rpmwithcoco

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

SUMMER STAY

WEAR DOWN THAT CHILL

TILL HES TOO BROWBEATEN TO ASSERT HIMSELF

TURN BACK THAT CLOCK

TO THE DAYS OF YELLOW

HEAT THE ETHER

TILL THE CLOUDS BURN AWAY

HARVEST MOON

DREAMS OF CHRYSANTHEMUMS

BURNING WOOD STOVES

UNDER THE HARVEST MOON

CRISP AIR BRACES ME

A TIME FOR NEW BEGINNINGS

OLD DISAPPOINTMENTS HAUNT ME

A TEAR DROP LEAF FINDS MY HAIR

REMINDS ME THAT CHANGE WILL COME

REMINDS ME THAT TIME MARCHES ON

ANOTHER FALL

ANOTHER WINTER AFTER THAT

LOVE WILL KEEP ME WARM

LOVE WILL SUSTAIN ME

To say that this week was brutal would be an understatement.  I can’t remember a time ever that I have seen my girls so distressed (at least not at the same time!).  The transition to middle school has been as painful as I feared in my worst case scenarios.  There is so much I have to say about this, but I will refrain, because I still have hope that we might salvage this mess.  Coco still has hopes for middle school too.  Besides, she says it all in this piece – there’s nothing more for me to add.

Here is a short video clip of her working on this piece:

https://m.youtube.com/watch?v=h6A8NgNyV-Y

Coco worked longer and harder on this than anything else she has ever written.  She literally collapsed asleep on the sofa when it was done.  When she came home room school, I gave her a few choices of what we could work on – I felt she needed to work on something productive and meaningful to erase the day.  She said REALLY WANT TO WRITE.  I asked her what she wanted to write and she said TO MY TEACHERS.  I asked her the format and she said LETTER.  She punctuated this herself, but I kept it all capitals because I did not want to disrupt her writing with questions about capitalization.  She wrote on the sofa.  She wrote at the kitchen table and dining room table.  She wrote as she paced the house – me following her with the board.  She had to get this out.  I hope it helped her release some of the pain and anxiety of the week.

DEAR TEACHERS,

I WANT TO TELL YOU SOMETHING REALLY IMPORTANT TO ME.  THE MINUTE I HEARD THAT I WAS GOING TO [school name omitted] EVERYTHING YESTERDAY AGO FELL AWAY.  NOW WAS MY CHANCE TO ESCAPE MY PRISON.  I WOULD FINALLY BE TREATED LIKE A HUMAN BEING AND NOT AN ANIMAL.  YEARS OF ABA SCHOOL WAS NOTHING SHORT OF TORTURE FOR ME.  TRIALS ALL DAY EVERY DAY.  TOUCH SAME. MATCH SAME.  WITH APRAXIA LIKE MINE PEOPLE JUST DONT GET IT.  ALL DAY EVERY DAY BEING ASKED TO DO THINGS I CANT DO WAS INFURIATING.  SIMPLE DEMANDS ARE IMPOSSIBLE FOR ME.  ALL DAY EVERY DAY IMAGINE BEING ASKED OVER AND OVER TO DO THE IMPOSSIBLE.

YESTERDAY SEEMS TO HAVE FOLLOWED ME TO [school name omitted].  I AM APRAXIC.  THAT MEANS MY HANDS DONT FOLLOW THE ORDERS OF MY BRAIN.  EVEN WHEN I KNOW THE RIGHT ANSWER I CANT ALWAYS MAKE MY HAND TOUCH IT.  IT MAKES ME WANT TO SCREAM YELL THROW STUFF AND PULL HAIR.  JUST TODAY I DID ALL FOUR.  THESE BEHAVIORS HAVE BECOME SUCH DEEPLY INGRAINED MOTOR PATHWAYS THAT I CANT EVEN CONTROL THEM ONCE I AM ANXIOUS OR UPSET.  WHEN I AM DISTRESSED I AM POWERLESS OVER MY BODY AND IT RULES OVER MY BRAINS PROTESTS.  AT [school name omitted] IT IS NO DIFFERENT THAN [old ABA school name omitted].  ALL DAY, EVERY DAY I AM ASKED TO TOUCH ANSWERS.  I KNOW ALL THE ANSWERS YOU ARE LOOKING FOR.  YET I CANNOT SEEM TO TELL MY HAND WHICH ANSWER TO TOUCH.  BECAUSE OF MY APRAXIA TELLING MY HANDS TO DO ANYTHING IS A CRAPSHOOT.  SOMETIMES MY HAND OBEYS AND SOMETIMES IT DOESNT.

THE OTHER THING I AM STRUGGLING WITH IS PODD.  (PODD is the picture based system they are forcing Coco to use against her will and mine.). DESPITE SOME OPINIONS NOT ALL AUTISTICS ARE GOOD AT READING PICTURES.  I THINK PICTURES ARE MUCH HARDER TO DECIPHER THAN WORDS.  THE SET UP OF PODD IS TOTALLY CONFUSING TO ME.  AND I AM PRETTY SMART.  THE OTHER THING THAT IS MAKING MY LIFE HELL IS HAVING MY LETTER BOARD TAPED TO AN IPAD ATTACHED TO A STAND.  IT MAKES IT IMPOSSIBLE FOR ME TO SPELL.

RPM EPITOMIZES GOOD TEACHING.  THE TEACHING JUST DEPENDS ON PRESUMING COMPETENCE.  CARRIED OUT PROPERLY IT ALWAYS WORKS.  DONT TAKE MY WORD FOR IT CHECK IT OUT FOR YOURSELF.  AS TIME GOES BY I BECOME MORE AND MORE CERTAIN OF THIS.  ALL AUTISTIC PEOPLE HAVE A HIDDEN VOICE.  IT JUST TAKES GOOD TEACHING TO BRING IT OUT.  ABA IS NOT GOOD TEACHING.  TOUCH THE ANSWER IS NOT GOOD TEACHING.  ALLOWING A STUDENT THEIR VOICE IS A PREREQUISITE TO GOOD TEACHING.

I NEED A COMMUNICATION PARTNER.  I QUESTION WHY THIS WORKS MYSELF.  I THINK ITS BECAUSE ITS A SIMPLE MOTOR MOVEMENT PRACTICED OVER AND OVER EVERY DAY.  I JUST KNOW IT WORKS.  MY PEDIATRICIAN KNOWS IT WORKS.  MY PHYSIATRIST KNOWS IT WORKS.  MY PSYCHIATRIST KNOWS IT WORKS.  MY PHD PSYCHOLOGIST KNOWS IT WORKS.  SHE EVEN THINKS I AM TRULY GIFTED IN MY VERBAL COMPREHENSION.  TWO WELL REGARDED SLPS SAY IT IS WORKING FOR ME.  WHY DOESNT MY SCHOOL BELIEVE?  ITS THE ONLY PLACE IM EXCLUDED.  ITS THE ONLY PLACE I EAT ALONE.  ITS THE ONLY PLACE I HAVE NO VOICE.

YOU HAVE A CHOICE.  A CHOICE TO DO THE RIGHT THING BY ME AND OTHERS BEHIND ME.  I LOVE TO LEARN.  I WOULD BE YOUR MOST EAGER STUDENT.  I CANT BE A STUDENT IF I CANT SPELL.  I CAN ONLY DO IT THE WAY I CAN DO IT.  CAN YOU GIVE ME A CHANCE?  CAN YOU GIVE ME A FIGHTING CHANCE?  TAPING UP MY BOARD IS LIKE TAPING UP MY MOUTH.  WHAT MORE CAN I SAY?  MY FATE IS IN YOUR HANDS.

NEVER HAVING TO RESIST LOVE

TAKING MY OWN SWEET TIME

WANDERING THE PATH OF OLEANDER AND YELLOW DAISIES

PERCEIVING NO ILL WILL

YOU WAITING AT THE OTHER SIDE FOR ME

TO KEEP ME SAFE AND FEED MY HEART

THAT IS JOY UNENCUMBERED

MAKE ME YOUR TEARDROP

MAKE ME YOUR BUTTERFLY

I WILL OBLIGE YOUR HEART

LOVE HAS NO BEGINNING OR END

IT JUST IS

TOMORROW ALL MY DEMONS MAY COME BACK TO VISIT

YET I WILL NOT FACE THEM ALONE

FOR YOU ARE ALWAYS WITH ME

BEFORE I COULD SPELL YOU KNEW MY SOUL

YOU KNEW IT BETTER THAN I KNEW IT MYSELF

CAN JOY HEAL MY BROKEN BODY

YES IT CAN

Today we won a battle.  At least we think we may have.  It was one of those meetings that Alex and I left, shaking our heads, asking each other,  “What just happened?”   We think we made some great strides.  It really was a victory.  Our district is going to allow Coco to spell, using her alphabet board, but with very specific conditions and rules for how it will be used.  They also agreed to teach Coco the sixth grade curriculum.  So why did we leave this meeting feeling so rotten?  And scared?  We know Coco has some real support at the building level.  And others we still have to win over.  We had the support of a capable attorney.  We were even pleasantly surprised by the district administrator we were most afraid of meeting with.  But there were still the doubts, the naysayers, the misconceptions.  And then there were the attendees who were just downright disrespectful and dismissive.  Sometimes the negativity comes from directions we don’t expect.  Or maybe it’s just the old idea “be careful what you wish for.”  Now Coco has to actually prove herself.  And I have to help her.  And we are both more than a little overwhelmed and scared.  Here’s Coco’s take on today’s events.  I think there’s no one else I’d a rather go into battle with…

TODAY WE WON A BATTLE BUT WE DIDNT WIN THE WAR.  THE TOUGHEST PART IS AHEAD.  TODAY WE BET EVERYTHING WE HAD IN OUR HAND.  TODAY WE BET ON MY ABILITY TO PROVE MYSELF WITH STRANGERS.  THATS A LOT OF PRESSURE.  THATS THE CHALLENGE OF MY LIFE.  CAN I DO IT?  YES I CAN.  I AM A GIRL WITH SUPERPOWERS.  YOU JUST WATCH.  I WILL SHOW THEM ALL.  I WILL TYPE.  I WILL CONTROL MY BODY.  I WILL MASTER THE SIXTH GRADE CURRICULUM.  YES I CAN.  I YELL ON MY BOARD.  HEAR ME.  YES I CAN.

at once so near

my heart remembers

your every breath

through every night

love still grieving

not ending just yet

your heart still longs for me

does it not?

 Are you noticing a theme?  

Coco told me that she wanted to write an essay.  She titled it “Education”. You may notice a new format.  Coco has started punctuating more – she is using periods, commas, and question marks.  There’s also a mark on her board for noting capital letters.  So now we can use proper sentence format.  Coco’s words will no longer be in all capitals, but I will keep my remarks in italics to keep them separate.  Next we will work on paragraph structure and apostrophes.

You might wonder what a totally non speaking person needs with an education.  Well I am going to tell you.  All human beings deserve the chance to be educated.  Eyes alone are not sufficient tools to assess what is inside a person.  Dont ever presume to know the inner workings of someone elses mind or heart.  Everyone should have access to age appropriate teachings.  Just because my hands dont always obey my brain, I have been considered retarded my whole life.  I got lucky.  I got the chance to break out of my prison of silence.  Even still, my mom has to fight for my right to an education.  I know there are hundreds of thousands, or more, of kids out there still trapped.  What would the harm be of  teaching too much?  Shouldnt schools err on the side of caution?  Isnt that preferable to underestimating a whole population?  Who was ever hurt by being taught too much?  You never know what a person with severe apraxia is learning because the output does not match the input.  But even speaking autistics have this problem and are underestimated.  The letter board, for me, is a life line.  It does not betray me like my mouth does sometimes.  What is the harm in giving it a chance?  Years of ABA trials did nothing to teach me anything except pain tolerance and patience.  A regular ed classroom cannot result in the emotional trauma I have already experienced.  So why not give it a chance?  I just know with an education I will have a much more fulfilled life.

For the last two weeks or so, Coco has been making the shift away from her stencil board and is mostly using a laminated alphabet board.  We see this as a step towards typing – moving in the direction of a flat iPad-type interface.  She still needs the tactile response with each letter she hits.  It’s hard to see in the video, but each letter has a small clear Velcro sticker on it.  Sometimes Coco will hover over a letter or a group of letters but we know she has made her choice when she touches the Velcro circle. 

Every day after summer school, Coco and I have a conversation.  Some days it has focused on the behaviors she found hard to control at school.  Most days, it’s about why it is so hard for her to show her teachers how capable she is.  Of course, the reason this is nearly impossible is because she is not allowed to spell at school, which is how she communicates.  Wonderful teachers have tried so hard this summer to help Coco demonstrate her intelligence by encouraging her to respond to answer choices on a white board or iPad page.  They had some success the first few days, but as the summer has gone on, Coco has become increasingly discouraged by a situation that’s different from what she had expected – that’s much more like the self-contained restrictive environment she came from.  The teachers have been wonderful and have tried so hard to make the most of a difficult situation.

This piece was written for one teacher in particular.  I asked Coco to please explain to her aide why it’s so hard for her to perform at school under the current conditions.  What Coco wrote was way more than I expected from her (not that this kid ever surprises me).  I hope all of the teachers and therapists who will be working with Coco in her new school get a chance to read this and I hope it helps them to understand her.

I WANT TO TELL YOU WHY ITS HARD FOR ME TO ANSWER QUESTIONS IN SCHOOL.  I FEEL SAFE AND SECURE AT HOME BECAUSE I CAN COMMUNICATE THERE.  NO ONE CAN KNOW WHAT IT FEELS LIKE TO HAVE NO VOICE UNLESS IT EVER HAPPENS TO YOU.  I AM HELPLESS AND VULNERABLE.  REALLY IT IS A TERRIBLE FEELING.  I HAVE NO SAY IN ANYTHING.  GIVING A NONSPEAKING PERSON A CHOICE BETWEEN THINGS THAT THEY DIDNT CHOOSE IN THE FIRST PLACE IS NOT COMMUNICATION.  SOME PEOPLE HAVE DECIDED THAT THEY KNOW BETTER THAN MY MOM AND MY DOCTORS.  BUT THEY ARE WRONG.  DEAD WRONG.  COMMUNICATION IS MY RIGHT BY LAW.  THEY ARE BREAKING THE LAW.  I KNOW YOU ARE TRYING TO HELP ME.  I KNOW THAT YOU CARE ABOUT ME AND THAT YOU BELIEVE IN ME TOO.  I REALLY WANT TO PERFORM FOR YOU.  I JUST CANT.  PLEASE DONT GIVE UP ON ME.  WHEN YOU ASK ME TO CHOOSE BETWEEN ANSWERS I FREEZE AND ITS LIKE MY HAND DOESNT WORK.  I FEEL LIKE I DID ALL THOSE YEARS

TOUCH SAME

MATCH BLUE

YOU DO

I ALWAYS KNEW WHERE MY NOSE WAS.  WHY COULDNT I TOUCH IT.  DONT YOU KNOW THAT MY BRAIN AND MY BODY IS NOT PROPERLY CONNECTED.  BUT I HAVE A BRAIN AND I WANT TO LEARN WHAT THE OTHER KIDS LEARN.  EVERY DAY I SAY IM GOING TO TRY HARDER BUT I FREEZE.  SOME DAY I WILL BE ABLE TO COMMUNICATE WITH YOU EITHER ON MY BOARD OR BY TYPING.  THEN YOU CAN HELP ME WITH MY ALGEBRA AND LAB REPORTS.  NOT TOO LONG FROM NOW I HOPE.  SO TILL THEN I WILL TRY TO RESPOND TO THE WORK YOU PUT BEFORE ME.  AND I HOPE YOU WONT LOSE FAITH IN ME.

SOILED TEARS

WASTED YEARS

YOUNG AT HEART

YEARS APART

IN MY PLACE

OUTER SPACE

SEND FOR ME

SET ME FREE

SING ME HOME

ERE I ROAM

DAYS AGO

DUMB AND SLOW

DREAMING NO

WATCH ME GO

NEAR ENOUGH

CALL MY BLUFF

ON MY OWN

JABS GET THROWN

NOT DEFILED

OR EXILED

HOURS TO GO

STRONGER THOUGH