Saturday, January 26, 2013

Update! January 26, 2013

A very quick update for family and friends out of town and not on Facebook:   Our dossier has been formally "submitted" in Country XX (sorry that we cannot publicly disclose which country).  That means that our small mountain of apostilled paperwork has been translated, verified, bound and formally acknowledged by Country XX. It also starts a  time clock ticking, as we should hear back in about one-month's time with an approval and travel invitation.  If everything continues smoothly, this means that we may begin our travels abroad in mid-March!
Our apostilled mountain ... whew!
So... we are nesting! Preparing! Organizing! We are gathering a suitcase full of warm clothes to bring our baby girl home in.  We are studying Russian; we are researching flights (thank you, Uncle David and Chris!).  We are making to-do lists that resemble small novels.  I am plotting spring cleaning before Spring arrives, knowing that Spring will be Sprung before I get around to acknowledging it this year. 

Thank you, thank you, thank you to all who've contributed to Melody's grant and Peter's fundraiser.  What an incredible experience to feel the support of so many -- friends, family and strangers -- and to read your warm comments and well-wishes.  You all now hold pieces of this puzzle which we pray will soon be complete with Melody healthy and home, an orphan no more. 

Monday, January 21, 2013

Marching On: The Final Story

The Great Cookie Escape

It’s a family tradition.  Every Saturday, we head to the Farmer’s Market (located at the intersection of Gillian’s beloved neighborhood store) for a sweet treat and to listen to live music.  Over the years, depending on the ages and stages and numbers of foster kids in our family, the shape of our “parade” has changed a bit:  baby joggers, baby front-packs, baby back-packs, tricycles towed by ropes, red wagons, bikes on training wheels … No matter the mode of transportation, the important thing, in Gillian’s mind, is that the hoopla results in a cookie.  

The morning of The Great Cookie Escape was a Saturday, like most others.  Gillian got herself dressed in record time and waited impatiently for the rest of us.  She paced up and down.  She sighed melodramatically.  She stamped her feet like a Thoroughbred racehorse.  Then she put on her backpack -- an indicator of trouble-to-come -- and *poof*!  She vanished, marching off to the market solo, her first perfectly-executed clean escape.  Within moments Peter and Cody were dispatched and sent off in hot pursuit.

Trouble is, hundreds of other folks also go to the market on Saturday mornings for treats and music.  Finding her was like looking for a needle in a haystack.  Cody came home empty-handed.  For the first time in 25 years of parenting, I made the dreaded 9-1-1 call.  “Um, could you help us find our little girl at the market?  She’s probably eating a cookie ... Yes, she’s 8.  But she looks like she’s 4! … yes, obsessed with cookies …  no, hasn’t exactly done this before.  But she’s been TRYING for years …”  By the time I got off the phone with dispatch, Peter had already found her, our slightly deflated adventuress.  Turns out escaping is not all that its chocked up to be (1), when you turn around to find that no one is giving chase this time and you’re – gasp! -- all alone; (2) when you’re not carrying $2.50 for that cookie! (3) all your efforts have resulted in nothing but a series of lectures from everyone ranging from the policeman down to your 3-year-old sister.


However, a very good thing happened later that same day.  An acquaintance who works in the fire department overheard our 9-1-1 call.  She phoned to suggest that perhaps Gillian would be a good candidate for Project Lifesaver …

And so our history with Fireman Randy began.  On the second Tuesday of every month, he parks out front, greets his fan club of little ones, clears a path off our kitchen table and spreads out his gear.  He removes Gillian’s tracking device, cleans and inspects it, installs a new battery, and then goes through a series of tests to be sure it’s working properly.  He makes a series of inquiries about Gillian’s most recent antics and behaviors: learning about and developing a relationship with the client -- whether she’s 9 with autism or Down Syndrome or 90 with Alzheimer’s -- is an important part of the program.  He shares a few tales from the trenches and then grabs a handful of freshly-baked cookies as he heads out for his two-hour ride home.

To Randy, volunteers of Project Lifesaver, grant donors to their program:  We cannot thank you enough for “watching over” our little girl – and her fellow wanderers/adventurers -- and providing families peace of mind, an invaluable gift.  If one cookie introduced us to you, a million cookies could not repay you.
 
An After Word

Across the ocean, on the other side of the world, children just like Gillian are staring at their institutional walls which are the only walls they will know, day after day, year after year.  They are rocking to and fro because they have nothing else to do.  They do not dream of escaping because they’ve no knowledge that a world outside exists.  They are not pining for beaches.  They are not anticipating camping trips.  They are not wandering off for cookies.
 
They have no choices. 
They have no voices. 
They have no rights. 
They have no future. 
 
With any luck, Melody will soon be joining our family.  She will learn to walk.  She will learn to trust.  She will blossom with the love of family.  She will benefit from the support of community.  She will learn that the world is her oyster. 

Will she be wearing a white tracking device upon her wrist?  I honestly don’t know.  But I daresay if that day ever comes, she’ll wear it with pride as a band of her freedom.

Gratitude

To all of you who have stepped forward to express interest and offer encouragement, please know that your support means the world to us.  Those of you who have contributed to Melody’s grant or our adoption fundraiser, we are so humbled by your generosity and can only promise to one day pay it forward … and forward ... 
 

Freedom to make choices:  Gillian and Princess R

Saturday, January 19, 2013

Marching On - Part III

Let's talk cookies. Cookies R-U-L-E.  My offspring are genetically predisposed to be cookie monsters because I am one.  Chocoholism, according to my grandmother, runs in the family for countless generations, maybe as far back as cavemen.  Nowadays, failure to put a cookie in a school lunch will cause irreparable lunch bag letdown. After all, cookies are the perfect food. A cookie with coffee, a cookie after lunch, a cookie when you're feeling blue, a cookie when you’re feeling happy, a cookie when no one's looking, a cookie just because. We. Bake. A. Lot. Of. Cookies.

By the time Gillian was four, she learned that the neighborhood grocery store, located conveniently three blocks away, also bakes cookies. But not the palm-sized homemade-by-mommy variety. We're talking about cookies the size of her entire head, smothered in chocolate frosting and adorned with colorful sprinkles, wrapped up and lined up near the check-out stand.

The March was born.

On those rare occasions where Gillian would find an unmanned escape route, she’d march immediately down the hill and take a sharp right at the corner, headed towards the store, cookies on the brain.  For the next three years, her primary goal was to march far enough, unnoticed, to reach for a monster cookie.  Lucky for us, she is not fast.  No matter how quickly she got those little arms and legs a swingin', she would be caught and re-directed before reaching her destination.  In the meanwhile, we upped the parental-radar level to the red zone.  We notified neighbors, installed locks and gadgets galore, and even added several layers of chicken wire around our already-fenced property – just in case.   

What, you may be wondering, was school like?  The Kindergarten years (K-garten was SO much fun, we let her do that twice!) were nail-biters:  While Gillian did not demonstrate The March on school grounds, her uncanny knack for disappearing kept staff on their toes.  By the end of the Kindergarten years, Gillian outgrew wanderlust, or so it seemed, and we let down our guards accordingly and thanked our lucky stars.  Suddenly, at the end of first grade last year, Marching began again with a vengeance.  Only, I learned of it after-the-fact.

One day while sitting at my desk at Superior Court, a customer stood at the front counter, offering various concerns with various public entities.  Then he turned to public schools.  “… blah … blah … teachers …”  I half-listened.  “… blah… blah… safety…”  My ears perked up a little.   “… blah …. blah… And the other day, I was passing by the grade school, and a little girl with Down Syndrome was marching down the street like she was on a mission.  So I looked around, and no one was following her.  I wondered if she had just escaped from the school there, so I took her back there …”  By now I was standing up.  “Did she have blonde hair, a pony-tail, and hot-pink glasses?”  Imagine that:  she did.  A call to the school confirmed that Gillian had indeed escaped – from the principal’s office!  Which is where she’d been sent after trying to escape from the recess-aide.  Which she’d been doing regularly, apparently …

Alarmed, I phoned the YMCA, her after-school program:  “Has Gillian been trying to escape?”  “Well, we’ve been meaning to talk to you about that …” 

I began to get nervous.  Chicken wire would not eliminate this problem.  These days, Gillian could operate wire cutters and dig holes if she was so inclined. I got online and looked up key words  “wandering, Down Syndrome” and immediately STOPPED, as I was turning up some frightful and tragic results. 

That very week, Gillian succeeded in making her first clean Cookie Escape.

 (Okay, no doubt you are tiring of this story.  But this busy ma-ma has run out of time.  To be continued – and FINISHED – very soon.)  J

Sunday, January 13, 2013

Marching On - Part II

Gillian and Fireman Randy
On the second Tuesday of every month, neighbors hold their collective breath as a very large fire department vehicle rolls down the hill and parks in front of our home -- and then slowly exhale as Fireman Randy saunters casually down the driveway and through the back yard.  No emergency.  Instead, on these visits, Fireman Randy is serving as a volunteer for Project Lifesaver, his only reward being a plate of fresh-baked cookies and 10 minutes with Gillian, who greets him with a squeal of delight at the back door (most often in a ballet tu-tu) and then plays a silly game of hard-to-get while Fireman Randy sets down his toolbox, unloads his tracking-device gear, and good-naturedly disarms Prince N, who simply MUST grab everything on the table.  Randy and Gillian are beginning to share a bit of history which centers around the large white tracking device upon her wrist.  I think of it as The History of Marching.  But it began lonnnnnnnngggg before we met Fireman Randy...

Like most children with Down Syndrome, walking did not come easy to Gillian.  Her developmental milestones cannot be taken for granted and are not attained by mere passage of time:  They are earned through perseverance and hard work.  Walking was one such milestone.  If a typically-developing child will walk at age 12 months, a typical child with Down Syndrome will also learn to walk -- but at 24 months.

Gillian took her first real steps on her second birthday.  With her petite frame and wide, tottering gait, sure-footedness was elusive until her baby sister Isabel arrived -- and soon started walking.  With two wobblers in the house,

"Two Wobblers:  Survival of She With the Best Balance"
it became survival of the best-balancer for a a month or two, as they'd crash into and mow each other over like two drunken soldiers.  At 14 months, Isabel bypassed walking altogether and took immediately to sprinting. Gillian, who was turning three, took to marching.  Six years later, The March is still the preferred mode of self-transportation when the perfect set of circumstances present themselves.

Leading up to The March 

The March is what will happen when a small child with Down Syndrome, who habitually clanks locked and baby-proofed door handles, discovers that one suddenly opens.  The March will also happen in public places when one of the ten eyes in the back of a mother's head stop working for one split second.  When the child turns school-aged, it's what happens when the teacher turns her back or the recess aide stops to apply a band-aid to a wounded classmate.  Voila!  The March (aka Wandering).

Presumed Cause 

It's what happens when physical prowess exceeds rationalization skills (where am I headed and what exactly IS my plan?) and sound judgment (is this REALLY a good idea?)

Description of The March

Arms: swinging long and with purpose, like an Olympian race walker. 
Gait: Legs moving swiftly but never quite breaking into a run.   Gait wide.  Little flat feet slap-slap-slapping the ground with purpose, thankfully knocking stealth out of the picture ...
Posture:  Leaning heavily forward in a lumbering fashion, head down, blond pony tail swinging wildly. 
Determination Factor:   Eyebrows furrowed in concentration (uh-oh)
Humor:  Periodic belly chuckles, particularly when being chased!
Attire:  Get-away backpacks may be worn when child is old enough to develop Wandering Aforethought.  Shoes often on wrong feet -- on purpose.

Reality Check!
 
It's a constant topic amongst parents of children with Down Syndrome (more commonly known as Wandering) no matter how cute or well-behaved the child.  It's a phenomenon that has given rise to technological advances in tracking devices and door alarms -- indeed, "wandering off" has almost earned itself its very own medical diagnostic code.

Back to the story ... (Part III coming soon very soon, along with an adoption update!)

Wednesday, January 2, 2013

Marching On - Part I

Gillian is nine years old.  True, she does have Down Syndrome, but that doesn't make her any less nine, even if she is half the size of her classmates.  I tend to think of her specially-formulated chromosomal make-up as a kaleidoscope of her true colours, a unique and perfect palette, from her contagious laugh to her vibrant personality, and everything in between ... a young lady in the making. 

When Gillian was a toddler, I somehow imagined that she would grow up to be easy-going, without voice or opinion.  I could never imagine a child with Down Syndrome having a temper tantrum, much less a time-out.  On the contrary, the only thing "slow" about her is the speed at which she eats her vegetables. These days, Gillian adds a rich myriad of mystery, excitement, joy and chuckles to daily life. 

It's the case of the disappearing things (See Case of the Missing Shoe).

It's her creative use of those disappeared things, such as my collection of knee-high stockings (see again Case of the Missing Shoe).  After weeks of limping off to work barefoot in high heels, they suddenly reappeared one afternoon in the form of three dozen tied-together stockings now resembling a very long, lumpy, colorful nylon rope, with Gillian dangling from the end, practicing her Tarzan swing after perfecting her knotting technique on each and every stocking.  The trouble was, after a few good swings off the top of the banister, the knots had cemented themselves into one fused mass.  I managed to get the top knot untied from the banister before other Tarzans appeared ... then the weeks passed.  In the wee hours of the morning, while dressing for work, I'd lay out the knotted rope across my bedroom floor, determined to un-tie at least two -- ANY COLOR combo would do -- to no avail. I tried fingernails.  Teeth. Tears.  Pliers.  Then laughter.

It's her constant re-shuffling, like a daily Scavenger Hunt with the first item leading to the next, but the prize always out of reach.  Example:  You reach for a washcloth, but all of the washcloths are gone.  In their place is an impressive collection of princess undies.  Which leads one to the logical assumption that, Ah-Hah! Gillian's undies drawer must now hold all of the washcloths!  Much to your surprise, however, the undies drawer is now filled with all of Prince N's socks.  Which of course leads you to his room, where you throw open the sock drawer only to discover that IT now contains only Barbie doll dresses.  Determined to reach the end of today's scavenger hunt which ought to lead to the missing washcloths, you race back downstairs to the Barbie tub to find that it now contains .... leaves.  Lots of them.  Wet, sticky, starting-to-decompose leaves.  And that's that.   No more clues.  And no washcloths.  The trick is to find the all-of-the-missing items before they are creatively used (as above).  And if not?  Yup ... laugh.

It's the way she tells a tale by suddenly exclaiming, "Oh, OH!!!" while raising her hand and jumping up on her chair (lest we don't notice that it is her turn now to speak).  For the next several minutes, the entire household -- or classroom, as the case may be -- listens politely, intently, fill-in-the-blank-style, praying for enough discernible words so as to respond appropriately to Gillian's breathless tale.  Despite years upon years of speech therapy, when Gillian strings words, it sounds like this:  "And then,  LKGDSAKJKESATOIUUQPOIDXIEMGMKDIZLDLDSAFJDSAPOA ... base ball!  And then, MVCKSPHIWPQLXZJFJJVVOEONAFIEJAIEHFIEOESIIASROAN .... birthday!"  At this point you take the identifiable words and repeat them back, hoping she can add a few more.  Then you piece together her story for her, like, "Oh, you played base ball ... on your birthday!?"  If you were close, she will almost bound off the chair with excitement:  "YES!!!!!!"  But if your best guesses were off, she'll sigh a HUGE sigh, fold her arms across her chest, stomp the chair with one foot in frustration, and try again.  The whole family, right on down to the three-year-old, will listen even harder, chiming in like a Family Game Show:  "You want a baseball for your birthday!?"  "You like baseball, and you like your birthday too!?"  Eliciting a "YES!!!!" from Gillian is more rewarding and exciting then winning Family Feud. 



Most recently, our Gilly excitement centers around the fire truck which pulls up nonchalantly in front of our home on the second Tuesday of every month ...

(to be continued in a week or so)