rpmwithcoco

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

We have been hitting some bumps on the road to public school, but at home we are making great strides.  Lots of excitement here this week.  Coco has had open communication of the letter board with both Dad and Lilly this week.  Huge accomplishment!  

Coco told me this poem is about home.  I love that she feels this way about home.  It’s hard to keep this place a haven – to keep the stress of our battle for inclusion outside of this place.  It creeps in.  It’s hard not to get discouraged and feel defeated in the face of Coco’s challenges.  Thank God that Coco is ever the optimist.

READY

SANDY BEACHES CALL MY NAME

MEANDERING LANES LEAD ME HOME

YELLOW STARS ALIGHT MY WAY

TAKE MY BAG OR JUST LEAVE IT

NONE CALL ME LIAR THERE BELITTLE OR INSULT ME

GREEN THINGS ARE ALWAYS GROWING

A POT OF SOMETHING DELICIOUS ON THE STOVE

READY SO LONG ALWAYS CALLING ME BACK

HAVING SO LONGED FOR IT

NEEDING ITS PROTECTION

EVERY ROAD LEADS TO IT

TELL THE DESPERATE SOULS IM READY

THIS IS WHERE YOULL FIND ME

This week marked Coco’s first week back in our school district.  After four years of exclusion, Coco started summer school back in our town on Tuesday.  She had a wonderful three days.  Then today, a district administrator and the district assistive technology expert  came in to make sure no one on Coco’s team was allowing Coco to spell.  They made it clear that Coco was only to be allowed access to PODD – a picture based system of communications that Coco has never been properly trained in or enjoyed any success with.  In Coco’s words:  THESE PEOPLE CAME IN AND TALKED ABOUT ME LIKE I WASNT IN THE ROOM.  She spend three days getting to know her wonderful  aide, experiencing success answering word problems with her teacher, and generally easing back into public school.  All that ended today.  It will take a great deal of pep-talking and encouraging to get her back there on Monday.  I’m not sure if it’s even the wise choice, but here’s what Coco has to say to her teacher and aide tonight…

YOU ASKED ME TO CALL YOU TEACHER

I DID

YOU ASKED ME TO TRY

I DID

TO GIVE SOMETHING NEW A SHOT

I DID

DO YOU STILL BELIEVE

I DO

DO YOU STILL KEEP HOPING FOR ME

I DO

CAN YOU TRY TO STICK IT OUT WITH ME

I WILL

I HAVE MY WAR PAINT ON

IT WAS THE BEST MOVIE EVER.  ALL THROUGH IT I FELT SUCH SYMPATHY FOR DORY BECAUSE SHE HAS TO OVERCOME A DISABILITY TOO.  AUGMENTING THE EXPERIENCE WAS THE AWESOME ANIMATION.  HER COURAGE TO SEARCH FOR HER FAMILY WAS INSPIRING.  DORY IS A ROLE MODEL FOR KIDS LIKE ME.  SHE NEVER GIVES UP AND NEVER LETS OTHERS VIEWS SHAPE HER OPINION OF HERSELF.  MANY TIMES IN THE MOVIE DORY IS FACED WITH CHALLENGES.  SHE FINDS THE CHUTZPAH TO FACE THEM HEAD ON.  FROM NOW ON WHEN I AM FACED WITH A CHALLENGE I WILL THINK OF DORY AND JUST KEEP SWIMMING.

COME TO ME WITH ARMS OUTSTRETCHED

COME TO ME UNBIDDEN

FEEL THE LOVE I HAVE INSIDE

DARK WITHIN AND HIDDEN

SEE ME TRY TO TELL MYSELF

ALL WILL PASS IN TIME

TELL ME ALL YOUR SECRET FEARS

AND I WILL TELL YOU MINE

HAVE A REST AND STAY AWHILE

IVE NO PLACE TO BE

EXHALE AND STRETCH YOUR LEGS A BIT

SPEND SOME TIME WITH ME

BRING ME EVERYTHING YOU KNOW

BRING IT ALL TO ME

LET ME PENETRATE YOUR HEART

LET ME SET YOU FREE