disability & Christ: links from last week

Birmingham Presbyterian church reaches out to special needs families

“You don’t know what inclusion means to a special needs parent,” Leslie said. “Jamie runs into the church so happy every week. I can’t begin to tell how they helped us in such a short time.”

Why Special Needs Ministry Should Be MORE Than Just Accommodation

...just this past Sunday, a kind elder whom we’ve known only a few months, voluntarily sat next to my son during worship so that my husband could sing in the choir. She calmed him, showed interest in his Pokemon cards, and never once rolled her eyes or shamed him (or us) for his behavior. That, dear friends, is special needs ministry.

Engage Conference: Disability, Inclusion, and The Church (May 3, $10)

99 Balloons invites churches and individuals to join us on May 3 in Fayetteville, Arkansas, as we explore disability, inclusion and the church.

Ten Ways to Make Your Church Autism-Friendly

I work with leaders from the Church of England, and I wrote their national autism guidelines at the request of the Bishop of Oxford, the Right Reverend John Pritchard, who realized what gifts autistic people bring to God and community. Sometimes, complex gifts. Sometimes, simple ones. But the things that help autistic people in churches also help many others. Our research has found that in England congregation numbers rise four times faster when a church becomes autism friendly.

Volunteer at Joy Prom! (at my church, Providence Baptist Church, May 16)

This event is for people ages 16 and older with developmental and/or physical disabilities. It takes over 500 volunteers to make Joy Prom a success! Sign up online to serve.

some things truly are a matter of life and death

We are the parents of a child with HIV. For us, that means we have to stand firm to say NO! to stigma.  

equipping churches to support the special needs of adoptive & foster families

As more and more churches rightly exhort their members to consider adoption for children in need of families and foster parenting for those who need a soft place to land for a time, children's and youth ministries need to be prepared to lovingly support the families who step forward and welcome the children who join their families for a time or forever.

wearing my special needs mama badge like a snug pair of jeans 

Sometimes we think ministering to families affected by disability is about programs and volunteers and forms and logistics. Sometimes, it is. Most of the time, though, it's about coming alongside families as they fight to wear those jeans they never would have picked out for themselves, holding them up as they grow weary and steadying them as they run with perseverance the particular and peculiar race God has set before them.  

Hear Jacob's testimony and baptism story, starting at 3:07 in the video below. He has autism, but that's not what this is about. He has Jesus; that's the message here. (HT: Church4EveryChild.)


Jacob, Sam and Anna's Baptisms from Fox River Christian Church on Vimeo.

a girl and her gear

The littlest one is our family requires the biggest entourage of specialists and the largest collection of gear. I haven't written this post before now because I feel like it might sound like I'm saying, "Hey, here's all the crap we tote around regularly. Our lives are so hard. Pity us." And that couldn't be further from the truth.

We love Zoe, and her realities mean that, in order to love her well as her mom and dad, our lives involve the blessings of various contraptions used to support the girl we can't imagine life without. We often get questions, sometimes from potential adoptive parents who are deciding if cerebral palsy is a special needs they can handle, so here goes...

We have the typical non-mobile rugrat accessories - a sling, an Ergo, a double stroller, a single stroller, a Bumbo, a soft chair, a supportive high chair, and  so on.

Because of CP, we've added some more items to the collections. Case in point, her butterfly AFOs (that's "ankle foot orthotics") below are her third pair so far.

Then we added a loaner gait trainer to the mix, seen here with her old AFOs:

Then we graduated to her permanent one.

As you can see above, she's started developing some bad habits. As she walks around while leaning her chest forward and sticking her legs back, her brain is getting trained in all the wrong ways. She has the potential to be a lot more independent in time, but she won't get there if we let her form get sloppy now. So she'll still use the walker when our therapists or Lee or I are able to be positioning and supporting her to make sure her steps and posture are sound, but it's not going to be the solution for good mobility for her.

Enter a wheelchair.

Okay, so hers hasn't arrived. In fact, we haven't ordered it yet. 

But during a moment when I was wallowing a bit about that upcoming order, the toy set above appeared on Zulily, which I am addicted to anyway. Despite the toy maker's intent for this set to help play out a doll's short-term need for medical equipment, I wanted the chair. My obsession for multicultural toys includes more than just diversity in skin tone but also in other attributes, like ability.

She also has a hard brace, seen above, to open up her usually fisted fingers and cocked wrist, and we Macgyver things like the foam from hair curlers on the handle on a fork to allow her to hold it better.

The buggy above isn't ours, but after Liz and her little guy Graham let us borrow it for a while at the playground, we mentioned it to Gammy and Graddy (my mom and dad)... and, well, hers will arrive early this week. The waist strap plus the height of the plastic surrounding her and the good positioning of her feet mean that she can sit in it well. The height and kid-friendly look mean that she can interact well with other kids from it without seeming like a baby just because she can't walk.

Of course, hers will be pink and purple. Nothing else for a diva like her!

Along with all that gear comes our handicapped placards as well, for use when Zoe is in the vehicle and the gear required for her is too problematic to deal with when parked farther away. I realized it was time to get one on a rainy day at the gym as I juggled Zoe on one hip and her gait trainer on the other side with an ache in my ribs where I cracked them a month ago.

(It's a good thing I love the dog, because that kept me from killing him when he trips me while I was carrying Zoe, which is how the cracked ribs happened because I couldn't just drop our darling Asian and break my own fall.)

And this week we're awaiting word about a grant to cover this aparatus: a home version of the LiteGait system, which is a harness for kids like Zoe suspended over a small and extra slow treadmill surface to help her learn to walk in correct patterns. I'm very optimistic that the funds will be available for it, and this would be a huge help in training her brain and working her muscles toward more independent mobility.

We lucked out when Mobility Research's VP of Research and Development was available to demo the device in our home to make sure it would work with our girl. She was a little unsure at first.

And then...

Here's a picture that shows it in full (with a baby doll in the toy wheelchair in the background).

The leaning and poor posture in the walker? Nowhere to be seen in this!

Usually these devices are in PT offices, but Zoe is so petite and tires so quickly that she would benefit most from multiple short sessions each day, led my me or one of her therapists. (Currently, she has PT twice a week, OT once a week with a possible second session being added soon, and speech once a week with a second session to be added as soon as her therapist's schedule allows for it.) Going to a therapy site for as many mini-sessions as she would need with this would be a logistical impossibility, even if she were an only child, but we could fit them in at home. But since insurance considers the LiteGait to be a commercial medical device, companies don't cover it for home use.

This particular piece of equipment isn't going to make anyone's life easier right now because it will require a lot of work from all of us.

Cue a BIG yawn!

Good thing that our girl who tires easily also works hard!

I'll keep you posted on the grant, as we will either get a "yes" or find a Plan B to get her access to this device that could help her reach her full potential. And? Later this week you can expect Upsee pictures! It hasn't arrived here yet, but it's coming.

Which means I'm positively giddy.

Who knew how excited I could get about medical equipment!

Sure, my girl has a lot of gear, but we embrace it all. Loving the girl means loving the gear too.

Zoe's post-dessert despair

Ever feel sad when the dessert is all gone?

My girl feels your pain.

 

equipping churches to support the special needs of adoptive & foster families

Ever since I started looking for special needs ministry resources outside of our local church, Key Ministry has been there to encourage and equip me and connect me with others who could help our church serve our families well.

As I wrote this blog almost daily and ramped up my speaking at national conferences, the folks from Key Ministry cheered me on. Then, they were some of the first ministry friends to find out about our first adoption. As that adoption and our second one required me to step out of the ministry spotlight (which is a rather weird place anyway), they got it and cheered us on in the ministry God called us to in Taiwan and Uganda and, ultimately, behind the doors of our family home.

Now I'm privileged to join their ranks in a very part-time consultant role (because my life doesn't permit anything more than that right now!), serving:

1. to help churches troubleshoot various challenges to inclusive children's and youth ministry
2. to equip churches in supporting the special needs of adoptive and foster families

I'm particularly excited about the second objective. As more and more churches rightly exhort their members to consider adoption for children in need of families and foster parenting for those who need a soft place to land for a time, children's and youth ministries need to be prepared to lovingly support the families who step forward and welcome the children who join their families for a time or forever. 

Let me be the first to admit: It's not easy. 

But it's definitely worth it.

I can't fully express how excited I am that my friend Gillian Marchenko and I will be co-leading a session called "Making Churches a Place of Welcome for Children with Special Needs….and Their Families" at next month's CAFO Summit. I've been clamoring for a session like this for years, and God has equipped Gillian to address this topic as a mom of children with special needs (both by birth and adoption), as a minister's wife, and as the author of a wonderfully reflective memoir about the birth and parenting of their first daughter with Down syndrome. And I'm honored that she's asked me to come alongside her in addressing the topic.

Three other promising sessions are "Creating a Church Culture Where Foster and Adoptive Families Thrive," "How Your Church Can Equip and Support Adoptive & Foster Families," and "Is Your Church Ready? Successfully Communicating to your Children & Youth Ministries." In several years of reviewing adoption conference workshop offerings, these are some of the first sessions I've seen that uniquely focus on how to serve these families and the children well post-placement.

Previously, all the special needs sessions at adoption conferences have either (a) focused on pre-placement, addressing questions like "what is special needs adoption?" and "could my family handle adopting a child with [insert a diagnosis: HIV, Down syndrome, and so on]?" or (b) aimed at directly addressing families who have adopted children with special needs but not equipping church leaders to meet the ongoing needs these families face.

Those are worthy and necessary topics, but they're not enough.

The need is great, both for Christian families to open their homes to children in need and for the rest of the church to step forward with them in offering support and understanding their diverse needs.

If you'll be at CAFO, let me know! I'd love to connect.
(Register here if you'd like to come but aren't signed up!)

Whether you'll be there or not, would you comment to tell me ONE thing - a resource, a training, a passage of scripture, a program, a "how to," anything - that you'd like to see shared or developed to aid churches in supporting the special needs of adoptive and foster families? It would be a huge help in directing my priorities at Key Ministry.

Thank you!

*One note about churches and adoption: 

I am fully convinced - as is the team at Key Ministry - that adoption and fostering are not the only ways the church ought to respond to at-risk children. We are all for orphan prevention, through initiatives to preserve existing families and alleviate poverty and meet practical needs, and ministry to single mothers and widows. That said, we're intentionally honing in our focus on a specific area of need in inclusive family ministry (ministry to post-placement adoptive and foster families), and we're thankful that God is calling others to step forward in other ways. The only way the church can holistically address all the facets of orphan care is if we each are faithful to do what God has placed before us; no one person or organization can do it all.

How much does a special needs diagnosis matter at church?

This post was originally published on this blog in January 2012.


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 blogged about this topic 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 a few years ago with Tyler, who once 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.

At the time I originally wrote this post, the special needs community was reeling from the report that the proposed DSM-V criteria for autism spectrum disorders could exclude some who are currently classified, I'm paid attention so that I could be knowledgeable when the families I serve express concern about how this might impact their families.

However, I was never 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.