watch out: adopting a child with special needs might impact your other children.

Like our firstborn, who wrote the sermon notes below yesterday, out of concern for one sister who was home sick with me and another sister who was in the nursery. Patu has asthma, we discovered yesterday, and Zoe has cerebral palsy, which we knew about before we ever saw her face.

About the one originally from Uganda and the other born in Taiwan, our all-America from-my-womb girl wrote:

In case you didn't catch all of that,

"God and Jesus Christ, can you heal my sister Patricia (who was home sick yesterday) and help my sister Zoe walk, talk, and use her right hand because of the boo boos on her brain."

And a month or two ago, this hung in the lobby of the school, as our girl's award winning essay in response to the prompt, "If I had $100, I would..."

Yes, I'd say our adoptions have impacted our first born girl, wouldn't you say?

The Power of One {a guest post by Bill Gaventa}

This post was originally published on this blog in February 2012. Bill Gaventa, M.Div. offered these words as a guest post, drawing from his experience as a leader in the inclusion of people with disabilities in faith communities and an Associate Professor in Pediatrics and the coordinator of Community and Congregational Supports for The Elizabeth M. Boggs Center on Developmental Disabilities at the UMDNJ-Robert Wood Johnson Medical School. I'm thankful that he allowed me to share his words in this guest post.


Over the years of my ministry, I have heard stories of people with disabilities and/or their families being unable to find a welcoming congregation. That also has included staff working in group homes or providing other forms of support to help assist adults in taking part in community and congregational life.

But early in November, 2010, at a Saturday conference sponsored by the Lancaster Christian Council on Disability, I heard two parents, now fully included in congregations, tell their stories of being asked to leave previous congregations because of their child. One was a parent of a son with a mental illness; the other’s daughter is on the Autism Spectrum.

The first family had been asked to leave 7 congregations, the latter, 13. I was stunned.

A congregation may not feel that it is equipped to deal with a child with intense behavioral issues or may think, this is just one family. But it is not just one person or family. When a child is asked to leave, the family does as well, and word ripples about that congregation to other relatives, extended families, other families of children with disabilities. When an adult is not welcomed or asked to leave, word also ripples, not just to families but to young staff in those agencies who may be struggling with their own faith, and end up being further disillusioned.

It is evangelism in reverse, sending people of all kinds into the ranks of what some Christians call the “unchurched.”

The opposite is also true.

When a congregation welcomes a child, their family, or an adult with support staff (many of whom may not have ever been in a church like yours) and really helps them feel included, it not only is good for those individuals and your church, but it is also a witness. The word gets out. Through family networks, to others in a support agency, and to extended family. That is why some congregations are now citing their development of inclusive ministries as the primary reason for their church growth, because intentional and radical welcome and inclusion often extends to many others as well.

If there are issues or problems, then simply deal with them. First, ask the family or staff what they need, and how you can best support them and their child or person they are accompanying. Find congregational members who may be professionals to help figure out the supports needed. Connect with school teachers or agency staff to help you. Figure out ways to address behavioral or other issues that give the individual a chance to learn your rituals and routines.

After all, those individuals and families are not the only individuals or families that may have posed challenges for a congregation. If we asked everyone who posed a challenge at some point in their life to leave, our sanctuaries would be empty and our light dark. The amazing fact about the two families in Lancaster was the faith of the individuals and families who kept searching and hoping, in spite of the lack of faith and love demonstrated by the rejecting congregations.

Start with the one.

If you have 99 in a congregation to help you figure it out, then the shepherd has lots of help, and your congregation has the possibility of a journey that will benefit everyone.

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.