Thursday, April 5, 2012

He Lives with Autism

April is Autism Awareness Month, and to broaden our understanding and increase our sensitivity to this complex developmental disability, we will be featuring 2 posts that will help us all to become a bit wiser and more compassionate toward families who live with this ongoing challenge.

Today's post features Brian Young, a vibrant part of the mosaic that makes up The Community at Creekside, our Saturday evening house church. He is a passionate follower of Jesus Christ, with a deep, sensitive heart to all that occurs around him.  Thanks to the use of a DynaVox, is able to communicate his wise words of insight. More of his story is here, and his exceptional prayers are here.
Linda

I AM A 42 YEAR OLD MAN WHO WAS FIRST DIAGNOSED AUTISTIC AT AGE 4.

IT WAS NOT VERY COMMON AT THE TIME.  STATISTICALLY IT WAS SAID THAT 1 IN EVERY 350 THOUSAND HAD IT.  THERE WERE NO SPECIAL PROGRAMS FOR ME AT THAT AGE.  THE FIRST PROGRAM I WENT TO AT AGE 5 DIDN'T EVEN CONSIDER AUTISM A REAL DIAGNOSIS.

FROM THAT PROGRAM I WENT TO BOCES AT AGE 6, IN THEIR KINDERGARTEN PROGRAM.  THEY HAD JUST STARTED THE FIRST AUTISTIC PROGRAM THERE BUT THEY SAW ME AS EMOTIONALLY DISTURBED AND SAID THE OTHER CLASSMATES WERE OLDER THAN ME, AND I WOULDN'T FIT IN.

I CRIED EVERY SINGLE DAY IN THE KINDERGARTEN CLASS FEELING VERY OUT OF PLACE AND MISUNDERSTOOD.  THE PSYCHOLOGIST AND THE TEACHER AGREED IT WAS DETRIMENTAL FOR ME TO STAY IN THAT CLASS IN APRIL.  SO I STAYED AT HOME UNTIL SEPTEMBER WHEN MY PARENTS CONVINCED THE SCHOOL I NEEDED TO BE IN THE AUTISTIC CLASS. BY THEN I WAS NEARLY 8.

IT WAS A GODSEND FOR ME.

LET ME GO BACK FOR AWHILE AND TELL YOU I LOST MY VERY ARTICULATE SPEECH AT AGE 2 AND A HALF.  I BECAME VERY SULLEN AND SAD.  I WAS HIGH FUNCTIONING AND READING BY AGE 2 BUT MY PARENTS DIDN'T KNOW IT.  I WAS OBSESSED WITH BOOKS AND NEEDED A ROUTINE.  I AM STILL LIKE THAT. 

MY PARENTS WERE THE WATCHDOGS OF MY LIFE AND KEPT VERY INFORMED ABOUT THE IDEOLOGY OF AUTISM AND THE NEW THINGS THAT WERE COMING TO THE PROFESSIONALS IN THIS AREA.  THEY DID NOT LET THE SCHOOL DISTRICT GET AWAY WITH ANYTHING.  MY MOM WAS VERY INSTRUMENTAL IN GETTING BOCES TO HAVE A SUMMER PROGRAM FOR OUR CLASS.  WE NEED THAT CONTINUITY.  BY THE TIME I PHASED OUT OF SCHOOL I DON'T KNOW WHO WAS HAPPIER TO SEE THE OTHER OUT OF THE PICTURE.  ARLINGTON SCHOOL DISTRICT OR MY PARENTS.  THE DISTRICT ACTUALLY TOLD MY PARENTS THINGS WERE MUCH HARDER FOR THOSE OVER 21.

WHEN IN ACTUALITY THINGS GOT SO VERY MUCH BETTER THANKS TO A WONDERFUL CASE MANAGER.  I STARTED AT REHAB (NOW KNOWN AS ABILITIES FIRST) AT AGE 21, AND ONLY AFTER A FEW WEEKS THERE I WAS INTRODUCED TO THIS FORM OF COMMUNICATION, TYPING WITH A SLIGHT TOUCH OF A FACILITATOR, ON MY HAND OR ARM I WAS ABLE TO SAY THINGS THAT WERE REALLY ON MY MIND RATHER THAN MY GARBLED ROTE SPEECH.

MY PARENTS WERE FLABBERGASTED. IT STARTED WITH THE SPEECH TEACHER AND SHE IN TURN TAUGHT MY MOTHER AND MY MOTHER TAUGHT MY FATHER, SO I COULD REALLY COMMUNICATE!  WHAT A THRILL!  AFTER ABOUT 4 MONTHS, I BEGAN TO WRITE POETRY AND PRAYERS.  IT IS A WONDERFUL OUTLET FOR ME.

UNFORTUNATELY ABILITIES FIRST DOES NOT ACCEPT THIS FORM OF COMMUNICATION AS VALID.  CONSIDERING THEY TAUGHT IT TO ME, THAT'S AN ABSURD ASSUMPTION.  THEY DO ALLOW ME TO BRING MY COMMUNICATION DEVICE TO WORK AND USE THE PREPROGRAMMED MESSAGES IN THAT BUT IT'S NOT THE SAME AS TALKING ONE TO ONE.  THEY ALLOW MY MOM TO FACILITATE WITH ME AT MEETINGS, SO THAT'S A PLUS.

MY CHURCH FAMILY TOTALLY BELIEVES IN ME AND ACTUALLY PUTS SOME OF MY PRAYERS ON THEIR BLOG.  I HAVE GONE TO DIFFERENT YOUTH GROUPS AND SPOKEN IN ALBANY AND ALSO TO SENIOR GROUPS.  THE POUGHKEEPSIE JOURNAL ACTUALLY WROTE A COUPLE OF ARTICLES ABOUT ME IN 1993 WHEN I GOT AN OUTSTANDING ACHIEVEMENT AWARD FROM REHAB PROGRAMS.

SOMETIMES IT GETS HARD AND I GET FLUSTERED BUT ALL IN ALL IT'S A WONDERFUL OUTLET FOR ME.  YES IT HAS CONSIDERABLY CHANGED MY LIFE.

AND I AM VERY GRATEFUL TO THOSE WHO BELIEVE IN ME.

1 comment:

  1. We love you Brian and Joann and are so happy that you have chosen to be a part of the Creekside Community. You bless our lives beyond words.

    ReplyDelete

Welcome to the table, friend!

This is where we gather and hang out. I'd love for you to pull up a chair and jump right into the conversation. Or simply say 'hello.'

l'll be dropping in to visit you sometime soon ...

Linda

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