PROM 2006

AFTER MISSING THE EVENTS AT THE END OF THE SCHOOL YEAR IN 2005 [the leg--you know!] I HAVE REALLY TRIED TO GET DAKOTA TO GET INVOLVED-- OR AT LEAST INTERESTED .  FOR THE MOST PART HE STILL IS VERY RESISTANT AND OFTEN TIMES SEEMS TO SUFFER FROM A LOT OF ANXIETY

YESTERDAY WAS THE "PROM"  THIS FUNCTION IS SPECIFICALLY DESIGNED FOR THE CHALLENGED KIDS IN THE MANY DISTRICTS IN OUR AREA-- 2 YEARS AGO THEY HAD IT AT A  RATHER SMALL OFFICE WITH A MULTI-PURPOSE BUILDING. THE EVENT WAS A NICE GESTURE BUT REALLY FAR FROM ANYTHING EVEN Recognizably  CLOSE TO A REAL PROM. 

WELL THIS YEAR I GIVE THEM BIG KUDOS -- I HAVE TO SAY THAT THIS IS PROBABLY THE BEST THING THAT OUR KIDS HAVE EVER BEEN A PART OF ! THIS WAS AN UPLIFTING  EXPERIENCE-- AND IT HAD ALL THE "BUTTONS AND BELLS" THAT MADE IT A REAL PROM---WITHOUT ALL THE BORING DETAILS  JUST IN GENERAL THERE WAS  A BEAUTIFULLY DECORATED HUGE HALL WITH A LIVE ROCK BAND, DOOR PRIZES, Souvenirs  BALLOONS AND FOOD.

THE MOST IMPORTANT THING WAS THE KIDS -- THEY WERE ABLE TO DRESS UP AND HAVE AN EVENING THAT WAS EQUAL TO ANY "TYPICAL " EXPERIENCE. WHAT I SAW WAS  A HUGE ADVANCE IN MANY OF THESE KIDS' SOCIAL SKILLS.  I EVEN SAW MY OWN SON RAISE HIS HAND AND MOTION TO A COUPLE OF CLASSMATES WHO JUST ENTERED THE ROOM TO COME OVER AND SIT WITH HIM--WOW! THESE KIDS WERE ON CLOUD NINE AND THE PARENTS IN ATTENDANCE  ALL FELT THE SAME---THIS WAS STELLAR

NEEDLESS TO SAY THIS WAS  THE EVENT OF THE SEASON   ONE THAT WILL GO DOWN IN MY BOOK AS UNFORGETTABLE AND EVEN TODAY I SAW DAKOTA RECOUNT THINGS THAT HAPPENED LAST NIGHT-- WITH A SMILE!

THANK YOU TO ALL OF THOSE WHO MADE THIS EVENT HAPPENED YOU MADE A LOTS OF KIDS VERY HAPPY AND TO TOP IT OFF  THE PARENTS  FOR ONE NIGHT HAD AN EVENING THEY THOUGHT WOULD PROBABLY NEVER HAPPEN---

THEIR CHILDREN GOING TO PROM 2006!!!!!

MY MEETINGS THIS PAST WEEK

JUST A BRIEF UPDATE OF MY 2 MEETINGS THIS WEEK

I LEARNED A LOT AFTER I STTENDED THE SWITZER CENTER ON SUNDAY-- I AM SO EXCITED ABOUT THE PROGRAM THEY ARE DEVELOPING AND THAT THER WILL BE CHILDREN IN A DIFFERENT AGE GROUP BEING SERVED VERY SOON-- I AM PARTICULARLY ENCOURAGED THAT THIS TYPE OF CLASS IS UNFOLDING AND THAT THERE IS HOPE OF MORE CLASSES SERVING OLDER KIDS-- RIGHT NOW THEY WILL ADDRESS 10 TO 14 YEARS OLDS ON THE AUTISM SPECTRUM WITH PLANS TO EXPAND TO HIGH SCHOOL. WHAT MAKES THIS SO GREAT IS THAT SO MANY ARE GETTING EARLY INTERVENTION  IT IS REFRESHING TO KNOW THAT THIS END OF THE POULATION WILL NOT START GETTING SOME OPTIONS.

RELATING THIS TO MY CENTER IS THE FACTOR OF TRANSITION-- THE APPROACH IS RELATIONSHIP DEVELOPEMENTAND WHETHER IS A SCHOOL OR A CENTER THE THEORY IS THE SAME  FOCUS ON THE INDIVIDUALS STRENGTH AND PARLAY THAT INTO LEARNING EXPERIENCES-- WHAT A GREAT WAY TO ENGAGE OUR KIDS AT ANY AGE

I ONLY HOPE THAT THIS SCHOOL CATCHES ON AND THE INLAND EMPIRE WILL EVENTUALLY SEE SOMETHING LIKE IT-- I AM NOT QUITE SURE WHY THE DISTRICTS DONT BAND TOGETHER AND MAKE THEIR OWN CLASSES IT WOULD SAVE SO MUCH MONEY AND BE SO MUCH MORE PRACTICAL THEN A PRIVATE OR NON PUBLIC SCHOOL.

AS FOR MY CENTER WHICH THE HOPE IS TO DEVELOPE A ONE STOP SHOP INCLUDING A SCHOOL EVENTUALLY -MANY OF THE STARTEGIES WILL APPLY  I DID MEET WITH A  GROUP ON MONDAY TO "PITCH'THE CENTER AGAIN AND I BELIEVE THERE IS SOME INTEREST BUT IT APPEARS THAT THE CONCERN IS THE SAME IT IS TOO AGGRESSIVE AND TO AMBITOUS THE WAY I HAVE DESCRIBED IT-- I WILL CONTINUE TO FORGE ON

I INTEND TO PURSUE WAYS TO RAISE MONEY TO DEVELOPE IT MYSELF  IT TAKES A CONSIDERABLE AMOUNT OF SEED MONEY THAT I DONT HAVE BUT THAT WONT STOP ME-- THE OTHER ISSUE IS HOW TO KEEP IT OPEN ONCE IT OPENS --     MY INTIAL THOUGHT IS PERHAPS LIKE A GYM OR YMCA BY MEMEBERSHIP

FOR NOW THERE ARE NO ANSWERS BUT THE DREAM IS STILL ALIVE AND I PRESS ON!!!!

ANYONE OUT THERE ?

HAPPY WEDDING APRIL 29

G & M YOU KNOW WHO YOU ARE

I WISH YOU MANY HAPPY YEARS TOGETHER AS YOU SAY YOUR VOWS AND EMBARK ON THIS WONDERFUL VOYAGE OF LOVE!!!!!!!

THIS IS A PERSONAL NOTE TO SOME VERY IMPORTANT PEOPLE WHOM I KNOW READ MY JOURNAL QUITE FREQUENTLY -- I HAD HOPED TO TRAVEL TO ATTEND THEIR WEDDING BUT AS CIRCUMSTANCES WOULD PRESENT THEMSELVES  IT JUST BECAME IMPOSSIBLE

AND YES IT COMES AS PART OF THE TERRITORY OF LIVING WITH AUTISM-- IN THIS PARTICULAR CASE IT WAS STRICTLY TIMING-- BECAUSE OF THE "ANNIVERSARY " OF  THE BREAK  IT JUST WAS NOT THE RIGHT TIME  FOR US!!

BUT DEFINITELY THE RIGHT TIME FOR G&M!!!!!

 

 

APRIL 27 2006--A YEAR LATER!

ONE YEAR AGO TODAY; DAKOTA BROKE HIS LEG. ALTHOUGH  IT SEEMS THAT I CAN PERHAPS SEE THE LIGHT AT THE END OF THE TUNNEL --OUR FAMILY IS A LONG WAY FROM THE FINISH---- AT THIS POINT MY HEART HAS SUFFERED ANOTHER BLOW FROM WHICH I DONT THINK IT WILL EVER RECOVER AND I HAVE NO ABILITY TO ERASE OR FIX WHAT HAS HAPPENED. IT IS INCREDIBILY FRUSTRATING WHEN YOU THINK YOU HAVE TAKEN EVERY PRE-CAUTION AND YOU HAVE PLACED YOUR CHILD IN THE HANDS OF COMPETENT PEOPLE  ONLY TO HAVE SOMETHING HAPPEN THAT SEEMS TO BE UNEXPLANABLE OR UN ACCOUNTABLE.

TO ARRIVE AT A PLACE WHERE YOU HAVE MOURNED THE FACT THAT YOUR CHILD IS NOT "TYPICALLY DEVELOPING" BUT YOU ARE OK WITH THE CHALLENGE AND ARE FACING IT HEAD ON;TO ASSESS YOUR CHILDS POSITIVE ABILITIES AND ONE OF THEM BEING AN  ABLE BODY WITH 10 FINGERS AND 10 TOES THAT WORK CORRECTLY   AND THEN TO FACE THE FACT THAT NOW THERE IS ANOTHER DISABLING FACTOR IN YOUR CHILDS LIFE  IS DEVASTING--

THE ONLY THOUGHT I HAVE IS , IF  IT HURTS ME THIS MUCH  WHAT IS IT DOING TO MY CHILD? THE BITCH  IS  ""OH THATS RIGHT HE DOESNT HAVE THE ABILITY TO TRUELY TELL ME JUST HOW MUCH IT HURTS , WHEN IT HURTS, WHAT HIS HEAD IS PROCESSING FROM THE FEAR ,THE ABILITY TO  ACTUALLY FEEL THE FEAR AND KNOW WHAT IT IS AND OH YES ,HOW 'BOUT PROCESSING THE FEELINGS AND LEARNING HOW TO RE-COOP FROM THESE FEELINGS AND FEARS                                     WHAT A HELPLESS DAMN FEELING.

AS THE SAYING GOES THO  "IT IS WATER UNDER THE BRIDGE" "DONT CRY OR SPILLED MILK" "PULL YOURSELF UP BY THE BOOT STRAPS AND GET ON WITH LIFE"    YES ITS ALL FINE AND GOOD FOR THOSE WHO LEAD A RELATIVELY NUERO-TYPICAL  LIFE , TO ALL OF US ,IT IS ANOTHER HOLE IN THE BOAT AND THE WATER CONTINUES TO FLOOD THE LIFE RAFT WE CLING ON TO WITH OUR HOPES . THAT THINGS WILL BE BETTER OR THERE IS ANOTHER "CURE" JUST OVER THE NEXT WAVE AS WE DROWN AT SEA.

SOMETIMES IT IS VERY DIFFICULT TO PUT THESE WORDS OUT THERE FOR OTHERS TO READ --BUT THE ONE DRIVING FORCE IS THEFACT THAT I KNOW I AM NOT THE ONLY ONE OUT ON THIS OCEAN JUST TRYING TO SURVIVE AND ALL MY RANTS AND RAVES ARE TO LET THOSE OTHERS KNOW  WE FLOAT IN SEPARATE LIFEBOATS BUT WE ARE ALL IN THE SAME WATER!  KEEP BAILING- KEEP PADDLING-KEEP PRAYING  

THE DREAM IS STILL ALIVE

THIS WEEKEND BEGINS MORE HOPEFUL THINKING FOR THE CENTER. I HAVE A MEETING TO ATTEND TOMMORROW WHERE THE CENTER FOCUSES ON "RDI "  WHICH  IS A RELATIONSHIP BASED LEARNING FOR OUR KIDS. A FEW PIECES OF TEXT THAT WAS SENTTO ME IT SEEMS VERY SIMILAR TO WHAT I HAVE BEEN FORMULATING  N MY HEAD FOR YEARS--ALSO THE TARGET AGE IS MIDDLE SCHOOL WHICH IS AMAZING BECAUSE SO MANY OF THE RECENT PROJECTS ARE HOHNED IN ON YOUNGER CHILDREN  ITS GREAT TO SEE THAT FINALLY A FEW PEOPLE ARE REALIZING THAT THE OLDER KIDS ARE NOT LOST CAUSES--AS A MATTER OF FACT I ACTUALLY BELIEVE THAT SOME OF OUR KIDS  ARE JUST GETTING TO THE POINT OF BEING ABLE TO ABSORB AND ACCEPT SOME ACADEMIC CHALLENGES WHEN THEY GET THRU THEIR PUBERTY--IF YOU THINKABOUT IT WE ARE ALL SO ANXIOUS TO GET OUR KIDS OUT THERE AND IN THE MIX WITH REGULAR KIDS AT A YOUNGER AGE  THAT I THINK WE MISS ALL THE QUES THEY GIVE US WITH BEHAVIORS TANTRUMS AND REFUSAL TO CO-OPERATE --TRYING TO TELL US THAT THEY ARE HAVING A HARD ENUF TIME TRYING TO DIGEST JUST BEING ABLE TO COPE WITH ALL THE OTHER STUFF SCHOOL THROWS AT THEM. THE MORE I THINK ABOUT THIS AND THE MORE I  WRTIE ABOUT IT AND REFLECT ON MY EXPERIENCE WITH MY SON IT MAKES SENSE . OUR KIDS HAVE TO UNDERSTAND THE DYNAMICS OF BEING IN A STRANGE PLACE WITH STRANGE PEOPLE WITH STRANGE SIGHTS,SOUNDSAND SMELLS --THEY ARE PULLED AWAY FROM EVERYTHING THAT FEELS SAFE AND FAMILIAR TO THEM AND THEN WE TRY TO THROW AL THIS ACADEMIA AT THEM --HOW CAN THEY COPE??? THEY THROW A FIT AND THEN WE ARE UPSET BECAUSE THEY DONT FIT IN AND THE "REGULAR" CLASSROOM  IS TOO CHALLENGING AND ALL ALONG WE KNEW THEY WERE AUTISTIC  HOW DARE WE EXPECT SO MUCH OF THEM,??? MY THEORY IS THAT IT TAKES OUR KIDS POTENTIALLY YEARS TO ACCLAMATE  TO NEW SITUATIONS AND UNTIL THEY FEEL SAFE THEY CANT POSSIBLY ASBORB ACADEMICS MUCH LESS LEARN THINGS LIKE HOW TO SIT APPROPRIATELY IN A CLASSROOM , HOW TO MAKE IT THRU LUNCH WITH OUT LOOSING THEIR HEAD  AND OH MY GOD WHAT ABOUT THAT STRANGE BATHROOM ???   HOW CAN THEY POSSIBLY FIGURE OUT 2+2 WHEN THEIR HEADS ARE BURSTING WITH ALL THE SOCIAL QUES AND RULES SCHOOL REQUIRES??

SO THINK ABOUT THIS DO WHAT YOU CAN AND CERTAINLY CHALLENGE YOUR CHILD BUT LIKE WITH MY SON  I AM JUST NOW SEEING HIS ABILITY TO GRASP AND EMBRACE  ACADEMICS  BETTER THAN I HAVE IN ALL THE YEARS HE HAS SPENT IN SCHOOL --  PERHAPS WE ALL NEED TO STEP BACK A BIT AND GIVE OUR CHILD THE ABILITY TO SHOW US WHAT THEY NEED ----  SURE IT WILL BE IN CODE    BUT MOST OF US SPEAK IN COIDE TOO!!!!!

THANKS POLLY!!!

WELL THANKS TO ONE OF MY MOMS WHO READS THE JOURNAL SHE SENT ME THE ACTUAL STORY ABOUT "HOLLAND" SO IF YOU ARE INTERESTED IT IS BELOW:

Welcome to Holland By Emily Perl Kingsley; Illustration by Shiju George  

<PAGE 1> I am often asked to describe the experience of raising a child with a disability - to help people who have not shared this unique experience, to understand it, to imagine how it would feel.

It's like this.

When you're going to have a baby, it's like planning a fabulous vacation - to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. Michelangelo David. The Gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. And you begin to notice that Holland has windmills. And Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy. And they're all bragging about what a wonderful time they had there.

And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain will never, ever go away. Because the loss of that dream is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things. About Holland.