Friday, July 15, 2011

Come on Over!


is growing in the shade of a new tree.
Please come on over and make yourself at home!

http://daysofwonderandgrace.wordpress.com/

Thursday, July 14, 2011

Environment Helps the Pendulum Swing

This is our first summer with Hope's diagnoses in our back pocket. When last fall we decided to pursue an evaluation based on our knowledge that Hope had been prenatally exposed to alcohol, we were at a desperate moment in the swing of the pendulum. After living with her for five years, I guessed that if we could just grit our teeth and manage to get through that rough patch triggered by our trip to Korea, her pendulum would swing back.

I ought to stop there and observe: Great Mercy. FASD can be unremittingly hard for some kids and families. But Hope is not as severely affected as some exposed kids are. And God saw fit to re-direct our parenting from "this is a typical child who will not" to "this is an atypical child who cannot" a full three years before her diagnosis confirmed why she could not.

As we've become savvier in ways to support Hope, we've found that at this stage in her life, the effects of her PAE (prenatal exposure to alcohol) are not incessantly difficult. Rather, there's a tick-tock of better-worse to her behaviors.

One powerful thing that helps swing the pendulum toward "tick" (easier to live with) is environment. On a very basic level, it is the fit (or lack of fit) between a behavior and the environment that determines whether it is appropriate (acceptable) or not. It is perfectly appropriate to fall asleep in bed at night. But it is dysfunctional to fall asleep at the wheel on the highway during the day. Running, shrieking games of tag are welcome in the back yard or at the park, but not in the living room while daddy is working downstairs.

At six years old, Hope's ADHD is perfectly at home at summer day camp, so much so that even unmedicated, it was a non-issue. Every single child in her group was distracted by the tiny baby frogs on the path to art class and the counselors were not governed by watches. She was far from the only one who picked up a stick to drag along the ground in a sensory fix. Every activity was new and interesting and the transition between each was a good ten minute hike through the woods. Beyond trekking from class to class, there was lots of physical activity: dance and drumming; tae kwon do; swimming. Hope even slept better than usual because she was physically exhausted.

Unfortunately, I can't run our home school quite like a summer camp --which may be a good thing. Life doesn't operate like a day camp either. But I understand a little better why, for now, home is such a good school environment for Hope. I quickly figured out last fall that calling a 15-20 minute outdoor recess --I guess we might  call it large muscle sensory activity --was a simple way to sharpen her attention for a subject that requires some focus, like math. I don't care if she starts math at the table and finishes it on the floor.

Our experiences at summer camp have given me pause to reflect. I'm not one of those who home schools because I love it. I do it because this is a learning environment well-suited to Hope's needs. I suppose it is not unlike my friends who cook GFCF. It isn't because it easier or less expensive or because everyone else is doing it. It is because it is what their kids need.

And now if you'll excuse me, a stack of books and laminate are calling out the librarian in me. One more summer camp to go. Then in a few weeks, school begins.

Tuesday, July 12, 2011

Overheard



Mercy: "Mom, were you born in the nineteen hundreds?"

Me: "Yes, I was."

Mercy: "Wow."

Me: "Why 'Wow'?"

Mercy: "Well, you know. Back then they didn't say, 'Pass the beef'' or 'Pass the chicken.'"

Me: "What did they say?"

Mercy: [Looking embarrassed] "They said, 'Pass the hamburger.' 'Pass the hot dog.'"

Me: "What else did they say in the nineteen hundreds?"

Mercy: "I don't know. But they did things."

Me: "Did things?"

Mercy: "Yes. Like they wiped their mouths."

Me: "They wiped their mouths?"

Mercy: "With a napkin. Before they drank anything."

Me: "Really?"

Mercy: "They were very clean back then."

Me: "Did they do anything else?"

Mercy: "No."

Me: "This is fascinating. Where did you learn about the nineteen hundreds?"

Mercy: "From E. [neighbor girl, age 8]"

Me: "Where did E. learn it?"

Mercy: "She went to AG School."

Me: "You mean like AG dolls?"

Mercy: "Yes. It was like a camp."

Me: "Oh. Like nineteen hundreds culture camp..."

Mercy: "Mm hm. We went to Camp Choson and E. went to AG camp."

Me: "Does E. have an AG doll?"

Mercy: "Yep. Her doll was born in the nineteen hundreds. That was a long time ago."

Me: "How do you know it was a long time ago?"

Mercy: "Because everyone I know is from the two thousands."


Photo credit: Faith

Monday, July 11, 2011

On God's Account

The human condition is what it is: fallen. All of us make stupid comments in ignorance, even those of us with special needs kids, because we cannot possibly know what it true about every human difference. Beyond that, we cannot keep up with the ever-shifting current PC. And beyond that, we cannot instantly grasp what another most needs to hear. 

I am not excusing the ways we hurt each other. I won’t stop wishing we could all do better.  And I won’t stop praying that God will help me do better.
*****
In Christian culture, our conception of parenting is wrapped around the idea that good parenting results in good kids.  Children who behave righteously must be the product of righteous parenting by righteous parents. Ergo, the children of a man who aspires to be an elder must be believers and not open to charges of debauchery or insubordination; the father of such children is above reproach. (Titus 1:6)
Ouch. 
Early in Jesus ministry on earth, his newly-called disciples faced similar judgments. The majority culture equated external evidence of Old Testament law-keeping with righteousness. Matthew 4:23 tells us that Jesus walked into those bastions of righteousness, the synagogues, “teaching…and proclaiming the gospel of the kingdom and healing every affliction and disease among the people.” (Even the unclean and even on Sabbath.)
Jesus' notariety spread throughout the region and large crowds began following him. He responded by calling his followers close to him, sitting them down, and proactively explaining the topsy-turvy, counter-cultural gospel of the Kingdom of God.

Jesus said: Those who follow me will hunger and thirst for righteousness. They will be blessed with mercy, insight, and the ability to make peace. Yet they will feel beaten down. They will mourn. They will have to meet insults with meekness because they will be persecuted for righteousness’ sake. They will be reviled and slandered on My account. (Matthew 5:3-11)
*****

It would be easy to protest: Stop right there. Hold on. We’re not talking about being misunderstood, disbelieved, discredited for God’s sake. No one has given us an eternity-effecting ultimatum like, "Disavow Jesus or we'll crucify you upside down!" so there is no need to hyper-spiritualize this. We’re simply talking about the injustice of being persecuted in the public arena (most painfully, at church) for parenting perplexing children.
But who made those children? Who permitted their brains to develop atypically? Who placed them in families? Who gives parents mercy sufficient to each day’s troubles? Is it not a righteous thing (creditable only to God) when we parents are found clinging to Him, standing firm day after day when everything human in us wants to run away?
Jesus said that following God’s call on our life will be counter-cultural. Feeling misunderstood and reviled is normal in this place. If we find ourselves persecuted while following God’s leading, we can be sure the sign-post on this path reads, “Blessed.”
God knew that people would misunderstand those who took up his counter-cultural standard (a cross), including the call to adopt and to raise children with disabilities like FASD, early trauma, and mental illness. 
That's why Jesus told his disciples: Never mind. Forget what people say and do in ignorance of my work in this world. Listen to what I tell you: You are blessed. The Kingdom of Heaven is yours. You will receive comfort and mercy and be satisfied. You are a child of God. You will  inherit the earth.  Rejoice and be glad for your reward will be great in heaven. (Matthew 5:3-11a)

Then Jesus admonished his disciples to consider people like the prophets (v. 11b), who took their cues from God, not from culture.  They were persecuted, too. Just like Jesus.

"Therefore, since we are surrounded by so great a cloud of witnesses [the faithful in Hebrews 11], let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself so that you may not grow weary or fainthearted." Hebrews 12:1-3.

That's the sermon I have been preaching to my heart. Especially when I feel shamed and judged and weary.

*****

As for the question: "What can I say that will help and not hurt?"

If we have time for conversation, “How can I pray for you?” or, “Tell me about life in your family,” are welcome.

But even if time is short, you can deflect your attention (and ours) away from the present moment and upward to the Truth. Something like, “God is amazing, isn’t he?” is always appropriate. If it is a hard moment, God is amazing for sustaining us through it. And if it is a good moment, God is amazing for giving it to us because we are sinners who deserve much worse.

It is not about us. It is all on God’s account.

Saturday, July 9, 2011

Kamsahamnida!


One last photo of the girls, their teachers, and a few friends from Camp Choson at their last performance at today's Dragon Festival in St. Paul before they head home to Korea.

Kamsahamnida to our teachers from the Korean Traditional Music Association for coming so far and teaching us so much!

Friday, July 8, 2011

A Few Special Memories

I still owe you a nice, long picture-filled post about Camp Choson and because I volunteered to coordinate outreach to prospective families, you can count on reading one!

But for tonight, the evening of the last day of camp this year, I want to show you just a few reasons why this week is a highlight of our year.


This is Joy with our friend Jin Hee. Jin Hee loves Joy and easily calls her by her birth name, Hee Kyeong, because that was also Jin Hee's birth name. Jin Hee emigrated to the United States from Busan several decades ago and now teaches Korean language and culture to the 4th-6th graders at Camp Choson every year. She has been Faith's teacher for three years now. Yet despite the fact that Jin Hee lives just a few miles from our house, I would never have met her if not for Camp Choson.




This is Hope dressed for and performing a Puppet Dance taught to her by Mrs. Won, Mi Ja (who is giving her a hug in the bottom picture). Mrs. Won travelled to American to teach at Camp Choson with eleven other professionals who work for the Korean Traditional Music Association. Mrs. Won is recognized as such a skilled teacher that her job in Korea is to teach other teachers how to teach traditional dance to children. Yet she gave a week of her summer to come to America and teach Korean children adopted abroad the traditional dances and songs of their homeland.


Faith is a typical 11 year old and after a week with almost no gaming or TV time (personal electronics are banned at camp), I'd think it reasonable if the first thing she did when she got home was check email and pickup her DSI. But, no. After this, her second year of learning drumming from Korean professionals and her second trip to Korea where she again saw real Samulnori performances, after dinner she got out her Buk to accompany Mercy on a small hand drum Mercy made in art class at camp.


Faith performed on the Buk in this afternoon's performance. But she told me she also had memorized the part played by the Janggu (another drum, shaped like an hour glass) and showed us by collecting another stick and playing her Buk like a Janggu. Tomorrow said she would get out our Kkwaenggwari (a small hand-held gong) and teach me the gong part so I could accompany her. On my next trips I will have to bring home a Janggu and a Jing (a large gong); with four children we can have our own little Samulnori troupe.

Genetics, Epigenetics and FASD, Part II

Part II: Epigenetics

Keeping us on our toes, genetics is not the only level at which exposure to alcohol may harm people. Scientist now recognize the significance of epigentics in influencing the the ways genes are and are not expressed.

The difference between genetics and epigetics is often explained using the analogy of a computer. If a human was a computer, it is said that genes would represent our hardware and epigenetics, the software that controls how the hardware is used.

This means that contrary to what some people understood decades ago when scientists first began studying genes, DNA is not destiny.

A person may carry a genetic mutation that is never expressed in his body. Or he may have traits that are determined not by a genetic mutation he acquired (say, as the result of prenatal exposure to alcohol), but by the dis-inhibition in his body of a genetic mutation that occurred generations earlier. Epigenetics has a identified a mind-boggling array of non-genetic factors like nutrition that effect the suppression and expression of genes.

What does that mean for what we understand about FASD? This 2009 article in the journal Biology of Reproduction summarized: "One of the main implications of an epigenetic perspective is that the FASD spectrum is not limited to clinical defects arising from in utero ethanol exposure, suggesting that the concept of a fetal alcohol spectrum should be expanded to include preconceptional effects..." which, the article explains, means the consumption of alcohol by the birth mother --or the birth father --even before the child is conceived may harm a child later born to them.

The article concludes: "Finally, an epigenetic perspective suggests that alcohol exposure outside of the organogenic period (e.g., during preimplantation or prior to conception) might have teratogenic consequences for the CNS [Central Nervous System]. Indeed, the association of paternal alcohol consumption with behavioral and cognitive abnormalities in offspring in some animal and human studies... supports this view. Because such cases are unlikely to receive a diagnosis within the FASD spectrum... this raises the possibility that transgenerational responses to alcohol might account for a significant proportion of idiopathic neurodevelopmental disorders (e.g., idiopathic autism) in humans."

Conclusions like these are not simply outlying findings in a wider body of research. Michelle Ramsay summarized in this April 28, 2010 article in Genome Medicine surveying the field: "A body of knowledge has accumulated to support the role of environmentally induced epigenetic remodeling during gametogenesis and after conception as a key mechanism for the teratogenic effects of FASD that persist into adulthood. Transgenerational effects are likely to contribute to the global burden of alcohol-related disease. FASD results in lifelong disability and preventative programs should include both maternal alcohol abstention and preconception alcohol avoidance."

It is hard to miss the implication: there is no "safe" time for the consumption of alcohol in terms of protecting genes --except well after child-bearing or child-fathering age.

I find that staggering as a parent of a child prenatally exposed to alcohol, and also the product of the first sober generation in a long line of alcoholics in both branches of the family tree.

As a historian I have always wondered about the average women of childbearing age in Colonial America who routinely drank home-brewed "cider" because water was believed to be unsafe (we now know it was contaminated with sewage). Why aren't the annals of history populated with people who obviously had FASD? Maybe because cider-affected children were guided into manual trades that required little formal education so they did not grow up to write the history books...

Or maybe centuries of insults to the human genome from factors like famine, malnutrition, alcohol and genetic mutation have cumulatively compounded to make modern children genetically more susceptible?

Genetics, Epigenetics and FASD Part I

Alcohol and genes don't mix.

A growing body of hard scientific research now links the developmental and behavioral challenges of Fetal Alcohol Spectrum Disorders to changes at the DNA level (genetics) and just above it (epigenetics) triggered by alcohol.

That isn't quite as bad as it sounds. Scientists have long understood that a plethora of human ills from diabetes to cancer arise from harmful genetic mutations. The news is simply that FASD is now on that list. In this post, I will highlight recent genetic insights into the effects of prenatal exposure to alcohol (PAE). In the next post I'll summarize the current research on epigenetics in FASD.

Genetics
This article  (abstract linked) that appeared in the July 6, 2011 issue of Nature, discussed research in which scientists demonstrated the mechanism by which permanent (heritable) DNA mutations occurred in genetically vulnerable mice exposed to alcohol in utero. Kari linked yesterday to this news summary digesting the findings.

The article raises significant questions for those of us kids with PAE: whether exposed kids who have an FASD carry a genetic mutation or not, and whether exposed kids who are not diagnosed (like those who seem to escape exposure without significant developmental delays or behavioral issues) can be carriers of unexpressed genetic mutations. Scientists have not yet published research commenting on that.

The flip side is that the same research identified the genetically-controlled metabolic mechanisms that enable some mice to withstand prenatal exposure to alcohol without permanent genetic changes. That is a significant step toward future therapy that potentially may screen for and repair any genetic damage than may be caused by prenatal exposure.

However, the epigentic findings may be even more interesting because they help explain the extremely wide range of effects of PAE, including that facts that some heavily exposed kids seem to escape unscathed, while other more mildly exposed kids (those we used to think were at less risk) can have clinically significant FASD. That will be the subject of my next post.

Wednesday, July 6, 2011

While We've Been Gone at Korean Culture Camp....

This is Camp Choson week at our house. It's only Wednesday and I'm exhausted, in a wonderful way. As a transracial adoptive parent I gladly exchange more social energy that I typically expend in two months' time for the chance to renew and deepen relationships with Korean American friends and adult Korean adoptees. Not to mention giving the girls a week with 150 other adopted Korean kids.

I owe you a post on Camp Choson when my brain recovers. In the mean time, this is a Joy show-and-tell. Joy has spent the week at home with her PCAs. I've only been home long enough to get her up in the morning and tuck her in bed at night and I miss her!



Look what she can do! Joy is counting Cheerios into Grandma's hand, saying each number as she put down the Cheerio.


Isn't she proud of herself?! This little girl is ready to attend preschool in September! (Just pray that her wheelchair is delivered on time.  Seven months later and we're still pushing paperwork...)

This week I also realized that Joy can now answer open-ended questions, like "What do you want to do next, Joy?" Until very recently we had to suggest a pair of options and she would respond by verbally choosing one or the other. But now when I ask, she often volunteers what she wants to do or where she wants to go. Sometimes her choices are surprising. Like when I expect her to tell me, "Go outside,"or "Play downstairs," she'll say,"I want to comb my hair." (She's serious. Joy loves to comb or brush her own hair and then let an adult finish the parts she can't reach.)

It is a milestone we're grateful to see. In fact, at lunch at Camp Choson yesterday, I found myself seated next to another special-needs mom and as we talked through the accommodations we'll need to make for Joy to attend Camp Choson in two years (like an adult friend to push her wheelchair and to carry her up the stairs into the art building), she asked, "Do you think she'll be able to communicate?" It was the first time I didn't feel  like I was being optimistic in answering, "Yes. She'll use speech to get her needs met."

God is good!

Sunday, July 3, 2011

We Are the Experts on Our Own Kids

That's the truth whether we wish it was so or not.

I was really surprised this week when a referral from our FASD clinician, one of the few professionals we have met who truly "gets" Hope, resulted in an appointment with a really nice doctor who started out (it seemed to me) questioning whether that diagnosis is even right, throwing out some alternate explanations that have already been eliminated as possibilities by other doctors. I wasn't expecting it and when it finally occurred to me to simply say that he respected it and moved on.

I'm conflicted about the fact that I'm conflicted by the encounter. After all, as a historian I essentially do that all the time: play devil's-advocate, prodding the assumptions underlying conclusions, asking, "What if we're wrong about this particular assumption? Can the traditional interpretation stand even if we were wrong about the beliefs that support it?"

Why wouldn't I welcome someone doing that for my daughter? That's what this doctor was doing.

I think the short answer is that we've already spent four years ruling out other diagnoses. I honestly hoped there was some alternate explanation because there is still (unfairly) so much stigma associated with an FASD diagnosis. Now that we've come to accept it, I'm ready to move on.

Does that mean we need to move on from this particular professional? I think not. In the end he agreed that she has either ADD or ADHD (kids often outgrow the "H" and it seems Hope may be) and would benefit from trialing medication. That was my goal for the appointment and it was met. He also had good rapport with Hope which counts for alot.

Sure: I would have welcomed meeting someone who is like-minded with our FASD clinician. But it sounds like we will not need a long-term relationship with this doctor; that the management in the near future will be transferred to our pediatrician. Who because she is also the pediatrician to Dorothy's kids is already used to tiger mamas :).

Speaking of Dorothy, be sure to stop over and read her thoughtful answer, Becoming the Specialist, to my questions about finding the right doctor for a complicated child. She said it very well.

Saturday, July 2, 2011

Small Groups, Blog Platforms, and Jumping Ship

Blogger is free and I've been trying not to resent its idiosyncrasies. My friends were blogging here so I came here, too.

But it is so frustrating to not be able to talk to each other. I have tried twelve times to comment on Julie's blog post yesterday but have gotten stuck each time in an endless identity loop that will not recognize my Blogger name and password. Some of you have experienced the same thing trying to comment here.

The ability to comment on a conversation is too important to leave to Blogger's whim.

Many of us find that parenting kids with disabilities is isolating. If we polled special-needs families in our church, I think we would find that fewer than average participate in a small group because the logistics of finding a group that fits the dynamics of our life is so challenging.

That is significant in a church like ours where the elders have established small groups as their primary way of "shepherding the flock."  If you want to "know and be known" on a personal level in a church the size of ours, the very best way is to join a small group.

While it isn't the same thing as meeting face to face, the blogosphere has helped some of us fill the gap. For some of special-needs moms in our church, our blogs stand-in as a virtual small group. We take turns sharing the Word and what God is doing in our lives. We share our praises and our prayer requests and regularly pray for each other. We also support each other in practical ways --like Dorothy's organizing a Care Calendar for Julie's family during Elijah's upcoming bone marrow transplant.

Beyond that, assuming our posts are honest, blogging creates a layer of transparency that allows people outside our circle of church friends to know how we're doing, too.




In our case, the blogging platform is the public place we gather to meet and pray whenever we can. But in Blogger, when we knock, half the time we find the door is locked. Virtually fingerless, we can't lift the latch and let ourselves in.

So I am getting ready to migrate to WordPress. That platform is more stable. I've never had a problem commenting on a WordPress blog. The quirks my WordPress friends have mentioned (like paying to host video unless you host it externally) are things I can live with. They estimate that migrating the blog will take about an hour of set up. Beyond that, I will have to  manually update all of my internal links to the WordPress edition of those posts.

But those things sound like a fair trade for being able to blog unimpaired. I'll be sure to tell you where I go and when I'm going.

Photo credit: Oliver Kelly Latch. The Minnesota Historical Society.

Friday, July 1, 2011

Doctors and the State of Children's Mental Health

I'm still processing Wednesday's visit to an ADHD specialist. Without going into detail, have the rest of you resigned yourselves to being the experts on your own kids and settled for a professional who is easy to work with to get your kids what you think they need? Or have you found that if you keep looking long enough you can find someone with sufficient relevant experience to offer real insight? If the latter, knowing how much extra time we all have on our hands :), how did you find that professional?

Changing subjects, I still can't type very well. But I can pass along a really good set of links from the National Institutes of Metal Health (NMIH) on a variety of children's mental health issues that I know are relevant to readers in our blog family. I was led into these on my search for up to date research on ADHD and if you click around inside the NIMH website, you'll find more info. on other issues and other age ranges (like teens) as well.

The first link is relevant to everyone who is raising children: the NIMH state-of-the-field fact sheet on children's brain development. Among other things, the NIMH recognizes the effects of early trauma on neurological development; the link between neurological development and emotional development; and the effects of epigentics on genetic expression over generations. (In the future I'm sure I'll be writing more on epigentics because the implications are fascinating, both for the modern day and for history.)

  • The NIMH fact sheet on ADHD (very relevant even if you thing your child does not have the "H"--is not hyperactive) and a 28-page PDF booklet on ADHD. There is an interesting note on effective stimulant  medical intervention in children as young as three in the fact sheet.



Are You Hungry?

After quietly following Hyosun Ro's Korean cooking blog for months, I've added her to my sidebar. Her posts are a visual feast of helpful how-to's and are all the encouragement I need to keep expanding our family repertoire of Korean food. Her recipes are easy to use because the ingredients are commonly available in America if you have access to a Korean grocery store for some staples.

Try this recipe for example: Jajangmyeon (noodles with black bean sauce) made from chujang (black bean paste), not pe-made jajang. Mmmmmmm!

Thursday, June 30, 2011

Gyongbokkung

For my friends whose travel calls are so near, yet so far, and are approaching a long holiday weekend, here's a photo essay to bouy you up. May you be treading these cobbled courts soon!

Gyongbokkung (Kyongbokkung; Gyongbok Palace), Seoul, South Korea
October 2010












































Wednesday, June 29, 2011

Pill Swallowing Advice?

How have you taught younger kids to swallow pills? The Dr.'s first choice trial for an ADHD med for Hope is one I've been hoping we could try. But it must be swallowed whole.

So far we have been practicing trying to swallow Tic Tacs with and without a pill-swallowing cup but are only at about 20% success. Putting the Tic Tac in yogurt doesn't work either.

Her specific problem seems to be not being able to gulp; she swishes the food or liquid around in her mouth before swallowing. Any ideas?

Tuesday, June 28, 2011

Grateful

"Therefore I tell you, do not be anxious about your life,
what you will eat or what you will drink
or about your body, what you will put on.
Is not life more than food and the body more than clothing?
....
And why are you anxious about clothing?
Consider the lilies of the field, how they grow:
they neither toil nor spin.
Yet I tell you that even Solomon in all his glory
was not arrayed like one of these.
But if God so clothes the grass of the field
which today is alive and tomorrow is thrown into the oven,
will he not much more clothe you,
O you of little faith?
Therefore, do not be anxious..."

Matthew 6:25, 28-31a

*****

Most of the time I am not anxious about clothes.

Most of the time I am not even conscious about clothes. 

If yesterday you had asked me why I chose those pants out of my closet, I would have said. "They were clean. And I wasn't going out."

You might have observed, "I've never seen that shirt before."

I would have looked a second time and shrugged.  "Oh. I haven't worn it in a year. I'm surprised I haven't given it away."

I'm not omniscient.

I did not foresee the alignment of my front wheel with a wood chip and a crack in the sidewalk when I got dressed.

But God did.

He saved my skin.

The whole front of my body might look like the right side of my face.

God clothed me.

If He appoints even mundane things like cargo pants and polo shirts to do His will, why am I anxious about bigger things like cerebral palsy and FASD?

Do you see wounds? They are proof of God's goodness stamped on my face.

Monday, June 27, 2011

The Cat Laughs

Well, now I understand why I had that interal dialogue about writing a full week before Korea Camp. God saw the crack in the path that would send me sailing over the handlebars of my scooter this morning.

Big picture sense I am fine. Small picture sense, I won't be looking in a mirror for a while. My typing hand and my face broke my fall. So there won't be much writing happening here for a few days.

I wonder what the cat will think of books... as long as I avoid the shelf of books that are sequestered because reading them makes me want to write :).

Sunday, June 26, 2011

The Bubble, the Cat, and the Dog

Another good thing about camp weeks: drive time alone in the car to think. No, I'm not really alone. But I'm visually alone in the driver's seat, the girls arrayed in seats behind me. It's one time I'm glad not to have eyes in the back  of my head.

With our commutes to church (we live a half hour away with no traffic) they've gotten good at entertaining themselves. Barring meltdowns, I can drive and think.

Last week, as I drove, I was loving the Dakota sense of time. Camp doesn't even start officially until 10:00 AM, a loose enough 10:00 that even if we get out the door  later than 9:30 AM, we don't arrive late.

Then there's Korea Camp next week, Camp Choson. We'll be in the van by 7:30 AM to meet the 8:45 AM start time.  The team of parents, Korean Americans, and adult adoptees who plan camp do a wonderful job programming the seven hour camp day. While that's a long day for the youngest campers (Kindergartners and those emotionally less mature than their grade level), the girls LOVE it. They wish they could stay all day and all night, too --which they can do starting in seventh grade. So I'm not regretting  the upcoming week of nine or ten hour days (including drive time).

Yet, driving to Dakota Camp, I was trying the analyze the kernel of anxiety that I associate with thinking about Korea Camp. I had a mental image of a bubble rising to the surface from the depths of a pool. A single last-gasp of breath that surfaces, pops, and vanishes.

What, I wondered, was down there trying to breathe at the bottom of the pool?

Writing.

A year ago I was sitting here (quite literally) with electronic files full of outlines, extracts and fragments of writing done here and there. The research phase on Mary Butler Renville's biography was over. With a contract dictating the production schedule, I had no choice.

But I could not write. Oh, sure. I could dutifully fulfill my self-appointed page quota. But I could not write.

Truth was, I wasn't even sure I could write any more. I was a has been writer --back in the days when I had no children. In that day I had all the ingredients aspiring writers are advised to acquire: space (mental and physical), time, and dedication to protecting those things in the interests of art.

Now, I laugh. Just about anyone could write under those circumstances.

The question was, could I write like Susannah Wesley prayed?  Toss my apron up over my head and compose while home life with young children swirled around me?

I really had no choice but to try. After about nine weeks of slogging, just about the time I resigned myself to the fact that my whole Introduction would be muck-caked in a bog and in need of an editor with an impossibly long stick, it clicked.

I didn't "find it." No Siree. It found me. I don't think theologically I can call it Grace. But it was a grace. To be able to write in a ten minute snatch here and a twenty minute burst there and have 120 pages of first draft come out reading like "a historical tour de force" is not something of my own doing. I actually laughed when I read that review: if that (very kind) reader in academia had any idea that when I sit down to write in my kitchen I have to finish home school first, then blow my kindergartner's peanut butter cracker crumbs off my keyboard and be careful not to roll my chair wheels over the fingers of my four year old who crawls over because she loves the sound my wheels make when she spins them, he'd probably fall off his chair and knock piles of books and term papers to the floor on his way down.

So: clearly not of my own doing. But treasured. Not the ability to garner praise. The ability to think out loud clearly on command. It is a useful, pleasurable thing and I hope to do more of it someday.

And that, I realized alone in the driver's seat, was the bubble rising up from the depths of the pool: the idea of losing it.

Whatever "it" is. That thing like a cagey stray cat that would not be wooed into the house by saucers of milk but miraculously, one day decided to come inside and start sleeping next to the saucer, curled up on my feet. Might it just as quietly slip away and leave my feet naked again on the cold floor?

Blogging, I realized, has become the saucer into which I daily pour a little milk for the cat.

It isn't as rigorous writing because little has to relate to anything else. The cumulative whole does not build toward anything. Yet the daily discipline is helpful: trying to describe whatever the cat drags in.

Next week I won't be here to pour the milk or scratch its back. And after a  week of neglect, I'm afraid the the cat may take itself to another home.

Good thing I had an hour on the road every day this week. It took me that long just to figure it out.

No. I have arrived at no insights beyond the fact that this cat is truly a stray. It has a mind of its own and there's no guaranteeing that if I pour, it will purr. So I can't make it stay no  matter what I do.

*****
So where, you ask, is the dog?

She doesn't help me write, but she's going nowhere.


Gratuitous cute Daisy picture courtesy of Faith.

Saturday, June 25, 2011

Nothing to Envy

There's something good to be said for weeks like this past one. While my heart and mind process it all, I have to slow down and let it happen.

Sometimes I do that by escaping. Except I rarely get very far. Instead of trying to quantify starvation on the Dakota reservations in Minnesota in 1862, I just finished reading about the long-term effects of chronic malnutrition in North Korea.


That probably doesn't make Barbara Demick's Nothing to Envy: Ordinary Lives in North Korea sound tempting. But I liked my library copy so much that I just ordered a used copy via bookfinder for our permanent collection and my husband already put dibs on reading it on his next business trip.

Demick successfully juggles a challenging structure: the intertwined stories of six unrelated  people before and after their separate defections from the same city in North Korea during the past decade. Nothing to Envy is in the genre of Melissa Fay Greene's There is No Me Without You and I found it equally engaging.

This is very recent history and I couldn't help parallel their unfolding stories with my own. My husband and I married just before the protracted famine and economic collapse in North Korea in the 1990's and by the time I made my first trip to Seoul in 2004, I may have passed North Koreans on the streets of Seoul and Suwon who had escaped and resettled there. Demick, then the Seoul corespondent for The Los Angeles Times, was interviewing defectors and writing the book during the years our girls were born (in South Korea) and the book appeared in print just months after we brought Joy home.

We may never know for sure. But given the arbitrary partitioning of Korea at the end of the war, my girls may have relatives in North Korea. If the story of South Korea's rebirth as a techno-wunderkind is their story, so is the story North Korea's rise and fall under communism. Who knows if the challenges of reunification may be part of their future? My girls will certainly know what it is like to be an expatriate of their homeland and to be genetically related to strangers, even if the circumstances created by adoption are quite different.

Although Nothing to Envy was not yet in print during my waits to bring our children home, books like this were a wonderful escape. They allowed me to get away (while not getting too far away) from where my heart was: in Korea.

Friday, June 24, 2011

Pidamaya

"Pidamaya" is Dakota for "Thank you."

Unlike English, which dictates the recipient balance the scales with, "You're welcome," there's a lovely modesty to the simple Dakota acknowledgment (by women), "Han." (Nasalize the "a" and don't pronounce the "n".)

That single syllable says, "Of course. It goes without saying that this is the way it is done."

Ella Deloria told me first in her lovely novel Waterlily. Then again in her posthumously-published The Dakota Way of Life. And I experience it when I spend time with Dakota people.

Like at MHS on Monday in a five hour meeting with a majority-Dakota web development group. And Tuesday, Wednesday, and today at Dakota Language Camp. Twenty hours of time out of my own culture feels like a few weeks' vacation.

I find myself saying,"Pidamaya, God."

But enough musing. It probably means nothing if you weren't there.

So let me show you some of the fun we had --despite the fact that we had to move our 100% outdoor camp from the lovely wooded river bluffs and prairie of the Pond Dakota Mission site to inside Bloomington City Hall all three days.

Mercy and Hope's favorite Potato Dance lost a little photo value performed on faux-wood linoleum --but not the fun. And every day, in between showers we got outside to do fun things like figure out how people used a travois.

Each team of children was given a bag of belongings, a piece of canvas, a rope, and a travois. They had to figure out how to bundle the belongings and bind the bundle to the travois in a way that they did not fall off or drag on the ground.

 Then they ran a relay circuit pulling the travois to see if their ideas worked.


Dakota Camp has a completely different feel than Korea Camp because the cultures are so different. While Dakota people find the highest value in the old ways, Korea is bent on keeping up with modernity. You'll see i-Phones  in the hands of teachers in both camps. But one is accessing a 19th century dictionary while the other is playing a K-pop music video. Koreans value their traditional ways and curate them with beauty and precision. But knowledge of traditional ways does not define modern Koreans the way it defines modern Dakota people.

As horrible as the Japanese occupation of Korea was, thousands of first-language Korean speakers survived the occupation and quietly taught the language to their children even while the occupation government forced them to use Japanese in schools and in public. In Korea, the language was suppressed, but not lost.

In the Dakota homeland, the language was all but eradicated in a 100-year period during which the U.S. government bent its considerable power over food, housing, medical care, employment, and education to stamping out Dakota culture. Today, while thousands of first-language English speakers are learning Dakota, effectively reclaiming and reestablishing the language, the number of first-language speakers of Dakota in the United States and Canada can probably be counted on two hands. And within a decade or two, all of them will be gone.


And so my Korea-born daughters, and their China-born friend, a several dozen wasicus (Euro-Americans) and a couple dozen people of Dakota descent got together for three days and spoke to each other in the Dakota language. I understand  a little more than I speak and it brought tears to my eyes to listen: every time Dakota people pray they say "Pidamaya" for the language.

Can you imagine if tomorrow the Federal government decided Kurdish was the state language --then spent the next 100 years eradicating English and every cultural practice tied to the language? A century from now when public opinion changed, the government relented and declared English would be tolerated, might not our great-grandchildren close their eyes, raise their hands to God, and say, "Thank you" ?

Wednesday, June 22, 2011

"South Korean Pastor Tends Unwanted Flock"

This article by John M. Glionna appeared in The Los Angeles Times last Sunday, June 19, 2011. Here's a teaser about the pastor in the article's title:

"...[His son's] birth caused a religious man to question his faith.

"I asked God, 'Why would you give me a handicapped child?' I wasn't grateful for this baby," Lee recalled.
He soon came to regret those words. Looking down at his son, helpless and beyond hope, he says he witnessed the preciousness of life. He and his wife decided to work desperately to keep the boy alive..."

In the 25 years since their son was born, Pastor Lee Jon-rak and his wife has taken in thirty two children abandoned on their doorstep, almost all of them significantly disabled. Unfortunately, the article rings very true to what I was told about the plight of children born with visible disabilities in Korea when I visited a Catholic orphange for disabled children in Pusan.

Read the article. And pray for the disabled children of South Korea. This story, a follow up on my visit to Pusan, and Joy's and Amy's stories are still infrequent. And with  the direction International adoption from Korea is headed, they may soon be impossible, except possibly for families of Korean heritage living abroad.


Thanks to Liz for passing on the link to this article!

Tuesday, June 21, 2011

Ann Voskamp on "What To Sing in Storms"

I'm one of the last people I know who hasn't read or isn't reading Ann Voskamp's One Thousand Gifts: A Dare to Live Fully Right Where Your Are.

My reason: she writes like one of my all-time favorite authors, Annie Dillard, and both Ann's and Annie's writing is too beautiful to be consumed in snatches.

Except when it comes packaged that way.

The July 2, 2011 issue of World magazine contains an essay by Voskamp called "What to Sing in Storms" that will speak to the heart of most of the moms I know who are raising children with disabilities. (The essay is at the bottom of the article.) It only requires ten minutes of time and while I can't imagine curling up with my computer on the couch like I did with the print version (the digital edition is ugly monotone), her words will be soft rain on the parched ground of your heart.

She knows storms. And she knows how to sing.

Monday, June 20, 2011

A Message for the Holt Forum

Hi All!
It has been so long since I signed on to Holt (2008?) that my password doesn’t work. Nor did the password recovery feature work. Nora kindly linked on Holt  here to this blog and it looks like many of you have found the compiled links  to information on prenatal alcohol exposure.

I hope they help. My goal has been to compile everything I wish I had known over the past six years --since we brought our mildly alcohol exposed daughter home from Korea.
Like many of you, we were concerned about alcohol exposure and specifically asked an IAC to help us evaluate her referral with that in mind. While the IAC Dr. said "when there is any amount of exposure you can never be certain," he saw no red flags in her referral. There were no obvious signs in her photos and no clues in her developmental history.
It wasn't until Hope was between ages two and three that we began to wonder if maybe she was more than simply a "spirited child." She in fact has been diagnosed with ARND (alcohol related neurological deficits) with ADHD. Contrary to how it may seem, getting that diagnosis is one of the best things we have ever done; we are now intervening to meet her needs and are parenting her so much more effectively.
Please do not be misled by what you want to hear when a doctor assures you that according to the referral information, your baby is doing so well developmentally that FAS can be ruled out. Of the FASDs (Fetal Alcohol Spectrum Disorders), it is only FAS—Fetal Alcohol Syndrome—that may be physically obvious from birth. The only thing that reassurance means is that the child does not have any obvious physical features of FAS. However, children without the physical characteristics can be just as devastatingly impacted neurologically as those who have them. Like in the case of my daughter, the damage can be physically invisible.
Doctors recommend that every child with known PAE be screened for potential FASD because it is so important (for the child’s sake and for your family’s sake) to begin appropriate interventions early. This screening is even more important for children who do not have any obvious physical characteristics because those are the kids most likely to fall through the cracks. When it goes unrecognized and untreated, children with the invisible forms of FASD are more challenged (and challenging) than those who have physical clues that win them an early diagnosis and appropriate interventions.
Hope for the very best outcome for your child who has any amount of PAE (prenatal alcohol exposure); many kids are just fine despite their exposure. But if/when things get challenging, don't be misled like we were by our original belief that an FASD was not a possibility for our child.
And please, continue to adopt alcohol exposed children! Yes, it is challenging. But it is easier when you educate your self and know how to reach out for help and support if you need it. So step out in faith --at the same time you ask questions and learn how to be the best parent possible for your child with PAE.

--CarrieZ

Sunday, June 19, 2011

Situational Anxiety During Waiting in Adoption: compiled links

If you were reading here back in early 2011, you probably remember a series I wrote on situational anxiety in adoption. Someone recently asked if I could make a master post with links like I did for posts on prenatal alcohol exposure. So here it is, with the first post on top.

I've placed a permalink to this index post in my sidebar under "A Gathering of Days."

Alternately, if you want to load the series all at once and don't mind reading from the bottom of your screen up, you can click on "Situational Anxiety in Adoption" in the label cloud.

Hope this helps reduce the anxiety level a little!

Situational Anxiety in Adoption
The Beast Has a Name
The Beast Has a Name, Part II
Welcome to the Island
Welcome to the Island, Part II
Nice Place to Visit, But...
The Chicken and the Egg
In Situational Anxiety's Wake
Where I'm Coming From
Think Situational Anxiety is in Your Head?
What's A Mom to Do?
Why Information Helps
Cause Our Faith to Rise
Situational Anxiety and PADS
Calm My Anxious Heart
Calm My Anxious Heart Part II
A Ticket to "The End of Myself"
Who Are We Mad At, Really?

History Journal 5: The 17 Minute Switch

I'm not quite sure how western culture got stuck on a linear view of time. Sure, calendars based loosely on lunar cycles make some sense. But it seems like very little about life moves in a nice straight line. Life circles and loops and makes unexpected detours. So does researching history.

My research plan on Indian Hating was linear: I wanted to see if I could find orders from commander Henry Sibley that shed light on the cluster of entries in the diaries of his soldiers on the subject of, as one of them said, until Sibley forbade it, there was "a good deal of" "trysting with the squaws."

I found the corresponding orders --and so much more. To keep the Indian Hating story on a linear track, I needed to ignore everything else I discovered. I did not. I could not.

One of my finds --holograph (handwritten) copies of letters written by Sibley to the Dakota camps during the war directly impacted my book in press. I had searched for holographs of these letters without finding them and so, as base texts for an appendix, settled for the earliest known copies, which appeared in print in 1863. A cursory reading showed some significant differences between these new holographs and the letters as printed one year later. So Indian Hating went on pause while I made a careful comparison of the letters and contacted my publisher.

Then I received a memo from the organizers of the conference for which I was preparing the paper. It said each presenter had 17 minutes, which the memo helpfully spelled out was not longer than an eight page paper double spaced. More typically, presenters have 40 minutes and I'd chosen my research subject with that in mind.

It doesn't seem logical that Indian Hating is a controversial subject. While I like to think I'm capable of nuanced thinking, I view some things as moral absolutes: Willfully torturing other human beings is never okay. Taking pleasure in making other people live in fear is never okay. Rape is never okay. Murder is never okay.

But there is a crazy inversion in moral thinking in Minnesota history when it comes to the Dakota War of 1862. The logic (which I could quote from published sources) says: You obviously don't understand what they [Dakota people without distinction] did to us [white people without distinction]. Dakota people are lucky they didn't 'get it worse than they did.'

In the wake of the war, Dakota people were judged guilty until proven innocent. It is like justifying open season on anyone who appeared to be born in the Middle East in the wake of  911. This reciprocity idea --an eye for an eye --has persisted for so long that historians have turned away from the evidence of indiscriminate retribution on Dakota in the wake of the war. So that's the problem with having only 17 minutes to present: part of my audience will not even agree that Indian Hating was a problem.

Looking for  Plan B for the Northern Great Plains conference I opened the manuscript  of my historical introduction to A Thrilling Narrative and found a section that can stand alone, conveniently eight pages double spaced: documentaryevidence that Dakota children were dying due to the effects of chronic malnutrition on the eve of the Dakota War of 1862. Dakota oral history has always told us they were dying of hunger. But white historians have pointed to the availability of staple foods like corn and questioned whether starvation was possible.

If you are in Mankato on September 23, you're welcome to come hear the 17 minute version of the story at MSU. But I will be developing the same idea in more detail when I speak at the historic Gideon Pond House in Bloomington on Sunday August 21, 2011 from 2:00-3:00 PM.

I'm sorry to relegate Indian Hating to the back burner. But I feel very good about being able to finally explain how and why the children of even relatively well-off Dakota people could be "dying with hunger" in 1862.

Video: How iLs Works

Last week, I wrote this post  updating our progress with iLs. I had not yet seen this video (just under 5 minutes) in which a founder of iLs explains how it works, and an ADHD doctor comments on its effects in ADHD.

The disclaimer: the video clip was produced by iLs, so obviously they have some interest in representing their product in the best light. The doctor does not state that it was not a paid endorsement, so it theoretically could be. On the other hand, I don't think iLs needs to resort to marketing gimmicks. In our experience, it is the having the effects this video claims.

Saturday, June 18, 2011

What if We Have Only Five More Years of Plenty?

Thunderstorms and sleep disorders don't mix. I finally settled Hope back to sleep at 4:45 AM after the 12:30 PM atmospheric conniption; she got up for the day at 7:00 AM.

Laying awake through it all, my mind replayed a conversation I had with Dorothy.

There are no hard and fast rules with FASD. But yesterday Dorothy commented on something that I have noticed, too: how common it seems for families who manage to get by with kids who have FASD to hit a wall when the child is eleven to thirteen. Dorothy and I agreed that we're both trying to milk as much joy as we can out of these early years because later we may view these as our golden days.

Of course, my brain throws out objections to the idea that we have only five more years until Hope is eleven.

I know (via people who are close to them; I have not been privileged to meet them yet) two young adults in their twenties who are living with FASD in their communities outside their parents' home. They don't have police records, have never lived in a residential facility, have acquired higher education, are meaningfully employed, have friends outside their family. They take medication and have some simple, but essential supports in place to help them with deficits in areas like executive function. Stories like theirs encourage me.

The Bible is also encouraging. In it, I see that nothing is impossible with God; He is powerful and free to do what He wills. However the Bible also tells me that He often chooses difficult circumstances, not easy ones, to display His glory in this world.

Then there are statistics, if one puts faith in them. Longitudinal research on FASD that shows children who are diagnosed early (before the age of six) and who receive appropriate intervention and support from an early age have better outcomes. Hope was diagnosed at six and we have been parenting her as if she has FASD since she was three.

All of those things help balance what might sound like alarmist thinking.

Yet I'm also the mom of a neuro-typical 11 year old and can easily imagine how the first blush of hormones and the sudden desire for premature independence from parents and conformity to friends might hit Hope at the same age.

So what if the next five years are, relationally speaking, the years of plenty before a coming famine when she hits double digit age numbers? Next to God, my relationship with Hope may be the most critical resource we have. How can I capitalize on that as long as God allows it to last? How do I nurture it to encourage it to persist? (Will emotional immaturity be an asset??) What are the most important things I can teach her while I still can?

If you have any ideas, I am happy to hear them.

A few things came to mind last night that need some more thought and prayer. Chief among them is the realization that we have spent so much of her life up to now in survival mode that I haven't had goals much higher than that. Today, with so little sleep all around, looks like one of those days. My husband and I cancelled a trip and a babysitter to compensate. But God does not arrange thunderstorms that way every night, for which I am grateful.

Thursday, June 16, 2011

iLs Update 50% through Level 1

Last week, we took our first break from iLs--mostly for my sake. It didn't take me long to figure out that we got the most out of doing iLs first thing after breakfast. In the beginning, iLs acted something like a stimulant medication on Hope's brain: it slowed her down and grounded her. Not perfectly. But it was an improvement of about 50% over her (former) typical, which was motivating.

The flip side of doing iLs first thing was that with two children doing it, iLs used up the two most predictable hours of our daytime and after two months without those hours, I needed a break to catch up. I had a great week crossing things off my task list. But Hope had three record-level melt downs, two of them while we were all trapped in the van together. It surprised us because after that awful week Hope cut two front teeth and two molars a moth ago, we hadn't had any meltdowns and had quickly acclimated to our new normal. We drew two conclusions:
  • the iLs seems to be having a helpful effect on her ADHD behavior
  • we need to carry a high-caffeine beverage with us for emergencies

I should add one more thing. Three melt-downs in one week are no fun. But compared to her "typical" a year ago, three is a significant improvement. They were also of a little different character. They were what I think of as a "lost" melt-down. Not high-anger despite the fact that in two of them she was perseverating about not getting her way (like she wanted to go to the beach at bed time). Rather, it was like watching her teeter at the top of a muddy slope, lose her footing, and slowly slide downward to a far-away pit inside herself. None of the ropes we had to throw were long enough to help. The only way to prevent it is to keep her away from the edges of her personal slopes because once she starts sliding, there is no way to reach her.

Like a night terror, a day time melt down or a rage (for her, those are two different things) is just something we have to wait out. And like Hope's night terrors, over time, we have figured out what helps keep her from going dangerously close to the precipice. It took a week long break from iLs to confirm what I suspected: for Hope, it seems to firm up the edges of her slippery-slopes. It builds margin so she is not as easily pushed over the edge.

How? you ask. My non-scientific impression is that it is helping re-organize some the disordered spaces in her brain. Or perhaps more neurologically correct would be to imagine iLs helping forge new neural connections that are beginning to compensate for her deficits. The "i" in iLs stands for "integrated."



Another sign to rejoice in, crazy as this may sound, is that Hope is beginning to engage with her sisters on a more typical level of sibling conflict. Like as I write this, she is pouting in her room (going there was her choice) because Mercy was tired of playing outside and Hope wasn't ready to lose her playmate. Hope just spent two minutes fake-crying, then stopped. Not because Mercy caved in and gave Hope her way or because I went up to her room and consoled her. She just stopped.

Hope just came down from her room and asked if she could have a cup of applesauce with a straw (her own idea), which is one of the calming strategies she discovered in OT. She got her own cup and straw, got out the applesauce and poured it, and sat down next to Mercy and began helping her hunt for beads. In their interpersonal language, that's an apology.




Six months ago, she may have come in pouting and taken herself to her room, but it would have been 50/50 whether she could pull out of it without needing my help to keep it from turning into a full-scale meltdown.

This is not just my perception. Hope notices the change, although she is unable to articulate what it is.

Last weekend I announced that we'd be starting iLs again on Monday. We did iLs in our accustomed style on Monday and Tuesday. Then Wednesday morning, with my husband out of town, I got sucked into finishing the last task on my iLs-vacation list: cleaning the basement. I wasn't watching the time and Hope tracked me down to ask if she could start iLs. I was right in the middle of something and said, "Give me ten minutes to finish this and then we can start."

"Is it okay if I start now by myself?" Hope asked. "Then you can keep cleaning."

Mercy hollered down, "I'll do her exercises with her!"

"Can we mom, please? I'm on 29, right?"

"Okay..." I hesitated, thinking of that old TV show The Twilight Zone. "Sure!" I brightened. "You two start and give me a call if you need something."

So yesterday, Hope did iLs without me, with Mercy's company for the first 20 minutes. She spent the last 40 minutes doing her own thing. The same thing happened again this morning except the girls decided that after warming up, they wanted to scooter to the park and asked me and Daisy to go with them.

After we got home, they were scrubbing the back steps with toothbrushes (another story) when Hope got disappointed, pouted in her room, then pulled herself out of it. Five minutes ago, Hope simply said, "Yes, mom," and got to work when I asked her to start picking up the beads. Now, at her own initiative, she arranging on the counter the things I will need to make lunch.

Three and half years ago when we were absolutely at the end of our rope with Hope, I never imagined there would be days like this in our future. I think the Holy Spirit was there at the dinner table with us in Philadelphia the night my husband and I, in complete ignorance, settled on "Hope" as a name for our third daughter.

Tuesday, June 14, 2011

Things That Are Seen

I have been blessed by a series of three interviews a father in our church, John Knight, did recently with our pastor, John Piper, after a sermon series on John Chapter 9, the story of Jesus and the man born blind. The first three verses in that chapter read:

As [Jesus] passed by, he saw a man blind from birth. And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him." (John 9:1-3)

The Bible says Jesus healed the man, restoring his sight, displaying the power and glory of God.

The interview series is especially powerful because the Knight's son was born blind. God has chosen not to heal their son yet; in fact he lives with autism and other things more disabling than lack of eyesight. The Knights will be the first to contend that God can be glorified through significant disablity, that God's power is not displayed merely in acts of healing but in the moment by moment dependence upon God evidenced in dealing with a disability.

Yet, Kari's thoughts this morning reminded me that the two paths to disability parenting, birth and adoption, may be perceived and received differently in the Christian church.

Obviously, when a child with a disability is born into a family, God's sovereign choice is evident for those who will see it. Jesus made that explicit in John 9. Cross out the idea that perhaps blindness was Divine Judgment for his own or his parents' sin. The only option left on the page is Divine Choice. For those of us who love the sovereignty of God, the right response seems obvious: Love this family. Support them as they raise their God-given disabled child and be privileged with them to a ringside seat to God's glory on display.

But what role does the sovereignty of God play in the adoption of a child with unusual needs?

The parents I know at our church who either have been called to seek special-needs adoption, or after the fact have realized God chose that path for their family would say, "The sovereignty of God has everything to do with this. God's fingerprints were all over this adoption from the beginning. He led us to adopt this child and without Him we could not do this."

But I wonder if the church (in general) may be less able to support families who adopt children with disabilities because several layers of human choice seem to stand between the sovereignty of God and the family's reality?

It is  not PC to observe this next point, but it is important to consider whether it infects our thinking. Looking only at outward circumstances, most adoptions --and virtually every special-needs adoption --seem to be driven by what we might reflexively judge as "sin." Certainly, we would agree with Jesus that the child did not sin; the child had no choice about being born. But it may seem like the child's disabling condition was inflicted by parental sin. In fact the social history often names it: abuse, neglect, abandonment, substance abuse --perhaps generations of these things.

The decision of a family to adopt a particular child seems to add another layer of human choice-making. With our lips, most Christians acknowledge that God places orphans in families. But often, even within the church (broadly defined) our actions may betray the belief, "Adoptive family: You made this bed. So you lie in it. You should have known the risk and you chose to accept it. Get your act together and own up to the consequences of your decision to adopt somebody else's child. The Bible cautions about 'the sins of the fathers' you know."

But that idea, even if it is only implied in our demeanor toward adoptive families coping with heavy disability, betrays faulty theology. Notice how Jesus actually answered the disciples' question, "Who sinned here?"

Jesus said, "It was not that this man sinned, or his parents..." Jesus was not saying that the man and his parents were without sin. Presumably they were human; therefore they were sinners. But the matter of sin was completely beside the point. The God-ordained point of this man's otherwise life-long disability was "that the works of God may be displayed in him."

The letter to the church at Rome had not yet been written when Jesus spoke those words. But the apostle Paul echoed Jesus when he later wrote, "What can be known about God is plain to them because God has shown it to them. For his invisible attributes, namely, his eternal power and divine nature, have been clearly perceived, ever since the creation of the world in the things that have been made. So they are without excuse." (Romans 1:19-20)

All "things that have been made" --created by God --display "his invisible attributes, namely, his eternal power and divine nature." That includes children created with disabilities and those who acquire them later whether they are born into or are adopted by a family. In fact, Paul extrapolated in his second letter to the Corinthian church:

"We have this treasure in jars of clay to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed but not driven to despair; persecuted, but not forsaken; struck down but not destroyed.... For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving to the glory of God. So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." (2 Corinthians 4:7-9, 15-18)

So why was this man born (or adopted) blind?
  • "That the works of God may be displayed in him" (John 9:3)
  • "For what can be known about God is plain to them, because God has shown it to them." (Romans 1:19)
  • "...so that as grace extends to more and more people it may increase thanksgiving to the glory of God." (2 Corinthians 4:15)
In fact, the invisible attributes of God may be more clearly manifest in the lives of people with disabilities and those who surround them because it is so patently obvious that grace emanates from God, not people.

I'm not talking about warm-fuzzy grace, but grace that may bite you or slap you upside the head. God does that sometimes.

That's why it breaks my heart that, as Kari observed, parents of children with disabilities may feel alienated from the church. Surely the Family of God should know and speak and show His heart better than the social service system.  We should be the first to offer a hug and a hand and a word of hope: These things that we see are passing away. The surpassing power belongs to God and not to us.