for Zoe Amanda and what we need/want/desire. It’s helped in an unexpected way:

It has helped me wrap my mind around the realities of becoming a mom to a child with special needs.

I think we registered for a little kid potty for Jocelyn. When I saw those this time around, I realized that I don’t know if Zoe Amanda will ever be potty trained or not.

I considered strollers as something we’d use for a short period with our two oldest, and I considered pricey strollers with high weight limits to be an unnecessary and somewhat impractical luxury. Now I’m looking at brands I would have scoffed at before, considering what stroller might work well as Zoe Amanda grows. We don’t know for sure that she’ll need a wheelchair, but – considering that’s a good possibility – a stroller that can work well for a longer period as a pre-wheelchair option is a wise investment. (Side note: Anyone have a used fancy schmancy one – with life left in it, of course – in need of a new home? If so, we’d love our home to be its next stop!)

When Robbie and Jocelyn were babies, I tried to gauge what type of shoes to get them in each size, guessing when they would need “pre-walker,” “toddler,” and “walker” shoes. Zoe Amanda might never walk. Or she might use a walker. Or the braces she might need could work better with some shoes than others.

For everything we know, we realize how much we still don’t know.

I’m not anxious or sad or upset by any of this. Most parents of kids with special needs have to set aside their old dreams and dream new ones for their child. For us, we found out about Zoe Amanda and her cerebral palsy at the same time. It’s not what defines her, but to us it’s always been one characteristic that she happens to have.

People with CP have higher odds of other conditions – like epilepsy and autism – so we may experience unexpected diagnoses in the future… but we could experience that with Robbie or Jocelyn too. Regardless of labels and disability and all that, we will have a sweet reminder every time we say her name. 

Zoe Amanda

Zoe means “life,” and Amanda means “worthy of love.” Her name explains who she is, why we were called to adopt her, and what God has taught us in His word about disability and orphans. Hers is a life worthy of love. Christ declared that when He lived the sinless life we couldn't, died on the cross we deserved, and defeated death by his resurrection. For me. And you. And Lee and Robbie and Jocelyn. And Zoe Amanda.

In her name's meaning, we’re merely affirming what He already declared to be true.

Zoe Amanda, we have no idea what God has in store for you, but we look forward to finding out.

many thanks to Heather for taking this shot at church on Sunday

and to her husband and youngest daughter for goofing off behind her to elicit the smiles on the kids' faces

P.S. - If you'd like to know you can support us during this process, here are a couple posts about that: {part 1: financial support} and {part 2: PRAYER!}. 

Thanks, y'all.

how you can support our adoption {part 2: PRAYER!}

Wow! I'm not sure where to start with this one. There are so many requests we could share, so I know this list won't be exhaustive, but here are some things we're praying for...

For our family

• We know all of our lives are already changing and will change in a big and beautiful way this summer. As we prepared, we're praying
• that our marriage will be strengthened through this
• that our children will understand God's love in new ways
• that Jocelyn - who doesn't usually handle transitions well - will adapt to getting a baby sister, starting kindergarten, and going to summer day camp for the first time, all in one summer
• that Robbie - who is a momma's boy and fills the role of resident cuddler in our house - will adjust well to no longer being the baby of the family
• that Zoe Amanda will be loved and cared for well in Taiwan until we can bring her home and that her transition - as everything about her life will change when she comes home - goes as smoothly as possible
• that all of us - in our immediate and extended families - will be changed for the better in all this

For the logistics of the adoption

• I'll share more later this week about the steps along the way, but here are the some of the key ways we're praying:
• that God would allow our paperwork to be complete and acceptable the first time we submit it
• that the Chinese translations of our documents will be accurate
• that our schedule would fall on the shorter end of the spectrum so Zoe Amanda can join our family and receive needed therapies and treatments as soon as possible (as a note of explanation: lots of steps in the court process in Taiwan have estimates of "2-8 weeks," so we're praying that each of those steps be closer to two weeks instead of eight)
• that breakdowns in communication will be rare and quickly resolved
• that we will remain focused on Christ instead of the sea of paperwork around us
• We're praying that God will provide for the money needed to adopt Zoe Amanda, and we're praying for God's help in trusting Him in this area. (I'll admit I had a bit of a meltdown today about the moola. During lunch. In public. With my poor husband sitting across from me and fielding the "is your wife insane?" glances from the waiter.)

For health and energy

• A lot is happening very quickly, which means we have a constant to-do list... and one that will become more challenging if an illness hits any of the four of us. We're praying for protection from sickness for all of us. 
• Y'all know that the last five years have included the diagnosis of a couple of chronic health conditions for me. While those are under control and treatment right now, the only persistent area of anxiety for me in all this has been a fear that something new - like cancer - would be diagnosed that would make us ineligible to adopt Zoe Amanda. I'm not a big worrier, so I've been caught by surprise by this anxiety. I'm clinging to prayer and the truths of Philippians 4:6-8. 
• Our kids - who used to be great sleepers - haven't consistently slept well in the past six months. We're praying that they will rest well (which will also mean that we can rest well)!

For home plans

• We're still putting the house on the market in a couple weeks. We'd love it if our home would sell quickly and a new home that is perfect for our growing family would become available at the same time so that we can sell and buy and move before Zoe comes home. 
• We're praying for endurance through the home-selling process, whatever the length may be. We know it can be long or short; it can be 100 showings or just one; it can have ups and downs or proceed smoothly. While we're praying for the latter in each of those examples, we're also praying that God will sustain us through whatever timeline He has for this process.

For Access Ministry, the special needs ministry we coordinate at our church

• We are just as passionate - if not more - about this area of ministry and will continue in our present roles, but we know there will be a period of time of at least a month that we'll have to step back from that when we're traveling and first have Zoe Amanda home. We're praying for wisdom in handling the logistics to make sure we can serve our family well and others can serve our Access families well during the initial transition period.

If you'd join us in praying for just one of these requests, we'd appreciate it. And please join us in praising God for the journey He has set us on!


(If you'd like to see part one of this post, here you go: "how you can support our adoption {part 1: financial support}. Later this week, I'll post part three about practical support we would appreciate, but I have a couple other posts scheduled between now and then. 

And if you came across this post without reading other recent ones, you might want to start a few posts back, with our adoption announcement post and our thankful post.)