Wednesday, April 23, 2014

5 things I've learned in 7 years of special needs ministry
#SpnMin #kidmin #church #specialneeds #adoption

When we started in special needs ministry, our little family looked like this:


Now our family looks a lot different, and no one would call it "little" anymore.


Between those pictures, we have:

  • welcomed one child via birth and four via adoption.
  • collected a handful of diagnoses: cerebral palsy, HIV, epilepsy, FASD and rheumatoid arthritis.
  • tricked a whole bunch of folks into thinking I'm some sort of expert in the field of special needs ministry and adoption, as evidenced by a growing list of national speaking engagements and consulting agreements and freelance writing opportunities and a couple book proposal requests that I'll be all over once I get 15 minutes to myself, which I expect to happen sometime in 2016 once everyone is in school. 

(Y'all realize I'm just a goofy mom of a wild crew of kids who merely wants to see people of all abilities worshiping God together, right? Because I honestly wear other people's drool more naturally than I wear any expert badge. True story.)

In the years between those pictures, we've learned a few things, so without further ado...

5 things I've learned in 7 years of special needs ministry


1. The only time a one-size-fits-all ministry approach worked was on the cross.

On the cross, Jesus took on all our transgressions to defeat sin and death for us because we were all unable to help ourselves. Elsewhere, Jesus treated (and still treats) every person He met as an individual with immeasurable worth and distinctive needs. In all His interactions throughout scripture and among the testimonies of His people now, it's not about broad strokes of sameness. He was and is both personal and relational. 

What a wonderful model for us to follow as we minister to and with people of all abilities!
(Because it's not about programs; it's about people, amen?)

2. I'm not Jesus. Try as I might, I'm going to get it wrong.

The funny thing about being labeled as an "expert" is that our Sunday mornings look a lot like yours. My family often rolls in late, which I consider a win as long as all eight of us are each wearing two shoes, preferably ones meant to be paired together. I might have systems and spreadsheets and such, but working with families affected by disability means a whole lot of surprises and abandoned plans. 

And sometimes? I screw up. Badly. 

But...

3. God's grace is for all of us.

For my daughter with cerebral palsy, and for her two year old buddies who are learning that Zoe's walker isn't a toy or jungle gym for them. For my child with HIV, and for classmates' parents who were initially concerned about the safety of that kid in their children's Sunday school class. For my son with epilepsy, and for the teacher who messaged me right after his first seizure to assure me that she would learn whatever she needed to so that Robbie could be safe in her class. For the people who immediately and warmly welcome those with disabilities and for the ones who are scared or hesitant or just plain mean. For the churches that say "YES!" and the ones that say, "We don't have a place here for your family." 

For me. And for you.  

4. I'm tired of focusing on the negative stories. 

For me, at least, it's time to shift gears and highlight the churches who are loving well instead of pointing fingers at the ones who are learning. Because, really? We're all learning, and because saying, "You're doing it wrong," doesn't build up the church or change attitudes as much as "Let me show you what has worked for us."

5. There is still work to do, but there is much progress worth celebrating.

In seven years, I can't even begin to describe the difference I've seen in the church's response to people with disabilities, not just around the country but right here in Raleigh where I live and serve. That's exciting, y'all! I truly believe the tide is turning and the Spirit is opening hearts and doors so that the church might include all the parts of its body, as laid out in 1 Corinthians 12.

Yes, there's still more to do. But if there wasn't still work to be done, then we'd be chilling with our Savior in heaven. Because on this side of eternity, we'll never be done.

Isn't it wonderful that we have a great provider - GOD! - so it's not all on our shoulders?


How about you? What have you learned in this area of ministry?

Tuesday, April 22, 2014

In a church setting, how can you support a parent who could be in denial about their child's special needs?

(This post was first published on this blog on January 24, 2012.)

I was 25. My daughter was nine months old. I was constantly in pain, exhausted, and easily irritable, but I was convinced it would get better because I was just adjusting to being a mom. And my husband called me out on my denial and told me it was time to go to the doctor.

That's the short story of how my two chronic health conditions were diagnosed. What I tried to explain away as "being a new mom" turned out to be Hashimoto's thyroiditis and rheumatoid arthritis.

Why am I telling this story in a post about parents who are in denial about their child's special needs? Well, because we can learn from it.


My husband made careful observations before he said anything;
you need to observe the child on multiple days in as many settings as possible.

Lee was positioned well to have observed what was going on with me and acknowledge that something wasn't right. He realized that my issues were constantly occurring and not based on my circumstances.

Are you sure you haven't decided that a parent is in denial about special needs because your information is limited? Maybe you've only seen the child once or twice. Maybe the child has to wake up earlier on Sunday morning and is struggling with that. Maybe the personality or teaching style in that class isn't a good match to the child. Maybe the issue at hand is your assumption and not the child's special needs. Take time to figure that out.

If you still are seeing something different going on...


My husband needed to confront my denial because it was damaging my body and hurting our family;
you need to evaluate if that parent's denial even needs to be addressed.

Sometimes denial really hurts a family. Usually, though, it won't hurt to give them more time. If a child is in danger in any way, say something right away. If no danger is imminent, you probably want to wait and build the relationship more.

Every kid is different. In a church setting, an undiagnosed special need can make teaching more challenging, but is it really a huge problem? Sure, you do want to be honest with parents if there are any troublesome behaviors, but do you want parents to dread seeing you because they never hear anything but bad reports? It is often better to adjust your approach to reach a child's heart rather than trying to fix their behavior to fit your expectations for typical development.


My husband could confront my denial because we had a relationship; 
you can't expect to help parents through their denial without first establishing a relationship.

It's the whole "they don't care how much you know until they know how much you care" principle. I was willing to hear my husband out because he knows me and I know him. Because he knows me well, his concerns were meaningful to me.

If you don't know the parents well, you haven't established the trust required to even suggest that their child might need extra support in a church setting.


My husband was willing to see us through the outcomes of any diagnosis;
you need to be willing, prepared, and available to support your families through their outcomes.

When I received a diagnosis, my husband didn't leave. He didn't get me to that point and then bail on me. He was in it for the long haul, showing that he cared with his actions. You need to realize that the outcome could wrap everything up nicely... or it could reveal ongoing needs. If the needs are ongoing, will the church be there? Will you be willing to provide support and/or make sure others in your church are mobilized to provide that support?

In other words, if you aren't able to assist with a solution, then you're not the right person to say anything.


My husband recognized that my denial meant I was grieving my old life;
you need to let parents grieve too if they need to.

This means letting them move through the stages of grief on their own timetable, not yours. Pray that the Holy Spirit will convict them of the need to move on when His timing is right, and don't try to play God by enforcing your own timetable.

Be patient. Be willing to listen. And be there for them, even if and especially when they're struggling with guilt, despair, or denial.


My husband know he couldn't meet every need and was willing to let the experts do their jobs;
you need to be willing to help parents connect with other resources if necessary.

The church should work to include people with disabilities in the body of Christ. However, my role as special needs ministry coordinator doesn't mean that I have to offer speech therapy, medical consultations, and education consulting to every family. I'm not equipped or qualified for all of that.

Just as my husband was willing to concede that doctors would be more helpful to me in some areas than he could be, you need to realize that the church's primary mission isn't to fill every practical earthly need for our families.


My husband prayed and sought God's wisdom through every step of this process with me;
so should you.

Amen.

Monday, April 21, 2014

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

Let me start with an apology to my male readers: I have absolutely no idea if this post will leave you confused or if you'll relate or if you'll worry that my next topic will be about visiting the ObGyn.

(don't worry. it won't.)

But this week a friend has been on my mind, a friend who is just beginning to realize that she is now that special needs mama she never planned to be. As I prayed for her family and then kept finding my mind wandering back to them as I went about the rest of my day, an analogy came to mind.

Special needs parenting is kind of like a snug pair of jeans.

We all have that pair of jeans (at least, all of us ladies... guys, just trust me on this if you can't relate) that fits great after about an hour. Or maybe after one day of wearing them when we pull them on for the second day in a row. But when we first pull them on? The button is hard to close, the fabric squeezes too hard in all the wrong places, and it's almost a workout just to get them on.

For me, that's how it is with my special needs mama badge.

(As far as I know, there's no actual badge for us. But if one existed, I'd rock that bad boy.)

We have three children with special needs: cerebral palsy, epilepsy, and HIV. For two of those children, we had the luxury of never knowing our child without a diagnosis because we adopted them after that pivotal moment. We never had to reconcile our dreams for our children with the surprise of their diagnoses. Zoe, in our history with her, has always had cerebral palsy. Our hopes for her have always involved the knowledge of the brain injury she already had before we knew her.

Those pairs of jeans are often easier to slip into.


For Robbie, though, I'll never forget the moment when so much changed, the moment when I found him choking on his own vomit while seizing for more than 15 minutes until the paramedics drugged him to bring it to a stop. That was our night that separated before from after for us.

I fought hard to get into those jeans, and it took much longer for them to feel comfortable.


Some days, though, even the comfy jeans feel snug again. Maybe I just pulled them out of the dryer where they've shrunk a bit, or maybe they're tight because I turned to chips, salsa, and root beer floats to soothe the sadness over ordering our daughter's first wheelchair.

(Which I did last week, both the ordering of the wheelchair and the drowning my sorrows in sugar and Mexican food.)

Either way, there are days that catch me by surprise when I have to fight to get the jeans on again, even though they fit just fine the day before.

So to that special needs mama who is facing those jeans for the first time, I say this: None of us love the jeans, but all of us love the reason for them: the children whose diagnoses handed us our special needs mama badges. Someday, the jeans won't be so hard to slip into. Someday, you won't care if they make you stand out a bit. Someday, you'll be so accustomed to the daily routine that you'll forget that other moms don't fight their way in those jeans every day.

Some days, though, you'll have to fight to put them on.

And that's okay. There's grace a'plenty for all those somedays.

To the friends, church leaders, teachers, family members, and others who want to love that mama well, I say this: just because we wear the jeans well doesn't mean we didn't fight to put them on. We wear them because they're our jeans.

Some days, we make it look easy. Some days, it might be. Most days, it's just what we do.
So Joshua did as Moses told him, and fought with Amalek, while Moses, Aaron, and Hur went up to the top of the hill. Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. But Moses' hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun. And Joshua overwhelmed Amalek and his people with the sword.
(Exodus 17:10-13)
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.

I am so thankful for all the Aarons and Hurs who have held and steadied me as I don these jeans I never thought I'd wear.

So very thankful.


Friday, April 18, 2014

every story has two sides. but.

As I re-launch the blog, I'll be re-posting one or two old posts a week for the first month or so. These are posts that I find particularly relevant and needed, not only when I wrote them originally but also now. Today's post was originally published on January 27, 2012 (back when I only had two little ones and one day before I would find out about an orphaned baby girl with cerebral palsy in Taiwan who is now our youngest daughter).


Every story has two sides.

But.

I’ve heard enough first-hand stories from families with special needs about churches who have rejected them.

I’m not talking about stories like “well, they just weren’t sure what to do with us.”

No, I’m talking about conversations like the one I had with one of our moms after respite, when she, with tears in her eyes, told me, “We love the church. My dad is a pastor. But we don’t go to church anymore, because our last church asked us to leave.”

Please take a moment to process that before you move on. Take a moment to consider how you’d feel if you were asked to leave the church because of your eye color or skin tone or height or IQ or some other attribute you can’t control. This child wasn't aggressive or dangerous; they were asked to leave because the children's ministry leaders said his autism was too distracting.

If I were writing about a church that kicked out a family because their son was black, we’d be outraged. But sometimes when I share the stories I hear from the families we serve in Access, someone responds, “well, you can't really fault the church. They probably just didn’t know how to handle it.”

Maybe it’s because I’m dosed up on enough prednisone to work me into a bit more of a ranty state than usual (and to allow my asthmatic lungs to work), but let me tell you what I think of that sort of response: it’s baloney. When church leaders kick out kids who aren’t up to the general education expectations they are used to, they don’t need our excuses.

 They do need grace. And repentance. And yes, training. And prayer.

 When I see tweets like this one (related to this story)


three prayers come to mind:

Jesus, help this family. 

Jesus, let this church learn from this situation, even if the facts being reported aren’t completely accurate. 

Jesus, please come soon. 

 Amen.

Thursday, April 17, 2014

"Taking on" people with disabilities? A lesson from last week's DWTS


My big girls love dancing. With six little ones, I can tend toward focusing on the littler ones, particularly since they have some special needs that require a little more attention. So...

We have special Dancing With the Stars time on Tuesday nights. 

Yes, I know it airs on Mondays, but we watch it via Hulu Plus, which also allows me to check the interwebs on Tuesday so I know if I'll need to have fast-forward handy, like I did the first week to skip exposing my seven year old daughters to Jason Derulo's performance of Talk Dirty to Me.

{Catchy, yes. Appropriate, no.}

We fell behind last week, so this week found us finishing last week's show on Monday night.
If you're not a DWTS fan, which I haven't been before this season, let me fill you in on the disability element this time around: Amy Purdy is a double amputee, a bronze medalist in snowboarding in the 2014 Paralympic Winter Games in Sochi, an actress, a non-profit founder, and a reality TV star, including a stint on Amazing Grace and her role in this season's DWTS.

She's fantastic. She's open about her story and her amputations, including cracking jokes in Week 2 about the risk of her legs flying off during their swing dance and devoting her Week 3 dance to the way her father supported her through her bout with meningitis, including giving her a kidney as she recovered. I was a little worried, though.

When a person with a disability enters a competition full of people who are defined as "typical" by this world, one of two things tends to happen:

  1. the person is there as a filler for ratings/diversity/publicity with no intention of accommodating her in meaningful ways to allow her to compete (which, thankfully, has not happened), or
  2. the disability is presented so centrally that the person is secondary, either through explicit focus on the disability or implicit focus by constant discussion of how inspiring she is, bringing the focus to the disability, while the discussion about the other competitors is focused on their dancing, which is what the show is about. 

While the inspiration storyline has definitely been there, the judges have been focusing - especially last week and this week - on Amy's dancing skills.

But.

One comment last week from Erin Andrews made me cringe in a big way, though.

At about 7:45 in the video below, the host Erin asked Mark, Amy's partner, "What kind of pressure was this for you, taking her on?"



I know what she meant. I do. The pro dancer has to choreograph the dance and train the star to do it, and Mark has never done either for a dancer with two prosthetic legs. And I love Erin, dating back to the days when I hung out with her little sister at their house in our hometown of Brandon, Florida.

And?
I love Mark's answer, the way he brings it back to Amy's skills and the competition rather than her disability.

But we can all learn from this, because most of the time in the church, we don't mean to offend. Erin didn't mean to offend. What she did, though, was reduce Amy to an object or at least a lesser competitor. Her words would have been called out if she talked about the pressure of "taking her on" as a partner for any other star competing on the show. But when it's someone with a disability, is it any more acceptable to minimize their personhood?

Nope.

When you interact with people with disabilities at your church, do they feel like equal members in the body of Christ or like a service project you're "taking on" out of pity or obligation or something other than friendship? When you talk with special needs parents, are you thinking about meaningfully including their child or "taking her on" as another task on your to do list? When you consider families like mine in which four of our children were adopted, some with special needs, do you see children we love or diagnoses we took on?

(I sure hope you see the children we love, first and foremost!)

I'm thankful for my role as a special needs ministry leader and a special needs mama. It's not something I take on.

It's something I'm blessed to get to do.



Wednesday, April 16, 2014

three reasons why this blog has been quiet for the past two years

reason 1: i became a special needs mom

Back when I started this blog, I was a mom and a disability ministry leader and a former special ed teacher... but I had the luxury of choosing the special needs world. When you choose to enter that world, you can also choose to leave. It's more of a visit. Perhaps it's a long-term visit, but it's a visit nonetheless.

For families who live with significant, life-impacting disabilities, they don't just visit the special needs world. It's their permanent residence. 

When we adopted our youngest child, who has cerebral palsy, I became a special needs mom. The change from being a visitor to being a resident of special needs world made me lose my voice for a bit. As a visitor, I knew how I wrote, encouraged, prodded, and exhorted the church to throw open the door to people of all abilities. Something shifted with our Zoe's arrival, and I didn't know where I fit for a time.

Then the shift became more pronounced when our Robbie had his first seizure, ushering us into an unexpected diagnosis of epilepsy and fixing us firmly in special needs world.

I didn't feel like I fit any longer with the special needs ministry leaders whose lives weren't directly affected by disability, because now mine was. But I didn't feel like I fit with the other leaders, because I was about five minutes into the life that they had walked for months or years or decades or more. 

Instead of just sharing what God was doing in our lives, I thought I had to fit one of two molds. I was wrong, but my mistake held my tongue for a while.

reason 2: i was caught up with a different God-led adventure

My husband and I always planned to adopt someday. 

We thought someday would be around 2014ish. 

Someday turned out to be two special needs adoptions much sooner than planned, one child in 2012 and three more in 2013. Our family blog shares a lot more about those stories, but suffice it to say that God's plan was immeasurably better than the one we had.

But the time involved in His glorious plan meant less time spent writing here, a trade-off I'd gladly make all over again.

reason 3: i was grieving 

Christian died one year ago today. 

He was 7.

My two oldest children are 7 this year, and today I'm thinking of them and thinking of him. I'd like to say something mature about this being his heaven-iversary or something that reiterates the post I shared about Christian one year ago. But you know what? I'm going to say something honest instead: I'm mad that I got to see my girls turn 7 but I didn't get to see Christian turn 8. 

Grief is hard.

Somehow, I miss Christian more now than I did last year. 

I miss him every time I do the laundry, washing shirts that used to be his. I miss him every time I help my boys pick out clothes, because they often wear outfits I remember on him. His mama - a dear friend - blessed us with the gift of the clothes I wish her son was wearing instead of mine. 

Sometimes grief just takes the words away for a time. 


Those are three reasons this blog was quiet for a time...

...but they are also three reasons why this blog is back, with 30 posts already scheduled and more to come. I'm even more passionate about special needs ministry than I was when I last posted regularly, because:
  1. I'm a special needs mom now, so it's more personal.
  2. Our adoptions have made us much more familiar with the special needs of foster and adoptive families in churches around this country.
  3. Special needs ministry involves grief sometimes. And we all need each other to walk through that and other hard stuff.
If you're reading this, then you didn't give up on me in the quiet times. Thank you for that.

And thank you for joining me in a conversation worth having.