REACTION TO TELEVISION COVERAGE

WELL THE WEEK HAS COME TO AN END AND I HAVE WATCHED ALMOST ALL OF THE COVERAGE. MY INITIAL REACTION IS FINALLY SOMEONE IS PAYING ATTENTION BUT WHY DOES IT TAKE THE CEO OF NBC AND UNIVERSAL STUDIOS TO HAVE AN AUTISTIC GRANDSON TO START RAISING AWARENESS?

THE NUMBERS ARE STAGGERRING 1 CHILD IN EVERY 166 BORN WILL HAVE AUTISM THAT BREAKS DOWN TO SOMETHING LIKE 68 A DAY OR 3 AN HOUR   OH MY GOD FUNDING IS LOWER THAN MOST OTHER CHILDHOOD AFFLICTIONS. 1.7 MILLIONS INDIVIDUALS RIGHT NOW WITH AUTISM THIS IS WHY  I HAVE TRIED TO START THIS JOURNAL. WE WILL SEARCH AND HOPEFULLY FIND SOLUTIONS TO AUTISM BUT FOR NOW OUR KIDS HAVE TO EXSIST  DAY TO DAY JUST THE WAY THINGS ARE--SO WY NOT TRY TO IMPROVE THE QUALITY OF THE "TODAYS" WHILE WE STRIVE FOR ANSWERS IN THE TOMMOROWS?

EVERY AUTISTIC ,EVERY FAMILY HAS DIFFERET CHALLENGES. SOME KIDS WILL BENEFIT FROM ONE THERAPY WHILE OTHERS WILL NOT . ITS ONE OF THE MOST INTRIGUING THINGS ABOUT AUTISM AND ITS WHY I THINK IT WILL BE AWHILE BEFORE THERE IS A BREAKTHROUGH. SECREATON, AUDIO TRAINING,MUSIC THERAPY,TEEACH ,ABA,HORSEBACK RIDING THERAPY,OCCUPATIONAL THERAPY,PATTERNING,VISUAL STIMULATION THERAPY IT GOES ON AND ON BUT ONE THING IS FOR SURE IN EVERY FAMILY I HAVE COME IN CONTACT WITH THE FIGHT IS WITH THE SCHOOLS TO RECOGNIZE OUR KIDS S VIABLE ,INTELLIGENT AND DESERVING OF WHATEVER IT TAKES TO HELP THEM NOT BE A STATISTIC.

WE AS FAMILY MEMBERS HAVE TO KEEP THE HOMEFIRE BURNING ALWAYS AND FOREVER AND NEVER GIVE UP BECAUSE IT IS NEVER TO LATE FOR OUR KIDS AND WE HAVE TO STAND FOR OUR CHILDREN AND MAKE NOISE WHEN THEY ARE NOT GIVEN A CHANCE. EVERYONE IS SO "HEP" TO IDENTIFY THESE KIDS AS EARLY INTERVENTION WHY???? BECAUSE THEIR ATTENDANCE IN SCHOOL IS DOLLARS IN THE DISTRICTS POCKETS BUT ASK FOR SOME OF THOSE DOLLARS AND ITS A WHOLE DIFFERENT STORY. THEN WHEN THEY GET TO BE ABOUT 17 OR 18 AND TRUST ME THEY WILL GET THERE ALL OF A SUDDEN NO ONE WANTS TO TAKE YOUR CALL OR TALK TO YOU ABOUT TRANSITION INTO OUR COMMUNITY  OR LET ME PUT IT A DIFFERENT WAY--YOUR COMMUNITY. WE HAVE TO LEARN TO ACCOMDATE OUR KID NOW PROBABLY FOR OUR SANITY AS MUCH AS THEIRS. LEARNING TO MAKE THE DAY TO DAY STUFF EASIER FOR ALL OF US GIVES A QUALITY TO OUR LIVES THAT IS IRREPLACEABLE. I BELIEVE OUR KIDS WILL FLOURISH IN THIS TYPE OF ENVIROMENT.THEY DONT NEED TO BE PUSHED NECESSARILY THEY JUST NED TO KNOW THEY CAN BE THEMSELVES WITHOUT BEING JUDGED  HOPEFULY IN THE PAGES TO COME I CAN GIVE ONE PERSON AN IDEA TO HELP THEM WORK WITH THEIR CHILD TO MAKE THINGS BETTER IN THEIR HOME. OR SOMEONE WILL ADD SOMETHNG TO THIS JOURNAL THAT COULD HELP ANOTHER OR WE START A NETWORK OF PARENTS WHO CAN HELP EACH OTHER

THE TELEVISION COVERAGE WAS A START  LETS NOT DROP IT THERE       PRESS ON  BUT MOST OF AL ENJOY YOUR KIDS JUST AS THEY ARE AND EMBRACE THERE UNIQUE GIFTS.

 

THE END OF A WEEK

WELL THE WEEK HAS JUST BEEN CHOCKED FULL OF STUFF SO WHERE DO I BEGIN???MONDAY -VALENTINES DAY I HAD THE DUBIOUS HONOR OF A MEETING AT IRC [ INLAND REGIONAL CENTER ] AN APPEAL FOR PARENT VOUCHERED RESPITE WHICH I HAVE SPOKE OF SEVERAL TIMES IN THIS JOURNAL  I WISH TO MAINTAIN RESPONSIBILITY FOR MY RESPITE AND NOT GO TO AGENCY RESPITE  AND IRC IS TRYING TO CONVERT EVERYONE TO AGENCY RESPITE. I TRUELY TRY TO UNDERSTAND THE MOTIVES BEHIND IRC TO MAKE THIS MOVE BUT I DO NOT AGREE WITH THE SIMPLE ACT THAT EVERYONE SHOULD BE TREATED THE SAME. I BELIEVE THAT ALL PEOPLE ARE INDIVIDUALS AND SHOULD BE CONSIDERED THAT WAY  THE MEETING WAS OK ANSD LEFT ME WITH HOPE THAT I WILL BE ABLE TO REMAIN INTACT AS A PARENT PROVIDER. THE NEXT COUPLE OF WEEKS IRC ND I WILL TRY TO WORK ON TH POSSIBILITIES--WHO KNOWS???

TUESDAY WAS COLLEGE  DAKOTA ENJOYSM THE UCDD PROGRAM SO MUCH WE WILL MISS IT GREATLY WHEN IT COMES TO N END. WE GOT SOME BAD NEWS WHEN HIS COACH TOLD US SHE IS MOVING ON TO A NEW JOB WITH SYLVAM LEARNING CENTERS-- WE WILL MISS HER A GREAT DEAL-- JUST ANOTHER "THING" DAKOTA WILL LEARN TO LIVE WITH--ABANDONMENT ISSUES ARE VERY DEVASTING TO HIM.

WEDNESDAY DAKOTA WENT DOWN FOR HIS CALIFORNIA ID AND I CANT BELIEVE HOW WELL HE DID WITH THE LINES THE CROWDS AND THE NOISE.

THURSDAY IS THE START OF A NEW SURVIVOR AND HE HAS BEEN LOOKING FORWARD TO IT SINCE THE LAST SERIES ENDED IN NOVEMBER HE IS A REALITY SHOW NUT--I SUPPOSE I SHOULD WRITE MARK BURNETT

AND WE ARE FRIDAY NIGHT--OH HOW I SHOULD THANK MY LUCKY STARS FOR ALL THE SUCCESSES     B U T   I AM STILL STRUGGLING WITH MY PERSONAL IRRITATION OF DAKOTAS O C D [OBSESSIVE COMPLUSIVE DISORDER]               HE HAS BEEN REALLY DIGGING HIS HEELS IN ESPECIALLY WITH THE FOOD AND THE BEDTIME . IT IS OVERWHELMING FOR ME TO CONTROL MYSELF AND NOT FLY OFF THE HANDLE WITH HIM. I KNOW HE CANT CONTROL HIS THOUGHT PATTERNS AND HIS INABILITY TO BREAK FROM ROUTINE AND I ALSO KNOW THAT MOST OF THIS TYPE OF BEHAVIOR FADES BUT SOMETIMES THE ROAD IS VERY  VERY VERY L O N G . YOU HAVE TO TIE A STRING AROUND YOUR BRAIN TO REMEMBER THIS TOO SHALL PASS . THE WORSE THING YOU CAN DO IS REACT OR GET ANGERED BY IT - IT DOES NOT BENEFIT YOUR CHILD AND ITS PRETTY MUCH FUDAL ANYWAY!

I CAN SAY THAT THIS JOURNAL HAS HELPED ME AND I HOPE EVENTUALLY IT WILL CATCH ON TO OTHERS AND THEY CAN DERIVE THEIR OWN HELP FROM WHAT I HAVE WRITTEN.    

OH YES PLEASE DONT FORGET  810 AM AND 910 AM FEB 21 THRU 25 ON NBC THER WILL BE 10 EXERPTS ON AUTISM

ALWAYS WONDERING

I CANT HELP BUT THINK THAT BEING A PARENT OF AN AUTISTIC CHILD RAISES YOUR AWARENESS TO ANOTHER LEVEL-- I FIND MYSELF NOTICING STRANGE SMELLS ,UNUSUAL SOUNDS COLORS OR TEXTURES THAT MOST PEOPLE DISMISS WITHOUT THOUGHT. I WAS STANDING IN THE STORE AT THE CHECK OUT STAND THE OTHER DAY AND I HEARD A FAINT CLANKING KIND OF A REPETITOUS THUD --  I LOOKED AROUND TO THE OTHER PEOPLE NEAR ME AND NOT ONE OF THEM WERE REACTING TO THIS SOUND  IT WAS AS IF THE SOUND DIDNT EXSIST  BEAUSE YOU SEE US "NORMAL PEOPLE" FILTER THINGS LIKE THAT OUT  SO I TURNED MY HEAD SEVERAL DIFFERENT DIRECTIONS TO HONE IN ON THE ORIGIN OF THE SOUND AND THE CLERK LOOKED AT ME LIKE I WAS POSSESSED. OF COURSE I SMILED AND SAID "WHAT IS THAT NOISE?" ONCE  I MENTIONED IT SHE AS WELL AS THE OTHERS WHO WERE CLOSE BY STARTED TO LISTEN ---WELL AS IT TURNED OUT IT WAS THE THE COIN CASHING MACHINE AND SOMEONE WAS DROPPING COINS INTO IT... ALL THOSE PEOPLE HEARD THE SOUND BUT UNTIL I BROUGHT IT TO A CONSCIENCE LEVEL THEY WERE CLUELESS....THATS WHAT OUR KIDS GO THRU ALL DAY EVERYDAY AND MOST OF THEM DONT HAVE THE WORDS TO TELL US WHAT THEY HEAR OR SEE    HOW INCREDIBLY FRUSTRATING!

SO THE NEXT TIME YOU ARE OUT JUST TRY TO BE AWARE OF ALL THE SOUNDS YOU DONT PAY ATTENTION TO AND THINK ABOUT OUR KIDS AND HOW THEY PROCESS IT,,,......................

 

BLOWING OFF STEAM!!!!!

IS THERE ANYONE OUT THERE THAT IS AS PISSED OFF AS I AM ABOUT THIS DISCONTINUANCE OF PARENTAL RESPITE???????I GOT A "PROVIDER SERVICES" "FORM"TODAY WHICH BASICALLY DISCONTINUED MY PARENTAL VOUCHERED RESPITE SO IT COULD BE "AUTHORIZED " FOR AGENCY RESPITE AND I WAS OK WITH IT UNTIL I GOT TO THE BOTTOM AND IT SAID  CLIENT DECISION TO DISCONTINUE---WELL I BLEW IT I GOT ON THE PHONE TO IRC.I FIRST ASKED TO SPEAK TO THE "RESPITE" PEOPLE  WHICH WAS A MISTAKE BECAUSE THE RESPONSE WAS "WELL ITS JUST A FORM LETTER FOR YOUR RECORDS ITS NOTHING TO WORRY ABOUT!"I FLIPPED ON THIS LADY AND I RESPONDED "THIS IS A FALSE STATEMENT ON A DOUCMENT AND I DONT ACCEPT IT ""I DID NOT MAKE A DECISIN TO DISCONTINUE SERVICES I WAS FORCED TO CHANGE OR LOOSE MY RESPITE AND THIS DOCUMENT IS A STATE AUTHORIZED DOCUMENT AND IT IS FALSE!"SHE SAID"WELL YOU NEED TO GO BACK TO YOUR CASE WORKER BECAUSE THAT IS WHAT WE WERE TOLD TO PUT ON THAT FORM " MY RESPONSE WAS "MY CASE WORKER WASNT THE ONE WHO TOLD YOU TO PUT THAT ON THE BOTTOM IT WAS THE ADMINISTATION SO MAYBE I NEED TO TALK TO MARY LYNN CLARK?"SHE SAID "WELL YOU CAN DO THAT "

SO I CALLED THE DIRECTORS OFFICE AND WHAT A SURPRIZE SHE WAS OUT OF THE OFFICE THIS WEEK WHICH IS WHAT I WAS TOLD THE LAST TIME I CALLED HER OFFICE A COUPLE OF WEEKS AGO --AND OF COURSE I GOT NOWHERE WITH HER ASSISTANT SO SHE RECOMMENDED I TALK TO CANDY AT TRANSITION SERVICES.I HAVE TO SAY THIS LADY WAS THE FIRST ONE I HAVE SPOKEN TO IN THE PASSED 3 MONTHS THAT WAS AT LEAST ABLE TO ACCEPT MY ANGER BUT ALSO GAVE ME INFORMATION NO ONE ELSE HAS DONE. ALTHOUGH IT WAS NOT MUCH ADDITIONAL INFORMATION AT LEAST SHE OFFERED TO CHECK INTO THE FORM LETTER AND GET BACK TO ME AND ALSO TOLD ME THAT I CAN APPLY FOR ESSENTAILLY A "STAY PUT" ORDER SO I CAN CONTINUE TO GET THE PARENTAL VOUCHERED RESPITE UNTIL I GO THROUGH THE HEARING PROCESS.

SHE SAID SHE WAS SURPRIZED THAT I HAD NOT GOTTEN ANY RESPONSE FROM OTHERS AT THE CENTER BECAUSE "THEY WERE REALLY GOOD AT ACKNOWLEDGING CORRESPONDENCE" I TOLD HER THAT I HAD SENT 4 LETTERS TO THE CENTER TO 3 DIFFERENT PEOPLE MARY LYNN CLARK , CORINA DE LEON, AND REN MOODIE AND I HAVENT RECIEVED AS MUCH AS AN ACKNOWLEDEMENT OF ANY OF MY LETTERS AND TO TOP IT OFF THE 4TH LETTER WAS SPECIALLY ABOUT NOT RECEIVING ANYTHING ABOUT ANY OF MY LETTERS--WHICH I THINK IS UNPROFESSIONAL AT BEST!

SO WHY AM I PISSED OFF??? AGAIN AN AGENCY THAT EXSISTS MERELY BECAUSE THERE ARE CHALLENGED KIDS IN THE WORLD AND THEIR JOB IS TO HELP US AND MAKE THINGS EASIER ...WHY DO I FEEL LIKE I AM BEATING MY HEAD AGAINST A BRICK WITH SOMEONE WHO IS SUPPOSED TO BE ALLIGNED WITH ME?

ON MONDAY I GO TO THE FIRST INFORMAL MEETING : I HOPE THAT I WILL BE ABLE TO PLEAD MY CASE {AND MANY OTHERS} AND MAKE HEAD WAY ON THIS ISSUE. THE SAD THING ABOUT THIS IS THAT I UNDERSTAND THAT THERE ARE PARENTS WHO ARE ACTUALLY GIVING UP THEIR RESPITE RATHER THAN CONVERT TO AGENCY RESPITE. ONE CAN ONLY WONDER IF THIS WAS ALL PART OF THE MASTER PLAN TO MAKE MONETARY GAINS TO THE INFAMOUS BUDGET OF CALIFORNIA---ARNOLD--CARE TO RESPOND???? WHAT IS IT WITH THE DEPARTMENT OF DISABILITY SERVICES THAT MAKES THEM WANT TO MAKE OUR LIVES JUST A LITTLE BIT MORE COMPLICATED AND PROBLEMATIC BY "FORCING " US TO A NO CHOICE AGENCY RESPITE? 

OK I AM GETTING WOUND TIGHTER AS I WRITE THIS INSTEAD OF DEFUSING MYSELF SO FOR NOW I WILL STOP AND PONDER.

TV SHOWS AND MOVIES

THE PAST MONTH THERE HAVE BEEN  4 SHOWS THAT I KNOW THAT HAVE DEALT WITH AUTISM

I JUST MENTIONED THE "WITHOUT A TRACE" EPISODE WHICH HOPEFULLY WILL AIR AGAIN AS A RE-RUN  ALTHOUGH IT WAS MORE ABOUT THE FAMILY AND PEOPLE WHO WORK WITH THE AUTISTIC CHILD IT HAD UNIVERSAL INFO . ON FRIDAY 2-4-05 DR.PHIL HAD A FAMILY FIRST PROGRAM WHICH DEALT WITH PARENTS WHO COULDNT HANDLE THEIR CHILD AS WELL AS OTHER ISSUES. ALTHOUGH IT WAS NOT ACKNOWLEDGED ON THE SHOW I ONLY HAD TO SEE 30 SECONDS OF THE 3 RD  PARENTS AND THEIR TROUBLE AND THERE WAS NO DOUBT IN MY MIND THEY WERE DEALING WITH AUTISM OR ASBERGERS. ALSO JANE PAULEY HAS HAD 2 SHOWS IN THE PAST MONTH OR SO THE TOPICS WERE ASBERGERS AND OCD [OBSESSIVE COMPULSIVE DISORDER] BOTH OF THESE SHOWS WERE INFORMATIVE AND JUST FACETS TO WHAT MOST OF US DEAL WITH BUT ALLOWED YOU TO SEE THINGS THAT MAYBE YOU DIDNT SE WIH YOUR CHILD BEFORE. I HOPE YOU ALL SEARCH OUT THESE SHOWS  IF NOTHING MORE THAN FOR PEOPLE WHO COME IN CONTACT WITH YOUR CHILDREN. THATS JUST LIKE DR,RICHARD LAVOIE HAS MANY VIDEOS BUT IF I COULD CHOOSE ONLY  ONE TO BE VIEWED BY SCHOOL PERSONNEL AND OTHERS WHO SERVICE OUR KIDS . . . . . . . .                         "HOW DIFFICULT CAN THIS BE " IS THEEEEEEEE ONE FOR ME                     

THERE ARE A FEW MOVIES THAT ARE DIFFERENT PORTRAYALS OF AUTISM     I KNOW THAT THERE  IS NO OVERT MENTION OF AUTISM IN THESE MOVIES: THEY REALLY TELL A STORY OF HOW PECULIAR AND UNIQUE AUTISM CAN BE.          I HAVE NOT SEEN "RADIO" BUT MANY OF THE PARENTS I KNOW INDICATE THAT IT IS A WONDERFUL MOVIE. "WATERBOY" WITH ADAM SANDLER IS BY FAR ONE OF THE MOST OBVIOUS PORTRAYALS OF AN AUTISTIC. "BENNIE AND JOON" IS ANOTHER STORY THAT GRABS YOU HEART AND ATTENTION RIGHT AWAY WHEN YOU KNOW THAT THE MAIN CHARACTERS DEFINITELY HAVE SOME KIND OF PERVASIVE DEVELOPMENTAL DISORDER.  ITS KINDA FUNNY HOW YOU DEVELOPE AN EYE FOR IDENTIFYING THIS DISORDER....I THINK MOST WILL AGREE THAT WHEN YOU LIVE WITH AUTISM EVERY DAY IT BECOMES SECOND NATURE TO RECOGNIZE IT ESPECIALLY WHEN IT IS SOMEONE ELSES CHILD!

WELL THAT WRAPS THIS ENTRY    WILL ADD MORE LATER JUST NEED TO TAKE A BREAK  THANKS FOR STOPPING BY..................................

FEELING GUILTY

WELL I HAD TO LOG ON JUST BECAUSE I AM ACTUALLY FEELING NEGECTFUL OF MY NEW PROJECT.TUESDAY IS A DAY THAT IS FILLED WITH LOTS OF SCHEDULES AND ROUTINES AND LATELY THE STRUGGLE WITH THE BEDTIME BEING EXACTLY 10PM HAS REALLY PUT A DAMPER ON MY "MIDNIGHT OIL"!

TONIGHT I WATCHED AN EPISODE OF JANE PAULEY THAT SHE DID ON OBSESSIVE COMPLUSIVE DISORDER AND ALTHOUGH YOU CAN BE RELATIVELY NEURO-TYPICAL AND SUFFER FROM   OCD  I REALLY SAW AN AMAZING SIMILARITY OF SYMPTOMS THAT OUR KIDS SUFFER .IT APPEARS ALMOST IMPOSSIBLE TO SEPARTE THE AUTISM FROM THE OCD. THE PERVASIVE THOUGHTS THAT INVADE THEIR BRAINS AND GO ON AND ON, THE LINING UP OF OBJECTS IN CERTAIN ORDERS OR RITUALS, REPETITIOUS BEHAVIOR,AND THE ADJATATION THAT PEOPLE SUFFER WITH THIS DISORDER AND TOO THINK THAT THE MAJORITY OF AUTISTICS DONT HAVE THE WORDS TO TELL YOU THAT THIS IS WHATS GOING ON IN THEIR BRAIN. ITS KINDA LIKE ALZEHEIMERS HAVING SIMILAR SYMPTOMS BEING THE SHORT TERM MEMORY LOSS AND THE PHASING IN AND OUT BETWEEN REALITY AND RECOGNITON OF PEOPLE AND SURROUNDINGS. TO THE POINT THAT SOME OF THE SAME MEDS ARE USED FOR BOTH. PROBABLY SOMEWHERE DOWN THE ROAD WE WILL FIND OUT THAT ITS NOT JUST THE BRAIN THAT MAKES THESE RELATED.

I GOT A CALL TODAY FROM THE REGIONAL CENTER TO SET UP AN INFORMAL HEARING AND FROM WHAT THE LADY SAID THAT THERE ARE LOTS OF PARENTS CHALLENGING THIS DECISION. I WAS ELATED TO KNOW THAT I WAS NOT THE ONLY ONE BUGGED ABOUT THIS DECISION AND THAT THERE WERE MORE THAN JUST A FEW PARENTS WHO WERE QUESTIONING THIS. SHE ONLY HAD ONE APPOINTMENT OPENING FOR ME BECAUSE OF THE VOLUME OF APPEALS AND I URGE ANYONE ELSE TO PICK UP THE TORCH AND FILE AN APPEAL ALSO THE MORE PEOPLE THE BETTER THE CHANCE TO OVER TURN THIS SCREWY DECISION.

DAKOTA FOR THE MOST PART HAD BEEN ON THE COMPLIANT SIDE THIS PAST WEEK.THE ONLY TIME WE HAVE ANY EXPLOSION IS WHEN I PUSH THE ENVELOPE AND CHALLENGE A ROUTINE THAT HE IS HELL BENT TO KEEP INTO PLACE. TRUTHFULLY IT COMSUMES WAY TOO MUCH ENERGY MOST OF THE TIME TO FIGHT IT---ITS ONLY WHEN YOU CAN" RALLY THE FORCES OF LIFE" TO MOUNT A CHALLENGE FOR HIM TO CONSIDER CHANGING A BEHAVIOR. USUALLY THE MORE YOU PUSH TO CHANGED THE MORE HE DIGS HIS FEET IN-- SO YOU FIND THAT REVERSE PYSCHOLOGY  OR  IGNORING THE BEHAVIOR TENDS TO BE THE BEST PLAN OF ATTACK! 

ITS STILL PRETTY EARLY AND I  SHOULD WRITE MORE BUT I WILL CLOSE FOR NOW JUST A REMINDER "WITHOUT A TRACE" AIRS THIS THURSDAY 10PM CHANNEL 2 THE STORY LINE IS ABOUT AN AUTISTIC BOY WHO GOES ON A FEILD TRIP AND BOLTS WHEN HE BECOMES OVERWHELMED    ALSO CHANNEL 4 AT 815AM  AND  915AM BETWEEN FEB 21 ANDN FEB 25 WILL HAVE A SERIES ON AUTISM HOPE THAT LOTS OF PEOPLE WILL SEE!