YES IT DOES
KEEPS ME OUT OF MAINSTREAM LIFE.
I MET SOMEONE TODAY WHO SEES BEYOND MY AUTISM . SHE WANTED TO KNOW ME.
EVEN AT MY BEST IM SUPER DISABLED. YOU DONT HAVE TO SPEND MUCH TIME WITH ME TO KNOW I AM DISABLED.
SOME PEOPLE LOVE ME ANYWAYS. I KNOW ITS NOT EASY.
CANT EVEN IMAGINE WHY THEY DONT BEAT IT FOR THE HILLS
BUT THANK GOD THEY DONT
CAUSE I LOVE MY LIFE AND I LOVE LEARNING.
It has been a happy few weeks for Coco. Any autism mom knows not to take those moments for granted. And I know that the wind can change at any moment. But Coco is happy so Momma is happy. I chose a picture of Coco with her sister Lilly for this post because I’ve been especially grateful lately to Lilly for her loyalty to Coco. Lilly has her own pre-teen trials and tribulations to contend with yet she always thinks of her sister. Coco always has Lilly looking out for her.
Another hero for Coco is her RPM practitioner, Jane. Jane is young and adorable and dresses cool. She schleps out here from Brooklyn twice a month. It’s the only time that Coco gets to communicate with someone other than me. Let that sink in. This thirteen year old girl can communicate with her mother only – no one else – except for two half hours a month. And her mother is sitting outside the room eavesdropping. I can’t imagine the frustration.
Today the first thing she said to Jane was I HAVE SEEN THE LIGHT. Of course, Jane was intrigued and probed further and Coco continued. IM NOT MAD ANY MORE AT AUTISM. GOT TO TAME THE BEAST THRU MY WRITING. She told Jane she wanted to write a poem. I am sharing it here with Coco’s permission.
THE TIME TO GRIEVE IS OVER
IM NOT GOING TO CHOOSE SADNESS
AS A FRIEND OR COMFORT
I NEED OTHERS TO REMIND ME
OF THIS WHEN IM TEMPTED TO
RETURN TO ITS CALL
NO SEA ONLY GROANS
IT SHINES IN SUNSHINE HOW
FLOWERS NOT ONLY DECAY THEY
BLOOM ONLY TIME
ALLOWS THE MEMORY TO
DISSOLVE HOURS PASS
KEEPING MY TIRED WATCH TICKING
HOURS INTO DAYS
LIFE IN A MOMENT OF SOLITUDE
GET ME TO
THE BEAUTY I NEED
TO GO ON.
Coco and I are reading another book by one of her favorite authors, naturalist Sy Montgomery. As she posted a few months ago, it was Montgomery’s Soul of an Octopus that inspired in us both not only an obsession with Octopuses, but also many thoughtful discussions about how we can never know the inner workings of other creatures. Coco is having a similar experience as she reads Montgomery’s The Tarantula Scientist. She had this to say yesterday:
TALK ABOUT BEING MISUNDERSTOOD! THE TARANTULA IS ONE OF THE MOST MALIGNED CREATURES ON EARTH. A BIG PART OF LEARNING ABOUT OTHER SPECIES THAN HUMANS IS THAT IT MAKES THEM LESS SCARY.
Following this comment, Coco and I were reading some animal poetry and I asked her if she’d like to write an animal poem. She responded yes. I assumed she would choose tarantula as her subject, but she spelled SNAKE, another unfairly “maligned creature,” I suppose.
HE SLITHERS ALONG
WITH A SONG IN HIS HEART
BUT NO VOICE TO RELEASE IT
OR WAY TO IMPART
THE FEELINGS HE SHARES
WITH THE BIRDS AND THE BEARS
YOU MIGHT NEVER KNOW
JUST HOW MUCH HE CARES
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.
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.
DURING THE SUMMER
I COLLECT EFFERVESCENCE
AND SEAMLESS SUNRAYS
I AM FILLING THE LARDER OF MY HEART
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
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.
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.
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.
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 –
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.
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?
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