What do church leaders need to know about respite care for children and youth with disabilities?

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Seriously, I'd like to know your answer.

On Wednesday, I'll be speaking to a group of folks at a family ministry conference. One session is about the basics of special needs ministry (including starting and sustaining one), and the other session is about successful outreach events that serve the entire family, primarily focusing on respite care.

(Quick Webster moment: Respite care is kind of like a parent's night out or a mother's morning out event. I know most Christians can name a church in their area that offers one of those programs. However, this kind of event is designed to offer time away for caregivers of those with disabilities, usually - though not always - children.)

I know about articles like this one that liken the stress of a mothers with autism to combat soldiers. I know about studies like this one that show that family-focused care can make more of a difference than medical care for the individual child. (Granted, that one is about colic not disability, but the principle still applies.) I've read stories - like this one in which a mom describes stress so extreme that she "broke" and once hit her son (who has autism) a couple years ago - of heartache and exhaustion and feelings of hopelessness and depression and anger and more.

(You should read that last one. Really, you should.)

I love the list here sharing five realities for special needs parents: We're tired. Our brains are constantly busy. We're lonely. We know more about our child's condition than most doctors. We're fragile. (Thanks to Amy Fenton Lee to posting it on The Inclusive Church's Facebook page)

All of those tidbits offer great insight into why we ought to meet families affected by disability where they are, which is often a place of survival, and meet practical needs. But I'd love to know what YOU think about this topic.

What would you - as a church leader, a special needs parent, someone who cares about people with disabilities and their families, a volunteer at a respite event - tell the leaders I'll be addressing next week?


on being in over my head, loving our kids, and abiding in Christ #D62012

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I'm in over my head right now.

In a beautifully, wonderfully, grace-filled sort of way.

I get to be Zoe's mom.

Being her mom is freeing. I don't care what the growth or developmental norms are, because I know she's going to pave her own path, given the circumstances and brain injury that God ordained for her. She is growing and moving and doing so many things that specialists didn't think she would. 

I get to love our first two children, and see them blossom in ways that include compassion for classmates and soccer practices and museum visits and Chinese and Spanish lessons. You see, they too are paving their own paths, each in the direction where God is leading.

Jocelyn plans to be a wife and mom who serves as a missionary in another country and who also writes and illustrates children's books. She's planning to have three children, and she says at least one will be adopted, "but maybe not from Taiwan, because there are kids in other countries and in our country who need families."

Robbie doesn't plan ahead. He's my in-the-moment kid. Part of it is his age (3), and part of it is his personality. When he grows up, he says he's going to be a dinosaur. And a daddy. Naturally.

Our church's special needs ministry - called Access Ministry - is growing too. We have more volunteer needs than ever before, but God is providing for those through sweet, sweet folks. We have new families coming. We have the honor of serving and helping these families find places to serve.

I get to raise our sweet kids and lead in ministry with the man I love more than any other. It's precious to serve in parenting and the church and life with the one who gave me his heart and his last name. 

Next week, I'll travel to the D6 2012, the (in my humble opinion) best family discipleship conference around, to present two sessions on special needs ministry. If I can swing it (i.e. if a kind soul at a ticket desk is willing to switch my flight to come home earlier without charging me change fees that are as costly as my tickets were originally),  I'll come back before the conference ends so that I can see my big girl dance at her school's Hispanic Heritage Festival. 

And if not, I'll be there for the whole conference, getting sweet reminders of God's first calling for me, which is to abide in Him.

Yep, Abide is the theme for D6. It's also the theme for my life right now. 

Writing is happening, mostly in other places than this blog. Writing will return here, though probably not with the daily regularity that it used to be, at least not for a while. I can't offer a timeline, because I just don't know what it is right now.

I'm simply abiding in Him, and moving forward one step and one day at a time.
Abide in me, and I in you. As the branch cannot bear fruit by itself, unless it abides in the vine, neither can you, unless you abide in me. I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing. {John 15:4-5}
Yes, I'm in over my head. But I'm clinging to the vine, so it's a good place to be. 


lately

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Well, Zoe is just darling. We've had and/or scheduled more evals - audiology (done, all is well there) and physical/occupational therapy for her motor impairments (coming up on October 1). I will blog about her developmental eval a couple weeks ago, but for now here's the highlight of it:

She's ours. She's doing well. She's loved.

And she thinks Daddy's gruffy chin tickles more than anything else in the world.


She's also a legit American, y'all. The USCIS sent her Certificate of Citizenship this week. They even spelled her name right and everything. (I hear this is a small miracle.)


Nope, that's not a new Dinglefest dog in the picture below. That's Sadie, who we petsat for a while. We're not ready to be a two dog family, but Napoleon likes it when we pretend for a bit. He loved Sadie and so did we, but Harley is still his favorite girlfriend. (I must post a picture of them soon. Quite a comical pair, they are.)


Here's a close-up of Jocelyn's shirt. I bought it at the airport in Taiwan. (After I lose 10-15 pounds, I'll be able to fit in my matching one. I didn't plan for that to be my incentive, as I thought I was getting the right adult size. Taiwan, your sizes confuse me.)


All the pictures were for the First Day o' School 2012, Part 2. You see, Jocelyn goes to a public school during the week, but she also spends two hours each Saturday afternoon in Chinese language school.

Most kids might be bummed about the idea of school on Saturdays. This is what Jocelyn's reaction was.


We had been on a waitlist for Chinese school, due to some miscommunication. (We signed up in time, but our English and their Chinese muddled things up, as they thought we had just adopted Jocelyn from Taiwan and thus placed her in the native Chinese speakers class. When we realized the error, the non-native speakers class had a waitlist. Yep, Dinglefest Schoolin' 2012: Brought to You by The Waitlist.) I took those pictures right after she found out she was in.

Cool side-note: We first met with the Chinese language school folks a day before we knew Zoe existed. We weren't planning to adopt a child from a Chinese-speaking country then. Ain't it neat how God paved the way in advance for us?

Our girl loves different cultures and languages in a way I can't claim credit for. It's just something God infused into her little personality. Now, between the daily instruction in Spanish at her elementary school and the weekly Chinese school (including homework, which helps me learn along with her), she is loving this year. (Yeah, yeah, math and reading and all that is fun too. But languages? That's what she really gets excited about.)

(That, and soccer. Which starts again in a week or two.)

And the boy?


He's a ham. Who loves Spider-Man.


And has an infectious smile.


He might have used that smile to swindle me into buying this Spidey baseball cap at Target this morning.

PS - I now live on the side of town in which a Target trip is also a meet-up of friends. FYI, friends, I don't plan to dress any nicer for Saturday Target runs than I used to back when I lived on the other side of town from most folks. Not gonna wear makeup for Target either. Thankfully, none of my friends recoiled in horror this morning, so all is well.

the bitter and the sweet

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Zoe's our daughter. I don't think of her as a former orphan, though she is. We've settled into life with her, and it feels like it's been far more than eight weeks since we brought her home.

But.

Today has been bittersweet. Precious, but only made so by the difficult realities of adoption.

First, a bittersweet and wonderful word...
Mama.

She's been saying it occasionally, but we haven't been sure if it had meaning or not. Today, she was fussing on the floor with Jocelyn, and I scooped her up from behind. When she saw who it was who had her, our eyes locked and her mostly gummy grin let out a beautiful "Mama." 

This moment with each of my other two was just sweet. No bitter in sight. 

But the reality is that adoption only exists due to brokenness, be it poverty or death or sin or some other circumstance that won't exist in heaven and didn't exist in the Garden of Eden. In the absence of brokenness, Zoe wouldn't be ours. She would be saying "mama" to the one who gave birth to her. 

The sweetness, though, is in redemption. Just as God's redemption of me transformed me from a sinner to His child, the beauty of redemption in earthly adoption takes an orphan and makes her a loved daughter. 

A daughter whose Mama's heart fills with joy when she uses her first word to call me by name.

Second, a bittersweet and wonderful moment...
Lee went on a week-long business trip, returning today. Zoe has been a little cranky all week.

I thought it was teething, but she hasn't acted this way with other teeth. It could be that she has been carted around more, with school registration and carpools and a developmental evaluation. It could have been any of those realities. But I realized today that she might not know that Daddy - her favorite parent by far, which I love - was coming back.

With Jocelyn and Robbie, I could say, "We've always come back." And "Mommy and Daddy have always been here for you." And "Do you have any reason to doubt us?"

For Zoe, we haven't always been there. She's learning to trust us. It's different.

For Zoe, I don't think she knew that Daddy was coming back. She is more tentative with him this evening than she has been since our first days in Taiwan. In time, she'll trust him again, but we're not quite sure she does right now.

That's the bitter.

The sweet? It's this.