Wednesday, May 30, 2018

Moving forward with Joy! Giveaway

Just 3 campers with autism left to sponsor!  More than 100 parents and kids from adoptive families in Ukraine are still counting on us for sponsors!

If you're in a hurry, scroll down to the *********** section to find giveaway details!

Our little boy's adoption in Russia has allowed us to let go of our dream of being parents to a child with Down syndrome, and embrace the challenges of raising our Daisy with Autistic Down syndrome.  Today, we are moving forward with joy...in more ways than one.

We are hoping to make the barriers a little lower for children with Autism in her hometown of Odessa City, Ukraine.  Five years ago, waiting in a public works office for an updated birth certificate, Heritage Ukraine co-founder (and our adoption translator) Alyona told me just a bit about how the pending political instability of their country had put a great gift into the laps of her newer organization.  Each year, the government used to pay for the orphans of the region to go to a week-long summer camp.  The money ran out, so when Slavik and Alyona asked for just a few children to share in a bible-based summer camp experience at no charge to the government, the government said instead “Can you take them all?”  

600 orphans, when they had asked for 25. 
A week's worth of orphaned kids experienced the love of Christ
and their importance in God's eyes the summer of 2013.

What could they do but say yes, and hope that God would provide.  And He did.  Through the incredible donations that came in part because of the Mulligan Stew efforts of fellow-Ukrainian adoptive mom Julia Nalle and family, the summer camp kids found there was room for each one of them that year and the next.  

The Puzanovs and Heritage Ukraine have made this work for 5 years.   In that time, Camp LELA went from hosting kids two months of the summer on borrowed land to raising the funds to buy a permanent campus in the heart of a city overrun with vacationers each summer.  The only drawback?  They receive no funding.  
The original home of Camp LELA.  No utilities, no water.  But love.  So much love.  

First, they came for the orphans, and Camp LELA opened her arms to the orphans because no one else would.
In 2015, God provided a permanent campus for Heritage Ukraine, shown here transformed into Camp LELA in 2016.  Notice the wall all around which shows the borders of this couple-acre field, surrounded by urban sprawl.
From a sandlot in the city...


To a beautiful dining hall and kitchen, complete Spring 2018...along with four permanent bunkhouses!

Then, in 2015, they came for the kids with special needs, and Heritage Ukraine created a new place for them, because no else had.


The Joy! Center is the very first of its kind in the region, let alone in Ukraine.  Despite only having one usable, permanent building on campus at the time, they made over the basement for these kids with special needs.  The campers who come to Camp LELA Joy! have autism.  They are still living with their families, who very often have no more support than what the internet can provide.  They have no right to a free, public education geared toward their ability levels or care needs.  These families have decided to rock the boat of society and keep their children with them, in their families.  They are revolutionaries in their society…simply for loving their own children in their own homes.

When I look at the faces of these parents, I *know* them already.  They are not different from me.  These kids, these families...this photo could have been shot in a church basement here in Michigan for all I know. 
When I see them...I see me.

These children have a hidden diagnosis.  The world often doesn’t know “what’s wrong with them?” even here in the enlightened US.  Can you imagine how much these families must endure to just get to the grocery store?  To keep their children out of institutional care?  Can you imagine then, what it means to hand those children to a trusted caregiver for a just a few hours that week and *breathe* again?

Joy! Center's sensory room.

You can be a part of it. 

Despite the extra staff required, the cost is the same to attend Camp LELA Joy! as it is for other campers.  $60 per child.  . 

In the basement of the permanent office building on the Heritage Ukraine campus, they have cleared all their storage out and created from almost nothing a special needs classroom.  A place where children who run (elope) are safely gathered in.  Children who are sensory-seeking have swings and ball-pits to explore without judgmental stares.  Where they receive an education appropriate to their abilities, instead of limited by their diagnoses.  Where parents are able to gather upstairs for a few minutes reprieve, and can believe that maybe, just maybe, things could be better someday. 

One of two resource closets.  
Furthermore, a new camp has been opened up, Lighthouse Family Camp, specifically for adoptive families in Ukraine.  They need $6000 for the week to sponsor the families attending this camp.  

And if you are feeling the need like I am to fund the efforts of those who are able to do this work full-time, we have a chance to make that happen.  There are 60+ children whose parents want them to come to Camp LELA Joy!, 35 of whom do not yet have sponsors.  There are 400 orphans who want to come to Camp LELA who do not yet have sponsors.  The current Joy! Center special needs classroom is a great start, but needs so much improvement to be worthy to the task of replacing a full-time education for these children. 
Crash pillows, foosball, and giant foam Legos are a great start, but I know we can offer these kids and families the world if we come together in this.
**************************************************************************
Wherever your heart is, please donate and pray.  There is not a penny nor a prayer that will be wasted. There are three material ways you can help:

1) Donate to Camp LELA Joy! to sponsor a camper with autism in Odessa, Ukraine for $60, or any amount.  Any amount raised over the goal will go to improve the Joy! Special Needs and Autism Center:  



2) Donate to Camp LELA (kids from orphanages) and Lighthouse Family Camp (Ukrainian adoptive families) to be a shelter in a chaotic storm.  Sponsor one camper for $60 or any amount will be appreciated: 



3)  Sponsor the ongoing work of Heritage Ukraine throughout the year with a recurring monthly donation (tax deductible) to minister to at-risk kids and families through afterschool programming and parent support classes**:   



Any amount you can contribute will be so greatly appreciated.  We are doing a small giveaway to give folks a reason to share.  And the prizes have each been donated with the sincere hope that they will turn into a greater gift for the children whose lives are changed for the better by Heritage Ukraine.

Here's how it works:
For every $5 donated, you will receive an entry in the giveaway.  Share once a day on the social media of your choice for a free entry.  If you sponsor an entire camper’s tuition, $60, your giveaway entries will be doubled.  Also, a monthly commitment of any amount will be doubled.  A copy of all entries must be sent to openhandsacres@gmail.com to be counted.  Shares can leave a comment below *or* email for a free entry!



Giveaway begins with shares and donations made and email receipt forwarded to openhandsacres@gmail.com from 12:01 May 29 until midnight EST on June 18.
On June 19, I will use a random number generator to find a winner for each prize:


Grand prize: $100 Amazon gift card donated by the Nalle Family

Bottle of homemade Rumnilla extract, 3 winners, $38 value, donated by Open Hands Bakers


Lularoe leggings, new with tags, donated by Jennifer Kroll



Young living essential oils, donated by Jennifer Kroll


Board games donated by Toko Togashi


Camp LELA T-shirts (3 winners), donated by Heritage Ukraine


Heritage Ukraine Sweatshirt (2 winners), donated by Heritage Ukraine (and clearly hand-carried across the ocean for us!  The wrinkles make it more comfy!) 


Ukraine regions magnetic puzzles, (4 winners) handmade in Ukraine, value $25 (all the Ukraine moms are going "are you sure this isn't the grand prize?!")


Handmade scarf, made and donated by Katy Colbry


Handmade hat, pom pom will be added at winner's request, made and donated by Katy Colbry


Watch for new photos and prizes to be added throughout the giveaway!  Thank you to all of those who have already made Heritage Ukraine's mission your own.  Please contact them at nasledieukraine@yahoo.com to learn more about volunteer opportunities as well.

As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.  As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work.  While I am in the world, I am the light of the world.” –John 9: 1-5


**Donations can also be mailed to HU's partner organization, though will not be eligible for the giveaway 
A Family For Every Orphan 
PO BOX 34628 # 37939 
Seattle, WA 98124-1628

Tuesday, May 29, 2018

How Did We Get So Lucky?


 A few days ago, I got some unexpected news.  Sometime last fall, I tried to get online to the Russian database where our little boy, Mac’s, pictures were updated twice a year.  Instead, I got a message that “this child is no longer available for adoption.”  I was hoping that some foster paperwork had finally been processed, and a supporter of our long-time friends at ROOF had found a way to get him into temporary care in a family.  Often in Eastern Europe when children are in foster care, they are no longer adoptable.

This week, I found out the news was far better.

Our little Mac, Summer 2017, age 5.

Mac is now living in Siberia with his forever family.  They thought he looked like one of their sons.  I know the feeling.
Mac, 2012, following a secret photo shoot when the director of his old orphanage heard we were coming for him.

Mac has been adopted.

While we still haven’t processed our feelings on this news, we know our prayers, and those of our children have been answered.  “If it can’t be us, let him find a family who will love him.”  The children cheered without hesitation the second they heard the news.

Andy and I both said it out loud, “Mac got adopted and he has a family now,” with a head nod and that’s about where we’re at.  This is what we want, someone, anyone to love him.  No more orphanage.


The little boy whose paperwork brought a child from Ukraine into our family…

The little girl who only seemed to be gifted with the unlimited potential of being born in the right time in the wrong place with the now-hope-filled diagnosis of Down syndrome…

The powerful rest of finally being held to sleep.  July, 2013, Daisy's orphanage grounds.

But our Daisy never brought the gift of Down syndrome into our home.  She brought the gift of herself into our lives. 

Daisy’s primary diagnosis is autism.  But an autism so incredibly profound that she seems to learn almost nothing passively.  Even now, nearly five years since the day we met her, she will still rock endlessly all day if you let her.  She will chew her fingers if she is hungry.  She is happy to spin in a johnny jumper or stim with a baton for 8 hours and call it a good day.  She doesn’t show any indication if her diaper needs to be changed.  She is 6, and still wears size 2T clothes.


Seabee (age 3.5) and Daisy (age 6).  She's smaller in person.

Daisy’s life took a radical turn for the better from every day of endless stillness without the muscle tone to even stim in that orphanage in Odessa, Ukraine.
A few minutes of hairbrush stimmies while waiting to visit the ENT.  Dear Lord, she is so beautiful.  
Because today, though Daisy will rock endlessly, we don’t let her.  She is held and tossed, and tickled, and “baby bulldozered” by her daddy.  She has spent endless sessions in feeding therapy, and while she can’t chew, she knows she can walk to her high chair and tap and someone will feed her.  She is given time to feed that sensory input beast that encompasses her entirely of independent rational thought.  Her teacher at school has turned her love of stimmy batons into a daily hide and seek game, teaching Daisy the concept of object permanence.  Daisy doesn’t have to tell us that her diaper needs to be changed, because it’s just what we do. 

Daisy’s least delayed ability, despite being unable to sit up independently at 18 months, is her ability to walk and even run.  She goes upstairs holding only one hand…while giggling at the sensory thrill of it all.

These are not huge news-worthy milestones, but they are all skills that required 5 years to teach.  Think about that. In the country with the most abundant resources for kids with special needs, it has taken a whole team of people 5 years to teach her how to walk upstairs, objects don't disappear when they are covered up, and she is part of the group.

But here’s the thing.  Beautiful little Mac, rotting away needlessly all those years in a Russian orphanage…he could talk.  He could count.  He could eat.  He could walk.  He made eye contact.  He laughed at jokes and engaged in reciprocal play during simple games.  Or so we heard.  We never met him.
Summer, 2015

And isn’t that just the case?

We went seeking that kid with Down syndrome of our hearts.  The little league overcomer, the special Olympian, the kid who makes his first communion with adaptive catechism, who shows his pig at the fair while strangers get teary eyed and ask themselves “how did that family get so lucky?”  There are hashtags and now group tattoos.  But those aren’t for me.

Instead, we got autism.  The least-understood, most alienating diagnosis a parent can get these days, I guess.  Daisy acts so differently, that very often people don’t recognize her special need as Down syndrome.  And in all honesty, it isn’t. 

Autism is Daisy’s primary diagnosis.  i repeat this again and again because it needs to be said.  They did an assessment for private ABA therapy and Daisy’s barriers to learning are at the highest level in all 20+ categories, except one—she is not sensory defensive.  Her 16 or so current skills are at a zero level in every area but two (both got a 2:4)—both because she watched bubbles being blown for 4 minutes and followed them all the way to the ground.  They also changed and ran the assessment for kids at age 2….because there was nothing to test in the age 6 test.  Even in the Down syndrome and autism dual diagnosis support groups, there are never kids like Daisy being discussed.  
Daisy *must* swing!  Early spring 2018

I hope one day she will get a new diagnosis--one that more clearly reflects the group of symptoms that characterize her life's challenges--I'm going to just make it myself and start calling it Austistic Down syndrome.  It isn't a dual diagnosis for her.  It's all in a blender.  All her autism is steeped in a heavy broth of blocked understanding related to her extra chromosome.  She isn't "more alike than different."   

But Mac was.  And there is the tiniest bit of grief there.  

So, what do you do when you unexpectedly find out you have kid with a completely different diagnosis than what you imagined?  When the little boy you still somehow thought might be yours would eventually come home? 

You do like everybody does.  You figure out how to move forward somehow.  First with desperation, but eventually with joy. 

Look! I will bring them back from the land of the north; I will gather them from the ends of the earth, the blind and the lame in their midst...Hear the word of the Lord, you nations, proclaim it on distant coasts, and say: The One who scattered Israel, now gathers them; he guards them as a shepherd his flock. The Lord shall ransom Jacob, he shall redeem him from a hand too strong for him...They themselves shall be like watered gardens, never again neglected. Then young women shall make merry and dance, young men and old as well.  I will turn their mourning into joy, I will show them compassion and have them rejoice after their sorrows.   
-Jeremiah 31: 8, 10, 12b-13

Please read the next blog to hear how we are supporting autism, at-risk kids, and Daisy's hometown in Odessa, Ukraine. MOVING FORWARD WITH JOY! GIVEAWAY

How did we get so lucky?
Their Mac
Our Daisy



Our Warrior Children

Ask me how it's going these days, and I will probably lie to you.  Any response between now and April 2016 (when Hoss turns 5) will be a lie.  The only thing that is really going on in our lives is whatever conflict, drama or tantrum in which Hoss is currently engaged.  If anyone has a good machine to filter out the sound poison his screeches release into our household, please share.  We're in for a long, hard ride.

But, we've been here before, four years ago, with a kid I was sure was broken at the age of 2.  Actually, I thought I was broken--how could one mother be so, so angry at a child who clearly was not like all the other kids? Family encouraged us to have him ambiguously, yet ominously "tested," or to ask the doctor about medication, but I knew in my heart, JR was just like me as a child.  He was scared, and angry, but he would be ok, if we could just find a way not to hate him for the peace his behavior took away from our family life.

The good news is that Andy and I are grown-ups.  We muddled through, didn't give up, and forgave every infraction, realizing he could never repay the damage that had been done while he found his place.  At the age of three, JR had to learn from scratch who loved him in this world. And today, we have a loving, compassionate, age-appropriately-wild, kind 7 year old out of the deal.  

We are now praying it wasn't a fluke.

We are experiencing another challenging childhood.  And by challenging, I don't mean wholesome, going-to-turn-out-to-be-a-worthwhile-experience challenging.  I mean it in the tears-and-walking-away-multiple-times-a-day and just-try-not-to-destroy-his-heart-when-you-discipline-him way. Because no 3 year old could possibly make up for the constant disruption of life and peril to small (heck, and large) siblings he causes by doing what comes naturally for him.

And for those of you feeling all high and mighty, I've been there, too.  I had  perfectly behaved preschooler, who listened to 1-2-3 Magic and never needed a spanking.  But, there's a chance that some kids come this way--their mothers did not do this by their terrible parenting.  When you see us giving in in the midst of the great jacket meltdown, it's because we're just trying to survive another warrior child.

A warrior child is a kid who is born to be a fighter--for the oppressed, for the poor, for those without a voice.  But they don't start that way.  They start out fighting EVERYONE in their path.  They don't have the skills to turn the rush of righteous anger their bodies release when you ask them to pick up the dirty socks they left on the couch.  Hoss hasn't discerned what is good and what is bad, and only trusts himself.  If the baby is crying, he will not believe us when we say it's because he's squeezing her hand.  He simply cannot believe that something his body tells him to do is wrong.  He will look at you and yell, while also trying to prove to you hand squeezing is perfectly acceptable, and not the cause of her crying.

And, yes, he's a bio kid, birthed naturally, breastfed until the wheels fell off, baby-worn, cloth diapered, gently parented and now strictly parented.  In 3 more years, he'll be the greatest kid, but for now...well, just pray for us, and don't be surprised if you come say hello to me one day and I just burst into tears.  Even though we've done it before, it doesn't make the day to day any easier.  It just gives us hope that our boy will stop fighting us and look to us a good authorities in another few years.  And then, I will not stop singing his praises.

To you other moms who know what I'm talking about--you are understood.  I totally get it.

Tuesday, September 5, 2017

Down on my Knees

There has always been something about the need to kneel when coming to God in prayer or in worship.  Why do people do that?  Why is it so humbling?  Why to people go out of their way to find a church without kneelers?  This question has been picking at my brain for a year now, and I wanted to write a brief post about something I have been doing to help change my aversion to kneeling.

Kneeling is uncomfortable, of course, as we are people who live our lives off the ground and on our feet, ready to move them wherever we please as quickly as a thought occurs to us.  But, even more so, we are a sitting people.  We sit at the computer, on the couch, at meals.  People get downright uncomfortable with seeing someone stand when they themselves are seated.  It's a beautiful thing--rest comes when everyone is resting.

But, in times of prayer, there is no image more moving than seeing a mother kneeling in prayer beside her child.  It's almost frightening the power we know comes from prayer offered and relinquished on our knees.  A friend whose prayer life I admire spends 10 minutes (with at timer so she isn't focused on how long, or tempted to make it shorter!) on her knees in prayer each morning. That isn't some magic formula, but hey, that's really something in my mind.

And yet, I rarely pray on my knees.  It is an act I reserve for complete privacy, for Mass, or, rarely, for desperation of pleading in prayer.  I don't want to put on a big show, or even let anyone know I am praying, so instead, I put on no show at all.  If my children were to come across me praying, they could just as easily believe that I was deep in personal thought.  I have turned "close the door and sit alone" into "secrecy."  The act of submission by kneeling in prayer has become shameful, or at least requires explanation if someone were to come across it outside of church.

But there are so many times a day I kneel with no thought of shame.  When I don't want to grab the chair for my computer, when I am changing a diaper on the floor, when I am grabbing under the car for a rolling sippy cup, when the last box of macaroni on sale is in the waaaaay back, bottom shelf.  I will kneel all day long for $0.25 macaroni.

And this thought has occurred to me for over a year--to write a bombshell blogpost that will destroy every reader's peace about everyday functional kneeling with this simple, inspiring-through-judgment thought: "If you will kneel for a diaper, to tie your shoe, or for the last bottle of juice, what kind of selfish jerk are you for not kneeling to talk to God?"

No.  Nope.  Not doing it.  Not going to use my words to take away your peace when you are just trying to go about your day.  I don't even monetize this blog, except for a few Amazon links to fundraise, and I don't need the blog hits from folks sharing to say "see how much better you could be if you weren't a selfish cad?"  (Think, the woman with cancer crawling up the stairs to read her children bedtime stories when you are counting out the melatonin and hammering the last of the s'mores chocolate at 8:55).

But instead, I really believe the Holy Spirit offered a little whisper to me to say "when you're down there, offer something to Him." So a few months ago, I tried it.  Instead of feeling shame each time I kneel at my computer, I have begun to use my daily functional kneeling to say "God, I think I need to pray for my friend right now, before I get up off the bedroom floor."  A quick, "God, she needs your comfort today."  Barely a pause, but before my email has loaded, or sippy cup is off the grimy asphalt, I have prayed an imperfect prayer for the friend who is having a hard day or the little hands that drop everything entrusted to them.  If there are 10 times a day I kneel down--to check Facebook in an uncomfortable position to make sure I only spend a moment, to change a diaper, to wipe the spilled everything, I get reminded to spend that moment as a chance to work AND offer a moment to my God who is always listening.

It is humbling work, this loving and caring for others as humans.  But when I am on my knees each day just to do some little work, thinking a prayer in that moment makes me more ready to offer my whole self each day to God, not just in times of crisis.

Friday, June 9, 2017

Walking Away a Winner

This morning I opened my Facebook and was greeted with this hopeful version of myself, On This Day, 2 years ago:



The time for waiting is over. We aren't going to give up at a token effort. Barriers knocked down. We will find the real you.

Oh, 2 years ago Jaime...it was a valiant effort. I am sorry to tell you that now is the time for accepting. Those doctors don't exist, as they are limited by the bounds of curing pathology. They couldn't find any (or weren't willing to look harder to find any) treatable pathology. Just symptoms and an Autism diagnosis. Take the Daisy you have and run.

She's doing more now than then. Sure, she's still wearing the same size as 2 years ago, but the docs will never look hard at slow growth (2 inches and 2 lbs since then). She's technically growing, and they won't do further testing. Her hand x-ray will show anomalous growth plate maturity ranging from 2.5 years younger to 6 months younger, but they will always interpret that data as "well she just has more time to grow." Her growth hormone is reading low in a static test, but they won't order a dynamic diagnostic test because she gained 1 lb over the course of 18 months, which is "following her own curve." All the tests they run, they do not care about the results. They will be interpreted as a reason not to do anything. Don't worry about coming up with the perfect question to change their minds. You go have your good cry in the hospital bathroom, and get back home to the good things. The fact that her cognitive growth is linked to her physical growth, well, that's not something they are going to get involved with.
After school naps make me happy!
Her 4 months of massive diarrhea will be brushed off, until we hound her docs for a shot-in-the-dark parasite treatment, after which it clears up. Oh, and that 6 months of feeding her gluten-free are a waste of time. It isn't the gluten. Same goes for the three months of dairy-free. Give the girl her yogurt. She's healthy enough, in terms of pneumonia, heart strength, lung capacity, etc. She has been monitored for developing leukemia that all kids with Down syndrome are. It's all healthy. Her first stage genetic scan is clear, but you will lose hours and hours of your fall wrestling the insurance company. Oh, and there is no one who is qualified to take your call, not Preapproval, not Existing claims, not any operator, so just press any option and ask to be connected directly to the supervisor. She's just not like other kids with Down syndrome. Not even like those with a dual diagnosis of Autism. It is a hard road to get quality, dynamic, reach-your-full-potential medical care. After 2 years, I can say we have exhausted all our options in traditional, local medicine. But, you will never feel like you did enough...because I no longer want to move in to phase 3 and start travelling to get answers--Mayo clinic, Dallas, Chicago, Boston, Cincinnati, a skype consult with an alternative medicine specialist in Portland--all the places on your "up next" list. I am so tired, though. We have 2 more kids. I am wondering if there is any treatment that will release her caged cognitive growth. Because I know we can increase her size with growth hormone. But, let's be frank, 2 years-ago me, if her cognition doesn't improve, too, we'll be making caring for her harder. These are the things that used to keep you up at night. But now, we're working so hard each day, I don't have the same time to worry, so I've been sleeping well. Do I really want to move on to the Phase 3 attack with out of state consults? I am completely apathetic about it right now, so I guess that answer is no. More of our energy is being spent worrying about a little boy in Russia, a Camp of hope in Ukraine, helping our Churches here at home, and asking God if He needs us to be parents to a little girl in China. I think "my heart is where my treasure lies," is God gently guiding me and Andy through that Bible verse-- "I didn't give you passion and peace about trying to run these medical leads down out of state right now, because your treasure isn't there." Well, at least we aren't feeling like it's sinful to let this go. We love our Daisy as she is. Well, I could take less pinching, actually. But everything else. Yep. Just as she is. And the other day, she went on this little walking bike and finally pushed herself forward twice. I think the fish oil I have been supplementing her with has supported some of her progress since March (couldn't hurt, and it's not too expensive). I still think all those supplements are mostly snake oil, though, and there's no way to know if the magnesium, B12, peeled outer flesh of the bark of walnut tree saplings make a difference, but I do know why folks try them. Because they're here. Out of options, and wondering if they can do more. Wanting their kid to be better, but so tired of running from specialist to specialist whose expertise is in pathology, which your kid doesn't truly have. There has to be more. But I don't have to be the one to discover it.


We just have to be parents to this kid. Not her healers, too.

Right now, she's stimming and vocalizing in her playpen. She's happy in this little world. It's good enough today. When people light up, talking about Special Olympics, you will smile and say "isn't it wonderful?" and walk away, knowing your daughter will not participate, because it wouldn't be appropriate for her. She has no sense of winning or losing. Or even walking forward for any reason except getting a hug when she gets to you or that a stimming toy is waiting for her. The only inclusion that matters to her is eating on time at our family dinners, getting out of her stroller and swinging the second we get to the playground, and that Miss Jenn lets her touch the teacher's instrument at circle time when the other kids are sitting.

Dear Lord, she is so beautiful, she takes my breath away.  Thank you for picking us for the poorly timed Mass-singalongs, the pinches, and the stimming.  We get to see all the beauty that goes with it.  


Two years ago Jaime, you did really well. I know a lot now because of your efforts since. But, the worry about this mystery kid needs to be set down for a while. Your tears and thousands of miles driven, and countless favors of babysitting asked are appreciated. Their fruition is the peace I have saying, "it didn't work out. We are getting on with life." Sounds kind of pathetic, but it's not. Today, it's the strong thing to do--to walk away without an answer is walking away a winner.

Oh, and don't stress too much about the surprise baby, and Tug will be better after those miserable first six months. Hang in.

Love,
You, now

Wednesday, May 3, 2017

Stuck on the Reef

Yesterday I told you the story of how our son, Nugget, and I dealt with his transition into our family after spending his first 7 years in a Chinese orphanage.  We were a Shipwrecked Family.  You all are wonderful, and have shared that story so well, that in 24 hours more than 2,000 people have read the post.

But I may have accidentally misled you.  Because in reality, Nugget and I have a good relationship and a great rhythm.  He almost never tantrums anymore, he does less categorizing of peers into a social pecking order, and accepts correction willingly.  He is even navigating family dynamics with his siblings at about a six year old level, though his belief that the two year old should be giving the same as him is still a daily struggle.

But this growth only defines one half of the parent/child relationship we have with Nugget.  Reading that post with Andy last night, he said he doesn't feel he is safely on shore yet.  He is stuck out on the reef.  The water is intense, and land is in sight, but there is still so much work to be done for this to be a natural give and take for him and Nugget.  It's something we have talked about therapeutically maybe once a month.  It always comes to the same conclusion:  Nugget does not trust a male caregiver, he just thinks it's kind of a joke.  Like how the resident comes in to get your history when you know the real doctor will be in asking the same questions and drawing the right conclusions ten minutes later.

Nugget views Andy as an older brother at best, whose authority can and should be tested time and again, looking for weaknesses and how well he knows mom's rules and authority.  It did not start out this way.  In China, Andy's were the safe, strong arms that carried Nugget everywhere.  But somehow, Nugget lost that instant connection on his arrival home.

Less than an hour after meeting Nugget.  Andy never wears this shirt now.
Such a reminder of the easy love we expected from ourselves.
When this series is done, expect to see Nugget's nickname change on the blog.
Sometimes I feel like I can find the right words to tell Andy I get it, and sometimes not.  It must help some because every time we talk about it he seems less-defeated the next day.  And I hear less of his "I will be nice to you but I find you a challenging person" tone--the one he saves for visiting friends' kids who are misbehaving bad enough to get some real consequences.  It's a sign of a deeper problem.  Each day my husband offers the same gifts I do, and his offerings are rejected while mine are mostly taken as they are given.  Last week I went away for two nights, and Nugget started eating like he was just home again--huge bites bolted without chewing while Andy reminded him of all our steps to eat properly.  He forgot all his getting dressed steps again.  Tears were the byproduct of every denied request.  Fights were picked, and 3/4 of his waking hours were spent pouting over a sibling who wouldn't give up her bike (that he can't ride) so he can see if he learned how to use a 2 wheeler in his sleep.

Even when I am home, Nugget will only ever try to play Andy off of me, and not vice versa because only Dad's "no" can be overridden by Mom's "yes."  If dad asks him to clean up, he looks at me and says "Mom, is that ok, I just listening to Dad?"  What that translates to is not "do I have permission to listen to Dad?" but "Look at how I am obeying you by listening to Dad."  And some of you are closing your eyes, and rocking with the rapture of Halleluias as you raise your hand in the air at the computer screen and shout "mmm, preach!"  Because getting someone to understand this from scratch is difficult, and useless.  You just look like a nitpicky jerk, or they sympathize, but have no idea how this could happen.  

I am writing this for you, the preferred parent, because the burden of helping fix this is on you.  You are the one who is not at your wits' end.  You get some kind of positive feedback from your relationship with your kiddo.  I am not talking about manipulative triangulation (Dad makes child favorite food for lunch, kiddo thanks mom knowing full well that dad did it), but a sense that the kid just doesn't click with your spouse.  This is not the be-all, end-all discussion of this topic.  This is my letter to me.  That's why the kid is male and the non-preferred parent is a husband.  I know that isn't the case for some or even most folks.  Change pronouns as you need to.  If it's useful to you, great, and if not, just drink your coffee and pray for something that makes sense to you, knowing that other people are here, and there must be some hope for all this.

Here goes.

**********
Dear favored parent, 

Here are a few things you need to know to preserve your married relationship and support your spouse as he takes the hard road to a healthy parent/child relationship.  Your road may have sucked, but it was the easier way if only because it was shorter.

1) Believe your spouse.  You may be tempted to try to find the source of the disconnect in some aspect of your husband's understanding of parenting.  This is only useful to the point that it helps him feel it isn't some immaturity or a fundamental flaw in his personality that is creating this problem.  You are parenting a traumatized kid.  Even if you have experience with that, you haven't parented this traumatized kid before.  Be gentle, encouraging, and kind.

2) Do an objective evaluation of your child's developmental age.  Assess their functional academic intelligence (not eventual capacity, but right now).  Assess their working memory.  I swear, the one thing we say time and again in our adoption support groups is how smart our kids are.  Even when they are academically lost, there is a survival intelligence that post-institutionalized kids just have, and use to keep their circumstances predictable.  Some kids puke on demand while looking you dead in the eye to make sure an adult doesn't ask them to eat anything undesirable or so you can't leave to go grocery shopping.  Sometimes they watch for stress in your life and give you a hug to make sure you notice their importance to you.  Some of our kids are incredible memorizers and some are masters of lying.

At the heart of it, though, you have a kid who (if internationally adopted) is no longer speaking their native language.  They are Limited English Proficient (LEP), and need to be treated as such in our expectations of them.  When they are trying to remember "go to your room, pick up the toys first, and then make your bed," they are oozing stress hormones.  Most of us think with words, and our LEP kids don't have a fluent internal dialogue.  What this means for relationships for us is that the kid may only have the capacity to follow one parent's directions.  To entertain the possibility of always being "on" for two adults is something the kid isn't capable of right now.  The non-preferred parent may have to make requests visual (picture list of steps requested) to get the compliance that the other parent gets with words.  

3) All your kid's relationships have to first be addressed through a lens of pathology.  Every relationship has to be assumed to be unhealthy and proved well through gentle releases of restrictions and rules.  You navigated the sick version of "be pleasing to stay safe" or "be so needy that you stay safe" or "break every rule to find out how much trouble you can possibly get in to find out if this caregiver is really safe."  And you overcame it with the consistency of your response, the hawk-like focus on rooting out inconsistency, the prevention of of new pathological tests before they cropped up.  You are probably the parent who does this best on instinct alone, so you have been allowed into your kiddo's world.

Unfortunately, there is a one-parent limit into safety world for your kid.  Or maybe you are the one who is focused on always saying yes and your kid started with another pathological relationship that led to true connection with time because of your safety.  I don't know how it works, but for some of our kids, it seems like there is only room for one.  Acknowledge that your kid's receptivity to you is different than to your spouse because of the nature of trauma--NOT because you have some magic key they need to mimic.  Get it into your mind and truly believe that if you cloned yourself, your kid would only be able to click and grow with one of your two copies of you right now.

4) Relinquish your own authority when kid tries to go over other spouse's head.  But don't play their game.  This one is hard, because it's really easy for your kid to use it to feed their false narrative that only one parent is good.  For instance, when Nugget hears Dad is going to the grain elevator to pick up pig food, he turns and asks me "Mom, can I go with Dad to get pig food?" I used to respond "ask your Dad," which reinforced his belief that mom was the authority.  Now I don't look at him, and walk out of the room like I didn't hear him.  If he pursues me, I will give him a non-verbal look that is the same as your response to the question "Are you going to give me a car and my own iPhone when I turn sixteen?" and then move again.  He pretty much knows at this point that this is not my permission to give or deny.  Then he runs and asks "Dad, I can go with you?" and dad is often peeved at the game (because he's a human being) and thinks "no, because you proved again I am nothing to you," but instead says "sure."

5) Praise the heck out of your spouse when he is nice when he doesn't feel like it, when he uses a loving tone, and for any progress kiddo makes towards accepting him.  Do NOT praise your kiddo for this improvement.  This is a tricky one and assumes your traumatized kid isn't making any effort.  Back in the times when we were both lost with how to survive the challenges of Nugget, we figured out that we could be kind even when we didn't feel loving.  Remember that time?  When you looked on that kid's face and didn't go all "There may be something there that wasn't there before"?  Your spouse is still in it.  Point out to him when you see a little glance of admiration, or a quickness to comply, or any time he asks your husband something directly.  You need to help your husband to look on his kid with love when the opportunity presents itself.  This is going to take some time.  The sense of failure for not being the preferred parent is strong, unfair, and real.  It happens in bio families, too, in kids with processing issues and cognitive differences.

One thing I work hard not to do is comment on Andy's and Nugget's relationship to Nugget himself.  If a stranger comments, great.  But for me to insinuate myself as an observer with a goal for how their relationship can and should look, I am going to accidentally kill the little plants by over-fertilizing them.  The improvements will be about pleasing me in the kid's hyper-focused eyes.  But, when I let the relationship itself be the reward for the one who is responding to the efforts of my self-sacrificing husband, I am giving them the air he needs to come into this on his own.  My role is to help my husband not become resentful in the apparent futility of his efforts.  It might be wise to get in touch with a professional counselor to help shake the truth out of this situation so your spouse can get back in the pursuit again.        

6) Pray for your husband, audibly, and with the shameless fervor you would ask God to remove a tumor from his body.  Lay your hands on him, and just pray.  You can tell this post is getting wordy and too generalized and then uselessly specific, because it's heavy with advice giving.  You know what your spouse needs to get through this challenge.  Or maybe it's a child who isn't clicking with the adopted kiddo or kiddo from trauma or with a challenging diagnosis.  What matters is that you do not assume your connection to the kiddo is because of something you did that your better half can just imitate to get similar results.  You are asking your spouse to find a path that has been blown up behind you, so it is going to take a new path to get in to your kid's heart for the other parent.  When you are trying to find a way into hearts, it's your best first step to talk to the One who made those hearts.  At the worst, it's a reminder that you are both loved and doing Godly work to redeem one heart.

7) Seek out and offer respite to the non-preferred parent, even though you may do most of the childcare. My next post is going to be all about respite, and staying healthy by getting the heck out of this place from time to time.  But even giving your husband the space to work on something alone without a kid helper every now and then can be huge.  I am notorious for tossing a few kids into the car with my husband, because I know he isn't deliberate about one on one time with the kids and those are some of my best memories of my own dad.  But, I am going to try to warn him a bit now, because I know he won't ask for some space until he is at his wits' end.  And that will not lead to happy memories for anyone.  I am also trying to work out a way to get him to the August meeting of The Atlas Club, an extra-needs dads' retreat in Afton, Virginia that the new respite organization A Mother's Rest is putting together.  It is becoming more apparent that our "recklessly abandoned to Christ" lifestyle needs much more deliberate times for rest and family togetherness than our old lives required.

7) Just say how proud you are of your spouse for having the tough job.  And admit it's nice to look at your kiddo and feel something positive.  Share those positive things you feel once in a while, just to say "this is a normal kid under that thick layer of BS, so keep fighting you incredible dad, you."

As you can tell, I really know nothing, but this is at least what we're trying.  For tonight, there's 89 episodes of Frasier recorded on the DVR and an Edwards chocolate creme pie in the freezer.  Let's get back in it tomorrow.

Love,
Jaime
***********  
There is probably the biggest reason we aren't adopting again in this post.  And it breaks our hearts, because Hazel so desperately needs a family now.
What daddy couldn't see this little girl, just untied from the corner of this crib, and not want to make her his?
But Nugget's and Andy's relationship is not all there yet.  And may not be for a long, long time.  And we know how adoption can rock a family, so you better start emotionally in top form.  And so Hazel cannot be ours.

There is real grief that my husband is continuing to confront alone from our son without being active on Facebook, without having any real life friends to talk to regularly (he's a guy).  My husband does not rest until every one of his kids is at their best.  He set that standard all on his own, creating and defining the role of a father in the family he wanted.  A family strong enough to bring hurt children in and help them heal.  If I can do these seven things every day, I can at least not stand in the way of the hard work he alone must do to make that dream become reality.   One day I know he will win the heart that keeps insisting it does not need him.
Photographs are so important in this battle for hearts.
There is truly something growing between this Andy and Nugget, if only for a moment.    

My husband's vocation is to be a father to these eight children.  To love them where they are at, to raise them in the faith, to form their consciences, and to fight for their restoration when they are hurt. It is a privilege to stand beside this man in the hardest version of that calling he has experienced yet. He is waiting for the tide to rise again, so the waves don't throw him against the rocks.  He cannot rest, but I will make sure he does not grow too weary.  Some days I think he is just going to give in, but I know he will never be happy until he feels like this little boy is his son.  Until he doesn't have to use the word "should" when he describes how he feels about him.

I think there is a big metaphor of God's love for us in here, but I'll leave that for you to ferret out.  In the meantime, I will watch and wait for Nugget to know what his siblings and I know.  He has the best Dad in the whole world who will watch and wait, for as long as it takes, for the chance to make it to you on the shore.