Challenges

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Coco had a language arts assignment tonight to describe a challenge she has had in her life and what she might have learned from it or how it changed her.  The directions are to write non-stop for ten minutes.  We went a little over ten minutes here, but I felt she wanted to complete her thought. This is not a new subject for her to write about, but every time she describes her experience I am reminded of what it must feel like to walk in her shoes every day and I am also reminded of her resilience and (mostly) positive attitude.  

MY CHALLENGES IN LIFE ARE RATHER OBVIOUS.  TELLING MY STORY WOULD TAKE WAY MORE THAN TEN MINUTES.  MY BRAIN IS FULLY INTACT.  I CANNOT CONTROL MY MUSCLES.  DOUBTING ME IS A COMMON RESPONSE AT SCHOOL.  I CAN TELL PEOPLE DONT BELIEVE I HAVE THE BRAIN OF A THIRTEEN YEAR OLD BASED ON THE DUMB TASKS I AM ASKED TO DO ALL DAY.  HERE IS WHERE I AM TRAPPED.  EVEN THOUGH THE TASKS ARE DUMB I DONT ALWAYS TOUCH THE RIGHT ANSWER.  I CANNOT COMMUNICATE MY ABILITIES BECAUSE I DONT HAVE A PERSON WHO KNOWS HOW TO HELP ME ON MY BOARD.  THIS IS EXTREMELY FRUSTRATING BUT I HAVE LEARNED SO MUCH FROM IT.  FIRST IS PATIENCE.  DOING SPECIAL ED WORK MAKES ME APPRECIATE MY RPM LESSONS SO MUCH.  I HAVE LEARNED TO APPRECIATE MY SISTER WHO HAS NEVER LET ME ONE DAY EVER BE ALONE IN THE CAFETERIA.  I HAVE LEARNED THE VALUE OF PRAYER.  I PRAY THROUGHOUT THE DAY WHEN I AM REALLY DOWN.  LOVE IS THE MOST IMPORTANT THING.  THE PEOPLE WHO LOVE AND SUPPORT ME KEEP ME SANE.  ONE MORE THING AND THAT IS THE GIFT OF MY IMAGINATION WHERE I CAN ESCAPE.

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Capturing Summer

This is the first poem that Coco has been inspired to write for a few weeks.  We are having a beautiful, lazy, beach-filled summer.  This poem expresses Coco’s love for summer but specifically, it was her response to reading an old favorite, Frederick, by Leo Leonni, about a mouse with the soul of a poet, who stores up colors and feelings and words for the long winter.  I think that is what Coco was trying to do here.

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CAPTURING SUMMER

 

DURING THE SUMMER

I COLLECT EFFERVESCENCE

AND SEAMLESS SUNRAYS

I AM FILLING THE LARDER OF MY HEART

WITH LAUGHTER

AND BAREFOOT STROLLS

CRAVINGS FOR LEMON ICE

MIGHT GET VANQUISHED

BY A MEMORY

OF THAT EXQUISITE GULP

CAN I TAKE THIS ALL WITH ME

INTO MY DARK SIGHTED WINTER

NIGHT BRINGS DREAMS

OF LIGHT HEARTED REMEMBERING

A SUNBURNED SHOULDER

SAND IN MY SHEETS

SALT IN MY HAIR

DANCING IN THE KITCHEN

READING ON THE PORCH

COUNTING ROBIN EGGS

BELIEVING IN THE BEAUTY OF A SEASON

THAT RETURNS TO ME

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The Order of the Phoenix

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ANOTHER MASTERPIECE FROM JK ROWLING.  HARRY IS A REMINDER AND A SYMBOL TO US OF WHAT A HERO IS.  CAN BE KIND OF A HARD HEAD BUT ALWAYS ACTING WITH THE BEST OF INTENTIONS, HARRY FIGHTS THE GOOD FIGHT.  SEEING THE FILM AFTER READING THE BOOK MADE IT EVEN MORE ENGAGING TO ME.  YES I HAVE A STRONG LEANING BIAS TOWARDS MAGICAL ORPHANS, BUT CAN YOU BLAME ME?  WE ALL LOVE THE UNDERDOG.  NOT EVERYONE IS AS LUCKY AS MYSELF TO HAVE GONE ON THE HOGWARTS EXPRESS [referring to her trip to Universal Studios] YET ALL OF US CAN TAKE THAT ENCHANTED JOURNEY IN OUR IMAGINATION SIMPLY BY OPENING ONE OF ROWLINGS MAGICAL BOOKS.  HAPPINESS AWAITS THE READER WHO EMBARKS ON THIS TRIP.

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The Soul of an Octopus

  Continue reading

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Friendship

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Tonight we attended a picnic to celebrate the end of the year with Friendship Circle.  Coco’s best buddy, Rebecca, is graduating.  Rebecca’s friendship, and everything about Friendship Circle, has been the greatest gift to Coco.  Tonight, Rebecca and Coco exchanged letters about what this year and this friendship meant to them.  Coco expressed her feelings in a poem.

 

For Rebecca

A GOOD FRIEND IS THE CURE FOR LONELINESS

A BEARING TO KEEP YOU STRAIGHT ON YOUR ROAD

A CANDLE IN THE DARKNESS

AND A BALM TO YOUR HEART.

EVERYONE NEEDS FRIENDS LIKE THAT. REBECCA YOU ARE MY FRIEND.

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Helen Keller

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Coco wrote this speech for a language arts assignment for school.  She read two biographies to prepare.  This piece was a little slow going – she has been spelling a little more slowly and less fluently for the past couple of weeks.  You can watch a little of her working on this piece here –  

https://youtu.be/X_dHxLDJ7dQ

 Her spelling is no less deliberate or accurate than before, just a little slowed down.  I think it is just a bump in the road and I have been trying to help her exercise her pointing skills with as many structured RPM lessons as we can fit in.  We will also be happy to have time with wonderful professional practitioners in the near future.  Coco and I are REALLY looking forward to summer break from school when we can focus our days on skill-building and RPM.

CAN YOU IMAGINE BEING TRAPPED IN A LIFE OF SILENCE? DESTINED FOR A LIFE OF ISOLATION? I KNOW ALL ABOUT THIS AND I FOUND A KINDRED SPIRIT IN HELEN KELLER.

FROM THE FIRST TIME I HEARD ABOUT HELEN KELLER I KNEW AT LAST THAT IT WOULD BE POSSIBLE FOR ME TO BREAK FREE FROM MY PRISON OF SILENCE. SHE WAS AN EXAMPLE OF A PERSON WHO DID THE VERY THING I DREAMED OF DOING. YEARS OF SILENCE ALMOST BROKE MY SPIRIT. BEING VOICELESS CAN MAKE YOU WANT TO GIVE UP ON LIFE. HELEN FOUND A WAY OUT AND I COULD TOO.

HELEN KELLER DID NOT REMEMBER WHAT IT WAS LIKE TO SEE AND HEAR BECAUSE SHE WAS ONLY 19 MONTHS OLD WHEN FEVER LEFT HER DISABLED. SHE ONLY EVER KNEW DARKNESS AND SILENCE. THE DAY ANNIE CAME TO BE HELENS TEACHER IN 1887 WAS THE DAY HELEN WOKE UP FROM HER NIGHTMARE. ANNIE OPENED THE WORLD OF LANGUAGE TO HELEN. BEFORE ANNIE ALL HELEN DID WAS LASH OUT IN FRUSTRATION. I KNOW EXACTLY HOW THAT FEELS. ENTIRELY ALONE AMONG PEOPLE DO THE VOICELESS SUFFER. DAY AFTER DAY BECOMES A LIFE OF MONOTONY AND LONELINESS. ANNIE TAUGHT HELEN TO SPELL WORDS IN HER PALM. SOMA MUKHOPADHYAY AND MY MOM TAUGHT ME TO SPELL WORDS ON A LETTER BOARD. JUST
LIKE ME SHE FACED ACCUSATIONS THAT THE WORDS WERE NOT HER OWN. I INTEND TO PROVE MYSELF JUST LIKE HELEN.

HELEN KELLER MADE IT TO COLLEGE. SHE GRADUATED IN 1904 FROM RADCLIFFE CUM LAUDE WHICH MEANS WITH HONORS IN LATIN. SHE WAS THE FIRST BLIND AND DEAF GRADUATE. PERHAPS I CAN BE THE FIRST NON SPEAKING AUTISTIC TO GRADUATE FROM SOME PRESTIGIOUS UNIVERSITY. A COMMON TRAIT I HAVE IS PERSEVERANCE.

MARK TWAIN FAMOUSLY SAID (quote) THE TWO MOST INTERESTING CHARACTERS OF THE NINETEENTH CENTURY ARE NAPOLEON AND HELEN KELLER (end quote). WELL I AGREE. NOT ONLY DID SHE BREAK DOWN BARRIERS FOR THE DISABLED SHE ALSO FOUGHT TIRELESSLY FOR THE RIGHTS OF WOMEN AND OTHERS. I ALSO STRIVE TO BE AN ACTIVIST FOR EQUALITY AND JUSTICE. WITH HELEN KELLER AS MY GUIDE I CAN DO GREAT THINGS TOO.

 

 

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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.

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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.

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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

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Happy birthday Grandma

 

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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

 

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Between the Moon and Me

 

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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

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