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:
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.
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.