Wednesday, April 25, 2012

my favorite things

The other day I spent some time filling out our 12 month adoption post-placement questionnaire for our social worker.  Wow, where has one year gone?  I do not love filling out that form.  Sorry.  I just don't.  Especially since I will have to answer all the same questions aloud.  But I am happy to do my due diligence for the sake of The Adoption Process and The Powers That Be, and more happy that we'll be finished after this last report. 

One of the questions is this:  What are the special activities or favorite moments you spend with your child? 

This question is hard for me.  Every time.  I wish it weren't.   I feel horrible that I can't rattle off a list of a dozen things.  If you've spent three minutes reading my blog you've picked up on the fact that fear and a truckload of emotional dysfunction have often derailed what could and should be "normal" mother-son interactions. 

That's what this past ten (almost eleven) months has required, and what I have painfully, slowly, been learning how to do:  to let go of "normal" and "expected" and typical timelines and all the other expectations I've held dear.  I'm learning to reframe success so that I can recognize it in our present lives, and I'm beginning to understand how to answer that question.  For us.  Today.  Not the way I will answer it another year from now, or the way I wish I could have been answering it all this time.  But right now.

What are the special activities or favorite moments you spend with your child? 

When Shu walks or tries to climb the stairs, and he lets go of my hand because he feels confident and proud of his skills.

When he picks up little bits of trash off the carpet and brings them to me to throw away, catching my eye as if for approval.

When the little bits are actually food, and instead of cramming them in his mouth the way he used to, he is now content to throw them away because he trusts (usually) he will always get enough to eat. 

When I ask his sibling(s) to clean up this or that, and he comes to help, too.

When he finds dishes in the living room and knows to take them into the kitchen and place them on the counter even though I have never asked him to.

When he finds a pen on the floor and brings it to me, knowing he's not allowed to carry around a pen.

When we try something a second time, like touching a pineapple or a feather or Play-doh, even though the first time felt awful and scary and horrible, and I watch him relaxing and trusting and learning that it's all going to be OK and quite possibly even fun.

Not the typical "favorite moments," are they?  Not overtly warm or fuzzy or cuddly or giggly or emotional.  (And despite how it appears--bizarre, I know--we do not spend all our time cleaning!) A bit hard to construct into a questionnaire answer, an answer that wouldn't have been valid six months ago.  

But every one of those speaks to me of RELATIONSHIP.  So for a child who spent every moment of his first 13 months in an orphanage, not in a family, bringing me dishes and helping clean up is huge.  For a child who displayed extreme anxiety about food, no longer eating off the floor is major.  For a child who is still learning, like every other toddler, that "no" does not mean "I don't love you," bringing me the pen is significant. 

We'll keep working on those "fuzzier" activities--the books, the games, the snuggles, the smiles and all the other things that warm the heart.  But no way do I want to overlook our very real, slightly unconventional, but very good favorite moments.  May the list grow ever longer!

Monday, April 23, 2012

It's fun! No, it's torture!

I'm so super crafty, I know it'll be a race to add this to Pinterest.  Go ahead.  Be jealous of my skillz.  Behold, the new activity I recently made for Shu.  

Taking things in and out of containers is pretty much his favorite thing these days, and he needs practice seeing a task through to completion, so his speech therapist suggested I create something a bit simpler than the typical shape-sorter, which we have.  And voila!  It works great, and there are two dozen of those discs, so the activity takes a while. He also practices saying "in" (or "out" or "open") while he plays.

After every disc or two, I turn the container slightly.  Aren't I mean?


Shu usually gets the first few in, no problem.  Then he jams the disc sideways, repeatedly, and cannot seem to figure out how to turn it to make it go in.  (Quite possibly this is a result of his motor planning disorder.)  He hits max frustration level in about seven seconds and melts down.  I'm happy to help him (duh), and want very much for him to learn that a) I am happy to help him, and b) with practice he will improve at this task and not find it so challenging.  And let's add c) tantrums are tremendously soul-draining for us all.  Heck, I'm on a roll, let's keep going...d) I'm not trying to make him mad; I'm trying to play with him while teaching him something.  and e) he can and will become a reasonably happy, functioning person, despite plenty of evidence, thus far, to the contrary. 

But first, to deal with the meltdown.  I held him in my lap while he thrashed and cried, asking him to choose between staying with me to play or going to sit on his stool.  He chose the stool.  Took a few minutes, but he regained control and came back out to finish playing with me.  We are teaching Shu that he cannot just quit or tantrum every time he needs help or gets frustrated with his circumstances...which is often.  We are also providing opportunity for him to choose to get control of his emotions before we proceed with an activity, whether it's something he wants to do or not.  For instance, I refuse to change his diaper while he is crying or fighting me.  So I will wait (if I am able) as long as necessary until he tells me he is ready to continue.  I also will not get him out of bed until he tells me he's ready.  This has been very effective, and offers Shu a small element of control.  Amazingly, once he calmed down, he really required very little assistance from me, and was able to get the discs in the slot almost every time.  Imagine that. 

And that's the way it goes with him.  There is still so much fear in Shu, and I don't want to be insensitive to it.  But at some point he has to learn that life can be experienced safely within the context of mom's and dad's love and protection and assistance.  We can try our game again in a day or two...hopefully with 95% Less Drama!

From my Bible reading this morning:  "I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron.  I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the Lord..."  Isaiah 45: 2-3  

I can try (in vain) to be the best dang parent in the world, but I know there is a healing work to be completed in Shu that only the Lord can perform--mountains to be leveled, bars to be cut through, precious secret treasure in this little boy that will one day be fully day at a time, one hour at a time, one awesome homemade activity at a time.  

Wednesday, April 18, 2012

let's talk Apraxia, part 1

I mentioned a few posts ago that Shu has been diagnosed with suspected Apraxia of Speech, a "surprise special need." I've been wanting to write more about it both to document his progress and to inform others who might be on the same journey.

First, a basic explanation (I'm excerpting from the Apraxia-KIDS and the American Speech-Language-Hearing Association sites):   Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.  In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce.  Children use this information the next time they attempt the words and essentially are able to “learn from experience.”  Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic.  Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed.  Children with apraxia of speech have difficulty in this aspect of speech, as they cannot easily access these speech motor plans.   

What does this look like at our house?  For Shu, nothing about speaking has been "automatic" or "effortless."  He began physical therapy about eight months ago for significant gross motor delays, and caught up quickly.  As time went on, it became clear that something was amiss in his verbal communication, namely that there was almost zero expressive language--no mimicking, no "mama," no "dada," none of the typical sounds easily babbled by most infants (rather, all of his babbling sounds exactly the same:  "di-duh-duh-duh"), no attempting to make any of the sounds the rest of the family were making.  As physical therapy grew less necessary, speech therapy took priority, and I am thrilled and thankful that Shu now has an excellent speech therapist who is also a friend and a sister in Christ.  She did not waste time in recognizing the Apraxia, and sees him twice weekly; I know Shu will benefit greatly from starting appropriate therapy at his young age.  

Especially for those of you with personal knowledge of Apraxia or reason to be researching it, we began giving Shu ProEFA (fish oil) capsules in mid-February 2012, just one, to start.  We later increased his dose to two capsules. 

Here are the sounds Shu could make at that time (February 2012, age 21 months, home from China 8.5 months), most of them not spontaneous, but sounds he could produce when prompted:

As of 2/16/12
UH—uses for “up”
DUH—often mistakenly uses for “up.”  He would say UH (meaning "up") correctly twenty times in a row, but then twenty more times put a D in front of the word, with no awareness that he was saying it wrong.
OH (somewhat distorted)—uses for “open”
DOW (somewhat distorted)—uses for “down”
MMM--says for "more" or "milk."  Unable to add any vowel sound after the M.
B—often comes out as V or DUH but if prompted a number of times, can eventually produce BUH sound.

A very limited vocabulary for an almost-two-year-old, with classic earmarks of Apraxia such as distortion of vowels, extreme and obvious groping to produce most sounds, and inability to consistently produce a sound correctly (see examples above).  We worked on some basic sign language from the very beginning and found that Shu was either unwilling or unable to sign.  After six months he did finally begin signing "more" and went on to learn a few other signs (or approximations), but we still found there were some he seemed incapable of doing even when we simplified the sign for him.  Apraxia is a motor planning disorder, so it certainly can affect other parts of the body, not just the mouth.  We gave up on that specific sign (water) and instead focused on helping him approximate the word verbally.  Because signing seems nearly as difficult as speaking for Shu, we have mostly let it fall by the wayside and have continued to concentrate on helping him build a core vocabulary.  He is making steady progress and has added a good number of sounds/words in the past two months.

To be continued...

Thursday, April 12, 2012

We're building (P.S. I'm back)

Here's where we've been.  And where we still are.

It ain't pretty, folks.  You probably do not want to sit around taking photos of us right now.  It's crazy hard work.  We've messed up a lot.  And it feels like the slowest process imaginable.

This past weekend I was tempted to throw myself a small but well-appointed pity party because I can't get my kid to smile for a single Easter photo--you know, the kid who's been home ten months, was safe and secure in mama's arms, surrounded by familiar people in a familiar location.  Nope.  No dice.

This was the face in every photo.  Could be worse, certainly.  (Speaking of...who are these children doling out engaging, genuine smiles to their new parents mere minutes after being adopted?  Is there a box on some form I forgot to check?  I jest...I jest.  Kind of.) 

The past three weeks (up until about three days ago) have been Rough with a capital R and six exclamation points.  Somewhere smack dab in the middle of the Recent Roughness, I heard this:


Every bit of eye contact.
Every kiss.
Every laugh I coax out of my son, hopefully flooding his little body with all those feel-good endorphins which remind him Mama makes me happy; family feels good!
Every correction, redirection, or "no" that results in compliance instead of an emotional outburst.
Every time he pushes past fear and lets us help him climb the stairs...attempt to say a new word...touch a pineapple.

Even if tomorrow takes a brief detour to Stinkville, what we poured in today still matters.  It is not wasted or illegitimate.  The loving, tender moments are real.  We are painstakingly building a foundation that will last.
After that, the Word of God came to me: "Zerubbabel started rebuilding this Temple and he will complete it. That will be your confirmation that God-of-the-Angel-Armies sent me to you. Does anyone dare despise this day of small beginnings? They'll change their tune when they see Zerubbabel setting the last stone in place!"       Zechariah 4:8-10 MSG
I remembered the small beginnings part, but not that these verses are about building.  How cool!  And a few verses earlier, an angel brings the word of the Lord to Zerubbabel:  "Not by might, nor by power, but by my Spirit."  Does He mean that word for me too, right now, in my family?  Absolutely, yes.

What we have so far is not complete or terribly attractive.  It's not this.

But we're working toward something secure and unshakable.  One day it will even be beautiful.  It's going to take a while.  I'm learning to be OK with that.