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

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. Sometimes, 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 might 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.

"After-birth abortion" should be allowed because some disabilities aren't diagnosed prior to birth?

I have a head cold, which would usually mean I'd take the day off from blogging. But a journal article that hit the web last Thursday was brought to my attention yesterday by a friend and colleague, and it demands a response.

The journal article: After-birth abortion: why should the baby live? And this isn't just any publication; it was found in the Journal of Medical Ethics. The juxtaposition of the idea of ethics with what's put forth in this journal is ironic at best.

Here are some quotes from the article itself. First the abstract (emphasis mine):
Abortion is largely accepted even for reasons that do not have anything to do with the fetus' health. By showing that (1) both fetuses and newborns do not have the same moral status as actual persons, (2) the fact that both are potential persons is morally irrelevant and (3) adoption is not always in the best interest of actual people, the authors argue that what we call ‘after-birth abortion’ (killing a newborn) should be permissible in all the cases where abortion is, including cases where the newborn is not disabled.
Later (emphasis mine once again),
An examination of 18 European registries reveals that between 2005 and 2009 only the 64% of Down's syndrome cases were diagnosed through prenatal testing.2 This percentage indicates that, considering only the European areas under examination, about 1700 infants were born with Down's syndrome without parents being aware of it before birth. Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.
The authors actually use a pro-life argument to present their anti-life stance: "The newborn and the fetus are morally equivalent," ergo if it is permissible to end the life progression of a fetus through abortion, it should be permissible to end the life progression of a newborn through "after-birth abortion." They prefer that term over (a) "infanticide" because the newborn is not yet a person by their definition or (b) "euthanasia" because the reasons for after-birth abortion don't have to be compassionate to the newborn. They write (once again, emphasis mine),
my son moments after he was born in 2007
Both a fetus and a newborn certainly are human beings and potential persons, but neither is a ‘person’ in the sense of ‘subject of a moral right to life’. We take ‘person’ to mean an individual who is capable of attributing to her own existence some (at least) basic value such that being deprived of this existence represents a loss to her. This means that many non-human animals and mentally retarded human individuals are persons, but that all the individuals who are not in the condition of attributing any value to their own existence are not persons. Merely being human is not in itself a reason for ascribing someone a right to life.
In their conclusion, they leave the door open for just about any reason to permit after-birth abortion: "if a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden on someone, then people should be given the chance of not being forced to do something they cannot afford."

As Christians, we cannot afford to be silent. As I've written before, if we value life, we don't get to choose which lives we value.

If I'm honest, I'm more offended by this news than I have been any of the other times I've written on this topic, including here and here and here. Why? Because it's closer to home. As a family, we are doing the exact opposite of the "ethical" argument given here as we adopt a sweet girl we already consider our own, a precious baby who happens to have a disability that would render her unworthy of life by these definitions. She was abandoned by her mother and rejected by other prospective adoptive families. When we were contacted about her need, our gut reaction was to say no as well, but now we are ecstatic to be bringing her home sometime this summer because God through prayer changed our hearts and made it clear that Zoe Amanda is part of our family.

May God change hearts of those who agree with the authors of this article and open the eyes of His people that we would not remain silent to atrocious arguments such as these.

so how did this whole crazy adoption get started? (part 2)

I ended yesterday's post - the first part to this story - with a message I sent our friend, asking for more information about Zoe Amanda. Here's part two...

That was January 30. We were sent more information later that day, along with her picture. I forwarded the email along to Lee, with the note below (minus the financial and logistical portions that I'm not willing to share on the blog):
Lee, you know me. You know that it doesn't take much to tug my heart strings, but God also gave you to me as my perfect husband to protect me from my desire to help others at the expense to myself. I was honest this weekend when I told you that I wanted us to pray about it and that I wasn't trying to steer you either way on it. I was honest when I said that I wasn't thinking we needed to do this but rather that we needed to pray about it.

And I need to be honest now: I just saw her picture and learned more about her. And I want to move heaven and earth to bring her home. [...] And I don't know if we can logistically make it happen. I just know that God says we are called to care for orphans in His name, and I know she needs a family, and I know we want to adopt, and I know that I'm willing to abandon speaking engagements and doctoral studies if that's what it'll take to give her a family.

But I also know that God gave me you as the perfect leader for our family and that I trust you and Him. We have to decide fast if we'll pursue this, because of the timing. [...]

Please know that I love you, and I'll love you no more or less if you and I don't see eye to eye on this and I will follow and respect you no matter what. I love you, and I'd love to talk to you more about this tonight.   
We didn't get to talk that night. I can't remember why, but it was probably because we were all recovering from colds.

On the 31st, with Lee's permission, I asked my Bible study group to pray about this. That evening, prior to a special needs ministry leadership meeting, I texted one of our pastors and asked him and his wife to pray. At the meeting - once again, after asking Lee first - I shared the need with our team and asked them to pray for her without mentioning that we were considering being her family; a couple of them know us well enough to call us on it, and we 'fessed up that we were praying about it. Lee and I had driven separately that night because I had physical therapy for my knee right before the meeting, so we sat in my car and discussed everything before us.

The next morning, Lee asked me to find out everything I could about her, about the process, and about the children's home where she was. I began to do that. And we each told our parents that night about what we were considering.

The next day, I set up a phone conversation with the US-based adoption coordinator, and Lee and I decided on a list of question to ask and answers we would need to hear in that conversation to feel comfortable moving forward. I asked every question. I got every answer. Later that night, less than a week after we found out about her, we realized that we no longer felt like we were praying for some girl on the other side of the world.

We realized we were praying for our daughter.

We contacted the adoption coordinator to say yes. I called a friend from church who has a son with cerebral palsy and, after leaving an only halfway lucid message on her voicemail, had an encouraging conversation when she returned my call. I called a few more friends. We decided on a name. We told friends at church on Sunday. We formally accepted the referral Sunday night. We shared the news with our immediate families. And then we posted the news on the blog that Tuesday, holding off long enough for me to be able to share the news with my Bible study group in person.

And here we are now. On a wild and crazy and unexpected ride that is blessing us all beyond measure.

so how did this whole crazy adoption get started? (part 1)

We always planned to adopt. Eventually.

Our first plans were for domestic adoption of an older child or sibling group, with or without special needs.

As we learned more about orphans with disabilities, though, we realized that the likelihood of having a family - even a foster family - for a child with special needs was slim in many other countries. And the story of Kirill pushed us over the edge to consider international adoption.

In May 2011, we put our plans out there on the interwebs, stating that it would be a few years yet before we adopted. In that post, I wrote these words:
After a lot of prayer and research and prayer and conversations and prayer, we're willing to share where we stand in our plans right now. No guarantees that it won’t change, though, because God does his thing (the best thing!) in his time. However, I don’t think it’s unwise to share our plans, just as others aren’t shy about saying “ideally we want two kids” (or one kid or five kids or no kids). We trust that God is sovereign, and we'll be content whether or not his plans are the same as ours.
On January 21, 2012, I blogged that "we decided that we would move toward selling and wait to begin the adoption process until we're in a new home." (In case you're wondering, the house isn't on the market yet, but it will be soon.)

In that post, I also asked, "pray for us as we research a tough topic related to our adoption plans. I wish I could share more than that cryptic comment, but I can't yet, except to say that God has drawn us to consider something we hadn't considered before and that we need to be bathed in prayer." Some friends have asked if we were talking about Zoe Amanda then. The answer? No. We didn't know Zoe Amanda existed then. I don't mind sharing now that what we were considering was adding HIV-positive to the list of special needs we'd be open to in adoption. (By the way, we decided we would be open to that. Here's a link explaining why.)

On January 28, 2012, an old friend from Bible study sent me this Facebook message which began,
You had mentioned a while ago that you might be thinking about adopting a child with special needs...I know of a 3 month old baby girl who is up for adoption in Taiwan with a brain injury that will most likely result in some form of CP. I have no idea if this is something you're even thinking about, but I can give you more info if you are.
In my response, I said I'd talk to Lee about it. In my recollection of the message, I thought I agreed to pray about it, but I just checked - I didn't. Not then. Honestly, I didn't plan to. I planned to talk to Lee, agree with him that the timing wasn't write, and ask this friend how I could spread the word. In my message to her, I wrote out the reasons that it wouldn't make sense and ended with a lie: "I'm definitely not saying no, just sharing with you where we stand."

It was a lie because I was telling her no. I just was planning to do it in stages.

The next day - January 29 - Jocelyn turned 5. As we celebrated with friends, I mentioned this little girl to them dismissively, saying, "it just wouldn't make sense for us to adopt her."

Lee and I talked later that night. We agreed that the answer was probably no. But we also realized that this lined up with the passions God had given us for adoption and special needs, so we agreed that we should pray about it.

I contacted that friend again, asked for a little more information, and added at the end of the message, "Please pray for us, that God will make it clear how He plans for us to help her - be it through my blog or through welcoming her into our family - and that we would have the confidence based in Him to be obedient if He is calling us to abandon our plans and pursue her adoption."


~+~
And part two will be coming in the morning...

disability ministry weekly round-up {2-27-12}

Hi, y'all! This week the blog will be picking back up, as all our adoption paperwork will be out of our hands and on its way to Atlanta and then Taiwan. Thanks for hanging in there with the quietness over here while we've ironed out those details!

Your Reactions to Autism: What Helps and What Doesn't: "...yes, sometimes an offer of help or of understanding or of just getting it makes all the difference in the world."

Love, marriage, and special needs: The clearest article I've read explaining the stresses on marriage when parents have a child with special needs. And I appreciate the acknowledgment that "new research is debunking the myth that relationships for parents of children with disabilities are statistically doomed."

It turns out 'we're all a bit broken': "Basically, the ‘average’ person has something wrong in their genetic makeup."

Unqualified: "The reality is potential volunteers don’t need the right qualifications; they need God’s calling! Where is God calling you to serve?"

Let's Play... Inclusive Friendship: "As more and more children with disabilities are included in our schools, communities and churches, there are even greater opportunities to celebrate one another’s differences. For a child, friendships can be one of the most rewarding aspects of their lives."

Someone who's been there: Moms of special-needs children find help from a sympathetic source - other moms: "Though she was devastated when her 3-year-old son was diagnosed with autism, what followed was almost worse — she felt abandoned by family members and her church."

Wheelchairs making a difference: "Before working with her, I was like a lot of people and almost scared of people with disabilities, because I didn't know what to say and do," George said. "She opened up my eyes to people with disabilities."

In Case of the Blurts: "Children learn to blurt out what's on their minds. Sometimes they learn to do so because we teach it, and sometimes they learn it because we fail to teach them how not to blurt. If you know why it happens, you can better decide how to respond."

Your Mother Would Be Ashamed If...: "I know there are some parents who act like the world revolves around their children. They totally ignore the distraction their baby makes in the middle of church, a restaurant or a professional setting. But most parents are doing their best to manage the situation."

And finally, if you're interested, some links to my personal blog with adoption updates: