Thursday, June 30, 2011

Gyongbokkung

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

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












































Wednesday, June 29, 2011

Pill Swallowing Advice?

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

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

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

Tuesday, June 28, 2011

Grateful

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

Matthew 6:25, 28-31a

*****

Most of the time I am not anxious about clothes.

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

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

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

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

I'm not omniscient.

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

But God did.

He saved my skin.

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

God clothed me.

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

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

Monday, June 27, 2011

The Cat Laughs

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

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

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

Sunday, June 26, 2011

The Bubble, the Cat, and the Dog

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

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

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

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

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

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

Writing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*****
So where, you ask, is the dog?

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


Gratuitous cute Daisy picture courtesy of Faith.

Saturday, June 25, 2011

Nothing to Envy

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

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


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

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

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

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

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

Friday, June 24, 2011

Pidamaya

"Pidamaya" is Dakota for "Thank you."

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

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

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

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

I find myself saying,"Pidamaya, God."

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

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

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

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

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


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

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

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


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

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

Wednesday, June 22, 2011

"South Korean Pastor Tends Unwanted Flock"

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

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

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

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

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


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

Tuesday, June 21, 2011

Ann Voskamp on "What To Sing in Storms"

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

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

Except when it comes packaged that way.

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

She knows storms. And she knows how to sing.

Monday, June 20, 2011

A Message for the Holt Forum

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

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

--CarrieZ

Sunday, June 19, 2011

Situational Anxiety During Waiting in Adoption: compiled links

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

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

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

Hope this helps reduce the anxiety level a little!

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

History Journal 5: The 17 Minute Switch

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

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

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

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

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

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

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

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

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

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

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

Video: How iLs Works

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

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

Saturday, June 18, 2011

What if We Have Only Five More Years of Plenty?

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, June 16, 2011

iLs Update 50% through Level 1

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

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

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

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

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



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

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




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

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

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

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

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

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

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

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

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

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

Tuesday, June 14, 2011

Things That Are Seen

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On Churches Supporting Families Who Adopt Challenging Children

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?

Monday, June 13, 2011

Surprise Favorites from our 2010-11 Home School Year

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

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




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.