days of wonder and grace

Come on Over!

2011-07-15T06:31:00.000-07:00

is growing in the shade of a new tree.

Please come on over and make yourself at home!

http://daysofwonderandgrace.wordpress.com/

Environment Helps the Pendulum Swing

2011-07-14T14:52:00.000-07:00

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.

Overheard

2011-07-12T18:36:00.000-07:00

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

On God's Account

2011-07-11T12:53:00.000-07:00

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.

Kamsahamnida!

2011-07-09T16:45:00.000-07:00

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!

A Few Special Memories

2011-07-08T18:32:00.000-07:00

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

2011-07-08T09:06:00.000-07:00

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

2011-07-08T07:44:00.000-07:00

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.

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

2011-07-06T18:51:00.000-07:00

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!

We Are the Experts on Our Own Kids

2011-07-03T13:15:00.000-07:00

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.

Small Groups, Blog Platforms, and Jumping Ship

2011-07-02T09:36:00.000-07:00

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.

Doctors and the State of Children's Mental Health

2011-07-01T09:39:00.000-07:00

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.

The NIMH fact sheet on Anxiety Disorders in children including OCD and PTSD.

The NIMH fact sheet on Bipolar Disorder in children.

The NIMH fact sheet on Depression in children.

Are You Hungry?

2011-07-01T05:49:00.000-07:00

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!

Gyongbokkung

2011-06-30T14:31:00.000-07:00

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

Pill Swallowing Advice?

2011-06-29T11:37:00.000-07:00

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?

Grateful

2011-06-28T17:13:00.000-07:00

"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.

The Cat Laughs

2011-06-27T09:21:00.000-07:00

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 :).

The Bubble, the Cat, and the Dog

2011-06-26T13:53:00.000-07:00

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.

Nothing to Envy

2011-06-25T15:21:00.000-07:00

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.

Pidamaya

2011-06-24T08:55:00.000-07:00

"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" ?

"South Korean Pastor Tends Unwanted Flock"

2011-06-22T15:38:00.000-07:00

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!

Ann Voskamp on "What To Sing in Storms"

2011-06-21T06:52:00.000-07:00

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.

A Message for the Holt Forum

2011-06-20T20:22:00.000-07:00

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

Situational Anxiety During Waiting in Adoption: compiled links

2011-06-19T21:34:00.000-07:00

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

2011-06-19T18:32:00.000-07:00

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

2011-06-19T09:48:00.000-07:00

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.

What if We Have Only Five More Years of Plenty?

2011-06-18T08:39:00.000-07:00

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.

iLs Update 50% through Level 1

2011-06-16T11:21:00.000-07:00

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.

Things That Are Seen

2011-06-14T19:24:00.000-07:00

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 D~~ivine 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.

On Churches Supporting Families Who Adopt Challenging Children

2011-06-14T08:56:00.000-07:00

This morning, Kari at Coffee Catharsis posted some really significant musings on the role of the Church in supporting adoption. If you don't regularly read her blog, please click over and consider what God is laying on her heart. Here's a snip:

"What does supporting a family for these children involve? Simply recruiting them? Telling them what saints they are for doing this?

And after the impact of the trauma hits....tolerating them? Giving them parenting advice?

I hear from adoptive families all the time who feel isolated within their churches. I wish I knew what to tell them. It gets tiring to keep trying to help people understand and when those who share your faith simply do not, the painful encounters eventually lead to isolation. Separation from what was once the family's source of strength..."

I don't have answers to the questions she is raising. But I wholeheartedly agree that this is a role the Church should be more heavily invested in and I'd love to be part of strategizing change. If we believe that God is the only source of true hope, why are the majority of the support services for for families adopting and/or raising challenging children based outside the church?

Surprise Favorites from our 2010-11 Home School Year

2011-06-13T18:42:00.000-07:00

As a first-time home schooler, I found the choices overwhelming: who much time would we have? What would we like to do? I knew I had three girls with three different learning styles and there would be no way to find a single curriculum that suited all of them. That was is one of the biggest blessings of home school for us: we don't have to use just one.

Math
The many programs available were a great help. I wonder if I would have liked math more as a child if it had been taught in my learning style?

Faith and I both guessed (correctly) that Teaching Textbooks (TT) would be a good fit. She doesn't love math and found the computer animation made it more fun. We also both like that there wasn't an extraneous amount of practice: just enough review plus new work to learn the concepts and advance. With two other kids to teach, I liked that the computer program taught the lesson, making math a mostly-independent subject for Faith.

Hope and Mercy both started the year with Math-U-See at grade level. Mercy finished the year before Christmas and was ready to go on. Hope stayed on pace for the whole year but surprised me by breezing through the lessons with solid comprehension. I think that means it is a perfect fit for her with its multi-sensory approach. She also learns best from me obliquely so it was great we could watch the lesson together on the DVD instead of have me teach it directly. (She is using the Math-U-See blocks to do a Calculadder worksheet in my previous post.)

The whole multi-sensory thing was lost on Mercy, though. We found she likes her math straight up with lots of practice pages because she enjoys computation. So Mercy switched to Horizons with its TWO! (she was thrilled) workbooks per year. Mercy was doing Faith's TT 5 over her shoulder every day, begging to get TT herself "just for fun." So we got Mercy TT 3 (the lowest level available), which she finds is not a lot more challenging than Horizons 2.

The surprise winner in the math category: Calculadder, a timed worksheet program which drills math facts.

I know it looks hokey. But ignore the old-fashioned factor. I purchased all the levels on a single CD so I could only print only as many worksheets as I needed. All three girls could do their drills simultaneously even though they were working at different levels and advancing at their own pace. That made Calculadder the easiest, most productive, 5 minutes of my home school day.

Art
I love art and confess to having great ambitions for adventures like making our own paint from crushed pigment and egg yolk. But after the beginning of the year, art just didn't happen except for projects that appealed to the girls and they completed on their own. (The art supplies they could not have done without: cardboard boxes, tape and blank paper.)

To call a coloring book "art" is quite a stretch. But at the recommendation of a friend who said her girls loved to color while she read aloud to them, I purchased two Melissa and Doug Coloring Pads:

Forget the sophistication of the Dover historical coloring books, which is what I had imagined my children using. Nice line drawings of butterflies or princesses or a cow and calf in a field were all the girls wanted. (There is also a version for boys.) The paper is bright white and heavy enough to stand up to markers. Think of coloring not as art but as fine motor practice!

This is what redeemed our year as "art theory and history." It was an impulse purchase on clearance at Timberdoodle, but was the most popular software in the house this year:

Price shop! I think I paid $8 and don't think you need to pay more than $15 despite the list price. My only complaint is that one of the main characters has an annoyingly nasal voice --which I listened to a lot because all three girls (ages 6-11) used this over and over again. A demo is available on the developer's website and all of us hope they are working on a follow-up edition.

Reading
It seems to be a universal problem that children who learn to read early quickly run out of age- (emotionally) appropriate literature. Our local library has hundreds of graded easy-reader titles but the plots are inane. And while Mercy liked The Boxcar Children series, unlike Faith who hit that reading level later and read every single one, Mercy could only identify with Benny; the exploits of the older sibs. (who largely carry the story lines) were over her head.

The solution for Mercy was a happy accident. I purchased a set of the Abeka Second Grade readers from a friend mostly because she practically gave them away. When I began culling our extra books for a home school book sale, the set of Abeka readers was on the top of the pile. Mercy found them and came to me with a handful of dollar bills, asking if she could buy them. "I love these books, Mom! I want to read them all and I didn't even know we had them!"

I let her keep them and for the past few months they have been her go-to books for reading on her own. Now that I have read a few myself, I can see why. The print is large and well-spaced. There are just enough illustrations to break up the text. But the illustrations are incidental; they don't supply information the child should be picking up from the words. The stories are very high-interest: folk tales from around the world, historical stories, nature stories, Bible stories. The subject matter is conservative and the stories are not emotionally loaded. The vocabulary is challenging (and above what my library would grade as second grade), but leveled by a list of less-familiar words at the beginning of each story.

The only draw-back is that in the Bible stories, Jesus and his disciples speak King James:

"How many loaves have ye? Go and see," said Jesus.

Andrew, one of his disciples, said, "There is a lad here, which hath five barley loaves and two small fishes, but what are they among so many?"

If your children will be reading the Bible in King James, this is probably a helpful introduction. But Mercy reads ESV and finds it funny that, to her way of thinking, "Jesus talks like the Puritans!"

To see for yourself, go to the online Abeka catalog, choose a grade level, then within the "Readers" click on a book for a View-Inside feature. They are a little pricey new, but used curriculum websites like Second Harvest have a good selection. It will be worth it to us to own more of these since Hope's emotional maturity lags behind her age so we will stay challenged for appropriate books for a while. I find both girls can handle more emotionally-mature books if we read them aloud. But I'm happy to have gentler (yet not stupid) books they can read on their own while they build fluency and discernment.

What Did We Do? 2010-11 Home School Year in Review

2011-06-13T11:38:00.000-07:00

Our first year of home school wasn't quite what I thought it would be. But by the time I finished writing this post, I realized we also accomplished a lot more than I guessed!

September
Our home school year started exactly as I had hoped. We found that surprising little time was required to keep up with the traditional "3Rs." So anticipating the girls' first trip the Black Hills, like prairie dogs we dove head first into stacks of books about the prairie ecosystem. Even 5th grader Faith got into the act with Mercy and Hope of designing prairie dog villages out of play dough and populating the with Littlest Petshop critters for prairie dogs. We loved the unhurried pace of the Black Hills and the Badlands in the post-Labor Day off season. "This," I thought, "is why families home school."

October
October arrived with a new family member, Faith's baby, Daisy.

And as if a new puppy wasn't enough, fresh off our practice trip to South Dakota, we fine-tuned our packing list and ventured across the globe with Grandma for an incredible ten days in South Korea.

Grandma and the girls at Gyongbokkung Palace

Hope's reunion with her foster mother.

Mercy's reunion with her foster mother

Joy's reunion with her foster mother and father

Joy's reunion with her twin sister, Amy

The amazing day we spent in Pusan with Amy's family

When we got home, home schooling accommodated our recovery from jet lag and allowed for amazing moments like this one when the wind picked up and in ten minutes' time bared every branch in the yard --at 11:00 AM on a school day. We would have missed this, I thought, if they weren't home for school.

November

The worst of the jet lag behinds us, I got to work on getting an FASD diagnostic evaluation for Hope and we resumed the books part of school, except on rare days it was so beautiful, we could not stay inside.

On those days, we majored in the biology of composting, learned where worms go when cold weather comes, and picked the late Connell Reds for our last batches of homemade applesauce.

December

It was easier to focus on lesson plans after cold weather descended and before that first amazing, deep snow. But the hands-down highlight was Joy learning to walk just before Christmas.

Mercy and Hope were also thrilled to learn to ice skate.

January

We passed a big milestone when Kindergartener Hope (on good days) started blending, read her first little book, and earned her long-awaited Library Card.

February
Mercy, who had finished a years' worth of first grade math before Christmas, started second grade Horizons math and third grade Teaching Textbooks math simultaneously --at her request. She'll finish both this fall in second grade. I LOVE the flexibility to select programs that work for me as the teacher and each child as an individual learner.

Then there's Faith. Chances are, if you stopped in, you would have found Faith doing this:

On top of the four dozen books I assigned for school (early American history), she read --or, in the case of some series, reread --more than one hundred others. Faith has always loved reading. But she's never had so much time to indulge in good books. Reading is the thing about home school she says she'll miss the most when she returns to private school this fall.

My personal highlight of the year also came in February:

Mercy helped me mail the Renville book manuscript off to the University of Nebraska Press.

March
The month of March was monopolized by Joy's surgery and body cast.

We were so far ahead on our assignments for the year that we'd didn't really "do" school (i.e. follow a lesson plan), except in math. We just kept reading books together. And of course the girls couldn't do without the extras like looking up places on the globe or "doing look-up" --research on the computer --when we encountered something unfamiliar. It taught me just how quickly homeschooling becomes part of every day life.

April
In April, Joy's spica cast came off. And six months after I initiated the process, we got our draft report from Hope's FASD evaluation. It confirmed what we suspected: that with her challenges, for the near future, home school, with one-on-one customized teaching may be the very best learning environment for her. No IEP meetings required.

In April, we also started iLs --Integrated Listening Systems --for Auditory Processing deficits in both Hope and Mercy. Mercy excels at academically and hers would have gone unnoticed if I was not educating her myself and around to put all the pieces together. Because we were already home schooling, fitting in home-based therapy took no unusual scheduling, and allows us to complete the program on the intensive schedule recommended.

May
We majored in iLs --which makes complete sense because accurate auditory processing is critical to everything from academics to interpersonal relationships. The girls all reached their math goals for the year, which signaled the end of our formal school year. However we could not stop reading books aloud no matter what the calendar said! Mercy, who taught herself to read when she was four, by the end of this school year hit a fluency level that makes it fun to read for pleasure. It is a joy to watch her loose herself in a book and choose to, for the pleasure of it.

Faith is thrilled to be headed back to private school this fall. Joy, too, will be formally beginning preschool in September at our local elementary. Mercy and Hope will stay home for school and are thrilled that our year on the wait list is over and we can join a local home school co-op (one day a week) in the fall.

Considering the stack of "enrichment" material I purchased imaging how much time we would have, but in fact never used, it strikes me that we accomplished a lot this year anyway. I am not so committed to home schooling philosophically that I can project we'll be doing it though high school. But it is nice to have the first time questions satisfactorily settled: Yes, we can do this. Yes, we can enjoy this. And yes: I expect next fall's standardized tests will show that by working at each child's own pace, we actually accomplished more than one academic year of school. However, the intangibles count even more for me. I have loved being able to spend this year learning with my children.

Caffeine Makes Me Social

2011-06-11T14:31:00.000-07:00

If I had a "strange but true" tag, this post would get it.

Some background. First, God made me a certifiable introvert. On the Meyers-Briggs I am an INFJ. That comes in very handy for research and writing. But not so handy for being a neighbor or a mom. Growing up I preferred reading books to playing Barbies with my neighborhood friends and I still do. Except now the children live under our roof and only two of my three little ones think reading books with mommy is "quality time." Hope's idea of a good time runs toward Barbie Fairies Duel Dinosaurs and Defy the Great Ball of Doom.

(Yes: in my former life I stood on principle. Four the first nine years of my parenting career, there was nary a Barbie to be found in our house. Then God gave us a daughter whose love language is "Barbie.")

Second, I don't drink coffee. Whipped cream and chocolate and caramel don't help. My favorite tea happens to be wimpy on caffeine. And for four years I have been trying to keep to the high road and not overindulge my love of Cherry Coke.

So there was not much caffeine in my diet until last fall. I was packing for my sixth trip to Korea when on-line friends mentioned how much caffeine tablets helped them cope with the time difference in country. I picked up a package, tried the caffeine tablets in Korea, and wondered how I had managed the jet lag on the previous five trips without them. Then I came home and the box went up on a shelf.

A few months later, I woke up dragging after a Full Moon sort of night. I had the beginnings of a headache, was thinking through fog, and it happened to be a day when the box on the calendar was written full of things that were not optional.

"It feels just like jet lag," I complained to my husband.

With those words, a bright yellow beam of light pierced the fog: a vision of the box of leftover caffeine tablets. I took one. The fog melted and I jumped into the first thing on my to-do list: iLs with Hope.

Mercy gamely exercises with me for the first twenty minutes of iLs because that's what the book says to do and she's a born rule-keeper. Hope, on the other hand, being so sparklingly smart, figured out by session four that she could strike a deal: she'd submit to doing iLs if I played with her the whole hour. By session six she had arranged to spend the last song (about 15 minutes) playing Barbies. Every day.

But, wait! you protest. YOU are the mom! You don't have to do everything your child wants you to do!

True. But this was the beginning of iLs when it acted like a drug on Hope's brain. Invest one hour in the morning and the whole day went better. You know how when kids need a med and won't take it straight, parents hide it in a spoonful of something? iLs was the drug and an hour of my time was the chocolate pudding.

So I swallowed my caffeine tablet that morning and got to work. An hour later I was sitting on the floor in Hope's room zooming Barbie Fairies through the air when I noticed Faith standing in the doorway with the flip videocam rolling.

"What are you doing?" I asked.

"This is more rare than the Ball of Doom," Faith quipped. "You are having fun playing Barbies. You are using voices. You are making up Barbie Stories. And you didn't even notice that Hope's iLs session must have ended five or ten minutes ago."

I looked at Hope. She shrugged, grinned, held up her hands. "We were having fun," Hope said, removing the head phones. "The music stopped back when Barbie was stuck in the elevator."

Have I gone crazy? I wondered. I usually play Barbies through gritted teeth.

No, I wasn't crazy. But whatever caffeine does to my particular brain, it lets me be in the moment with my kids. In fact it makes me say --and mean --very uncharacteristic things like, "I'm going shopping. Anyone want to come with me?"

So for about a month, I have been getting up, testing my emotional weather and judging whether this morning might benefit from a caffeine tablet. I suppose it is not far different than a coffee drinker's sense that this will be a one- two- or a three-cups by 8:00 AM sort of day.

Curiously, in just one month, I find my sense of self is subtly shifting. Even though the box tells me that by 11:00 AM at the latest, my first dose of caffeine should have completely worn off, there is a carry-over into the afternoon encounter with a neighbor at the mailbox, the ease with which I can invite the neighborhood children in to play and visit with my family over dinner at the table. I am beginning to see myself as a more social person, as a more fun mom as I slowly build a new repertoire of social successes.

It couldn't come at a better time. We're a few weeks away from beginning trials of stimulant medication for Hope's ADHD. I no longer am taking it on faith that stimulants may change the way a person thinks, feels and behaves.

"Orphan Wows Judges on Korea's Got Talent"

2011-06-11T07:10:00.000-07:00

I just got my fourth request for this video from my girls. So if you have 8 minutes, need a good cry, and have not seen this You-Tube video of Choi Sung Bong's performance on Korea's Got Talent, try this.

With thanks to my two on-line friends who recommended it!

Relationship, Trauma & Attachment

2011-06-10T13:11:00.000-07:00

It is always this way: start thinking about something and it begins popping up every where."Relationship" has been the theme of the past few months.

Several month's ago I 'fessed up that with some retooling, a secular parenting paradigm called the Nurtured Heart Approach (NHA) helped us turn a major corner with Hope. Early this year, when the psychiatrist doing Hope's FASD evaluation asked me if we had found anything that helped, I mentioned NHA. A few months ago, when we got the draft report from the evaluation, I was a little surprised to see it reported like this: "Parents have used the Nurtured Heart Approach to build attachment with Hope."

Attachment? I thought. Hope's attachment to our family after she came home actually went very well. I never really thought of NHA as being about attachment.

But the seed was planted.

More recently, I shared that after reflecting on it, I realized that we don't often discipline Hope --if discipline is defined as a punitive consequence designed to teach the child to conform with expected behaviors. Instead, I had found it more effective with Hope to proactively teach in the context of relationship.

There it was again: Relationship. Attachment.

Even more recently, I have spoken with several moms who are at the end of their rope with children who came home 5-7 years ago with a history of prenatal alcohol exposure, kids who are now displaying signs of RAD (Radical Attachment Disorder). Things have been so hard for so long that they can't clearly remember back to those early months before their child hit toddler hood and behaviors started going downhill so fast: if they ever felt attached to their challenging child. Some of these moms now feel they have no relationship other than intellectual commitment and even that is wearing thin.

That took me back to the NHA support group I attended after my husband and I received NHA training. The eight families represented all had kids either with diagnoses of RAD or with prenatal alcohol exposure. Our mentor/trainer's children had ADHD. I was too new to the subject to do more than puzzle over the evidence that this same set of parenting tools worked on kids who seemed very different to me: on one hand, kids who came to their permanent families with significant trauma histories; on the other, kids whose challenges were rooted in atypical neurobiology.

"...have used the Nurtured Heart Approach to build attachment with Hope," hit a unifying chord. Some kids in my support group brought significant trauma into the family, which in turn spilled over into trauma on the family, as well. But for the rest of us, living for years in ignorance with FASD and ADHD behaviors had created trauma that significantly strained our attachment to each other. We were living the early chapters in the lives of those older kids adopted out of disrupted adoptions.

No wonder NHA worked on both groups: we were all moving up the strained end of the attachment continuum, with the children who had RAD leading the way. NHA is only superficially about behavior management. That's the result gained by intensive work rebuilding relationship.

No wonder, then, with a painful understanding of just how easily attachment is strained under stress, I guard against disciplining in any way that might threaten the attachment we have so carefully rebuilt. We now have a shared trauma history, Hope and us. We are stronger for having healed together because we don't view it as her problem. It is our problem. Through no fault of her own, she was born with atypical neurology and through no fault of our own, we didn't recognize it or know how to cope with it.

Yet that idea sits heavily on my heart because it is not widely acknowledged how hard it is to parent children who have challenging behaviors. So we tend to struggle alone. We tend to not ask for help until we are at the very end of our rope and have exhausted every other option --and by that point, our relationship may be significantly damaged. We have not been taught that our attachment to a challenging child can be a fragile thing that we must actively nurture because that relationship is the foundation of everything else we hope to build.

A bonus, if you haven't already read it, NHA is on Kari's heart today, too.

To locate the previous posts on grace-based NHA, click on the "Faith and FASD" tag in the label cloud.

Are You Attending the 2011 Mann Symposium?

2011-06-09T14:23:00.000-07:00

Just wondering if any of you are attending this year's Mann Symposium on Childrens' Mental Health and Learning Disabilities August 9, 2011 in Minneapolis? It runs from 8:00-4:30 PM and the $15 registration fee includes lunch. I have heard great things about it from parents who have attended in past years. I'm going by myself, so let me know if you plan to attend!

Do You See a Pediatric Dentist?

2011-06-09T13:22:00.000-07:00

I've seen the same "family dentist" since long before I became a mother. So it was natural that when I had children, mine would join the others playing in the lobby waiting to see the dentist. I like her, they liked her. It worked great for Faith and Mercy.

Then came Hope. Nary a child cavity in our family until Hope's first visit, when she already had two. Hope's baby teeth, my dentist told us, were as soft as butter under thin enamel. Cavity prone. Over the next year, with nitrous oxide for anesthetic, Hope had two rounds of fillings. The third time, she simply clamped her teeth shut and refused to open her mouth. No inducements worked. So my dentist referred Hope to a pediatric dentist.

Enter Dr. Mark Moeller. (That's his real name. I don't think he had any choice but to grow up and be a dentist.) When he looked at her x-rays, the report made my heart sink. Each of her previous fillings needed to be redone. Plus she needed three crowns. Hope: my child with sensory integration issues, who is easily driven to opposition when afraid, who had vowed she'd never open her mouth for a dentist again. Not even just to look.

"Do you use general anesthetic?" I asked. "I don't think she's even going to open her mouth and if she decides that, nothing you or I can say or do will make her change her mind."

"No," Dr. Moeller answered. "I use nitrous and Novocaine. We rarely have to use general anesthetic unless the work is really extensive. Then we do that at a hospital. But I think she'll be okay."

So we tried it. I sat in a chair in the room and watched the whole thing. Nitrous, numbing jelly, then much to my amazement, Novocain. Hope didn't even flinch. She gamely laid there, mouth open while he drilled and filled and capped, the whole while telling stories about princess teeth. Four visits in a row.

Hope now has a mouth that sparkles like her favorite shoes. And all the girls now see Dr. Mark. Yes, I felt a bit guilty for defecting from our family dentist, who I still see. But I'm now a big fan of pediatric dentistry. he even interned at Gillette and knows his stuff about cerebral palsy for Joy. I couldn't ask for more.

Summer Begins

2011-06-08T17:24:00.000-07:00

The calendar says summer starts June 20 this year. But for seven years now, summer has started on June 3 for our family. On June 3, 2004, we brought Mercy home from Korea. Exactly one year later to the day, we returned home with Hope.

When I asked the girls where they wanted to go for their Family Day dinner this year, they immediately said, "Go Gung!"

October, 2010

The problem is, dinner for six at Go Gung (in Insadong, Seoul) costs about $10,000 including airfare and hotel.

So last Friday night we settled on Hoban in Eagan and discovered it is well worth the drive. It's the best Korean food we've had in the Twin Cities.

This week, our first week of the summer with full-time PCAs for Joy, has been a treat for me. We hire Joy's PCA to be a nanny for Faith, Mercy, and Hope during Joy's nap. With the mercury topping out at 103 F yesterday, the girls have spent two naps in a row at the beach at Lake Elmo and I've had a luxurious, uninterrupted two hours each afternoon for writing (which I need with only two months to go pull together the paper on Indian Hating).

Today, though, it felt like summer really started with our first truly free day. We skipped iLs, headed up to my sister's house, and spent the day playing with the cousins. We started with a field trip to the Coon Rapids Dam on the Mississippi River.

And of course, back at the house, the girls did their all-time favorite "cousins" activity: play fight with the boys' unparalleled collection of toy weapons....

while Faith and the little girls (Daisy and her canine cousin Gracie) looked on.

"Summer" will take some getting used to, as my Grandmother used to say. This is the first summer, when as a first-time home schooler, I understand why teachers need a summer break. Yet, for Hope's sake, I can already see we could use more structure (to head off last night's night terror and this afternoon drive home's melt-down) than I had planned. At least this summer, for the first time, I understand what we're dealing with. And we still have at least two more months of summer ahead of us to figure it out.

Over-focused ADD

2011-06-07T12:44:00.000-07:00

Hope has an intake evaluation for ADHD management coming up in a few weeks so I've been reading to come up to speed. ADHD also runs in my family so I'm interested. The book on the top of my pile today is Daniel G. Amen's Healing ADD, which I found four years ago when Hope was two and I first wondered if she had ADHD.

Amen discusses 6 different forms ADD takes based on brain imaging scans which correlate neurological under- and over-activity in the brain with behavioral characteristics. Why split so many hairs with an ADD/ADHD diagnosis? In Amen's clinical experience, each of the six types responds differently to a broad range of therapeutic intervention, which is logical if each has a different neurological basis.

Four of Amen's six types are forms most people would identify with ADD. Two are surprising because they don't closely fit the stereotype of ADHD: one distinguished by explosive anger and aggression, and one characterized by over-focus and anxiety. (Anxiety is a characteristic of several forms of ADHD.) This post is about that last form, the one Amen calls Type 3, Over-focused ADHD.

Mercy has anxious tendencies and is highly focused (kind of like me, even though we are not biologically related). I am not concluding that she has Type 3 ADHD. But because of my natural interest in anxiety in children I found Amen's Type 3 interesting as a reason some kids might display anxious tendencies.

According to Amen, (who removes the "H" for "hyperactivity" from ADHD because it can be misleading: some people with ADD, Attention Deficit Disorder, are not hyperactive) the hallmark characteristics in Type 3 ADD are: excessive or senseless worrying; opposition and argumentation; tendency to perseverate (get stuck) on negative thoughts; tendency toward compulsive behaviors; tendency to hold grudges; highly focused --shifting attention from subject to subject is hard; has difficulties seeing options in any situation; tendency to hold on to own opinion and not listen to others; can get locked into a course of action good or bad; is controlling and orderly and gets upset if things are not done a specific way; is criticized by others for worrying too much. (Healing ADHD, p. 101)

To differentiate this diagnosis from anxiety disorders like OCD (obsessive compulsive disorders) Amen emphasizes that in Type 3, these tendencies overlay the core characteristics of ADD like distractibility, trouble with organization, poor follow through and poor "internal supervision" (p. 110) --generally indicators of executive functioning deficits.

It is fascinating to follow Type 3 through Amen's later chapters on intervention strategies --everything from supplements to diet to medication to biofeedback and behavioral coaching --because the interventions that help Type 3 are not the same as the other 5 types. That is a strength of this book from a reader's perspective: his discussion of the 6 distinct types early in the book makes it easy to narrow it down to one or two types to follow through the rest of the book, ignoring the types that don't apply.

His discussion of nutrition is brief, but concludes (without mentioning gluten) that people with all the types (with the exception of Type 3) generally feel better on a high protein/low carb diet because of how simple carbohydrates act on brain chemistry. Amen acknowledges that medication is a cornerstone of the treatment plan for many people with ADD and discusses which types respond best to which meds. But I like how he stretches outside that box to say that in his clinical experience, meds alone may be disappointing; the best treatment is holistic.

Last, a personal observation. Hope has two diagnoses: ARND (on the FASD spectrum) and ADHD. While she's always been high-energy, her preschool teachers told me they did not think she had ADHD because, in their experience, those kids were "bouncing off the walls" and were almost always boys. Hope fit neither stereotype of a child with ADHD. Yet the more I read about ADHD, the more I think: It is the ADHD behaviors that have been so hard to live with all along. In other words, my impression has been that we were seeing the FASD, when the even bigger issue undermining the peace on our family maybe has been ADHD (rooted in FASD).

Why is that important? Only 60-70% of those who have FASD also have ADHD. In my very informal, unscientific sample of moms I know who have kids with PAE (prenatal exposure to alcohol), those kids with untreated ADHD behaviors bring us to the end of rope --to the point of seeking an FASD evaluation --much quicker than kids with PAE but who do not show signs of ADHD.

So it is much harder for moms whose kids are in that 30-40% who do not have ADHD to look at their kids and recognize other signs of FASD. Unfortunately, the FASD literature is dominated by kids who have both FASD and ADHD, and by affected children with lower IQs. That leaves me wondering how many families are struggling with the knowledge of PAE in academically bright kids with challenging behaviors who don't measure up to the FASD poster child who also has ADHD?

Read Any Good Books on the Ethics of Therapeutic Intervention?

2011-06-06T13:48:00.000-07:00

One thing I'm looking forward to: in Heaven we will have perfect bodies. No fixing required. There will be no more crying and no more pain.

In the mean time, we live on earth and God has seen fit to develop a body of wisdom in the medical community that creates options for intervention that we don't have an equally deep body of experience coping with. Like Pediatric Medical Trauma and medically induced PTSD in young children like Joy.

As recently as twenty years ago, children born as early and as small as Joy and Amy (27 weeks, one pound) didn't survive. Fifty years ago, parents of children with quadriplegic cerebral palsy were advised it was in their family's and the child's best interest to institutionalize them. In institutions --the good ones --they were cared for, fed, bathed, rolled over, pushed out into the garden in a chair on a sunny day. Children who were cognitively able were taken to a school room and taught the basics of reading, math, and art.

But major rehabilitation wasn't high on the agenda because kids with significant disabilities had no real future as integrated members of society. Some parents ignored that advice, kept their children at home, valued them as an equal member of the family and set their own agenda for rehabilitation. (Did you read the Karen books by Marie Killilea when you were growing up like I did? Hers was one of those families.)

Fifty years later, technology and medical intervention have come a long way and the incidence of long-term disabilities in children continues to increase as more and more of them survive. But there is only one book on my shelf that has helped me consider the ethics of medical intervention, Kathie Snow's Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities which is ten years old, out of print, and controversial --as you might expect when she asks us to stop and consider questions like this: just because we have the technical ability to make kids walk who would never have been able to walk 10-20 years ago, should we? She isn't talking about life-saving intervention, but "quality of life" choices. We pay lip-service to not letting our kids' disabilities define them. But how much time do we spend capitalizing on their God-given assets vs. remediating their society-defined "problems"? (It is also controversial because at the end the book, after advising parents how to advocate for their child in the special education system, she confesses she pulled her son, who has quadriplegia, out of public school in Jr. High to home school him.)

There is an ever-growing body of textbooks on medical ethics; it was one of the most fascinating classes I took in college. But I am also hunting for books that I can read while raising kids with disabilities. Any ideas?

I Must Have a Little Quiet, Please

2011-06-04T12:06:00.000-07:00

Living with the Effects of Pediatric PTSD

This series began with an Introduction to Pediatric Medical Trauma here.

We are blessed. Joy spent 98% of her four weeks in a body cast at home. If Post Traumatic Stress Disorder (PTSD) was a rational thing, every toy, every book, every room, every person (and pet) in our home should remind Joy of surgery, pain, and claustrophobic confinement. But here at home, she is fine.

Her physical recovery is going well, too. Her surgery was March 8, followed by six days in the hospital. Her cast came off April 7, almost two months ago. Aside from the scars (which she barely seems to notice) and the hardware in her thighs (which she can't tell us she notices, but we can easily feel), she is approaching her pre-surgery self. She is still rebuilding her endurance so we have not yet asked her to take more than token walking steps. We will be there soon.

But like I said, PTSD is not a rational thing.

*****

I do not have any personal experience with PTSD. But in that amazing way God has of shedding light just when we need it, I have spent the past three years living with a woman who did. Her name was Mary Butler Renville. Writing Mary's biography, I did not have to infer she had PTSD in the wake of being held captive for six weeks with her husband and daughter during the U.S. Dakota War of 1862.

150 years ago, it did not have a name. But the symptoms we have since labeled "Post Traumatic Stress Disorder" are evident in the letters Mary wrote to a pastor during her recovery. She was well-educated for her day and was a school teacher. Letters written several years later show punctuation, grammar, and conscious composition. But letters Mary wrote in the months following the war are erratic, disorganized, and spiked with statements like: "Today I am a nervous headache;" "I cannot sleep for thinking of Mary [an adopted daughter lost in the war];" "Please excuse my nervous writing... the least little noise makes me jump I dont get over being a captive yet or rather the effects of it."

Perhaps most challenging, Mary admitted, was her realization, "...I must have a little quiet from Indian callers until my nerves are stronger." That was especially difficult because her husband, their daughters, and his family were all Dakota, and his life's calling was to teach and pastor among the very "Indians" she temporarily need "quiet" from. None of these people were in the minority of Dakota people who took the nation to war. None of them were among those who held Mary and her family captive. In fact, during the war, the Renvilles were sheltered among Dakota friends who actively opposed the war and who worked from the inside to bring it to an end. Yet afterward Mary found she had an irrational fear of "Indians" in general.

*****

Joy is slowly recovering from the trauma of the surgery and her captivity in a spica cast. She is not afraid to fall asleep any more. She is not waking up crying from nightmares. She is just starting to wake up from her naps again happy instead of in tears. She likes riding in the car again. I should add: it is impossible to avoid most of these things. It is not like sleep or riding restrained in a car seat are optional. So you might say we "pushed through" these irrational fears and have seen them gradually abate.

But Joy's toleration for therapy outside our home is a different story. We have been doing the right thing (physically speaking) and have pushed through her protests and tears for two months. But her anxiety about most therapy is not getting better, but worse.

There is a pattern to her fears that even makes sense. Joy happily participates in her most challenging session, physical therapy, without protest. She could not do PT while she was in her body cast and seems to have made no mental associations between the surgery/cast experience and her long-time physical therapist.

However, Joy was unable to acclimate to a new PT or OT after she came out of the cast, and her reactions to her long-time OT (who she saw for OT while she was in the cast) are getting worse, not better. So at the very time when, from a physical point of view, we should be increasing the frequency of therapies to maximize Joy's recovery, we've gone from four sessions a week to one because her tears are saying, "...I must have a little quiet from Indian callers until my nerves are stronger."

Like Mary Butler Renville, Joy is telling us: Rational logic is not the operative force right now. You only observed my experience from the outside. I lived it from the inside. Even though I was there I can't explain why I feel this way. It isn't rational to fear people I love. It isn't rational to fear activities I used to enjoy. I'm just telling you that right now, these things are true. Right now, I need break until I feel better.

*****

So for the present, we're going to let Joy have "quiet" from the OT she irrationally fears. It isn't like we don't do OT naturally all day long at home.

As her mom, it would feel better if I didn't have to make this decision contrary to the best advice of professionals. But the truth is: a surgeon will not consider surgery optional and a therapist will not consider therapy optional. God gave Joy a historian as a mother and I will not tell you there is no wisdom in history:

Mary Butler Renville recovered, adopted twelve more Dakota children, and spent the rest of her life on an Indian reservation.

Mercy and the God of All Fishes

2011-06-03T12:11:00.000-07:00

Last night I stayed up too late reading about ADHD. It was about midnight when I finally put down my book, turned off the last light, and headed upstairs.

As I opened our bedroom door, I heard Mercy's feet hit the floor across the hall. She slides off the bed and comes down with both feet at the same time, hard. It is a sound I know well, a thud my mommy ears hear even from sleep.

*****

Mercy is a gifted sleeper. This is Mercy's Recipe for Falling Asleep:

Lay down.
Close your eyes.
Open your eyes while keeping your eyes shut and stare at the darkness inside your eyelids.
Do this for 2 minutes.
Your eyes will get so tired from seeing in the dark that you will not be able to open them.
You will sleep all night and not wake up until it is in the sevens.

This recipe is so good --Mercy sleeps so soundly --that she sleep walks. Two or three times a month her brain toes the line between unconsciousness and arousal and sends her body on some urgent mission about two hours after she falls asleep.

So last night as I was going to bed, I recognized Mercy's distinctive thump in the night. It was my call to usher the wanderer back to bed lest she tuck herself in to the linen closet or a kitchen cupboard.

*****

I stood in her doorway, eyes open, staring into the darkness inside her room.

"Mom?" Mercy asked, her voice coming from the floor next to her bed.

"Oh, honey. Did you fall out of bed?" I asked, moving into the dark.

"No," she said, her voice as clear as daytime. I could see her now, sitting on the floor, groping vaguely in the dark. "I'm looking for my fish."

Purple Fish, I thought. I must have put Purple Fish in the wrong place when we made up her bed.

"Purple Fish is in bed, honey," I assured her. "Hop back in bed and I will help you find him."

"Not Purple Fish," Mercy said. "The fish on my line. I cannot find the fish on my line."

Adjusted to the dark now, my eyes saw she was not groping at the floor. Hand over hand over hand over hand, Mercy was hauling invisible fish line into her lap. "I cannot find the fish on my line," she repeated.

I choked back laughter."Sweetie," I said taking her hands."Let's lay the fish line down. You cannot find the fish because it is too dark for fishing. I will help you find the fish in the morning."

"Okay, Mom," she said as she climbed back into bed. "Thanks."

*****

Inside, I was laughing so hard at Mercy sleep-fishing that the endorphins erased the idea of sleep. So I laid awake reviewing the day, thanking God for blessings like the effects of caffeine on Hope and K.'s taking the girls fishing during Joy's nap, giving me two quiet hours to write.

It clicked. Although they came home reporting catching 12 little blue gills, Mercy had complained that she had caught none of them. Well, I thought, at least now she will perseverate on catching no fish today, instead of how she lost her hook, bobber and some line to a snag on Tuesday.

Her dream was her personal take on Sisyphus, condemned to perpetually push the boulder uphill. Mercy was trapped at Lake Jane with an endless line of filament in her hands, hauling, hauling, hauling with no fish in sight.

*****

Tonight before bed, Mercy and I will read the story in John 21 about how Jesus revealed himself with net-bursting fullness to his disciples after they spent the whole night fishing and didn't catch a single fish.

It is amazing, isn't it? When we exhaust our best efforts and find ourselves empty-handed, God is all-sufficient.

Sin, Discipline, and a Damaged Brain

2011-06-02T07:33:00.000-07:00

Sunshine and Shadows

This subject has been on my heart for a while. But I haven't written about it because I am not a theologian so risk making some major lay-person gaffe. It also raises questions about a cornerstone principle of Christian parenting, which makes it contentious territory.

Take this for what it is: my thinking out loud, trying to figure out if/when as a Christian mom, discipline is an appropriate response to "sinful" behaviors in my child with FASD. I would love to hear how some of you who are raising neurologically impaired kids handle it.

It started with a question.

I was talking with a woman from my church who has been a teacher-mentor to me. I admire her ability to seamlessly weave Scripture into everything and the way her heart for God shines through in everything she does and says. I also admire the way she and her husband have brought up their children.

Although the question came out of her mouth, I think God put it there because he knows it has been languishing on my to-get-to list.

She and I were talking about parenting challenging children, specifically Hope, who is on the Fetal Alcohol Spectrum. The conversation turned to parental expectations. I said that one of the most helpful things we had learned was to set our expectations lower for Hope, knowing that brain damage impaired her ability to comply.

She was not challenging me but was genuinely seeking to understand when she asked the question: "So with Hope, what do you do about discipline? How do you know when a behavior is sin?"

Most of you reading don't attend our church, so I'll decode her question. In the process, you'll see why it has been so thought provoking. "Discipline" means applying a negative consequence in an instance where a parent discerns a behavior is rooted in "sin" --which I'll define narrowly in this case as willful misbehavior. The child understands the moral expectation and actively chooses to do something else.

"To be honest," I answered off the top of my head, "with Hope, I often don't know when it is sin. I'm not the Holy Spirit. With her auditory processing quirks I can't be sure she previously internalized a rule, even if she can parrot it back to me."

I did not say the next thing that came to mind because it startled me: Yikes. I rarely discipline Hope. Have I completely fallen off the parenting bandwagon??

My internal monologue continued: We're talking about invisible difference between typical and a-typical neurology. How can I make this concrete?

My eyes travelled across the room to where Joy was playing by the toy shelf and I extemporized: "It is like my expectations for Joy are different. She is four. In my classroom at church I expected four year olds to put the toys back in the basket and then return the basket to the toy shelf. But Joy has cerebral palsy. If the toys and the basket are within her reach, she can put the toys in the basket. I expect her to help and I ask her to do that much. But it would be unreasonable to expect Joy to put the basket up on a shelf she cannot reach."

"So," I continued, "lets say I said, 'Joy, it is time to put the toys in the basket and put them back on the shelf.' We have put toys away together so often that I'm sure she knows how to do those steps. But she only puts the toys in the basket. Then she crawls away without putting the basket back on the shelf."

"Hmm..." my friend said on the phone. I could hear that she was following me.

"Technically, Joy disobeyed me," I concluded. "But it was foolish of me to ask her to do something she cannot do. I set her up for disobedience with my unreasonable expectations."

It's the same way with Hope. I avoid power struggles and the need for what might otherwise be unremitting discipline by keeping my expectations reasonable. "Reasonable" is unique to each child. For Hope it means she that she has previously shown me she has internalized the desired behavior."Reasonable" also means I consider how she is doing in this moment because her ability to comply varies considerably. I try very hard to not ask her to do more than I am certain she can do.

You might say I go out of my way to avoid needing to discipline her. But that is the truth. Her neurology is not typical. She generally does not learn from discipline. So the main points of traditional discipline --training a child in the way he should go and restoring right relationship --are lost on Hope. The way she learns is from consistent repetition in context and in relationship, not from negative reinforcement.

You can see why it is easy for outsiders to scratch their heads: our kids with neurological differences regularly are on the edge of out-of-control and we parents do not respond with discipline, but rather with what appears to be toleration and permissiveness, in the voice of a preternatural kindergarten teacher patiently explaining the rule again.

But I digress. Theologically, sin is anything that transgresses God's holiness, or as Wayne Grudem defines it in Systematic Theology, "Sin is any failure to conform to the moral law of God in act, attitude, or nature." (p.490)

God does not leave us in the dark about his moral law. It is written on the universe for even non-believers to see. (Romans 1:19-20) God's holiness is one of the major themes of the Bible, and in some cases, the Bible makes the right response explicit, as in the injunction, "Children, obey your parents in the Lord for this right." (Ephesians 6:1)

Hope has memorized that verse and she can even explain what it means. But her ability to comply, or using Grudem's word, to conform, is less than age-typical. So the same way I do not expect a two year old to comply with more than basic requests without help, I have reduced my expectations for Hope's independent obedience to a level I know she can comply with. Then I can use that Bible verse to praise her obedience, instead of disciplining her for falling short.

It doesn't mean there are no consequences for her behavior, or no restitution. That's something I'm still figuring out and am sure it will show up someday in another post.

So what does this mean? In not disciplining her as frequently as her behavior might indicate, am I tolerating sin? Conversely, if I set her up for obedience am I helping her not to sin in that moment? Those questions are too theologically deep for me to answer.

But I know this: in one very real sense, it doesn't matter in God's eyes. Even if Hope never committed one sin of commission or omission in outward behavior or inward attitude, she would still be, as Leslie Fields put it, "in severe need of this glorious and merciful Savior." Hope's human, inborn sin nature (Grudem calls it "inherited corruption"), doomed her to eternal separation from holy God at conception --before her mother took her first (unwittingly pregnant) drink. (Psalm 51: 3-5)

Hope needs Jesus for the same reason the rest of us do: we are inherently sinful even on our very best days.

Kids with FASD are sinners just like kids without FASD. One difference, it seems to me, is that due to their neurological impairments, they are not good at faking righteousness. What you see is what you get. If God tallied sins, his daily total would probably mount no higher for Hope than it does for Mercy, who is internally motivated to outwardly comply. But God sees the heart of both girls. He knows when Hope is responsible for her impulsive behavior or lack of compliance, and he knows when Mercy silently grumbles about fairness while outwardly conforming to expectations.

Hope is no more in need of a Savior than Mercy is, even if Mercy's style of sinning is a lot easier to live with. They equally need Jesus. Jesus can't be earned by behavior. He can only be had by faith. I feel like that needs to be my main message inside my family, not "I am your loving authority and it is my high calling to discipline you into righteous conformity."

If there is a silver lining to raising children with permanent brain damage like Hope and Joy, it is that it has the effect of casting me more fully on God and his grace. When one of my neuro-typical kids shines a bright burst of gratifying behavior, I might be tempted to think that it reflects favorably on our parenting. But I have been blessed with two who are typical and two who are not so the truth is obvious: None of it is about me. All of it is about God.

"For by grace you have been saved through faith.

And this is not your own doing; it is the gift of God,

not the result of works so that no one may boast."

(Ephesians 2:8)

It may be that erring toward not disciplining in favor of teaching, relationship-building, and logical restitution is not the best strategy over the long term. After all, Hope is only six. She has shown that with time and lots of repetition, she is capable of learning. As time goes by, her repertoire of things for which we can reasonably hold her responsible will grow. Then I'm sure my husband and I will be revisiting this territory.

As I said at the beginning, I would love to hear how some of you who are raising neurologically impaired kids handle issues like this, even if you disagree. I am much more interested in learning to raise my children in a way that honors both God and the way he made them than I am in being "right." Comments are welcome. Or if you have blogged about it or want to, I am happy to link your posts.

A Little Fish Story

2011-06-01T17:23:00.000-07:00

In honor of Nana's safe return from her "adventure" to West Virginia and Grandma and Grandpa's impending trip to South Dakota, here's a little fish story from Lake Jane.

Why Lake Jane, you ask? Because Mercy read a chart produced by the DNR to determine the closest lake with the highest population of fish.

She was right. The chart said nothing about the size of the fish.

Parenting is Not My Highest Calling, Part II

2011-05-31T13:19:00.000-07:00

Parenting is Your Highest Calling and 8 other Myths That Trap Us in Worry and Guilt

by Leslie Leyland Fields

WaterBrook Press, 2008

We were not so much trapped in "worry and guilt" as were trapped with a small box of parenting tools ill-suited to the job at hand. Between our parenting education and raising Faith and Mercy, parenting was something like being apprenticed in furniture restoration. Then God blessed us with Hope. Having some experience refinishing old chairs barely prepared us for rehabing the Victorian house that was our third child.

We struggled for three years to make the tools in our toolbox work, convinced that the parenting wisdom we had been taught was biblical and convicted that God's Word was perfect and sufficient for all things. But, as Fields points out, acknoweldging the truth in cherry-picked Bible verses (Psalm 127:5-8; Psalm 113:9; Proverbs 22:6; Proverbs 29:17; Luke 2:51-52) is not the same thing as rooting a parenting philosophy in the full counsel of Scripture.

The tragic thing was that Hope was a gift to us from God. But it took us three years to acknoweldge or accept that as true because our hands were so tighly clenched around our familiar parenting tools. Fields's book was probably no more than musings on her heart at the time my husband and I abandoned our too-small tool box. Had it been in print, it would have freed us to let go and encouraged us to reconsider the foundation of Bible-laced-human-wisodom we'd built our parenting upon.

You can read the Introduction to Parenting is Your Highest Calling and 8 Other Myths, on Leslie Leyland Fields's website, here. Fields comes to parenting as the biological mom of six, including two "surprise" children born in her forties. Her personal experience includes neither adoption nor (that she disclosed) special-needs parenting. Yet just as you'd expect from an author whose main text is the Bible, the ideas she raises span the full gamut of raising children, no matter how they joined your family or whether their challenges arrise from sin, temperament, neurology, or all the above.

For the balance of this review, I want to let her words speak for themselves.

Describing radio interviews she did for her book Surprise Child, Fields writes: "I would begin the interview by describing the emotional terrain of unplanned pregnancy.... Then the radio host would inevitably ask, 'And now aren't you so happy you have those children? Aren't they blessings from God?' Yes, every one of my children is a huge blessing.... But these questions are mostly irrelevant. Even if my children had not brought me happiness, they would still bear the image of God, they would still be created by God, and they would still be of infinite value. It is not the state of my feelings that determines their value. Their value is found in the God who made them." (Parenting... p. 21-22)

"Here is my own confession. I wonder how much of my hopes for my children's happiness are hopes for myself. If my children are happy, then my parenting life is quieter and less complicated. I find myself falling into this trap more often than I wish." (Parenting... p. 80)

"Pursuing our relationship with God before anything else frees us to see each child in her own uniqueness rather than squeezing our children into a prefabricated mold. It frees from us from the expectation of total control. It frees us from unbiblical promises of sure outcomes. It frees us from seeing our children as products rather than people.

At the root of all of this, we need to choose to give up the quest for an expedient parenting life. The only perfect parent --God himself --led a parenting life that was anything but expedient....The Old Testament reminds us of the truth all parents live with every day: every child arrives as a fearfully and wonderfully made creation with a steely will and heart and mind bent toward serving self. Considering our children's ability to make choices, their God-given uniqueness, and their sin-damaged hearts, how can we reduce parenting to an efficient one-size-fits-all program that will make life 'easy'?" (Parenting... p. 117)

"And when my own servant's heart is emptied, as it often is when I stand among my family's continual needs, I am reminded that I cannot be Jesus; I can only need Jesus. In the times when I feel as though I fail most --when I dissolve before my children into anger and helplessness --he covers and forgives my exhaustion, sin, and limitations. He teaches me that his own work in my children's lives is not dependent upon me, that even in my weakness I am living out before my children the most essential truth of our lives: all of us are in severe need of this glorious and merciful Savior." (Parenting... p. 143)

To return to my question last week in How Do We Prepare to Parent Kids With Disabilities, "Are there ways we can help those coming behind us do it better --or at least, with a learning curve a little less steep?" I would answer to Christians: start with a book like Fields's that will help you reflect on and re-order your parenting priorities. Then you will be free to see and to accept the gift God holds out to you.

Part I of this post is found here.

Parenting is Not My Highest Calling, Part I

2011-05-30T17:49:00.000-07:00

Katie said it so well in her comment on How Do We Prepare to Parent Kids with Disabilities:

"Really on the first day of training there should be a reality-check lecture. 'Adoption is a ministry. It's not the same as building a family. There are children who need you but they may not ever meet your expectations for fulfillment. Are you still game?'"

It almost isn't fair to hark back to the days of my own adoption training in 2003. That was almost nine years ago and my agency probably does things differently today. It is probably also true that during those early years that shaped how my husband and I viewed adoption, our hearts were only open to hearing things we were ready to hear. We wanted to find our desire to adopt affirmed. We wanted to hear that transracial adoptive parenting was "doable." That it would be good for our family, and good for the child we were adopting.

So take it with a grain of salt when I say, the main message I remember taking away from my formal agency training was, "Adoption is a wonderful way to build a family" --with a few strings attached:

transracial adoption is trickier than racially-matched adoption
toddler adoption may be more challenging than infant adoption
adopting an institutionalized child may be more challenging than adopting from foster care

The only issue I remember that made us search our hearts about our decision to "build our family via adoption," was the possibility of RAD --radical attachment disorder. That era was RAD's moment in the research spotlight, before it was widely understood that attachment is a continuum. So we were prepared for an initial adjustment period of bonding with our new child and vice versa, but took comfort in the statistics that showed that the children we were drawn to adopting were not at high risk for RAD.

However, before we became the parents to three more via adoption, we became Faith's parents by birth. In retrospect, our preparation for parenting in general led us farther afield than our adoptive parenting training. That part of a family's story is probably unique, making it difficult to generalize. But here's my story.

Inwardly, I cringe a bit as I travel back to the early 1990s and remember the faces who looked back at me as I passed out the parenting class hand-outs at church. (I wasn't a teacher. I wasn't even married yet. I was simply in charge of the name tags, cookies and handouts.) The faces looking back at me were couples I admired and hoped to emulate someday: the early wave of transracial adopters in our church. Parents, or soon-to-be parents of beautiful African American babies born in the South and placed in Minnesota.

I sat in the last row and absorbed what those parents absorbed. Dreaming of being a mother someday, I read the books the handouts suggested. As intended, those authors had formative influence on how I conceptualized Christian parenting. Many of those parents who sat ahead of me in class also reached the point I am today a decade or more ago: parenting adopted kids with invisible developmental disabilities like FASD. Others are parenting children born to them with permanent disabilities.

This is how we equipped them. Back then it was widely believed --even by adoption professionals placing kids born in the U.S. --that nurture trumped nature. So the dysfunction of parents in the U.S. placing children for adoption was thought to be a reflection of the way the parents were raised, not of anything organic like brain damage. The solution was to transplant orphaned children into highly functional families who would biblically love and train them into their latent potential to be kids who shattered stereotypes about what it meant to be a racial minority, to be born into poverty, and to not know Christ.

Christian parenting books exhorted us that raising children for God was our highest earthly calling. The formula was: consistently apply biblical parenting principles and your children will be a delight to you and to others, thus bringing glory to God. Arguing from the Bible, these authors reasoned that if kids did not turn out well, it was because their parents did not make raising them their highest priority, and/or they depended on sources inferior to the Bible for wisdom.

Lest we be confused about what that meant, these experts stretched far beyond actual Bible texts like,"Bring up your children in the nurture and admonition of the Lord," to specific details like the schedule on which parents should feed infants, and to prescribe daily intervals where the baby was left alone in a playpen or crib. Thus a child would learn from her first days that she was not the center of the family universe and that her parents, standing in God's stead on earth, were her authorities. Anything else was less than biblically loving.

There is little room in that philosophy for:

"There are children who need you but they may not ever meet your expectations for fulfillment."
There are children who need you who may seem to dishonor the God you love.
There are children who need you who may physically or emotionally harm your other children.
There are children who need you who may cause others to revile you.
There are children who need you whose behavior may disqualify you from being a teacher or an elder.
There are children who need you whose needs will forever change your home, your job, your other children's education and your relationship with your spouse.

The problem is not that the Bible is insufficient. The problem is not that God is limited. The problem is that in the church, we have made many inferences and suppositions about parenting that are simply NOT biblical. We have presumed that God chooses to work via the same means, to the same ends, the vast majority of the time, and that the formula is as transferable from family to family as the Bible itself.

The western church has made a welcome course correction toward the biblical call for adoption and toward the meaningful inclusion of children and families with disabilities. But we have been slower to adjust our parenting paradigm from our old frame of reference where the vast majority of children were born into believing families (where, for example, the rate of alcohol consumption and mental illness are statistically lower) and were not traumatically separated from birth family and birth culture. It was a time when a developmentally disabled child might be born into a large church a few times per year. Now, via adoption, church families bring them from the far ends of the earth to church by vans full every week.

Exhortations like, "Parenting is your highest calling" have out-lived their day --to be expected for an idea that carries only the ring of truth.

I am thrilled to be able to do more than observe that there is a need for the church to do better. A faith-filled book already exists to get the conversation started. Leslie Leyland Fields's Parenting is Your Highest Calling and 8 Other Myths That Trap Us in Worry and Guilt (WaterBrook, 2008) will be the subject of my next post.

Because some of you have already read it, you know how much Fields's myth-busting matters. She does not hold out an ideal about parenting, but points us instead to the eternal Truth:

Blessed are those whose deepest fulfillment is found in God.
Blessed are those who God leads to see beyond present circumstances to eternal purposes.
Blessed are those who know what it means to "love your enemy and pray for those who persecute you." (Matthew 5:44)
"Blessed are you when you are reviled for my name's sake." (Jesus in Matthew 5:11)
Blessed are those who are humbled under the mighty hand of God, trusting that at the right time, He will exalt them. (I Peter 5:6)
Blessed are those who are protected from laying up treasures on earth. (Matthew 6:19-20)

We're Not on the Fringes Anymore

2011-05-30T07:22:00.000-07:00

Yesterday, John Knight, who blogs at my church's disabilities blog, The Works of God, reported on a study in the June 2011 edition of Pediatrics, summarized on WebMD. (The abstract of the article is here.) New figures from the CDC show that one in six children in the U.S. are living with a developmental disability, a rise of 17% in the past decade.

This summary highlighted the significant rise in autistic spectrum disorder or ASD diagnoses up from 0.2% to 0.7%, an increase of 300% between 1997 and 2008. The more startling truth is that a May, 2011 report on a recent prevalence study of autism conducted in South Korea indicated that one child in 38, "had some form of autism, including the more mild social disorder known as Asperger's Syndrome." By comparison, it stated the current reported rate of autism in children in the U.S. is one in 110: 1 in 80 boys and 1 in 240 girls.

This study does not suggest that Korean kids are as higher risk of autism. Rather this study headed by researchers at Yale, studied a broad demographic of 55,000 Korean school children ages 7-12, specifically including children not enrolled in special education programs, and concluded that actual cases of ASD are significantly under diagnosed all over the world.

The Pediatrics report also noted that 9.5% of boys and 3.7% of girls in the U.S. now have an ADHD diagnosis. Both reports emphasize that the actual incidence of children with some developmental disabilities may not be increasing, but that with growing awareness of the importance of early diagnosis and intervention, diagnoses may be increasing, especially among children on the milder ends of the spectra.

However, in some cases, the increases may actually reflect higher incidence as society-wide factors push more children into the high-risk category. One of these is the trend of women in the U.S. waiting until later in life to have children, which is linked to an increase in infertility treatments and pre-term birth. For example, premature birth is the #1 cause of cerebral palsy (among the developmental disabilities reported in the Pediatrics study) in the U.S.

Adoption doesn't "push" children into the high risk category for developmental disabilities. But because children placed for adoption in the U.S. and Internationally generally come from hard-start backgrounds, the incidence of developmental disability in the adoption community, it seems to me, is likely higher than the one in six children in the general population. So those of us raising older adopted kids with developmental disabilities may be far from the fringes. We may represent the leading edge of what is becoming as ordinary --where I live in the Midwest :) --as having a child on the blond hair spectrum.

That brings me back to our collective recent musings on how to help prospective adoptive parents better prepare for the eventuality that their decision to adopt may lead them into the world of parenting kids with developmental disabilities, whether or not that is their intent.

"Goats" and Other Adventures in Language

2011-05-28T14:51:00.000-07:00

About two months ago, we began giving Joy a DHA supplement in the form of purified strawberry flavored cod fish oil. It tastes only very mildly fish-flavored and she drinks it in her juice without complaint. The past four weeks we have seen an explosion in her expressive language.

For example, last weekend she was playing about ten feet away from me. She was talking to herself, mostly babbling, that resolved into this."I wash hands.Water wash clean. Pizza. I eat pizza. Cheese pizza good. I eat ice cream. Mmmm. Ice cream good."

I glanced at my watch and my first thought was that it was too early for lunch. Then I remembered her day had started an hour early. So I asked, "Joy, are you telling me you are hungry? You want pizza for lunch?"

"I want pizza," she answered.

*****

This morning I announced we were going to the zoo. "Do you want to see the monkeys?" I asked Joy.

"Monkeys," Joy echoed, then asked, "Chickens?"

"Yes," I assured her. "We will go to the farm and see the chickens, too."

*****

In the zoo parking lot, as I was buckling her into her stroller, she said, "Go see tigers! Go see tigers!"

The tigers were sleeping in the grass, almost impossible to see. But we saw an Amur Leopard.

*****

The Minnesota Zoo has some unusual animals, like these Tankin. The word "Tankin" is not in Joy's vocabulary, so she substituted the very acceptable,"Goat!" (They look remarkably like the goats in "Three Billy Goats Gruff.")

Joy saw plain old (well, young) goats, too.

*****

Joy's not the only one in love with language. Mercy and Hope are on a Dr. Seuss jag and the zoo was strewn with bronze statues of Dr. Seuss characters, like my favorite, the Lorax:

*****

This morning, my husband observed, "I think I know what Joy wants to be when she grows up."

"What?" I asked.

"Listen," he said.

Joy was laying on her back in her playroom hawking, "Jeep for sale! Cheap! Jeep for sale! Cheap!"

*****

Blogger Comments

2011-05-27T14:42:00.000-07:00

Here I thought it has just been a quiet week :).

Just to let you know I'm not ignoring you....

Blogger has been aware since Tuesday 5/24 that the Comments feature isn't working for some blogs. Apparently mine is among them. I haven't received any comments since 5/22. I tried the only "fix" suggested on Blogger's Help page, apparently to no effect. Hopefully they'll repair it soon.

Thank you for reading even if, temporarily, you have to keep your thoughts to yourself!

Update on Amy

2011-05-27T09:38:00.000-07:00

Thank you so much for praying for Amy! She left the hospital today and SeonKyoung updated her blog with photos. I can telll from the return of Amy's million-dollar smile that she is feeling much better! You can see why anyone would cross the world, or in the case of Amy's family, cross equally wide social barriers to adopt Joy and Amy. God has blessed both our families and we are so grateful that he allowed us to find each other.

As adoption from Korea becomes more and more challenging for families living abroad, I pray that Korean families like Amy's continue to be led to see children like Amy as the treasures they are, and to welcome them into their families. Lord, make it so!

It Wasn't the Full Moon

2011-05-25T12:40:00.000-07:00

Last week, awful as it was, turned on a bright little bulb in my understanding FASD.

Tuesday night, I escaped to a board meeting. I had only Monday and Tuesday under my belt and I was already glad for the excuse to cut out for an evening of adult conversation.

I rode with a friend. On the drive home, she said, "Wow. That is an amazing moon."

I followed her gaze and saw rising above the trees, a perfect pumpkin of a moon: huge, full, peachy-orange. In autumn in our latitude, we call it a harvest moon.

"Well, that explains it," I joked out loud before remembering I was with one of my normal friends.

I have a few friends like that: people who don't live in this netherland of disability parenting. People who don't know the tribal lingo like, "Today was another Monday," or "There must have been a full moon."

"What explains what?" she asked.

"The full moon," I said."When your boys were little [they are now adults] did they get crazier the nights there was a full moon?"

"You mean crazier than everyday boy crazy?"

"Yes."

"No. Not that I never noticed." My friend paused a moment. "Does something happen to your kids when there's a full moon?"

"Um, hm," I affirmed. "It is only half a joke. On nights when there is a full moon nobody sleeps. And the days before and after are crazier. It's been one of those weeks already. So it makes sense that there is a full moon. It is folk wisdom: Maybe it is true. Maybe it isn't. It's just something my mom friends and I say to each other when our kids are having a really hard time."

To her credit, she didn't laugh. You see, sometimes it actually helps to be stuck in the 19th century, like she and I are. Those were the day before empirical anything. Old-country immigrants swore by remedies like wrapping a slice of moldy bread around an open wound for healing centuries before scientists discovered a substance in the mold they called penicillin.

*****

Wednesday. Thursday. Friday.

Hope's behavior slid downhill all week. I didn't really need a full moon for explanation. My husband was out of town on business and because he and Hope have a very special bond, days and nights when Daddy is gone are always harder.

In fact, my husband's trips inspired Faith to create a bit of family code. Faith and Hope share some personality traits and on days when Hope is functioning better, they have fun. But on days when Hope is having a harder time, she is easily provoked by Faith.

Tired of mediation above and beyond the norm, one night after Hope and Mercy were asleep, I told Faith, "I need you to come up with a bit of code you can easily remember. Something I can quietly say out loud as a warning that Hope is having a hard day and to help me keep my sanity, I need you to go out of your way not to provoke her."

Faith thought for a moment. "How about 'chestnuts in the refrigerator'?' Like 'Today we have chestnuts in the refrigerator.' Or, 'Today we have lots of chestnuts in the refrigerator.'"

"Chestnuts in the refrigerator?" I repeated. "I don't think anyone would guess that. Not even me. Does it mean something to you?"

"Yep. I first ate them in Korea. To me, chestnuts are Korean nuts."

*****

Saturday.

Daddy was home. Hope had slept unusually well. It was the first morning in a whole week we didn't have chestnuts in the refrigerator.

Hope presented herself to me at my desk to show me her loose front tooth, her first, which she has been maddly wiggling for weeks. "My tooth is stuck, Mom," she complained. "It was wigglier when daddy was gone. Look."

Hope opened her mouth wide. I gave it the obligatory look and wiggle, gestures as thoughtless as kissing owies makes them better.

"Wow!" I said, suddenly very sincere. "You have got to see this. This is too cool." Hope's face lit up. As the third child in the family she has felt a little slighted on loose-tooth wonder.

I took Hope by the hand and trotted her upstairs to the bathroom mirror. "Look," I said. "Today you have two rows of front teeth!"

'Oh, WOW! Are those my grown-up teeth?" She pointed to the two big teeth protruding behind the first two baby teeth she ever cut, the two she has been wiggling incessantly. "I look like a shark!" she said, clearly elated.

*****

So there you have it. It wasn't the full moon. And it wasn't even mostly because Daddy was gone. It was because Hope was teething.

Her first two big teeth did not come up into spaces vacated by baby teeth. They carved their way through gum tissue just like they did when she was a baby. And between her sensory issues and her emotional immaturity, cutting new teeth affected Hope the same way teething affected all my babies: inexplicably crabby, irritable, sleepless, melting down at every disappointment, gnawing on everything in reach (including, last week, her sisters). Except that because she is six, teething never occurred to me.

Today, I am a wiser mommy.

The Unforeseen Costs: In-home help

2011-05-24T14:29:00.000-07:00

For those of you who like to read a series in serial order, I apologize. Life keeps getting in the way of writing. This is turning into an occasional-installment series on the unforeseen costs of special needs adoption. In this post, Part 4 in this series, I want to cover the costs of personal care attendants, or PCAs. There are obvious costs, like salaries and taxes. And there are not-so-obvious tolls on family life as you might have imagined it.

For the first year and a half after Joy came home, we did without PCAs. I wasn't keen on the idea of having someone in our home, and with Hope and Mercy both gone at preschool every morning and Faith in private school, I had time free every day I could devote to Joy.

Joy was young. She came home at 13 months with the developmental skills of a two month old. She had no mobility and for a while, the only things she could do without help were lay on the floor and bat at toys suspended over her head; lay propped on her side and bat at toys on the floor in front of her; or sit in a Bumbo propped up with towels.

Understanding English was the major thing on her cognitive agenda and while baby toys could not teach much beyond teach cause and effect and problem solving, you can see that is exactly where she was "at" developmentally: 10-12 months behind her chronological age.

Within months, it was clear to us that Joy's cognition was developing faster than her motor skills. At the advice of her therapists, we pushed her to do motor tasks she could not perform on her own to facilitate her cognitive development.

As time went by, we became more and more convinced that to maximize Joy's cognitive potential in these early years where her brain is actively making lots of new synaptic connections --neural pathways that potentially could create work-arounds for the damaged areas --we simply could not leave her to her own devices in play all day. Except when we're pushing her to do something challenging that she doesn't want to do, Joy is a very content, happy child. At the age she was in these pictures, she would have played happily for hours with two objects she could bang together, listening to the noise.

We had three therapists we saw once a week who were choc-full-o-ideas. Great ideas. Developmental ideas. Challenging ideas. No one ever said, "You are not doing enough." But measuring Joy's slow progress, I could see the gap between Joy and her age peers growing. In the end, what finally got me to agree to hiring PCAs was my own sense of guilt: that no matter how much time I spent working with Joy during her waking hours, it wasn't enough.

Enter PCAs. For a little over two years now, we've had PCAs coming in to work with Joy five hours a day during the week, and eight hours a day during the summer. Their basic job description is to help Joy do things she can't do independently. Has it been worth it? I think so. I like seeing that even though her old favorite toys are still favorites, she gets bored and wants to read books or do puzzles. As she showed us yesterday in the computer lab, she can do a lot more than bang blocks.

There are several other ways families use PCAs and other in-home help. In the case of kids who have FASD and other developmental disorders that result in challenging behaviors, a PCA is behavioral management support: an extra set of eyes, ears and hands to help redirect and de-escalate behaviors; to help run interference between the child and others like siblings and neighbors; to be the child's "external forebrain" and help compensate for executive functioning deficits. Some kids with complex medical needs also require skilled nursing services in-home.

The common denominator is that at some point, parents feel like even their best is not enough to adequately meet their child's needs. So they call in reinforcements: in home help. A few generations ago, most children with Joy's level of disability were institutionalized for life. But as a society, we've decided that it is better to help children with disabilities remain in families whenever possible. So our tax money funds, among other things, in-home care services.

What do PCAs cost? Ours must be in this for love of Joy, not the money, because they make $12 per hour. On top of that, we pay an administrative agency 40 hours twice per year for managing hiring, payroll and payroll taxes. The agency collects the funds payable to Joy under MA, our secondary insurance. (At our income level, we pay in as much as we are currently collecting out. So this means that we are paying for Joy's PCAs, not the government.)

Assistance programs are set up to offer families choices. As we discovered, they might not be meaningful choices. But at least they are there. When we were investigating whether or not we wanted to enroll Joy in MA (Medical Assistance, which is the door to in-home services), our social worker mentioned a flexible spending option that sounded good to us. We'd be given a fixed amount every six months and would have to budget how we spent it among allowable options. Some examples she gave were: hiring PCAs, paying ourselves as a care-giver, hiring house cleaning help and buying adaptive equipment.

We spent a year in that particular program. Of the options given us, it made the most intuitive sense. Our county administered it efficiently so it worked well. The only draw-back was that the amount allotted to us was only about 35% of the value of taking Joy's qualifying service hours in straight PCA time. And with the budget-deficit driven cuts to the program triggering a hefty increase in our premium, the state would be asking us to pay in more than twice what we were getting out under the flexible spending program. We could only hope to approach the break-even point if we switched to the straight-PCA time option.

On the surface, it sounds wonderful to be offered 65% more PCA time, right? How could Joy not benefit from having someone work with her twice as often? Or so I tried to convince myself as we switched programs. That was the summer I learned about what my friend Julie so aptly calls the fishbowl phenomenon: the psychological toll of having other adults routinely inside your home, what is typically the most intimate sphere in your life.

This will be no reflection on the people you may hire to come into your home. We love every one of our PCAs and if we didn't love them and how they work with Joy, they would not be here.

That's actually another unexpected thing: the uncertainties of knowing whether the person you advertise for, who interviews well, and whose references check out, will actually have meaningful rapport with your child or not. When they don't, unhiring them. Or if the person you hired in May to start in the fall, will forget to tell you she got married and is moving away so isn't available after all --two weeks before she was supposed to start.

Having staff also obligates you become your own personnel department: managing hours worked, submitting payroll, staying on top of employment applications and seasonal work calendars. It's one of the chief ironies of assistance programs: that the staff you hire frees you up to administer your part of the system. But I don't get paid for doing this. Instead, our employment company collects the administrative fees allowable by law.

The positive side of all of this is that one day when the paperwork burden seemed unusually onerous, I stopped and tallied people. Even through the days of the rotten economy, Joy helped keep 27 people employed. Three of them worked in our home. The other 24 are those I know (among many more I've never met) in the enormous bureaucracy required to administer assistance programs that help keep kids like Joy at home in their families where they belong.

Joy's First Visit to Simon

2011-05-23T16:33:00.000-07:00

This morning, Grandma and I took Joy to the Simon Technology Center at PACER in Bloomington, where Joy had fun trialing preschool programs and alternate computer interfaces.

We thought Joy was ready because in free play at home, she is choosing to do increasingly complicated things, like puzzles that don't have lights or music --just the old fashioned kind where the satisfaction comes from knowing you did it. In this picture, she crawled over to her shelf, pulled down the first puzzle, and said "All out," meaning she wanted them all out at once. So I helped her get them all out.

While it may look babyish to see a four year old laying on her tummy on the floor, this is actually Joy's best position for play. She can get herself from one thing to the next by army crawling and the floor supports her trunk so she doesn't have to, leaving her arms free to play, not prop up in a sit. She also has perfect head control in this position because she's freed from the work of holding her trunk erect.

Joy's delayed gross and fine motor control limits the kinds of puzzles she can do on her own. But you can see she's very proud of almost getting the green oval back in the right spot (oval is a hard shape to seat perfectly) and is about to do the red rectangle. In the puzzle next door, she also has the grapes and the bananas back in the right places, even though her limited ability to rotate her wrist makes it hard to get asymmetrical shapes fully seated.

The problem continues to be that the toys that are accessible to her physically are below her cognitive level; conversely, most toys at her cognitive level presume physical skills she does not have. We've been hoping the solution lays in computer technology.

Going into the Simon Library, we were interested in trying an iPad (which I'm sure we'll eventually get). We don't own an iPad and it was great to be able to try one pre-loaded with preschool apps. for free. But we came home with an accessory that converts any computer screen into a touch screen because while Joy played with the iPad, she could more easily play the touch screen games which required less precision.

She was engrossed and talkative, two sure signs she was having a lot of fun. Here, the program prompted here to choose "Red." This was an oversized monitor and it took her a few minutes to get used to reaching up to the very top of her voluntary range--hence my hand under her elbow.

She figured out she could reach better if she put her left hand up, too, and leaned forward. But it confused the touch screen about her choices. In this picture, though, it correctly sensed that she had picked "square" as prompted.

It took her only a few minutes to figure out that touching the screen caused something to happen. In this game, the next letter in the alphabet would appear each time she touched the screen. When I prompted her, she could verbally predict what the next letter would be.

In this game, the little girl asked the clown for 10 balloons, who blew them up one at a time: one touch, one balloon. Joy loved watching the balloons inflate and float over to the girl's hand and waited for each balloon to be finished before she touched the screen asking for another one.

Although I wasn't thinking of this morning as a test, all the games were new to her and Joy had about 75% accuracy choosing colors, shapes, letters, and numbers as prompted --despite the fact that the motor coordination required to do so (touch the screen in a limited area) was new to her. So now we know we can branch out into odd shapes like "crescent" (Joy didn't recognize the word and called it "moon"); secondary colors, and can start working more on numbers --both recognition and correspondence. She surprised me by appearing to know the symbol and number of objects corresponding to 1-3.

The touch screen application will be wonderful for her eye-hand coordination because the only way for Joy to get the right answer is to use her gaze to direct her fingers to the right spot on the touch screen. In this photo, she reached for the right shape, but didn't correctly gauge how far her hand was from the screen. So her fingers almost didn't touch the shape.

She's always been hard to test because she was good at indicating choices by glancing for so long before she could reach or verbalize that she's never fully given up indicating choices with her eyes. Presented with pictures of three shapes, and asked to point to the square, Joy will glance at the square, and echo "square," but her gaze will be elsewhere by the time the time her hand makes it to the table in the vague vicinity of the square. On a test, that doesn't count. But in the short time she spent at the computer this morning, I could see her figuring out that she had to look at her target until her hand completed the touch.

For a $50 per year membership to PACER's technology library, we can check out equipment and software for up to a month at a time. They'll even send it to us postpaid (we pay to mail it back) if it isn't convenient to drive to Bloomington to return and to check out new items. So we came home with a touch screen interface for our laptops, and two software titles to play with.

The plus of the iPad is that so many children's book titles are available. But the iPad requires a bit more coordination to use. The touch screen on the computer works much like a mouse click. But an iPad uses clicks and double clicks and right drags and left drags; the active command corners must be avoided. I bet within a year Joy will be to do all those things. And I think the touch-screen computer will help her develop the touch-precision to be able to uses an iPad by herself and read books to her heart's content any time she wants to.

If you live outside Minnesota, this link will help you find the technology lending library closest to you.

How Do We Prepare to Parent Kids With Disabilities?

2011-05-22T17:20:00.000-07:00

Dorothy wrote a classic post this afternoon, Island or Oasis...Living Openly as a Family With Hidden Disabilities.

I'm only snipping a bit of it here: "When we started adopting we were required to read books and demonstrate our ability to be sensitive to racial diversity before our first AA child was placed with us. Never did we have to prove our preparedness to parent a child with undiagnosed brain damage, autism, serious learning disabilities or mental health challenges - I am glad that we are where we are today - parenting kids under each of those categories - but laugh at the thought that 'race' was the big concern about us adopting them."

This isn't even her main point and I urge you to read it in context. But it resonates because my own adoption training,"With Eyes Wide Open," (nine years ago) was all about transracial adoption. Every time we've renewed our home study since then, we've had to update our "transracial parenting plan." But no one asked, "So what is your plan if Hope turns out to have FASD and ADHD?" According to my training, the questions in the grocery store were supposed to be about the mismatch between my girls' eye shape and mine, not about my raging six year old or why my four year old is too floppy to sit up in a grocery cart.

So I'm thinking about resources that have opened my eyes about special-needs parenting in general. Have you read or seen or done anything you would recommend? Are there ways we can help those coming behind us do it better --or at least, with a learning curve a little less steep?

Please Pray for Amy

2011-05-22T11:16:00.000-07:00

Amy, Joy's twin sister, is growing up in a wonderful family in Korea. Amy has hydrocephalus which was shunted the day after she was born. Last week, the shunt failed and pressure from the cerebral-spinal fluid built up for a while before a neurosurgeon diagnosed the problem as shunt failure. She had brain surgery to replace the shunt last Tuesday and is now recovering. This is her big sister SeonKyoung's post about it.

Besides her physical recovery, I can't help but pray that God will protect her heart as she recovers from the trauma, too.

Screening for Autism and Developmental Delays at 12 months

2011-05-21T08:05:00.000-07:00

Some of my long-standing burdens for International adoption, particularly from Korea, are that children with developmental delays be identified earlier, that meaningful therapeutic intervention be started at an earlier age, and that adopting families be more fully informed about their waiting child's development so they can have the appropriate plans and supports in place when their child comes home.

It is a rare child placed for International adoption (IA) from Korea whose birth mother is a gifted violinist, studying pre-med in college who has a one-time lapse in judgment that leads to pregnancy. Rather, the majority of the children placed for IA have risk factors very much like those placed for adoption in the U.S.: little or no prenatal care; PAE (prenatal exposure to alcohol); gentic risk for mental illness or developmental delay; born prematurely.

By Korean law, all kids currently available for IA were passed over by domestic adoptive families. In some cases, that only means there were not sufficient numbers of domestic families to adopt the number of available children. Just like in the U.S., many Korean families, given the choice, choose to adopt a child with fewer risk factors. So the pool of children available for IA is not a broad cross section sliced from a Bell curve of the population; statistically kids waiting for families living abroad are high-risk.

All of that is background so you can understand my excitement at this summary of a study that just appeared in the April 28, 2011 on-line Journal of Peditrics. Researchers at the University of California, San Diego School of Medicine have developed a 5-minute screening questionnaire completed by parents or caregivers at a child's 12 month well baby visit. The article reports:

"The study screened 10,479 one-year-olds in the San Diego region. At their child’s regular one-year check up, parents or caregivers were given a brief questionnaire called the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist that asked questions about a child’s use of eye contact, sounds, words, gestures, object recognition and other forms of age-appropriate communication. Any infant who failed the screening was referred... for further testing, and re-evaluated every six months until age 3."

The study showed the questionnaire had 75% accuracy in identifying children who were subsequently diagnosed with autism and other significant developmental delays. As a result, the children identified as high risk at 12 months were followed more closely and, where it was indicated, received appropriate intervention earlier than children who were not screened.

It would be valuable if pediatricians in Korea used this tool to screen children at 12 months who are listed for International adoption. 25% of adopting families, when they travel, discover that their child is alarmingly more delayed than they understood (almost half of this group questioned whether they could go through with the adoption) and another 30% report being surprised by the child's developmental level being less than updates led them to believe.

So more than 50% of parents adopting from Korea have unexpected concerns at the time they bring their child home. Yet the adoption transition to the new family makes it difficult to discern whether delays are genuine or are induced by other factors like behavioral regression, the language transition, the difference between Korean and American child-rearing practices, or the process of bonding and attaching to the new family. So unless the child comes home with a known diagnosis, adopting families often go through a watch-and-wait period of 6-12 months, hoping delays are adoption-induced and will eventually self-correct.

The value of performing this screening at 12 months in Korea is obvious. The questionnaire would be completed by the child's foster mother who knows the child well and who is not impeded by language or any other transition factor. Children identified as being at higher risk for delays on the survey would be more closely followed in Korea and possibly begin receiving appropriate services while they are waiting to go home.

Their adoptive families could count on meaningful, standardized information on their child's development and where early intervention services may be indicated, parents can investigate their options while they wait. The latter is especially important now that children are coming home significantly older.

The U.S. intervention system is based on a birth through age three model. Birth through three services are attachment-friendly because they are provided in the family's home. But when a child turns three, services are provided in a public school setting. So families bringing home children who are approaching their second birthday (or are older) have a very short window of time to negotiate the adoption transition, get the child tested and enrolled in at-home service programs before their child ages out on his third birthday. However, children identified as at-risk in Korea could be enrolled almost immediately

The only wrinkle I can see is that since this screening tool was developed in America, culturally informed professionals would need to review and tweak any survey questions impacted by cultural differences in child-rearing practices. And of course, the system in Korea would need to incorporate giving and scoring the survey at the 12 month visit, then reporting the results to waiting families.

Of course, with routine screening, more waiting parents may receive meaningful reports noting possible developmental delays which are being followed. But children have a right to go home to families who are aware of and are prepared to meet their needs. Korea is a first-world country with medical and foster-care systems to be envied. There is no good reason half of the families adopting Korean children should be surprised by unexpected developmental delays the first time they meet their child.

Pediatric Medical Trauma

2011-05-20T20:39:00.000-07:00

This post is the first fruit of my ongoing research to try to understand and to help Joy recover from what I speculated earlier this week might be post-traumatic stress from her surgery in March, followed by a week in the hospital and a month in a body cast.

Those of us who think our kids are experiencing lingering anxiety post traumatic medical procedures are not imagining things. These traumatic events (procedures, treatments, hospitalizations, surgeries, severe injuries, cancer), when they occur in childhood are called Pediatric Medical Trauma (PMT). And yes, as we intuited, experiencing medical trauma can cause Post Traumatic Stress Disorder (PTSD) in kids.

According to this article, symptoms of PTSD are:

Re-experiencing the traumatic event(s)

dreams and nightmares
flashbacks
anxious reactions to reminders of the trauma
hallucinations

Avoidance

avoiding close emotional contact with family and friends
avoiding people or places that are reminders of the events
loss of memory about the event
feelings of detachment, numbness

Arousal

difficulty falling or staying asleep
anger and irritability
difficulty concentrating
being easily startled

May have physical symptoms including

stomach and digestive problems
chest pain
headache
dizziness

According to The National Child Traumatic Stress Network (NCTSN) PDF, Medical Events and Traumatic Stress in Children and Families, doctors and therapists who specialize in trauma recognize two manifestations of post-trauma anxiety. When the symptoms of PTSD occur in the first four weeks following the traumatic event(s), they are called ASD or Acute Stress Disorder. When the symptoms linger past the one-month mark they are called PTSD. (p. 17)

Besides the anxiety surrounding the event itself, what becomes of children whose medically-induced trauma is unrecognized and untreated?

"While some children "bounce back" after adversity, traumatic experiences can result in a significant disruption of child or adolescent development and have profound long-term consequences. Repeated exposure to traumatic events can affect the child's brain and nervous system and increase the risk of low academic performance, engagement in high-risk behaviors, and difficulties in peer and family relationships. Traumatic stress can cause increased use of health and mental health services and increased involvement with the child welfare and juvenile justice systems. Adult survivors of traumatic events may have difficulty in establishing fulfilling relationships, holding steady jobs, and becoming productive members of our society. Fortunately, there are effective treatments for child traumatic stress." (NCHSN, Defining Trauma)

According to Saxe, Vanderbilt and Zuckerman in their 2003 article, Traumatic Stress in Injured and Ill Children, PTSD in young children is critically understudied:

"(3) Developmental considerations. Developmental issues must be considered. The meaning of an illness or injury, and its treatment, is very different for an infant and toddler, a pre-schooler, a school-aged child, and an adolescent. The appraisal and experience of such critical constructs as pain, disability, life threat, and death is highly developmentally determined and likely affects symptoms and recovery. Many infants, toddlers, and preschoolers are hospitalized with injuries and illness, but few have been assessed in research studies. Little is known about traumatic stress in injured and ill children who are very young. Although this research is challenging, it is also critically important." (p. 3)

That may be why I'm having such a hard time finding information about how to help young children cope with medical trauma. I'll keep working on that.

In the mean time, for further reading, there are a couple of great trauma bibliographical databases to mine. Both contain links to articles available on the Internet:

Medical Trauma Reading List at the National Child Traumatic Stress Network
the PILOTS Index to the Traumatic Stress Literature at the National Center for Post Traumatic Stress Disorder

The Unforseen Costs: Assistance Programs

2011-05-20T11:34:00.000-07:00

Part 3 in a series on the potentially unforeseen costs of special needs adoption.

I have spoken with enough families about secondary insurance --one of the most widely used forms of disability assistance --to know that it is confusing. Most families are considering public funds allotted to states by the Federal government. But no two states administer the program the same way. So take the specifics I will share as examples of how it works for our family. Then be sure to look into how it works in your state.

At the bottom of this post, I will provide links you can use to research options where you live.

Primary Insurance
Most families who are in an income bracket to be able to afford to adopt Internationally, or through private domestic adoption in the U.S., have health insurance through an employer or via a private policy. That is the family's primary insurance health insurance policy. Policies are variable. For example, a family may enter an adoption with a policy that places a co-pay on office visits. That co-pay may not be burdensome for a family with typical kids. But between therapy and doctor visits, Joy has a minimum of 17 office visits a month.

With my husband working for a very small employer, we carry private primary health insurance. We had the freedom to shop for a policy that has no co-pays (after we satisfy a yearly deductible); no limits on office visits; covers durable medical equipment (wheelchairs, braces etc.) --things that all work in our favor. This is a great option for us right now, but would change if my husband changes employers.

Secondary Insurance
We also carry secondary insurance on Joy and are considering enrolling Hope. In exchange for a monthly payment, the state provides a secondary policy that pays for Joy's eligible expenses not covered by our primary insurance. In our case, the secondary insurance reimburses us for Joy's portion of our medical and dental insurance premiums; pays for the portion of our yearly deductible she expends; pays her PCAs' wages; and pays for the administrative fees charged by our employment agency.

If that sounds too good to be true, it is. The amount of Joy's expenses not covered by our primary insurance varies, as does the premium for the policy, from year to year. At the time we enrolled, our primary insurance did not cover durable medical goods and our premium was 35% lower. Our expenses have dropped due to an unexpected improvement in our primary insurance coverage. The premium has gone up not because our income has, but because of state and Federal budget cuts.

So at the moment we are paying in as much as we get out, which hardly makes the administrative burden worth it. We could budget to pay for her extra expenses out of pocket instead of via our monthly premium. But before we back out, we are investigating the burden of potentially re-enrolling if our primary insurance situation changes.

Before you walk away shaking your head thinking you could not possibly afford to adopt a child with special needs, know that while we are far from being in the highest tax bracket, our income places us in the highest percentage of the sliding scale our state uses to calculate our monthly premium. We can also afford to have me stay home with our children and pursue a career (history) that makes almost no money. Your family circumstances may be different.

The major variables that determine whether secondary insurance is cost-effective are:

your child's diagnosis (eligibility)
your child's level of dependence compared to children their age (level of benefits)
your primary insurance policy (how high your expenses may be)
your family income vs. the number of people in your family (how much you pay)
the economy (how much funding is available)
the number of children in your family with qualifying medical diagnoses (how cost effective it is for you)

In most public programs the monthly premium covers all people in the family with a qualifying diagnosis. So if we enroll Hope, it will cost us no more than we already pay in for Joy.

Which assistance programs are you eligible for?
For more information on assistance programs like secondary insurance which may be available to you, go to disability.gov and use search box under Information by State the left menu. The click through the suggested menus until you find a site like this, which is Minnesota's clearinghouse for disability benefits information.

If you find the range of programs and the eligibility requirements bewildering, use this Benefits.gov Search. Complete the questionnaire and see what the website suggests.

But for the best information, especially if you are considering a child who already has a diagnosis or known risk factors, use your county government web page to locate a county social worker who works with children who have developmental disabilities. (State and Federal programs are administered via counties. Counties also have programs they administer.) Beg a phone appointment, tell the social worker about the child, then play 20 Questions about the services available to similar kids in your county. If you don't already know a family in your area who is raising a child with similar needs, also ask the SW to refer you to parents who have volunteered to be a resource. Real people beat government websites for the real story every single time.

Kari's Picture Says it All

2011-05-19T12:07:00.000-07:00

If you haven't already read Kari's post for today Definitely Not Stable, please do. Besides her wise words, the Lego picture is a perfect visual of precarious equilbrium --and how quickly it can fall apart.

If you hold your breath, you can imagine that the Lego structure on the right side of the picture was momentarily erect. But it probably took little more than a sigh or a small bump on the table to break Bean's creation because structurally, it was inherently unstable.

I'm used to thinking of Hope's neurology that way. But as crazy as it seems, I've never considered how true it is for Joy. I say "crazy" because anyone asked, given a choice of Joy or Hope, which child looks brain damaged, everyone would pick Joy. But Joy's marked delays have never included a behavioral component. Because she has been so emotionally sturdy, I haven't spent any time considering that Joy's equilibrium might be a fragile thing.

After all, she has endured so much: separation from her birth mother and her twin sister; two months in an NICU; a month in a baby hospital; adoption into a foreign culture out of nearly a year of foster care during which it probably never occurred to her that her wonderful foster family and culture might not be her family and culture forever. She sailed through these transitions with every indication of being one of those kids with a "resilient" personality who are said to rebound from adversity.

The surgery in March broke our baby.

Joy's bones and incisions are healing fine. But her heart is still trapped in a body cast. She has no emotional margin. She is afraid of things that did not phase her before. She refuses to attempt things she could easily do before surgery. She views even therapists she liked before surgery as threatening. She cries and will not be consoled if we even ask her to try. Outside our home, where during the day she is her familiar happy self, she has no emotional margin.

Surgery has betrayed her "emotionally sturdy" facade. We didn't understand how precarious her equilibrium was. We didn't just blow on her Lego tower or bump the table on which it rested. We stomped on it.

Now we're in new territory: trauma and post-trauma recovery.

At the moment, I'm angry. I'm angry at myself that it never occurred to me that this surgery might have been considered elective. (After all, Joy is never going to walk well and will always depend on a wheelchair. Once they are old enough to have a voice in the matter, most kids with her level of functioning abandon their limited ability to walk in favor of a power chair. So how important was it to intervene surgically to improve her ability to do something she will probably not choose to do?)

And I'm angry that while they warned us of surgical risks like infection, not a soul among the many professionals who were involved in counseling us regarding the surgery, not a sentence in any of the materials they urged us to read mentioned the possibility that while Joy might emerge with straighter leg bones, she might also acquire post traumatic stress syndrome.

I don't think I'm crazy in thinking it is PTSD because one evening while we were still at Gillette, one of Joy's nurses and I were talking about the nurse's plans for graduate school. She said her experience nursing on the post-surgical ward led her to want to research PTSD in kids with chronic health conditions who faced multiple surgeries.

So, my experienced mom friends, besides pray, what do I do to help Joy?

"Parasomnia" sounds lovely doesn't it?

2011-05-18T11:25:00.000-07:00

"Parasomnia. Parasomnia. Parasomnia."
"Parasomnia. Parasomnia. Parasomnia."
"Parasomnia. Parasomnia. Parasomnia."

It has euphony. It has lilt. It's a mantra I'll try repeating next time I'm have insomnia at 2:00 AM after one of Hope's bouts of confused arousal due to parasomnia.

There's nothing heavy in this post. Sure. Now we have a word, and official diagnosis, for Hope's crazy sleep pattern. But there is nothing new. We've lived with it for six years already. Except the welcome news that kids usually outgrow it in their 'tweens. (Hoping that holds true for kids with FASD.)

Because I know many of us struggle with kids who sleep poorly (very common in FASD, but not limited to it) here are some notes from Monday's sleep consultation for Hope with Dr. John Garcia at Gillette Children's Hospital (who also practices at St. Paul Children's.)

My disclaimer: I was too busy with Hope to actually take written notes and I have not studied sleep disorders so I may have misunderstood him.

Within a few minutes, he was able to rule out a formal sleep study (overnight in a sleep clinic wearing electrodes etc.). Hope has no history of seizures and no other indications that nighttime seizures may be causing her restless sleep. She also doesn't snore (which would raise the possibility of sleep apnea).

Instead, Hope has a bread-and-butter sleep disorder, parasomnia, characterized by confused arousal and night terrors. Her brain is not adept at falling deeply asleep and staying there. Instead, she spends much of her night in the netherland between sleep and consciousness. Hence she makes lots of movements (sleeps restlessly: thrashes, talks, cries out, moves around her bed) while sleeping. Sometimes she is vaguely awake (aware that we are not there, calls out for us, wants to be comforted), but can rather easily be patted back to sleep. If she awakened so far that she was her day-time self in the middle if the night, that would be insomnia. But she does not.

Hope also has night terrors, which happen when her brain gets stuck at a different place between sleep and arousal. Hers fit the classic pattern: the child cannot be awakened out of the dream, but it eventually passes and they fall back to sleep, often having no memory of the experience. In kids who have night terrors, 2-3 per month are not unusual. 2-3 per week (which Hope can have) is more unusual. But that frequency isn't any harder on her than less frequent ones.

What can be done for parasomnia? Having parasomnia suggests Hope probably is getting as much of that "deep restful" sleep we hear is good for us. But kids do better getting by on restless sleep than adults do. He said that there are medications than can put kids solidly to sleep and keep them there, but that the payoff for the child is an improvement of perhaps 20% in the daytime behaviors. So, he said, they typically only prescribe when parents become so frazzled from their own broken sleep caused by their child's broken sleep that it begins to affect the parents' ability to function well during the day.

Although Hope has rarely sleepwalked (that we know of), because she has parasomnia she is at higher risk for sleep walking, which is the next behavior up the scale from night terrors. And because kids can sleep walk silently (without waking anyone else) he suggested it would be prudent to put an alarm on her bedroom door (and if she was a sleepwalker, on the doors leading outside the house, too). Because her bedroom door is right next to our room, he said an alarm could be as simple as jingle bells or two tin cans--anything that would alert us when she opened her bed room door. Door frame-mounted electronic alarms would be appropriate for doors father away.

About ten days ago, we decided to give Melatonin (a 1 mg. chewable tablet) another trial. (We had tried the liquid form when Hope was younger and couldn't find a small enough dose that helped her fall asleep without increasing her night terrors). I almost gave up the chewable tablets after three nights because while it helped her fall asleep faster and did not trigger night terrors, her daytime behaviors the next day seemed markedly worse.

I'm glad we decided we needed a longer trial because we're coming to appreciate the pleasant spill-over into our family life of being able to predict when she will fall asleep (meaning she now has a regular bedtime). Hope likes being able to fall asleep more easily. And because our daytime schedule was atypical at the beginning of the trial, the departure from the routine Hope thrives on may have accounted for the behaviors. So for now, we plan to continue using Melatonin to help her fall asleep. When Hope learns to swallow pills, Dr. Garcia suggested we might trial time-release Melatonin to see if it may help her sleep better throughout the night.

The Unforseen Costs of Special Needs Adoption: Family Income

2011-05-17T20:06:00.000-07:00

Part 2 in a series on the unforeseen financial costs of special needs International adoption.

Highly educated moms with a career outside the home are a norm in International adoption. Many families, at the time they embark on their International adoption journey, have two wage earners. It is also common that one parent plans to take a career sabbatical for a few years while their children are young, planning to return to work later. Other families count on a child care arrangements that will allow them to continue working while raising young children.

The realities of parenting a child with special needs may force families to radically adjust their plans.

In International adoption, while a child's referral may come with known risk factors and/or outright diagnoses, many country programs do not permit parents to travel and meet the child prior to committing to the adoption (and in many cases, not at all until the child is ready to go home). This limits parents' ability to accurately gauge the potential impact of the special needs on the family. Families who adopt special needs kids Internationally need to be able to afford (in all sense of that word) a worst case scenario, even while hoping for the best.

Some possible outcomes include:

dropping from two incomes to one (Can you afford this given your adoption financing? Your insurance options? Given the significance of your career in your life?)
dropping from full time to part time work
needing to find work with flexible hours
needing to find a job you can do from home
needing special needs child care, also called therapeutic (or developmental) day care or preschool if you continue to work or go back to work. (What options exist near you? Can you afford the extra cost?)

If you've never before operated as a family on a single income, know that there are some hidden costs:

The spouse who stays home may lose eligibility for previously earned Social Security if he/she remains outside the workforce for too long. (Ironically, disability coverage for both parents is even more important for families raising special needs kids.)
The employment options for the wage-earning spouse may be more limited because:

your geographic proximity to your child's providers and your support network may limit relocation options
you may not be able to be flexible about offered insurance plans unless you can afford private and/or supplemental insurance
the unusual demands on family life may limit the wage-earner's ability to travel and/or work customary hours

You may need to be able to afford supplementary insurance and increased life insurance premiums on one income.

in families with special needs kids, both spouses are counseled to carry equal (and high) life insurance policies.
insurers are finicky about pre-existing conditions and family risk factors so it may cost much more than you expect to take out a new policy or increase existing coverage.
(I'll discuss supplementary or secondary insurance in a separate post.)

Thus the wage-earning spouse may feel stuck in less favorable employment conditions or may not be able to pursue an anticipated career path. This is not only stressful for the spouse who feels stuck, but can disrupt equilibrium for the whole family.

If you haven't already clicked over to The Final Maze post on how special needs adoptions affect families financially (the post I linked at the top of Part I in this series), it fleshes out some real-world examples of the hidden financial toll on wage earners. The comments on FosterAbba's post are helpful, too.

Last, please know that I am not sharing these things to discourage you from adopting a child with special needs. Rather, I hope you will --and will find yourself more fully informed and prepared than we were.

The Unforeseen Costs of International Special Needs Adoption, Part I

2011-05-16T20:33:00.000-07:00

The Final Maze just started a series on the unforeseen costs in domestically adopting children with special needs. It is a great idea. I tried and could not find information like this when we were adopting. So I'd like to take the idea and apply it to International Adoption.

As fewer and fewer children are placed for International adoption (IA) from Korea, a greater percentage of referred children have higher levels of special needs. And as the wait to bring a child home has increased (in the case of our Korean placing agency to 12-14 months after referral), increasing numbers of adoptive parents are considering children with higher levels of special needs listed with agencies that have shorter wait times, or are switching countries to special needs adoption from China.

So this seems like a good time for some candid talk about raising Internationally adopted kids with special needs. That descriptor fits two of my children. Joy has quadriplegic spastic cerebral palsy and Hope is on the Fetal Alcohol Spectrum.

At the outset of this series, let me say this: if you are considering seeking an Internationally listed child with actual or potential special needs, please search your heart, talk to some informed sources (like your social worker and/or agency) and consider whether you could domestically adopt a child with similar needs. Here are a few reasons why.

One
Try to mentally set aside the glamour of International adoption and seriously consider that once your child is home those International frills like homeland visits and fascinating birth culture may take a back seat to the demands of the special needs.

Here's an example. My husband and I are completely sold on the idea of immersion education to teach our kids their birth language. We are blessed to live in city which will soon have a Korean immersion elementary school with prospects of eventually serving children through high school. Sounds ideal, doesn't it? Except that two of our three Korean-born girls learn so differently from "typical" that if they attend school outside our home they will almost certainly need higher levels of specialized classroom support than a charter school can obtain by subcontracting with a local district.

So even though several years ago, we imagined that when we moved, we would be relocating closer to the immersion school, truth is that now, our number one priority is to find or build a house with an elevator.

Here's another example. Very early in our adoption journey my husband and I committed to making return trips to our children's homeland multiple times while they were growing up so they could maintain ties with the people who knew and loved them there and so it would not be a foreign place to them, but a place they knew as well as some of their friends know Disney World.

If you've been reading for a while, you know that when we made the first of our return family visits to Korea last fall, we found that Seoul was only partially accessible for wheelchair users like Joy and that jet lag wreaked two months' havoc on Hope's neurology. Before we can take Joy back again, I will have to make a trip alone --with my AT mom friends :) --or Faith or Mercy, to be certain Joy will be able to negotiate Seoul and Pusan in a wheelchair. And we may need to wait to take Hope back for 5-6 years (when, according to today's consultation with a sleep specialist, she will likely out grow her sleep disorder).

So in the real world, my kids real-life needs trump our well-informed International adoption intentions. My husband and I could more easily keep our philosphical resolves if our special needs kids were born in Idaho or Alabama.

Two
There are no State or Federal Adoption subsidies for the adoption of Internationally born children who have special needs. For the country programs I have investigated, that means that up-front costs for adopting a child with SNs is about the same as adopting a child without them. Most private adoption assistance (like grants) are more closely tied to family income than to the child's SNs. Further, it is no longer uncommon to adopt children with special needs so the competition for available funds is stiff.

Because domestic adoptions of kids with SNs within the United States are often subsidized, a domestic adoption may save a family most of the up-front costs of International adoption --potentially tens of thousands of dollars. Special needs adoptions within the U.S. may also come with an ongoing yearly stipend to help defray the disability-related out of pocket expenses for adopting families. This is typically not a hefty sum, but, as they say, is better than nothing.

As I will outline in future posts, these out of pocket expenses, which are almost impossible to calculate beforehand (we tried) can be daunting. Unless your family income is near the poverty line (in which case, you probably can't afford to adopt Internationally) you may not qualify for many of the low- or no-cost State and Federal programs for families with special needs kids that you will find listed on government websites.

To put that in perspective, our out-of-pocket expenses for supplemental insurance for our kids with special needs is, monthly, twenty five percent higher than our mortgage payment, or the equivalent of the net cost of an International adoption (actual costs less the tax credit) every single year.

Our children are priceless to us and God is providing for our needs. But considering the financial strain the up-front costs alone of an International adoption can place on a family, if you feel clearly led to special needs adoption, you may want to take a serious look at domestic adoption before you commit your heart overseas.

By the way, I am certainly no authority on International or domestic adoption; I can only speak from my family's experience. So if I misrepresent anything in your experience, please say so in the comments. It may help another family make a more informed choice about adoption.

When God's Direction is Perplexing

2011-05-15T10:57:00.000-07:00

"I will instruct you and teach you

in the way you should go;

I will counsel you with my eye upon you.

Do not be like a horse or a mule

without understanding,

which must be curbed with a bit and bridle

or it will not stay near you.

Many are the sorrows of the wicked,

but steadfast love surrounds
the one who trusts in the Lord.

Be glad in the Lord,

and rejoice O righteous, and shout for joy

all you upright in heart."

Psalm 32:8-11

Jeneil's post last week, For Good, has juxtaposed two texts in my heart. Romans 8: 28, "And we know that for those who love God all things work together for good, for those who are called according to his purpose," is now sitting on top of the end of Psalm 32 (above), which I have been mulling for weeks.

The circumstances which have proven to be the greatest sources of blessings in my life are things I would not have chosen. As an 18 year old, had I been given a choice, my parents would have stayed married. Had their divorce left me the choice of attending my accepted college, I would not have landed at Bethel. Had I been attending St. Olaf, I probably would not have heard of the Bethel professor who'd recently left to pastor an inner city church in Minneapolis (now my church home of 25 years; where I learned everything I know about expositing primary sources; where I met my husband).

Had it been up to my husband and me, we would not have chosen a "failed" adoption the first time. Or anxious attachment the second time. The third time, we deselected FASD and ADHD. The fourth time, we ruled out quadriplegia. And so it goes.

I would like to think that I am not like a horse or a mule, without understanding, which must be curbed with a bit and bridle lest I stray. But it seems pretty clear: I do not understand God's "good" for me. Every time I have come to a fork in the road, God, like a rider on my back, has reigned me in and turned my head to point my eyes down the road he wanted me to take.

Without his redirection, I would have continued down a different path. This curbing has been part of the way he has fulfilled his promise:

"I will instruct you and teach you

in the way you should go;

I will counsel you with my eye upon you."

So why the injunction,"Do not be like..."? I'm not sure. I think it might be more pleasant for me if I didn't need redirection. The shock is painful: finding myself in a place I did not anticipate, having to radically readjust my expectations yet again.

Yet it is a bittersweet pain. The loss of a dream brings sorrow every time. But it is not the same thing as the many "sorrows of the wicked." The steadfast love of the Lord surrounds those who go where God leads them. Unlike the wicked who sorrow far from God, my afflictions (which surely must include my not-yet sanctified tendency to panic and doubt) are momentary. When I lift my eyes up again, I find God has not forsaken me and I can,

"Be glad in the Lord,

and rejoice O righteous, and shout for joy

all you upright in heart."

--even in deeply perplexing circumstances. As a Christian, I would have affirmed that as an 18 year old. But I had not lived long enough yet to experientially understand it to be true.

Hope and Joy are not the only two in our family whose development, in some areas, significantly lags behind their chronological age. Spiritually, I must still be like a child who learns by doing because it has taken me all of my adult life to accumulate enough redirected-by-God experiences to understand this: where God is there is always blessing. Where God is, it is all for good.

Even if he has to curb me with the bit and bridle to make me go there.

Do You Ever Choose Not To Intervene?

2011-05-14T09:03:00.000-07:00

This is a question for my experienced therapeutic parenting friends: do you ever just choose not to intervene?

I should attach qualifiers. Hope is not currently in a phase where melt-downs are rages. These are more like a typical two year old tantrum (except of course that she is six). And unlike my neurologically typical two year olds, she can go on for 20-30 minutes before she gets tired and winds down. But she is often capable of pulling herself out of it on her own right now and when she isn't I can tell from the first cry which way this one is going to go.

So if she's in a safe place like her room, and it isn't a harm-myself or break-something or harm-someone else level event, am I always obligated to go with her, stay with her, and help her pull herself together faster than she can if I leave her alone?

What I'm up against is the feeling that the rest of the family gets shorted if every time Hope has an emotional emergency, I drop everything and therapeutically intervene. I don't mind helping Hope when I can see from the chain of events leading up to the melt-down that she was led there by circumstances beyond her control, beyond her ability to cope.

But I sense that for Hope (I'm sure this one of those things that can be different from child to child with FASD) sometimes her melt-downs are some what manipulative: an attempt to get her own way. Like last Sunday she decided she didn't want to go to church and spent the whole 30 minute ride kicking the seat in front of her and screaming, "I don't want to go! I don't want to go to church!" But I could tell from the tone of her voice that it was not a nuclear-level meltdown and I had a very strong hunch that by the time we parked the car in the lot, she'd be fine. That's exactly what happened. She did fine in Sunday School.

(edited to add: Her stated reason for not wanting to go to church was because she wanted to watch TV.)

She has similar meltdowns sometimes at home. When I have a sense that the emotional outburst is more about not getting her way (in a kind of typical-kid sense, although her reactions are always bigger) is it harmful to just let her go to her room (often, she takes herself there) and let her work it out? I can't detect any negative effects of doing this, except that she rejoins us a little subdued and sucking on her thumb. (So obviously it takes something out of her.)

I've often had the impression that it has the same effect as a thunderstorm on a gloomy day. When we finally get the thunder and lightening out of the way, the air clears. Her brain is back on track and things are fine relationally.

As a long-term thing, it seems positive that sometimes she can self-sooth (seems to be learning). So in these cases (where I sense she can do it if given some space) am I actually slowing her learning curve by intervening and helping her out? Or am I causing long-term damage by letting her dwell in those feelings for 30 minutes if by intervening we can restore equilibrium in 10?

Faithful

2011-05-11T05:54:00.000-07:00

Have you clicked over to Rhema's Hope and allowed God to bless you? Jeneil has two daughters, Rhema and Hope. Her oldest daughter, Rhema, is on the autistic spectrum. My girls have other diagnoses, but the struggle to live faithfully in the face of disability is the same. Jeneil's God is sovereign in the face of all things perplexing, including autism, her sister's MS, and her husband's deployments. She has encouraged my heart for months and I commend her blog to you. For Good was just what my heart needed to hear this morning.

Thanks, Melody, for recommening Rhema's Hope!

Rushing Summer

2011-05-10T11:48:00.000-07:00

At 10:00 AM, we said goodbye to spring and hello to 80 degrees F.

At 11:00 AM, we got out the beach towels, bathing suits, and sunscreen.

At 1:00 PM, Daddy had an audience while he filled up the swimming pool.

At 1:36 PM, after ten seconds in the water (they counted),

they decided I was telling the truth when I said it would be too cold to swim.

Things Present and Things to Come

2011-05-09T13:07:00.000-07:00

Fighting for Faith in the Face of FASD

My child with FASD who often passes for typical at this phase of her life, has the same impact on my spiritual and mental health as (I imagine) raising triplets with quadriplegic cerebral palsy. Joy looks and acts disabled. But the truth is that Hope is the one who brings me to my knees and keeps me there.

God is not limited by FASD. The Bible tells me so.

"For I am convinced that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate me from the love of God in Jesus Christ." Romans 8:38

And I know because God shows me it is so in the lives of women who struggle, faithfully, to see God in the midst of FASD.

Divorce and disruption statistics tell us that FASD has every potential of being a millstone around a family's neck. Tonia at A Study in Brown has learned to accept the millstone as a gift and has put it to use as ballast to balance the ship of her soul in the heavy seas of parenting a child with FASD.

I was introduced to Tonia's work last year when Dorothy linked to a haunting post Tonia wrote, a song almost heard. At that time, Tonia was taking a break from blogging. But I was thrilled last week to discover that Tonia has returned. She continues to work out her faith in inspired prose as she stakes out the truth of the coming Kingdom in this fallen world.

If like me, you could use some inspiration to think and to write well, and to live mindfully in the midst of things present, Tonia's March 7, 2011 post The Language of the Peaceable Kingdom is a lovely place to begin.

History Journal 4: "Trysting...there was a good deal of it"

2011-05-08T16:43:00.000-07:00

I've been avoiding Corporal Eggleston's diary entry for a whole month. Eggleston, like Louis Thiele was member of the Sixth Minnesota. Since Thiele did not leave personal papers, I am trailing him by reading the diaries of other men in his regiment during the Dakota War of 1862.

The approach is a little risky. Eggleston was not in Thiele's company, but in the company next door. And it isn't just that their tents were not adjacent. Thiele's mess-mates were first-generation German immigrants and Eggleston's were Yankees --a considerable cultural gap. So when I sat down with a series of palm-sized diaries of men like Eggleston. I was not expecting to find Thiele himself, but hoping to absorb some of the ethos of the big picture: Sibley's army in action in October and November of 1862.

If I've completely lost you, you might want to go back and read the first, second, and third installments in this work-in-progress on Indian Hating in Minnesota in the wake of the 1862 war.

Closed and clasped, Eggleston's diary is the size of a 3 x 5 index card. It didn't take up much room in his knapsack, or leave much room for writing. That's why many of these tiny soldier diaries are disappointing, unless you're interested in dry facts like how many miles they marched and where they camped for the night. Eggleston, though, wasn't deterred by lack of space. He simply wrote nararrtive in miniature, with a pencil he probably sharpened with his pocket knife.

My bifocals were not strong enough to decipher Eggleston's handwriting. Reading through a magnifying glass, his notation for November 5th, 1862 jumped off the page.

"...I did not drill to day was sick --feel better to night --nothing of importance --another bans read on dress parade that there should be no more Trysting with the Squaws it made the boys a little mad as there was a good deal of it done in Camp."

I flagged the page for copying and made a note in my electronic file. But I managed to avoid going back to MHS to pick up the copies for four weeks. I was not at a loss to know what to do next. I needed to look up "trysting" to find the mid-19th century connotations and I needed to read Sibley's Order Book.

Rather, I avoided following up because sometimes I cannot bear the weight of truth. Isn't that a sorry thing for a historian to admit? I realize that this is not the average history project for me. It isn't a simple inquiry into a question like how vouchers worked in the local economy of the Sioux Agency the summer before the war. Rather, in the midst of an unexpectedly lovely season enjoying my family, when I don't need the respite time away that research affords, I find myself excavating the contours of moral truth that has razor-sharp edges.

Yesterday, during Joy's nap, I climbed back down into the trenches at MHS. The 13 volume Oxford English Dictionary told me that the usage of "tryst" in verb form hasn't changed in 150 years. Sibley's order dryly promulgated, "non intercourse with the Indian camp." Other orders filled in the picture.

The documentary truth backs up the gut feeling elicited by page 81 in Eggleston's diary. His words placed me --as a woman, not a historian --in the camp of Dakota tipis at Camp Release, at Yellow Medicine, then at the Lower Sioux Agency, the camps guarded by men who were hundreds of miles and months away from their wives and sweethearts. Even church-goers like Eggleston didn't think of me as the girl next door, but as a different species whose females (like "mares" or "ewes" or "bitches") are "Squaws." Yet they feign to use the verb "trysting" with its connotations of mutuality when they are the armed guards and I am their captive.

Would I trade beads and pipes and moccasins for bread (as the soldiers also wote in their diaries) if there was not someone in my family more hungry than I? Would we women complain to General Sibley about the white soldiers who "insult" us at night in our own tents if it was a mutually agreed upon assignation? (Our few remaining men can do little to defend us because Sibley has disarmed those he did not arrest.) Would Sibley write orders forbidding his men from procuring our buffalo robes, our moccasins, our ponies, our food or anything else we will need to survive the coming winter if he believed we were well enough off to live without those things?

Yet what are we modern people to do with the complication that many of the officers and civillians on the campaign --including Sibley himself --had one or more women in the Dakota camp who in the past had been his Dakota wife? One officer was caught after midnight in the Dakota camp trysting with his own kin. Another was court martialled after being found in a Dakota woman's tent. The rank and file soldiers had all heard the rumors about Sibley's Dakota wife (or wives) and children and believed those relationships clouded his military judgment.

Even if Sibley had a desire to shield the Dakota women from abuse, was he capable of adequately protecting them given the circumstances? They could hardly respect a leader who forbade them doing the very things he had not been able to resist when he was their age. Could they?

Two Gifts in Two Days

2011-05-06T16:30:00.000-07:00

I have been gifted with love by the fists full

every spring for a decade.

But never like this

backed by a flair of early rye

bound in lavendar pony with silver sparkles.

I am ashamed

I bit back,

"You did this? You never do this!"

When she announced

"I'm done with my bath now."

Done means

puddles to sop from the title

Barbies down the drain

a foam of too-much soap

and heaps of sodden washcloths.

The only thing Hope left me

was a small drift of sand

in the tub

like an artifact of reality

and a heart full of wonder.

The Hard Truth About Drinking in Korea

2011-05-06T11:38:00.000-07:00

There is one subject I have avoided in my series of posts profiling women's drinking habits in Korea (see the top set of links here), its context in the bigger picture of drinking in Korean culture. I'm relieved someone else did it: KorAm Journal in an April 2011 feature article by Oliver Saria, Hitting the Sauce.

*****

It was 10:00 PM. We were standing outside Seoul station watching the laser light show on the building across the street, waiting for the Jumbo Taxi that never came. Small groups of people, mostly middle-aged men, were gathered in small groups on the public plaza playing games that rattled like pebbles or dice. I was intent on keeping four over-tired children happy while watching the cab station where my husband had gone to try to get us a ride back to our hotel.

I was not paying attention until an empty beer bottle exploded on the pavement and skittered to rest against Joy's stroller. A Korean man in a business suit took my elbow and said, in English, "You come. Bring children. These men not safe." He ushered our family to a brighly lit spot on the edge of the plaza safely away from the men and their drinking games.

*****

Quoting the 2011 World Health Organization Global Status Report on Alcohol and Health, Saria states:

“Korea ranked 11th with a total per capita consumption of 14.80 liters of pure alcohol in 2005 (the most recent year studied). In other words, that’s the equivalent of everyone in Korea over the age of 15 drinking a staggering 196 bottles of Chamisul Original soju in the span of one year....

Though the top 10 boozers were composed of European nations (Republic of Moldova was no. 1), Korea, compared to other Asian countries, can drink the entire continent under the proverbial table. The next Asian country on the list, Japan, ranked far behind, in 55th place. Notably, Korea is the only Asian country even listed in the “Top 20.” (The United States, in case you were wondering, ranked 57th.)”

*****

It isn't a pretty picture. Literally. If you are a Korean adoptive parent, take a deep breath before clicking the link to the article. You'll have a hard time forgetting the banner photo.

With thanks to my friend, E., for sharing this article.

Q & A with Dr. Julia Conkel Ziebell on FASD in International Adoption

2011-05-05T17:38:00.000-07:00

Not all children prenatally exposed to alcohol will develop FASD. Many will not. But because diagnosis before the age of six is associated with the best outcomes, families need to what to do with the knowledge that their child was prenatally exposed.

Dr. Julia Conkel Ziebell, a psychiatrist specializing in Fetal Alcohol Exposure at HSI in Ramsey County, Minnesota, who performed Hope's evaluation, kindly agreed to answer a few questions publicly for other parents.

Q: Should all children with known exposure be screened for FASD? Or only if/when parents are concerned?

A: The CDC recommends that all children with known prenatal exposure to alcohol should be screened by health and/or education professionals. This can be done through a well child check-up, a developmental assessment conducted at an international adoption clinic, or an ECSE evaluation. The purpose of such screening is to identify red flags, or conditions known to be related to FASDs. If enough red flags or "triggers" are present, then a referral for a diagnostic assessment is the next step. If parents or caregivers have specific concerns about growth, development, or behavioral issues, they may want to schedule an appointment with their pediatrician to inquire about a referral for an FASD diagnostic evaluation. Additionally, the National Organization on Fetal Alcohol Syndrome has a state resource directory that lists referral sources for parents interested in seeking an evaluation. http://www.nofas.org/resource/directory.aspx

Q: Are newly adopted toddlers with reported exposure too young to be evaluated for FASD?

A: Developmental tests for toddlers are normally not affected by attachment to the new family; however, it is useful clinical information that should be gathered through an interview with the parents. Most tests do presume some level of receptive and expressive English; however, there are tests that minimize verbal instructions/responses and can provide a more accurate picture of the child's current level of functioning without the "filter" that language provides. These tests include the Kaufman Assessment Battery for Children, Second Edition (KABC-II; ages 3+) and the Comprehensive Test of Nonverbal Intelligence-Second Edition (CTONI-2; ages 6+).

Tests for younger children (including the Stanford Binet-5, the Mullen Scales of Early Learning, and the Bayley Scales of Infant Development-II) can be administered to non-English speaking toddlers; however, language acquisition factors will likely artificially deflate a number of the scales. Once a toddler can follow basic commands in English (e.g., "Where are your ears?" or "Give me the shoe"), which are called Basic Interpersonal Communicative Skills (BICS), the test results are likely to be more accurate. For internationally adopted children, a good evaluation will always consider test results in light of the child's BICS and for older, school-aged children, Cognitive-Academic Language Proficiency (CALP), which is the "language of learning" children must use in order to solve problems, employ imagination, and utilize analytic/reasoning skills.

I'd like to add a word of practical advice. Make sure that PAE (Prental Alcohol Exposure) is recorded in your child's chart at your primary care doctor's office. Hope did not have a chart at the time I discussed her referral with our pediatrician so it was never written down. Between that fact and my own ignorance, Hope's primary doctor never raised the possibility that her challenges could be related to exposure and I did not know enough to ask.

In Which Hope Solves A Problem Without Disturbing Her Brain

2011-05-04T12:55:00.000-07:00

By the end of last week the new/fun aspect of iLs had worn off and Hope decided she'd see what happened if she just refused to do it. "But I don't want to!" got her nowhere, so she decided that it was worth melting down over --especially because Daddy was home and might be more sympathetic.

Smart as she is, she still hasn't figured out that I can NHA her into cooperating and before she knew it, she was plugged in and listening, happily bouncing on her "bucking bronco-roo," tossing bean bags at her target.

"You know," she said bouncing away, "how I almost didn't do iLs, but you reminded me about losing my point so I cooperated? Well, I think this would work better if I got two points every day, not just one."

"Two points?" I asked, fielding bean bags.

"Yes. Two. One for doing iLs. And another point for doing it with a happy heart." Hope paused for a quick look at my face. "Then I would earn points twice as fast, right?"

"You sure would," I said. "If you get two points per day, how many points will you have after 10 days?"

"20 points!" Hope enthused. "But don't you think we need some better way to keep track of that many points besides in your head?"

I tried not to laugh and tossed her bean bag back. "So what is a better way to keep track than in my head?"

"We need a chart!" Hope said. "A chart is a handy-dandy scientific tool!" she sang (thanks to Syd the Science Kid.)

"Okay," I said. "I think adding a happy heart point for iLs is a great idea. When we're done with our exercises, I will show you how to make a chart on the computer."

"But we can't do that!" Hope said. "NO screen time during iLs! Remember? I don't want to disturb my brain!"

"You are right. No screen time during iLs. So how about we wait until iLs is over today and then we make a chart on the computer?"

"Crayons and paper won't disturb my brain, will they?" Hope pleaded, clearly intent on visualizing her points ASAP. "Can't we make a chart with crayons and paper during iLs? Please?"

"Well," I said, "I guess I could show you the way we used to make charts when I was a little girl, before we had computers."

"Let's! Let's! Let's do it right now!" Hope returned her pony to the stable and we went upstairs.

Hope grabbed Mercy on the way to the kitchen table. "Mercy! You have to come see! Mom is going to show us how people made charts in the olden days!"

"Wow! Really? How did they do that?" Mercy asked.

From the awe in their voices, you'd think I was about to decoct dye from butternut hulls. Instead, with nothing more than a sharp pencil and a ruler, I materialized a chart on a blank piece of paper.

Hope picked it up and carefully counted 60 spaces to make sure I hadn't missed any. "And you didn't even have to print it," she said. "It's just here. Like that!"

Hope slept with her chart next to her pillow the first night before clipping it to the refrigerator next to Mercy's. And she hasn't missed a happy heart point since.

Some Days Are Like This

2011-05-03T16:47:00.000-07:00

Good, that is.

I know all the days God ordains for us are good because God is good. But these past few days I haven't had to think abstractly. They have been good in the simple, ordinary sense: I've been enjoying my children.

God has orchestrated several things to bring this about --and many more, I'm sure, of which I'm not aware. Since I am cognizant of these things, I want to acknowledge them as gifts. I also want to encourage my waiting friends that not every day living with FASD is hard.

Starting iLs has has helped. Not iLs itself. According to the science of neuroplasticity, ten sessions is too soon to expect significant neurological rewiring. Instead, I think we're seeing corollary benefits of from using iLs as home-based therapy.

It structures our mornings. Our iLs routine is now predictable and Hope thrives on structure.
Starting out Hope's day with physical activity and 60-65 minutes of deep sensory input (bone-conducted sound; you have to feel it to believe it) focuses and grounds her. It satisfies some of her sensory-seeking needs that otherwise manifest as provocative behaviors.
The residual effects seem to last 9-10 hours. That gets us almost to bedtime with significant improvements in Hope's demeanor toward family members. (For her, this has always been a mix of impulse disinhibition and sensory-seeking.)
And it certainly can't hurt that Hope gets an hour of my undivided attention having fun. Not in correction. Not in instruction. Just doing things she finds fun that I have never before prioritized. Like bouncing beach balls and setting bowling pins. In Nurtured Heart terms, it's like depositing a thousand dollars in our inter-personal bank account every day. The dividend seems to be some peace.
Fitting in two sessions of iLS has also stiffened the structure of my day. It is forcing me to use my remaining time more wisely, which is always a good thing.

Both photos are from the parachute and bounce house party Mercy and Hope earned for their neighborhood friends by completeling their first ten sessions of iLs with (mostly) cheerful hearts. Thanks for the parachute, Nana!

*****

One happy result is more time to spend in prayer and reading the Bible. For a few months, I've been mulling over this verse, Psalm 32:6:

"Therefore, let everyone who is godly

offer prayer to you at a time when you may be found;

surely in the great rush of waters, they shall not reach him."

Superficially it seems like a strange injunction: pray to God while he may be found --as if there is ever a time God is not available? There is no such thing as having catch our Father, God, before he turns on the lawn mower, or picks up the conference call, or boards the next plane to Bentonville. God is GOD. Available 24/7, everywhere, all the time.

God, being the perfect Father, goes even further. He's never too busy with more important things to watch and wait for his children. Psalm 34:15 says:

"The eyes of the Lord are on the righteous,

and his ears are attentive to their cry."

So how can Psalm 32:6 enjoin us to seek God before the limited-time-offer expires? I'm no theologian. They generally interpret this psalm as alluding to God's protection of Noah and his family during God's flood of judgment on the world. In that context this verse works (sort of).

But as I've pondered this verse in the context of my own life, God has drawn out another truth. When the waves of life are lapping high around my head threatening to overwhelm me, I do pray. And I do find God very near. But it is an entirely different kind of praying than I do on days when God gives me the physical, mental and spiritual margin to linger in prayer and over the Word.

During most of my life before I had children, the majority of my spiritual time lent itself to that quiet, extended, meditative devotion. I have recently realized that was a gift of my loving, all-knowing God storing up the spiritual riches He knew I'd need to start mining in February, 2004.

I confess I've floundered since then: longing for that old, long-familiar way of communing with God. In every way imaginable it seems superior to the fleeting, often desperate kind of hot line communication that has become the norm in the past seven years.

But God is showing me recently that even though the stretches of front-line-battle communication may dominate, he still graciously gives days like these past few. The reprieve comes from the hand of God and he gives me free choice about how I use this gift. Days like these are opportunities to slake my spiritual thirst the old, deliciously time consuming way.

"Therefore, let everyone who is godly

offer prayer to you at a time when you may be found;

surely in the great rush of waters, they shall not reach him."

It's not that God's offer of all-sufficiency expires in 24 hours. But it would be presumptive to think that 24 hours from now, this calm will have held, that stormy waters will not again be washing over the top of the sea wall. Rather, my opportunity to sit and linger in prayer over God's word may likely expire.

God is found in a different way in these quiet, calm interludes. I will offer a prayer to God at this time when my heart will find him this way.

To my experienced mom friends bailing at the sea walls, know I am praying for you.

*****

A P.S. for Dorothy: You know what you've always said about your Bibles? Think it means anything that my nine month old (puppy) ate mine?

Helping Alcohol-Affected Toddlers Learn

2011-05-03T05:21:00.000-07:00

I'm reading through standard literature on FASD. One of the books in my pile is edited by Judith Kleinfeld and Siobhan Wescott, Fantastic Antone Succeeds: Experiences in Educating Children with Fetal Alcohol Syndrome (University of Alaska Press,1993). For my friends who are parenting or are about to bring home a child who was prenatally exposed to alcohol, I want to highlight one chapter in the book, "Early Intervention for Alcohol-Affected Children Birth to Age Three," by Jan Hinde.

"Alcohol exposed" does not always equate with being "alcohol affected" and in the toddler years it may be difficult to guess whether a child's behaviors are due to personality, or to the adoption transition, or to the foster parents' style, or if it reflects their alcohol exposure. The knowledge that the child was exposed can undermine our confidence in our parenting: how do we know if we can/should hold our child to typical behavioral standards when we don't yet know if those are within his reach?

Parents of newly adopted toddlers puzzling over that conundrum will find Hinde's chapter helpful. You might consider it the less-scary, more hopeful equivalent of Mary Hopkin's Best's book on toddler adoption: if your child is among those affected by his exposure, Hinde's "cookbook" of early intervention strategies that have proven effective with alcohol-exposed toddlers will be a ready-reference.

If you have any doubt about whether your child may be affected by his exposure, this would be a conservative, "first do no harm," approach while you observe, experiment, and try to sort matters out. Because kids with FASD can be attachment challenged, Hinde's strategies specifically foster attachment. And because kids with FASD are frequently language and/or processing delayed, her advice is also highly relevant for newly adopted toddlers, who, regardless of exposure, are managing cultural and language transitions. These strategies have the added plus of being foundational to parenting kids with FASD.

If I could dial back the clock to Hope's toddler years and drop the thought into my head, "You may be parenting a child who was affected by her exposure to alcohol," I would have wondered, "Then what should I try doing differently?" Hindes' chapter would have been a place to start.

Auditory Processing in FASD

2011-05-02T12:17:00.000-07:00

Since I made this post introducing Terri Bellis's book When the Brain Can't Hear, I've been ruminating on the relationship between attention deficits and APD, or Auditory Processing Disorder. As a layman it seems like a chicken-and-egg question. In a child who has both, which comes first? Are the auditory processing deficits one way that inattention manifests itself? Or are attention losses triggered by auditory processing gaps?

Let's say, I say. "It's time for dinner. Please go wash you hands." Hope stops playing and washes her hands, so I expect next she will show up at the dinner table. Instead, Hope washed and went back to playing. Was her attention elsewhere when the words, "It's time for dinner," passed through the air? Or did her brain only decode, "Please go wash your hands"?

Oviously, the two deficits don't always come together. Mercy has auditory processing differences, but no attention deficits. Hope has both.

Despite the seeming overlap between attention and auditory processing disorders, this study indicates they are neurologically distinct phenomena. Researchers identified children who had been diagnosed with both ADHD and APD, then ran blind trials testing the children's auditory processing performance and attention on and off Ritalin (a stimulant medication). The study found that while Ritalin improved attention, it did not improve auditory processing skills.

This 2001 research study on audtiory processing in children with FASD defines an auditory processing disorder as "the inability or the imapired ability to attend to, discriminate, remember, recognize, or comprehend information presented auditorily." The study matched children with an FASD diagnosis by age and demographic background with children without any neurodevelopmental diagnosis. The report summarized: "that children with FAS scored significantly lower than their age-matched peers" on all but two sub-measures on standard tests for central auditory processing disorder. The children with FASD also showed more variabilty in their performance than children who were not prenatally exposed to alcohol.

A few conclusions. Like everything else in FASD, no two people seem to experience auditory processing deficits the same way. Hope's probable auditory deficits compared to her peers showed up on a sensory survey during intake for Occupational Therapy. Given that we were pretty sure Hope had ADHD, I don't think it would have occurred to me to ask to have her tested for APD as well. Would her ADHD have masked her APD?

I wonder if with time, APD may be moved off the list of intractable deficits often associated with FASD. I'm reviewing a stack of FASD lit. right now and all of it places APD chacteristics like processing speed on the list of permanent neorological changes caused by exposure. But if in kids with APD who do not have FASD, the APD can be remedied (to varying degrees) with auditory processing therapy, might auditory processing therapy also help at least some children who have FASD? In the future, might testing for auditory processing disorder, and where indicated, treatment, become a norm in kids with FASD?

I mean Executive Function deficts are currently in the permanent column for FASD, too, but appear, in trials, to improve (not be "healed") with guided therapy. So why not APD?

The 4th International Conference on FASD: web highlights

2011-05-01T18:42:00.000-07:00

I was happy to discover that much of the content of The 4th Annual International Conference on Fetal Alcohol Spectrum Disorder, held March 2-5, 2011 in Vancouver, BC is available on line. That link will take you to the conference schedule with links to PowerPoint presentations.

This link provides many of the sessions in video format. Note that the video is arranged in folders listed on the upper left. Click each folder to see the videos it contains.

To whet your appetite, here are a couple of sessions that caught my attention.

Relevant to our discussion of what FASD looks like in the toddler years before a formal diagnosis is rendered, The Neurodevelopmental Profile of Preschool Children with a Subsequent Diagnosis of ARND (PDF) verifies our experience in clinical terms.

Recent developments in Executive Functioning Training in Children with FASD (PDF), include a computer based game suite called Cognitive Carnival, still in testing. I'll be watching for updates on that!

There is also a fascinating cluster of papers on how epigenetics may help explain the variability of outcomes in children exposed to alcohol prenatally.