How Tommy’s Life Changed Mine: Guest Post by Laura Musser

March 12, 2015 at 12:00 AM by Susanna

NOTE:  The following was written spontaneously by our oldest daughter, Laura, age fifteen.  She gave her permission to post it here on Tommy’s eighteenth birthday. 

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Tommy has had a huge impact on my life.

It has only been half of a year since he died, and it will be easier to see how his life affected mine in another year or so, when a big picture is more obvious.

One thing I recently noted is that during the time he was here, I started thinking the thoughts that eventually led me to realize I am needed as a missionary.  His life was a good example to me of how precious little time we have to live on this earth–we could die any time–and how to spend that time.  Tommy lived the worst life I ever heard about, and he had the biggest smile I have ever seen.

Looking back, I can really see how my relationship with God had a spiritual “growth spurt” during the time Tommy was with us.  His life, his story with us, and his death have affected many people, I know, and they continue to.  Personally, they have made me much more aware of God’s constant presence, of the spiritual battle in myself, and of the truth of Isaiah 40:6-8:

“All flesh is grass,
And all its loveliness is like the flower of the field.  
The grass withers, the flower fades,
Because the breath of the Lord blows upon it.  
Surely the people are grass.  
The grass withers, the flower fades,
But the word of our God stands forever.” 

Tommy is with Jesus now.

It was God’s decision to take him to heaven.  He will no longer be sad or hurt or sick or smelly.  He no longer needs a wheelchair, for he can run and dance for Jesus with straight legs in heaven.  He can sing, too.  No one there will be mean to him or disgusted with him or pity him anymore, for he is loved, and he is beautiful.

I miss my brother, but I am glad he is with Jesus, and I know I will see him again one day.  Tommy has made me more ready for that day!

“Let the little children come to me, and do not forbid them; for of such is the kingdom of heaven.”

 

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Breaking Free Brandon Auction April 1-7!

March 10, 2015 at 5:18 PM by Susanna

NOTE:  The following message was written by Amanda Unroe, who has generously volunteered to coordinate the Hidden Treasures online adoption fundraiser auctions.

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Hello all! This time next month the Breaking Free Brandon Auction will be over and done…..We need your help to make it a huge success!

I haven’t headed this up before, but I know that there is a huge group of people who’ve worked to see numerous orphans from Pleven become beloved members of families and many of those people are on our mailing list. You are the heart of Hidden Treasures and you have my heartfelt gratitude for your help in bringing home my four, along with so many others.

There is a post up about Brandon, his story, and his family:

Our April Family Is…

The post just prior to it gives an introduction to my family for those who may not be familiar with who I am and also an update on our four children from Pleven. I wanted to let all of you who’ve worked so hard, donated, bid, and followed along see the fruits of your hard work…as well as the reason it is so vital that we all hurry and work to get them out.

You will notice along the side bar that there is now a search option, an option to follow by email, and pictures of two of the waiting children.  The link that is to give updates on past Hidden Treasures children is something I hope to have updated for you soon as well. I am waiting for some more pictures, but already have a few that I will add very soon.

Please feel free to contact me with questions or comments!

I look forward to working with you…

Remember the dates of the upcoming auction are April 1st through 7th, so I am counting on everyone to spread the word and help the donations come in. I have one special donation that we are anxious to announce!

Love in Christ,

Amanda Unroe

 

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Q & A: Katie at 3 years home

March 8, 2015 at 12:09 AM by Susanna

After reading this update, if there is anything else you’d like to know about Katie, please feel free to send your questions for consideration to susanna@theblessingofverity.com or leave them in the comment section.  Next time, I’ll try to do better than the few disappointing photos in this very long post!

If you only have time for a quick before and after, check out the first and last videos at the very end of this post.

 

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Question: Is Katie still growing?

Answer:  Yes!  She did a respectable amount of growing this past year.

Look at this!

Pick-up week: 29 inches and 10 lbs. 9 oz.

1 year home: 36 inches and 33 lbs. 8 oz.

2 years home: 38 1/2 inches and 40 lbs. 2 oz.

3 years home:  43 inches and 50 lbs.

That translates to size 6/6x and some size 7 clothing to accommodate her girth, although the ends of her sleeves often must be turned up for her shorter arms.

Interestingly, Katie’s final baby tooth began to come in before we got her home from Bulgaria, but in the 3 years since then, multiple adult teeth have come in, and she’s lost several baby teeth as well.

Furthermore, she’s showing a hint of approaching puberty as she turns the big THIRTEEN this month!  Personal details about the big change will not be forthcoming on this blog; we’re just happy to report that it looks like she will be experiencing it at an age-appropriate time.

What a big girl you are, Katie!  She’s much more curious and engaged in what’s going on around her than she used to be!

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Question:  How well can Katie communicate now?

Answer:  Her receptive language ability has continued to expand at a decent rate.  She can follow many simple verbal instructions without additional visual prompts.

For example, when I’m holding her on a potty and want to know whether she’s done or needs to do more, I can ask her; she either signs, “Done,” or says the word for what she still needs to do.  I am SO proud of her!

Her speech and sign language are slowly coming along.

Her vocalizations are still mostly restricted to “B,” “P,” and “M” sounds, with some occasional “F,” “G,” “H,” “K,” and (consonant) “Y” sounds and rarely, some “D” sounds.  The only sound she hasn’t directly mimicked so far is the “D” sound; however, it’s exciting that the few times she has used it, it was an appropriate time to say, “Done.”

She can nod her head and answer, “Yeah,” appropriately in response to simple questions such as, “Are you hungry, Katie?” or, “Would you like to spin, Katie?”  (More often, she replies by signing, “Please!”)

She vocalizes a decent “poof” when I sprinkle powder on her during a diaper change.

She consistently attempts to mimic some words, such as “home,” “up,” “off,” “cookie,” “cake,” “Katie,” “dog,” and many “B” words such as “bird” and “baby” and “balloon” and “bus.”

She only rarely mimics a vowel sound.  More often, if she attempts it in response to my exaggerated modeling, she forms it with her mouth but doesn’t add sound.

She’s always delighted when I model a hearty “Ha-ha-ha-ha-hee-hee-hee-hee-ho-ho-ho-ho!” for her, and she always joins in with a “Huh-huh-huh-huh-huh…!”  Which dissolves both of us into real giggles!  We love being silly together, and have our own little goofy games we play.

I am working with her on limiting herself to the correct number of syllables the way I did with Verity when she was learning to talk, by putting verbal emphasis on each syllable while shaking a finger for each syllable.  She’s responding very well to that.  For instance, saying “Buh-buh” for baby, “B-B” for bib, “Puh-puh” for puppy.  Without that reminder, her “B” and “P” words turn into long strings of “B” or “P” sounds, and “Yeah” usually comes out as “Yuh-yuh-yuh-yuh-yuh…”   [“Wait, Katie!  Only ONE Y-Y-Y-YES!”  *holding up one finger and shaking it once to emphasize one syllable*  “Yuh!”  “YAY, KATIE!  Big GIRL!  Good TALKING!  Good saying ‘YES!'”]

She understands a small but growing number of signs, and is increasingly trying to form them herself, although they are typically what would be labeled “word approximations,” and might not be recognizable to those who don’t work closely and regularly with her.

A half hour of Signing Time every Friday night usually gives us a few more signs to work on.  This week, we’re working on the signs for “shoes” and “socks.”  I’ve found that Baby Signing Time is much more appropriate for Katie’s cognitive and fine motor level, though, and sometimes I find an even simpler (non-ASL) version to make a sign manageable for her.  For instance, she’s nowhere near ready to fingerspell “toy,” which is the ASL sign for that word.  But “toy” is such a basic sign for a child who is cognitively on a toddler level, so I’m teaching her the ASL sign for “play,” but this non-ASL sign for “toy.

She follows me closely and responds appropriately every morning when I talk and sign (and often sing!) about the day’s weather after I put her on her potty facing the window.  She loves being out in all weathers, and understands “outside,” “cold,” “day,” “snow,” “rain,” “clouds,” “sun,” “wind,” and other forms of these words that I interchange freely, such as “sunlight,” “sunshine,” and “sunny.”  She puts her hands out eagerly and tries to form the signs with my help.

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I talk a lot and sign a little (I’m slow to learn sign!) about what’s planned for that day, such as, “It’s a school day, Katie!” or, “No school today, Katie; it’s a home day!”  Interestingly, she attempts to sign “school,” (in which one twists one’s hands slightly and claps twice, like so) but tries to verbalize the word “home.”  You’d hear a brief and breathy, “H-m.”

She can independently sign, “More,” “Please,” “All done,” “Excuse me,” “Toys,” “School,” “Wind,” and she also waves, “Hi” and “Bye.”  She can sign “Cold,” while chattering her teeth!

Her expressive communication has so far been limited to concrete concepts that are right in front of her, or that I’d just talked about.

With one recent, thrilling exception!

Her last day of school before Christmas break was changed to a half day, a confusing change of routine for her.  Then on the next morning, Christmas Eve, which was on Wednesday, smack in the middle of the week, I had the audacity to lay out non-school clothes for her and tell her, “No school, Katie!  You’re going to stay home today!  It’s Christmastime!”

I moved right along to talking about all the fun things we would do to celebrate Jesus’ birth, but she was stuck on one thought.  “This is a school day and Mama’s not getting with the program!”

I chattered on about singing Christmas carols, taking her hands to clap “Hurray!” about singing, still one of her favorite family activities.  She paused and looked thoughtful.  Then she looked meaningfully at me, clapped twice (her sign for school), and hit her tray with a sour expression on her face.  Clear as clear–“Mama!  You’re not getting me ready for school and I don’t like that!”

Poor girl was further confused, I’m sure, by what followed–Mama hugging and kissing and whooping and laughing and praising and running out the door and hollering down the stairs to everyone else!

She really and truly talked to me for the first time!!!

 

 

Question:  Is Katie walking yet?

Answer:  She’s been walking with one hand held for quite some time, but only recently has switched from trying NOT to walk independently, to trying TO walk.

The following video was taken several months ago, near the beginning of this progress spurt, and shows her initial hesitation, which we rarely see now:

 

Not surprisingly, her progress in this area has sped up as a result of her increased motivation!

She walks up steps by herself, sideways, gripping the handrail, one deliberate step at a time.  In fact, she gravitates toward staircases, and anytime she comes near them, she must walk up them, whether or not she actually wants to be at the top.   Funny girl!

The biggest news is that she’s taken as many as seven independent steps! She is SO close to walking independently and knows it very well!  We’re encouraging her to walk with more control rather than lunging forward.  We do this by standing and holding out one hand for her to take rather than squatting and catching her.  We also encourage her to walk away from us to a table or other goal that’s not soft and squishy like a person.

Here she is with Lina Carpenter, her former roommate on the top floor of Pleven.  We could hardly hold them still long enough to capture a recognizable photo!  These girls are on the GO!

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Question:  Does Katie have any orphanage behaviors left?  If so, what does that look like?

Answer:  I determined to answer this question exhaustively after hearing an observation made by an adoptive mom friend of mine who brought home a little girl who had also been extremely neglected in a Bulgarian orphanage.  Her little girl was self-harming, a not uncommon result of years of being deprived of human interaction and sensory input.  She told me she had been curious about Katie’s orphanage behaviors until her child came home and continuously self-harmed, then assumed those were Katie’s behaviors as well.

Hearing this, I realized that I have been too vague.  Katie’s self-harming behavior (chewing on her wrists) stopped after we brought her home, replaced by a very rare (I’m talking maybe two or three times a year) slight, quick slap to the side of her own head to express her displeasure over something.  She’s more likely to slap whatever surface is in front of her and make a sour face to show she doesn’t like something.  Over the past year, she’s shown an increased tendency to give me an irritated little push, or to head-bump me if I’m behind her, when I stop her from doing something inappropriate that she really wants to do.  It’s so subtle, however, that casual observers would miss it if they weren’t looking for it.

So what are Katie’s behaviors?  I will belabor the topic this time, so be warned that this section will be too long and dull for most readers.  To keep it from being even longer, I’m putting the topic of her attachment issues into another section.

Katie has ever-present habits related to her sensory issues–excessive restlessness and a strong craving for auditory input.  She rarely has one second when she is not making some type of noise using her hands or mouth or face or vocal chords or all of the above!  She is also constantly shifting her position, and will also grimace in various ways, either alone or in conjunction with noisier behaviors.  Over time, she drops some habits but always comes up with more to replace them.  She often experiments with new habits, sometimes after an accidental sensory experience that she wants to repeat, which then turns into a habit.  Her newest favorite is a juicy raspberry, or a slurbert on her hand or arm!

However, she is more and more responsive to cognitive input vs. the noise of sensory input.  It’s the best way I know of right now to help her progress in this area.  Talking on her level about what’s happening (for instance, when someone’s noisily loading the dishwasher right next to her highchair) helps her tune in to the meaning of an event rather than tuning out on the sensory experience.

She’s figured out how to wiggle out of her jammies!  Joe walked into the girls’ room just ahead of me one morning and remarked, “We have a Naked-emus in here, I see!” Not a stitch of clothing or diaper on!  So Katie has joined the ranks of those who must wear their jammies backwards!

The way she sleeps makes me smile!

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More behaviors–

She likes to pull her foot up near the side of her head, and would bang or rub the side of her head with it or squeak her teeth on the sole of her shoe if she were allowed.  This is why she has foot restraints on her wheelchair, to give her the dignity of more socially appropriate behavior than she can manage on her own at this point.  Not to mention it keeps the dirt on the soles of her shoes out of her mouth.

Because of Katie’s restlessness, her strength, and her poor judgment due to her cognitive limitations, she needs various protections around her, similar to caring for a toddler.  So we use a play yard when necessary to provide her with an appropriate play space with items in it that she can’t break or tear.  She needs a five point harness in her seats, whether highchair, wheelchair, or swing seat, in order to keep her from squirming out of her restraint, falling down, and wandering off.  If it’s not snug enough across her chest, she’ll still wiggle her upper body out of her restraints, and has arrived home on the bus this way more than once.

She’s beginning to learn what it means to “sshhh,” with a finger held first to my mouth, and then to hers, whispering, “Time to be quiet,” but she forgets after a few seconds, so she still needs lots of reminders.

She blows her nose into the tissue a good percentage of the time now. Before this, she understood that blowing one’s nose had something to do with the tissue, but she’d blow when I took the tissue away, then I’d wipe her nose, then she’d blow, et cetera. She thought she had it all figured out.  “First I blow, then you wipe!”  She loves the noise it makes to blow her nose and has no inhibitions about blowing it just to hear the noise it makes.  What finally worked was to rhythmically squeeze her nose while demonstrating the sound it would make if she were blowing her nose at the same time. She found that hilarious, and in time, she caught on.

She’s now learning about covering her mouth when she coughs.  She puts her forearm up to her mouth when I say, “Cover,” but the timing will be trickier than blowing her nose, since coughing takes her by surprise rather than being a deliberate action like blowing her nose.

Katie’s play skills are still extremely poor, as her attention span is so minimal and she habitually uses toys to feed her sensory appetite rather than to play with.  She does no imaginative play at all.  However, she will now play appropriately for a minute or so with a few toys on her own, so that’s progress.  One of them is her Katie-doll.  Katie-doll is a happy part of Katie’s bedtime routine, as you can see below!  She hugs her and uses a nice, soft touch for a little while, before reverting to the stereotypical shaking and banging.

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Without direct hand-over-hand or lots of close direction, most of her free play time is spent observing the people around her while engaging in any of her wide variety of hand/face/mouth stims, or shaking, rubbing, or banging one toy or another near her ear to listen to whatever noise it makes.  She likes to feel the noise inside her head, and gets quite aggressive in order to accomplish that.  Sometimes it’s the over-stimulation itself that pushes her over the edge into aggressive play and when it reaches fever pitch, she throws the item.  She knows, for instance, that she’s supposed to turn her rain stick upside down or shake it to hear the sound it makes, but appropriate rain stick play lasts a few seconds and very quickly turns to over-aggressive rubbing, banging, and rolling the rain stick on the side of her face and head until it suddenly goes flying.

She recently learned to enjoy shaking stuffed animals or blankets, and rubbing their soft textures against her face.  This is new, as she hasn’t had a use for silent toys before.  If one was handed to her, she would immediately shake it out of her hand and then ignore it.

Because she still throws toys down when she’s finished with them or overstimulated by them (and because Tommy threw toys regularly and vigorously as part of the way he played), we long ago removed large, heavy toys from the play area.  We also take precautions like placing her keyboard on a shelf where she can reach it but not remove it.  She doesn’t throw items off her highchair anymore, which is major progress!

We replaced the plastic toy tubs with a large, heavy-duty open wooden toy box that Daniel made to order for us one evening last spring.  This was after Katie broke her second plastic bin by emptying all the toys out and banging the tub forcefully onto any available surface.  The toy basket had previously met a similar violent end.  No more Wal-mart quality toy storage solutions for us, with a strong toddler the size of a growing six-year-old in our family!

You can catch a glimpse of Daniel’s skillfulness in the next two photos.  Notice the handy play yard we can set up or fold up quickly as needed.

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After I put Katie on the school bus, kiss her, and have her wave bye-bye, she reaches up to grab the long shoulder strap of her bus seatbelt and spends the entire bus ride banging it back and forth against the window.  It bothered her bus driver until I convinced her it wasn’t important enough to give thought to.

We are so used to Katie’s constant behaviors.  It’s just part of our world now.  I guess they do seem strange to the uninitiated?  I forget how weird they must look and sound to others until I take her among strangers!  Those who see her often, such as her school bus driver, will sometimes tease her, “That’s a new one, Katie!” or, “What’s that all about, Katie?!”

She has decent self-control over behaviors she knows she’s not allowed to engage in, but only when she’s not sleepy, when she’s in normal home conditions, or when she’s being closely monitored or kept busy.  Not so much when she’s tired, her boundaries are either being breached or close to it too often for too long, or when she thinks nobody will notice or stop her inappropriate behavior.

At home, I only redirect when she is too rough with items on the side of her face or head, when she bangs a toy loudly on a hard surface, or when her behavior would otherwise be bad for her or something or someone near her.  She would do these things indefinitely if not stopped.

To avoid power struggles, I try to be very understated and brief about problem behaviors and then make a HUGE, HAPPY deal about her slightest move toward making a good choice.  I often use a casual, almost off-hand, “Try again!” and guide her hands into the appropriate action, then change the subject and move on.  Often, I simply need to replace one item with a less problematic one.  For instance, she was obsessively and loudly scratching and banging the hard plastic eyes of a stuffed animal on the inside of her bed, so I replaced it with one that had no hard parts, but did have the pellets inside that feel and sound nice to her when she shakes and squeezes them.

In public situations, I’m likely to be near Katie, and can readily redirect her when needed.  However, when I can’t, such as when she accompanied me for the first time to my dental or counseling appointment, I break the ice by introducing the elephant on the table, saying humorously, “Please kindly excuse all the oddities coming from that direction!”  And go on to explain the why behind her unusual behavior as best I can.  Her sweetness and expressive exuberance always win every heart!

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Question:  How is her attachment coming along?

Answer:  Oh my, is this ever the million-dollar question!

It’s typically one step forward, two steps back for Katie.  Her attachment has been challenged too far too often recently, so we’ve seen some regression, specifically back into pushing me away and preferring other people to me.

It does seem like she responds to my increased efforts at connecting with her by bouncing back from her regression more quickly than she used to.  It also seems as if she has a greater cognitive awareness of the appropriate outward behavior, in spite of how she feels like acting on the inside.  I take both of these as a positive.  Actually, I take a lack of regression as progress when it comes to Katie and attachment!

So what do Katie’s attachment issues look like?

She’s still very hesitant about eye contact, and she has all sorts of strategies to avoid it, like rolling her eyes up into her head as if looking at her bangs, crossing her eyes, or putting her hand out toward my eyes as if to shade herself from my gaze. The further away I am from her the more she can tolerate eye contact, but eye contact is still infrequent and brief, even when I can see she’s trying hard to push herself past her comfort level.  She’s made a small amount of progress, maintaining contact for a couple of seconds in contrast with the mere flicker she managed in the beginning. If I attempt to hold her like a baby, she still squirms and twists her neck way back, protecting herself from the vulnerability of a face-to-face posture, just as she did the very first week I held her in Pleven.

I have been unwilling to force this type of contact, such as forcibly wrapping her in a blanket, holding her tightly in a baby hold in spite of her struggles, all the while rocking her at a set time daily, despite advice from others that it really works.  It just sets off my personal alarm bells, probably because it reminds me too much of scary control tactics promulgated by fringe parenting “experts.”  So I guess I can’t say I’ve tried everything.  *wry grin*

Katie’s biggest ongoing problem is her obsession about the physical proximity of anyone who isn’t her primary caregiver, and her tendency to turn on the charm in an attempt to get positive attention from them.  (Primary caregiver=Mama)  This tendency has been present from the first week we had Katie, but we didn’t recognize it until much later.

It has gotten more complex, more severe, and more noticeable the longer she’s been home, and usually goes like this–

1)  An immediate physical, almost visceral reaction, like a startle reflex, if she thinks someone else may come into her personal space.

2)  A total, absorbed focus on that person.  At this point, she often tilts her head way over to the right side and wobbles it back and forth.

3) If the person does come toward her, especially if he or she comes into her personal space, makes eye contact with her, or otherwise tries to establish a personal connection with her, she will begin to squirm uncontrollably.

4)  If the person comes close to her, she’ll focus on the part of them that’s closest to her body.  She’ll often try with all her might to lean her body closer to them, and do all she can to get their attention.  For Katie, this looks like certain facial expressions and mouth noises such as whistling, blowing or kissing with puckered lips, wearing a charming smile that can disappear as quickly as she puts it on, silly laughing, and sometimes bobbing her head back and forth.  It looks for all the world like she’s begging, “Look at me, I’m so cute, pick me up, hug me, take me home with you!”  Et cetera.

5)  At this point, she’s dying to reach out and touch them and sometimes does, if possible.

6)  Afterward, she often tucks her chin down and smiles to herself and sometimes chuckles to herself as well.

If I’ve been putting a lot of time into connecting with her, so she’s in a better place as far as attachment goes, she responds well to redirection.  If I’ve been away or busy and haven’t spent as much intense one-on-one affectionate time with her, so she’s in a rough patch, she will give me a backlash of some sort if I try to redirect her.  I can usually redirect her either by calming her down with deep pressure and a verbal reminder if appropriate or helping her greet the person if appropriate.

In this photo, she was mentally processing the strangers who were all around us, including Lina.  You can see her hand is up by mine, beginning to push it away.

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This routine can vary slightly, but it’s been pretty predictable.  I can count on the fingers of one hand the times that she’s kept a grip on herself and behaved in a socially appropriate manner without any reminders.

In contrast, Tommy did his “charm routine” for a few months after coming home, but he dropped it as he relaxed and began to trust and bond with me.  After Katie’s resistance to bonding, this was such an unexpected gift, like a jewel, and I will treasure it in my heart forever.

Katie’s behavior is commonly called “parent shopping,” but I disagree that parents are truly what the child is seeking; rather, it seems to me that they crave the high they receive from superficial interaction with those they can manipulate.

We have a theory that was formed as we watched Tommy during his first months home that helped make sense of both his and Katie’s frantic charm routine.  We’ve wondered whether positive attention from strangers became imprinted in their survival mechanisms, which would explain its seemingly involuntary nature. Their regular caregivers were nothing to them and they were nothing to their caregivers, but very occasional visitors from charity groups–strangers–would pick them up, interact with them, and make a big fuss over them.  This positive interaction truly was vital to their survival, as God designed human beings to connect and interact with other human beings in order to develop as emotionally healthy people.  So as long as Katie maintains her efforts to stay in control, not relaxing her vigilance and trusting that she’s safe, she is still living in survival mode, or can flip into a survival reaction at the drop of a hat, and that looks like desperate attempts to get attention from a stranger.

In addition, Tommy’s baba (two hours twice a week) had healthy expectations and requirements for him to make progress, whereas Katie’s baba (four hours twice a week) readily gave in to her preference to stay in her bed, so Katie has never relinquished control or formed a healthy attachment.  No child can completely relax and trust that they’ll be taken care of by an adult they can fool or manipulate, because they consider themselves smarter and therefore more powerful than that adult.

Are my theories and opinions correct?  Who knows!  It sounds logical!  The more we travel this road, the less we realize that we know!

Another obvious contrast between normal and abnormal attachment is provided by Verity and Ben.  For instance, if I have all three children in the church nursery, Ben and Verity will constantly reference me by glancing toward me, talking to me, coming to engage me for a few minutes before going to the next activity, etc.  Once in a while Katie will climb onto my lap without any prompting, but that’s a rare red letter day.  She almost always ends up moving toward the door, looking through the window in the door, and attempting to open it so she can go out.

However, if we’re at home, and she’s playing nearby while I’m typing, and there’s nobody else around, she’s more likely to spontaneously come over to me and climb up onto my lap.

This article, titled “Disinhibited Social Engagement Disorder” describes Katie’s issues so aptly. I sent it to her teacher, and he replied, “I went through the checklist and marked the ones I thought applied to Katie. I ended up checking all of them.”

The article mentions attention-seeking behaviors, but doesn’t specifically talk about the superficial charm toward those who are not the primary caregiver, the demonstrated preference for just about anyone over the primary caregiver, even pushing the primary caregiver away when someone else comes around, and attempting to use triangulation of other adults, even Dad or older siblings, to manipulate and control.  Katie has exhibited all these behaviors and more.  For more about these symptoms, please watch this video on Reactive Attachment Disorder and read the review that follows.  I don’t know the mom who wrote this review, but I thoroughly concur with her opinions about the video, both the negatives and the positives.

Katie responds best to me when there are few distractions, including other people, in the picture, unless she’s not in a good place in her connection with me.  When, like right now, her connection with me has been threatened or weakened, even when we’re alone together, she refuses to engage and connect, but keeps cocking her head to listen and detect if there are other people around.

If she’s in a good place as far as her connection with me, she is so happy to see me coming and says, “Mama” in a happy voice, interacts so sweetly with me, stays very engaged, tries hard to talk and sign, cooperates willingly with whatever I’m doing with her, reaches out for me and gives wonderful, tight hugs and lets me cuddle her for long seconds…at times she wraps her body around me and holds on so tightly it seems like she’s trying to climb inside me.

But when others are around, especially strangers or large crowds, her switch flips and she’s like a different child, pushing me away and acting like an addict desperate for the next fix.  And then her negative response toward me can linger over the next several days.  If she felt like her efforts to get attention were rewarded, it can be weeks of hard work on my part to build us back to a positive place again.

 

Question:  How does it feel to be Katie’s mom when she’s pushing you away and trying frantically to get attention, approval, and affection from a stranger?

Answer:  It used to really sting, but I prayed shamelessly that God would make my job easier by giving me a strong empathy and affection for her right at the time when she was rejecting me in favor of anyone and everyone else.  It’s easier to show wholehearted acceptance and affection to a difficult child when you’re feeling it than when you have to “fake it ’til you make it.”  And He has granted my request.

Also, for a long time I had hope of future progress to take the edge off the hurt.

Over time, as Katie’s issues were undeniably growing more obvious rather than resolving, it was easy to question whether I was doing the right things or was somehow ignorantly making the problem worse.  I know from hearing the inside stories of so many adoptive families that with our children who have endured years of the equivalent of human experimentation, the typical solutions don’t apply or don’t work, and it’s easy to end up feeling like we are experimenting!  Hearing details of the experiences of other adoptive parents can help so much in gaining valuable perspective.

I can tell you that the true range of post-adoptive bonding experience is much, much broader than is apparent from reading most public adoption blogs.  I have benefited greatly by being in some private post-adoption group or other since before we brought Katie home.  So often, when she begins to manifest yet another issue, my memory says, “Oh yeah, I remember this mom or that mom describing this phenomenon in her family.”

It’s good to see that there seems to be more of a trend recently to be open about post-adoption struggles, risky though it can be to make oneself vulnerable in this way.  Eyes wide open is always best.  Building plans based on a best-case scenario is asking for trouble.  Perhaps God could use your hard story to prepare someone else for hard, or perhaps He plans to use it to weed out those would otherwise go into it for bad reasons, those who should not be adopting.

Nearly a year ago, I had an opportunity to speak extensively on the phone with a post-adoption attachment therapist, a colleague of the reputable Dr. Karyn Purvis.  It was reassuring to hear him say that Katie’s behavior sounded very typical.  However, he couldn’t tell me the best approach to helping Katie heal, other than, “It could take a lot longer for her because of her extreme history and intellectual disabilities.  You’re doing the right thing.  Keep doing what you’re doing.”

There does seem to be lots of discussion about the problem, but rarely any solutions for children, like Katie, who do not have the cognitive capacity to process verbal explanations about complex abstract concepts.  

And in the above article, it states blankly that children with Disinhibited Social Engagement Disorder don’t heal, but have a tendency to develop worse problems down the road.

So now?  Accepting the reality that Katie may never know it’s safe for her to be vulnerable so she can heal on the inside?

Way back before bringing Katie home, I was prepared to accept a lack of developmental progress, but I would have been dismayed if I’d known that Katie would still have failed to truly bond with me after more than three years home.  Now, with the perspective borne of experience, it doesn’t phase me at all.  Three years sounds like she’s hardly gotten started.

So I’ll simply sum up this topic now by saying that early in our journey toward Katie, I was awed to hear an experienced adoptive mom friend make the startling statement that she and her husband didn’t mind loving children who couldn’t love them back.  It seemed to me at the time that loving kids who can’t love you back must surely require superpowers.

But now I know it doesn’t, because that’s where God has taken me as well, and I don’t have superpowers.  It’s just that parental feelings simply aren’t the point of parenting.

God chose me to be the mama to a beautiful and sweet treasure who was very hurt and broken on the inside.  Katie and I both need Him so much.  I’m so grateful He keeps stripping away more of my self-focus and giving me empathy, patience and overwhelming love for Katie in the face of her ongoing confusion and rejection of me.  I’m so grateful for the healing He has already brought to her life, and am looking forward to any healing He still has in store for her.

But it’s an honor to be her mama under any circumstances, and I’m accepting and loving her just as fiercely whether she continues to heal or not.

Truly, every year that goes by, the harder and harder it is to find any trace of the shriveled, lethargic, dead-eyed Pleven orphan Katie in the face of this irrepressible miracle girl.

And it’s only been three years.

 

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Katie’s official referral video, taken when she was 7 years old, weighing 7 pounds.  This was the hungry baby bird our hearts went out to. 

August, 2009~ 

 

 

Two years later, on the last day of the first adoption visit.  Katie-bird is now 9 years old and weighs 10 1/2 lbs.

August, 2011~

 

Before she even reached the pediatric intensive care unit in the States, Katie had finally begun to grow, at 9 1/2 years old.

 November, 2011~

 

And grow she did.  She gained more in 1 month with her family than she had during the 2 1/2 years she had a baba in the orphanage.  In this video, Katie had been home for 2 months and had grown by almost 9 pounds and 1 1/2 inches.

January, 2012~

 

Still growing, still making progress.  Sweetie-girl, almost 13 years old.

March, 2015~