Labels

Coco and I had a very interesting conversation tonight. I am sharing it with her permission. Some press came out today about amazing developments in Rett Syndrome research.  Scientists are extremely close to gene replacement clinical trials. I asked Coco what she thought of this.  I also asked her why she doesn’t identify herself as a Rett girl.  She continues to call herself an autistic.  Not a girl with autism, but an autistic.  This may not sound very PC but I allow her to be the authority on what she chooses to label herself.

A MENTALITY OF DISABILITY IS WHAT GIVES RISE TO LABELS.  ALTHOUGH I AM ATYPICAL FOR RETT ALSO AM I ATYPICAL FOR AUTISM.  DISABILITY IS A STATE OF MIND.  DONT PRESUME TO KNOW THE INNER WORKINGS OF ANYONE YOU MEET.  I AM ME.  I AM SUPER AWFUL AT CONTROLLING MY BODY.  BUT I AM SUPER GOOD AT LOTS OF STUFF.  EVERYONE HAS ABILITIES AND DISABILITIES.  YOU CANT SUM ANYONE UP WITH A LABEL.  AUTISM CAN MEAN A NUMBER OF THINGS AND I FEEL COMFORTABLE WITH OTHER AUTISTICS.  CAN I CALL MYSELF THAT?

Yes Coco

OK.  DAD JUST BELIEVES IM AN ALIEN FROM OUTER SPACE.  EVERYONE ASSUMES WHAT THEY WANT.

I don’t think Dad really thinks you’re an alien.

EAGER TO APPLY MY ABILITIES FOR DOING GOOD IN THE WORLD.  DONT BOX ME IN

Ok Coco.

Posted in Uncategorized | Leave a comment

100 Wishes

Coco’s homework assignment tonight was a “free-write” poem.  Of course she chose her favorite subject, the moon.  I love, though, that she makes references to her 100 wishes quilt.  Alex and I ordered this quilt (from real Chinese grannies – or so we were told!) for Coco right after we received the referral for her adoption.  It is made with 100 squares of fabric, each representing a wish for Coco.  It was waiting for us upon our arrival in China.  it has always hung on Coco’s wall, across from her bed.

image

DANCING MOONLIGHT

FLICKERS ACROSS WALLS OF YELLOW

TYING THE KNOTS OF 100 WISHES FOR ME

CHINESE GRANNIES TIED THOSE KNOTS

TIED THEM TIGHT

TYING ME TO THEM

TYING ME TO CHINA

 

DANCING MOONLIGHT

HITS THE SHELVES

FILLED WITH THE BOOKS I LOVE

FILLED WITH ALCOTT AND KIPLING

AND BRONTE TOO

CANONS I NEVER DREAMED ID READ

 

DANCING MOONLIGHT

COMES TO TICKLE MY DOWNY BED

READING MY DREAMS

LIKE THE GRANNIES READ

THE DREGS IN THEIR TEACUPS

DEAREST TO ME

DARKEST MY FEARS

 

DANCING MOONLIGHT

COMES TO MY ROOM

FORGIVES ME MY AWKWARDNESS

COCOONS ME IN BLUE LIGHT

ROCKS ME TO SLEEP

Posted in Uncategorized | Leave a comment

Happy birthday Grandma

 

image

Today is a very special day.  Today is the 82nd birthday of Coco’s favorite person (sorry mom, for calling out your age but you are a wonder of nature and we admire you so).  Coco call Grandma her “SOUL MATE.”  And one of the first phrases she ever spelled, just over a year ago, was “I ADORE HER,” in reference to Grandma.  This is Coco’s birthday poem for her beloved Grandma…

AT A BEND IN THE ROAD

AT A BEND IN THE ROAD

YOU GESTURED ME TO FOLLOW

YOU JARRED MY MEMORY

AND BROUGHT ME BACK

YOU WERE ALWAYS THERE

FROM THE BEGINNING OF TIME

HERE ALL ALONG

AND HERE FOREVER MORE

THE ROAD IS LONG

AND WE WALK IT TOGETHER

YOU ARE MY TOUCHSTONE

YOU ARE MY HEART

 

As a little birthday bonus, here’s the one she wrote last year too…

 

I HAD A DREAM

A CARING GRANDMOTHER

DEEMED HEIR TO A MESS OF LOVE

EVER BEAUTIFUL

EVER VITAL

SOME IDEAS OF SENIORITY

INCLUDE AGIST NOTIONS OF VEINED AND TIRED CRONES

BUT NOT YOU

I HAVE THE QUEEN OF ALL GRANDMAS

 

Posted in Uncategorized | 1 Comment

Between the Moon and Me

 

c038c021-f9cc-45ea-bd3e-1bd07390bdc1

 

BETWEEN THE MOON AND ME

ANGELS ARE ARRANGING GOSSAMER CARRIAGES

TO DELIVER MY DREAMS TO GOD

BETWEEN THE MOON AND ME

ON FIREFLY WINGS

THE SECRETS OF THE AGES ARE WRITTEN

BETWEEN THE MOON AND ME

LOVE NOTES AND SECRET HOPES

GET PASSED BACK AMD FORTH

BETWEEN THE MOON AND ME

BEAMS OF STARLIGHT

ILLUMINATE THE MYSTERIES

BETWEEN THE MOON AND ME

ARE ALL OF MY CLEAREST VISIONS

FOR A BEAUTIFUL LIFE

Posted in Uncategorized | Leave a comment

O Joyous Day

Coco and I had a rare afternoon of not too much homework.  It feels like there’s never enough time lately for RPM lessons and creative writing so we took the time to do some skill building.  Then I asked Coco if she had any poems in her heart and she said YES.   

After she completed her final verse I asked her who she was speaking to in the poem and she said HASHEM.  I asked her what will happen on this joyous day and she said REALLY NOT SURE BUT IT WILL INVOLVE BEING ABLE TO COMMUNICATE.

 

O JOYOUS DAY

YET ANOTHER AVERAGE DAY GONE BY

YET ANOTHER BEAUTIFUL BEGINNING

KEEPING WATER IN THE SOIL

EVEN THOUGH THE AIR IS DRY

FIND THE MEANS TO PRAY

IN THE MIDST OF AMAZING AMBIVALENCE

YEARS ARE NOTHING TO THE SOUL

THIS TIME WILL PASS QUICKLY

GONE TO YOUR OLD HIDING PLACE

ON A SEARCH FOR YOU

BUT YOU WERE OUT

ZEALOUSLY ATTRACTING NEW FOLLOWERS

AT FEATS OF STRENGTH I AM HOPELESS

BUT I AM THE CHAMPION OF PATIENCE

YES ILL WAIT

FOR THAT JOYOUS DAY

Posted in Uncategorized | Leave a comment

Teenager Dreams

On this dreary, wet, cold night, Coco had a homework assignment to “free write” for 5 minutes.  And this is what came out.  I was not planning to post it.  My sister came over for dinner and I shared it with her.  She and I shared similar teenaged (charmed, beautiful, blessed) experiences – years apart but in the same place.  Through teary eyes she said ” you should post it.”  This one just felt intensely personal to me, but I asked Coco.  “Should I post it?”  Coco’s repose was “ABSOLUTElY.”  I’m not sure why Coco wants this shared.  She’s tired today and still eating her dinner and I just don’t want to pester her too much.  But from previous conversations with her, I think I know why she wants it shared.  Coco wants the world to know that not being able to speak doesn’t mean she has nothing to say.  Not being able to control her body doesn’t mean she doesn’t have the same feelings in her body as everyone else.  This piece was a poignant reminder for me.

image

TEENAGER DREAMS

 

I DREAM OF TELLING SECRETS OVER CUPS OF COCOA IN FUZZY PAJAMAS TOWARDS MIDNIGHT

I DREAM OF FOOTBALL GAMES AND POM POMS

I DREAM OF YELLOW STARS OVER OPEN WATER SPARKLING WITH BONFIRE REFLECTIONS

I DREAM OF TEST DRIVES AND LEARNERS PERMITS

I DREAM OF JUMPS OFF THE BRIDGE

HOLDING HANDS

STRING BIKINIS

I DREAM OF FIRST LOVE

FIRST KISSES

I DREAM OF PROM DRESSES AND CHIFFON LAYERS

I DREAM OF FRIENDSHIP AND ALWAYS LOVE

 

Posted in Uncategorized | 2 Comments

Thankful

img_3313

Coco’s response when I asked her what she is thankful for this year

I AM THANKFUL FOR ONE THING MORE THAN ANY OTHER

MY ETERNAL LOVE AND ETERNAL FAITH IN GOD

ALL THINGS ARE POSSIBLE THROUGH GOD

I HAVE ONLY GOD TO THANK FOR MY FAMILY WHO LOVE ME

BECAUSE OF HIM I HAVE A VOICE AND THE HEART TO USE MY WORDS TO HELP OTHERS

AS LONG AS I LIVE I WILL USE MY GIFTS TO DO GODS WORK

AND GIVE THANKS FOR ALL IVE BEEN GIVEN

Happy Thanksgiving Day

Posted in Uncategorized | 1 Comment

Every Morn

EVERY EARLY MORN

I TELL MYSELF

TODAY IS THE DAY

I CAN DO IT

TYPE AND TOUCH THE ANSWER

CONTROL MY BODY

TEMPER MY EMOTIONS

BE A GOOD GIRL

YELL IN MY HEAD

AND NOT OUT MY MOUTH

ATTEND ALL MY CLASSES

KEEP MY SHOES ON

ANGER IN CHECK

I VENTURE FORTH

TO CONQUER MY DISABILITY

EVERY DAY STARTS WITH THIS AGENDA

DARING TO GO FORWARD

TO BEAT EXPERTS PROGNOSIS FOR ME

ONE INCH OF GROUND AT A TIME

Posted in Uncategorized | 1 Comment

Claire de Lune

Coco and I try to squeeze in an RPM lesson every day.  RPM is the teaching method that led Coco to communication.  RPM (rapid prompting method) involves teaching students age appropriate content and keeping their attention through a variety of strategies.  Students start by answering choice questions and eventually work on spelling their answers on stencils or letter boards and eventually work up to responding to open ended answers.  We have achieved this goal, but the skill-building never stops.  It’s the most effective method for learning for Coco and we are always trying to build up her spelling stamina.  We hope that someday she will be able to type independently and then she will be allowed to communicate at school.  We think RPM will help us get there.

Our material this week for our home lessons is about great classical composers of different time periods.  The book we are using comes with a companion CD that has samples from each composer.  Coco asks us constantly to play the CD for her.  In particular, she keeps coming back to “Claire de Lune” by Claude Debussy.  If you’re unfamiliar or would like a reminder of this piece…

She asked me on her letter board what the track number of this piece was – so she could look for it and know when it’s coming.  I asked her what she liked so much and she said,

THE HIGH NOTES ANSWER ALL LIFES QUESTIONS AND THE LOW NOTES MASSAGE MY BRAIN

Sometimes I wish I could experience the world through her senses.  I asked her today if she’d like to tell me more about this piece and how it speaks to her.  Here’s what she said…

ALONE AT NIGHT

OUT MY WINDOW

THE MOON SINGS ME TO SLEEP

MY NEAREST FRIEND

YEARS AGO I MADE A PACT WITH HER

I SEND HER ALL MY TROUBLES AND SHE TAKES A PIECE OF MY HEART IN RETURN

DEBUSSY WROTE HER A LOVE SONG

IT SOUNDS A LOT LIKE MY FRIENDS VOICE

THIS IS MY FRIEND THE MOON

SPEAKING TO ME

I asked her what she would say to Claude Debussy if he were alive and she could speak to him…

 

I’ll never hear this piece the same way again.  Thank you sweet girl.

Posted in Uncategorized | 1 Comment

Peace

image

Coco’s response when asked the question, “What does peace mean to you?”…

ALL AROUND AND MANY MILES
WE SEEK THE TRUTH
AND YEARN FOR JUSTICE
WE STRIVE FOR PERFECTION
AND LONG FOR BEAUTY
MAYBE WE’RE TRYING TOO HARD
A QUIET NIGHT
A GENTLE TOUCH
A LOVING GLANCE
A FULL BELLY
PEACE IN MY HEART
THE KINDNESS OF STRANGERS
A NEARNESS TO NATURE
SENSES ABLAZE
THIS IS MY PEACE

Posted in Uncategorized | 1 Comment