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!