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.

some things truly are a matter of life & death

This week a story about our family and other families who have adopted children with HIV will be published online at NBC News. In it, we're open about some of the positive and not so positive responses we've gotten about HIV from loved ones.

We didn't take our involvement in the story lightly. We continued to keep our typical safeguards in place, like not identifying which of our children is the one with HIV and not publicly identifying anyone who has responded unkindly to the diagnosis. And we prayed - man, did we pray! - in advance of the interview.

The primary reason we said yes: the contrast between our child and a little girl named Daphne. 

The stories started out similarly, but their endings are tragically different.

We found out about our newest three children, including the HIV diagnosis for one of them, and declared with our acceptance of their referral that a child's diagnosis doesn't preclude him or her from the love of a family. We waded through the reams of paperwork and the labor of fundraising. We finally arrived in Uganda, fought for medical care that had been denied until then, and spent six weeks working through the legal process to bring Patience, Philip, and Patricia home as our children. Here, they have flourished, and the one with HIV now has undetectable viral loads, meaning that HIV is being suppressed by the daily medication regimen and our child is now developing like any other child.

Good story, huh?

Meanwhile, another little girl in Uganda also had HIV. Her name is Daphne. It's not my place to share her full history, but she ended up in an orphanage with no one in country able or willing to adopt her, given how sick she was. Friends here in the Raleigh area stepped forward to adopt her. A couple weeks ago, Alison and I were all set to have coffee and chat about our experiences parenting a child with HIV, sharing anything I could to help prepare them for their newest darling. Two days before that coffee date, they received hard news: Daphne wasn't coming to the United States. Her change of residence was from Uganda to heaven instead. Her body was too weak, and she succumbed to HIV-related illnesses that ended her earthly life.

I'm going to be blunt here:
Our response to "the least of these" can be a matter of life and death.

When we care enough to do something, lives are saved.

Even when we care as much as Daphne's would-be parents do, sometimes it's too late.

When we do nothing, children die.

balloons being released a week ago at a celebration of Daphne's life

So, yes, we're being transparent with a national news outlet this week. It's not because we want to shame anyone who hasn't loved us well in this transition or because we like to see our names or faces or stories all over the place. No, certainly not.

It's because we aren't comfortable waiting for people to come around about HIV when children are dying. We aren't okay with children becoming orphans because we care more about our own status quo than we do about the poor access to medical diagnostics, care, and treatment in other countries that, if changed, would prevent orphans from being created by illnesses that wouldn't lead to death here. We can't stand quietly as we received the news that our children's father died last week, following their mother's death previously, because we know that stigma about HIV delayed their treatment until it was too late for it to help.

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

Because, after all, it is quite literally a matter of life and death.


(If you'll be at CAFO 2014 in Chicago at the beginning of May, please join me and the Project Hopeful team for Friday's "Parenting HIV/AIDS" session to learn how NOT scary it really is.)

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.

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.

you're our people. thank you.

Yesterday was a hard day.

If you're wondering why, read yesterday morning's post at The Works of God Displayed.
And then read my tweet from last night:

Annnnnnnnnnd there it is. Our first "you're not my real parents" moment. #adoption #brutiful
— Shannon Dingle (@dinglefest) April 17, 2014

Yep, brutal + beautiful = brutiful.

But?

It was also a good day.

Why's that?

Well, this happened.

Every day, I've been sharing an Upsee giveaway post from my friend Ellen at Love That Max, because each day's share = one more entry in the giveaway. The giveaway is still open for entries, so that's not how the picture above happened.

(Though if we do win one that way, I already know which friend of mine would be blessed by receiving it.)

But, speaking of the giveaway, I got all teary as I read the comments on the giveaway yesterday, as a dozen or so friends have entered on Zoe's behalf with comments like these:

Y'all rock.

Then yesterday morning, as I was in tears missing a sweet boy who didn't get to turn 8 this year, friends from college sent me a precious message asking if we would be open to their buying an Upsee for Zoe.

Be still, my heart.

In January, I wrote about my word for the year: receive. In that post, I confessed that I'm comfortable with giving but I find it hard to receive. But, as we parent six little ones with three special needs and trauma-filled baggage, we can't do it on our own.

We're not meant to.

We're created for community.

And our community? It is the richest.

Back in March, I wrote about a conference I was going to, a conference of "my people." And while those adoption mamas do understand me on a different level than some of you who haven't walked that road, I have to say this: you, if you're reading this and caring about our lives, you're our people too.

We love you.
We need you.
We're so blessed by you.

Some people have called us heroes, but really? You're our heroes.
We couldn't walk this road of faith without you.
Thank you.

It was still a hard day.

But it was a good day too.

Stay tuned to see our Zoe rocking her Upsee once it arrives!