Tuesday, May 31, 2011

Parenting is Not My Highest Calling, Part II

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.

Monday, May 30, 2011

Parenting is Not My Highest Calling, Part I

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

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.

Saturday, May 28, 2011

"Goats" and Other Adventures in Language

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!"


Friday, May 27, 2011

Blogger Comments

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

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!

Wednesday, May 25, 2011

It Wasn't the Full Moon

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?"


"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."



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.

Tuesday, May 24, 2011

The Unforeseen Costs: In-home help

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.

Monday, May 23, 2011

Joy's First Visit to Simon

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.

Sunday, May 22, 2011

How Do We Prepare to Parent Kids With Disabilities?

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

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.

Saturday, May 21, 2011

Screening for Autism and Developmental Delays at 12 months

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.

Friday, May 20, 2011

Pediatric Medical Trauma

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:

The Unforseen Costs: Assistance Programs

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.

Thursday, May 19, 2011

Kari's Picture Says it All

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?

Wednesday, May 18, 2011

"Parasomnia" sounds lovely doesn't it?

"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.

Tuesday, May 17, 2011

The Unforseen Costs of Special Needs Adoption: Family Income

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.

Monday, May 16, 2011

The Unforeseen Costs of International Special Needs Adoption, Part I

 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.

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.

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.

Sunday, May 15, 2011

When God's Direction is Perplexing

"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.