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.
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)
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.
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.
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 birthfather --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?