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
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.