HODGE-PODGE

BOY : TONIGHT I HAVE ALL KINDS OF UNRELATED THINGS GOING AROUND MY HEAD.

FIRST THERE WILL BE AN EPISODE OF "WITHOUT A TRACE" ON CBS CHANNEL2 FEB.3 THURSDAY NIGHT @10PM ABOUT AN AUTISTIC BOY WHO BOLTS IN A MUSEUM WHILE HE IS ON A FRILD TRIP WHEN HE GETS "OVER-LOADED" I AM VERY INTERESTED TO SEE THE PORTRAYAL. THERE IS ALSO AN OSCAR BUZZ ABOUT A SHORT FILM - DOCUMENTARY THATS UP TO WIN AN ACADAMY AWARD AND IT IS CALLED "AUTISM IS A WORLD " IT IS ALSO SCHEDULED TO AIR ON CNN SOMETIME IN 2005???

 

I HAVE BEEN BEATING MY HEAD AGAINDST A WALL TO FIGURE OUT HOW TO GAT THIS IDEA STARTED TO NETWORK PARENT AND IF ANY OF YOU HAVE ANY IDEAS I WOULD GREATLY APPRECIATE YOUR INPUT   AS WELL AS IF ANY OF YOU WOULD LIKE TO BE PUT ON MY MAILING LIST PLEASE EMAIL ME AT DAKSOPENDOOR@AOL.COM  PLASE INCLUDE ANY INFO YOU WOULD BE WILLING  TO DISCLOSE. I WOULD LOVE TO KNOW ABOUT YOUR CHILDREN WHAT TYPE OF WORK YOU DO [OTHER THAN THE 24 HOUR JOB YOU DO TAKING CARE OF YOUR CHILD}THINGS YOU ARE PASSIONATE ABOUT IN REFERECE TO YOUR CHILD AND INFO YOU MIGHT HAVE THAT WOULD BE HELPFUL TO OTHER PARENTS. THANK YOU FOR ANYTHING!!!!

NOW THINGS THAT HAVE BEEN HAPPENING WITH DAKOTA-- WE WERE WATCHING TV AND THE NEWS MEDIA WAS LOCKED ON A SPECIFIC STORY AND THEY KEPT GOING ON ABOUT IT AND ALL OF A SUDDEN HE SAYS"YEAH YEAH YEAH THEY'RE HYPING IT" I CRACKED UP  I SAID "DAKOTA DO YOU KNOW WHAT THAT MEANS ?" HE SAYS "YEAH THEY'RE SPENDIN' TO MUCH TIME ON IT!" THATS SOMETHING WE HAVE THAT OTHER PARENTS DON'T EXPIERENCE IS THAT LITTLE BIT OF JOY WE GET WHEN OUR KID DOES SOME LITTLE THING THAT WOULD GO UN-NOTICED HAD OUR CHILD BEEN NEURO-TYPICAL. WE WERE JUST DISCUSSING THIS VERY THING IN GROUP LAST NIGHT. IT IS SUCH A KICK WHEN THEY MAKE THE TINY-EST IMPROVEMENT  MAN YOU FEEL LIKE YOU CAN MOVE  MOUNTAIN! SPEAKING OF WHICH WE HAVE HAD SOME IMPROVEMENT ON SELF HELP SKILLS AS MINISCULE AS IT IS DAKOTA HAS BEEN REALLY TRYING AND FOR THAT I AM HAPPY!!!!  :-}

ALSO HAVE FOUND SOME INFO ON SOME SCHOOLS IN ORANGE COUNTY CALLED PYRAMID AUTISM CENTERS--THINK I MENTIONED THIS BEFORE BUT I THINK THEY ARE WORTH LOOKING INTO.

FOR NOW  THATS IT

 

PARENTAL VENDORED RESPITE

WELL ANOTHER CHAPTER IN THE ON GOING  SAGA DEALING WITH PARENTAL VENDORED RESPITE AND MY APPEAL WITH INLAND REGIONAL CENTER. PARENTAL VENDORED RESPITE HAS BEEN ON THE CHOPPING BLOCK FOR QUITE SOME TIME BUT DO TO OUR BUDGET CRISIS IN CALIFORNIA IT IS ALL BUT GONE. I AM IN THE PROCESS OF FILING AN APPEAL WITH INLAND REGIONAL CENTER BECAUSE I DONT BELIEVE THAT OUR RIGHT TO SECURE CARE FOR OUR OWN CHILDREN SHOULD BE HANDLED BY AN AGENCY AND THAT TAKING AWAY OUR ABILITY TO BE VENDORED IS A VIOLATION OF THE LANTERMAN ACT.[ANYONE WHO IS REALLY INTERESTED CAN SEND ME AN EMAIL TO DAKSOPENDOOR@AOL.COM  AND I CAN SEND BACK ALL THE 3 LETTERS I HAVE DRAFTED AND ANY OTHER DETAILED INFO YOU MIGHT WANT].

ON FRIDAY I FINALLY RECIEVED AND APPEAL FORM FROM IRC WHICH GIVES ME 10 DAYS TO RESPOND--ALWAYS CONVIENENT THAT IT COMES ON FRIDAY SO I HAVE TO SIT ON IT OVER THE WEEKEND BEFORE I CAN DO ANYTHING ABOUT IT.

THE REALLY HOAKEY THING ABOUT THIS IS THAT WHEN THE ORIGINAL PROBLEM STARTED AND I INFORMED MY CASE WORKER THAT I WANTED TO APPEAL; INITIALLY HE SAID HE WOULD GET HIS MANAGER [JOHN CARVELE] TO SIGN IT AND MAIL IT OUT TO ME THE NEXT DAY--APROX. 2 WEEKS WENT BY AND I GOT NO APPEAL SO I STARTED A BIG COMMOTION AND ON THE 28 OF DEC I WAS TOLD BY MY CASE WORKER THAT HE WAS MISTAKEN AND THE ADMINISTRATION WOULD HANDLE THIS APPEAL AND I WOULD HEAR FROM THEM AFTER THE FIRST OF THE YEAR. BY THE 16 TH OF JANUARY I HAD HEARD NOTHING SO I CALLED AND INQUIRED AGAIN AND THE CASE WORKER SAID HE WOULD CHECK ON IT AND LO AND BEHOLD COME THIS FRIDAY I GET APPEAL PAPERS FROM THE ADMINSTRATION???NNNNNNNNOOOOOOOOO SIGNED BY JOHN CARVELE THE PERSON WHO WAS SUPPOSED TO SIGN AND SEND IT TO ME IN THE FIRST PLACE.THE PECULIAR THING IS THAT THIS "SCREWY" THING IS NOT THE ONLY THING HAPPENING LIKE THIS.....THE INITIAL INFO I HAD WAS THAT INLAND REGIONAL CENTER MADE A UNI-LATERAL DECISION TO DISCONTINUE PARENT VOUCHERED RESPITE THAN WHEN I STARTED RAISING HELL AND WANTED TO APPEAL NOT ONLY WAS I TOTALLY DISCOURAGED AND TOLD I WOULDNT GET ANYWHERE  THE MORE I PUSHED FOR ANSWERS "THEY" "IRC"  SAID IT WAS NOT THEM WHO MADE THE DECISION AND I NEED TO DIRECT MY CONCERNES TO THE DEPARTMENT OF DISABILITY SERVICES IN SACRAMENTO[DDS] I HAVE WRITTEN THE GOVERNOR AS WELL AS ALL MY ELECTED OFFICALS AND HAVE GOTTEN NO WHERE SO FAR BUT I WILL PERSERVERE  I WILL NOT LIE DOWN

I AM GOING TO CONSULT AN ADVOCACY GROUP TOMMORROW AND NOW I AM CURIOUS IF THERE IS ANYONE ELSE OUT THERE WHO IS LOSING THEIR RESPITE AND HAS A PROBLEM WITH IT LIKE I DO ? AM I THE ONLY ONE NOT ACCEPTING THIS CRAP???

 

NEW INFORMATION-SCHOOLS

TONIGHT I WAS LOOKING FOR A SCHOOL I HAD HEARD OF SEVERAL YEARS AGO IN HUNTINGTON BEACH CALLED PYRAMID. WHILE RESEARCHING THAT PARTICULAR SCHOOL, I ACTUALLY DISCOVERED THAT THERE IS ALSO A SCHOOL IN ORANGE . I BELIEVE THAT THEY  ARE A "NETWORK " OF SCHOOLS. I HAVE WRITTEN TO THE CONTACT TO SEE IF I CAN GET MORE INFO. I WILL KEEP POSTING INFORMATION AS I GET IT.

THERE ARE MANY OF US THAT HAVE BEEN TOSSING THE IDEA AROUND ABOUT STARTING A SCHOOL IN OUR "NEIGHBORHOOD"[INLAND EMPIRE] IT WOULD BE A GREAT THING IF WE COULD ACCOMPLISH THIS. MY DREAM IS TO EXTEND THIS EDUCATIONAL OPPORTUNITY NOT ONLY FOR EARLY INTERVENTION THRU HIGH SCHOOL BUT TO ALSO OFFER OPPORTUNITIES FOR AUTISTIC YOUNG ADULTS SIMILAR TO A COMMUNITY COLLEGE ATOMOSPHERE. I ALSO THINK THAT THERE IS A VERY IMPORTANT COMPONET THAT NEEDS TO BE INCLUDED WHICH IS PRACTICE AND EXPOSURE TO ALL SOCIAL SITUATIONS !

TIME TO REST MY HEAD FOR THE NIGHT.

SO MANY THOUGHTS

THIS EVENING I STARTED TO HAND OUT ANNOUNCEMENTS ABOUT THIS JOURNAL. I HAVE GREAT HOPE THAT SOMEHOW , SOMEONE WILL BENEFIT FROM THIS IDEA.

I HAVE STARTED TO ADD ADDITIONAL WEBSITES THAT MIGHT BE OF INTEREST. DR.RICHARD  LA VOIE  IS BY FAR MY FAVORITE. I HAVE SAID FOR MANY YEARS THAT IF YOU HAVE ONLY ONE CHOICE TO GIVE SOMEONE AN INSIGHT ON OUR KIDS THIS MAN HAS IT DOWN. HIS COMPREHENSION OF HOW A LEARNING DISABLED MIND WORKS, HOW TO HANDLE IT AND HARNESS IT , IS BY FAR THE GREATEST LESSON I HAVE EVER LEARNED. DO NOT PASS UP THE OPPORTUNITY TO HEAR THIS MAN SPEAK. IF YOU ONLY WATCH ONE TAPE "HOW DIFFICULT CAN THIS BE" HAS TO BE THEE CHOICE.

TONIGHT IN GROUP WE TOSSED AROUND THE IDEA OF TRYING TO START OUR OWN SCHOOL AND WHAT IT WOULD TAKE. TO SOME IT MAY SOUND IMPOSSIBLE BUT AS ONE OF THE SMART MOMS SAID "IF YOU THINK ABOUT ALL THE ENERGY YOU SPEND FIGHTING TO GET WHAT YOU  NEED FOR YOUR CHILD AND IF YOU  TAKE THAT SAME ENERGY TO CREATE SOMETHING TO HELP  YOU AND YOUR CHILD WE WOULD ALL BE BETTER OFF "HOW PROLIFIC IS THAT ? WITH ENOUGH OF US USING  OVERWHELMING PASSION IT COULD HAPPEN AND OUR KIDS WOULD GET WHAT THEY NEED-- THE RIGHT STUFF.

THE THIRD THING ROLLING AROUND IN MY HEAD IS WHY I STARTED THIS IN THE FIRST PLACE. I ACTUALLY ENDED 2004 AND STARTED 2005 SPARRING WITH INLAND REGIONAL CENTER ABOUT PARENTAL VENDORED RESPITE WHICH IS BENG DISCONTINUED. I AM REQUESTING AN APPEAL BECAUSE I FEEL IT VIOLATES THE LANTERMAN ACT . I HAVE WRITTEN  3  LETTERS TO DATE INCLUDING ONE WHICH HAS BEEN FORWARDED TO ALL MY ELECTED OFFICIALS STATE AND FEDERAL. I HAVE NOT RECIEVED ANY ACKNOWLEDGEMENT AND I BELIEVE THEY THINK I WILL JUST GO AWAY AND MAYBE "I AM SPIITING IN THE WIND" BUT I AM INSISTANT THAT I BE HEARD.IF ANYONE WANTS TO READ OR MODEL A LETTER FROM MY DRAFTS I WILL BE HAPPY TO SEND THEM TO YOU THROUGH THE EMAIL ADDRESS DAKSOPENDOOR@AOL.COM. JUST SEND ME AN EMAIL AND I WILL FORWARD THE PARENTAL RESPITE LETTERS.  THAT BEING SAID  THIS IS ANOTHER REASON I WANT TO ESTABLISH THIS JOURNAL TO UTILIZE IT TO SPEAK UP FOR OUR KIDS SINCE THEY DONT HAVE A VOICE OF THEIR OWN AND CERTAINLY DONT HAVE THE ABILITY TO USE THEIR "VOTE " TO INFLUENCE DECISIONS.

FOR NOW THATS IT  * * * *  

WELL TODAY I ACTUALY EMAILED CURE AUTISM NOW  [CAN] ABOUT DAKS OPEN DOOR.I DONT KNOW IF IT WILL GO ANYWAHER AND I  KNOW THAT THEIR FOCUS IS FINDING A SOLUTION OR "CURE" FOR AUTISM BUT I WOULD BE REMISS IF I DID NOT DO EVERYTHING ION MY POWER TO REALLY MAKE THIS SITE WORK.

THAT MEANS TELLING EVERYONE . NETWORKING AND TAPPING INTO IDEAS OTHER THAN MY OWN WILL ONLY WORK IF WE HAVE I THE HIGHEST POTENTIAL INVOLMENT POSSIBLE.

I WILL BE ATTENDING MY SUPPORT GROUP AT UCDD TOMMORROW AND ENLISTING THE HELP OF ALL THE PARENTS AND STAFF AS CONTRIBUTORS.I WILL ALSO CONTACT OTHER SITES THAT MIGHT BE ABLE TO CONTRIBUTE .

I DO NOT MEAN MONETARILY THAT IS ABSOLUTELY NOT MY INTENTION THIS IS TO HELP PEOPLE ,NETWORK PEOPLE  DO WHATEVER WE CAN TO HELP SOMEONE WHO JUST CANT FIGURE OUT A STRATEGY FOR DAILY LIVING WIH AN  AUTISTIC INDIVIDUAL.

WELL DAKOTA IS HAVING TROUBLE GOING TO SLEEP TONIGHT AND HE IS MILLING AROUND WANTING ME TO HELP HIM SO FOR NOW I AM OVER ND OUT.HE HAS HAD A GREAT COUPLE OF DAYS IT ONE OF THE WAVES OF GOOD DAYS    SO FOR THAT I AM THANKFUL! I WISH YOU ALL THE SAME. 

ACCOMPLISHMENTS

OK FOR THE PAST COUPLE OF DAYS I HAVE DONE A SIGNIFICANT AMOUNT OF VENTING SO IT IS NOW TIME TO TAKE INVENTORY OF A FEW ACCOMPLISHMENTS THAT HAVE COME TO MIND.

DAKOTA CONTINUES TO MAKE PROGRESS ON A DAILY BASIS ALTHOUGH IT MAY BE BABY STEPS I AM THANKFUL FOR EACH AND EVERY THING WE CONQUER.LAST NIGHT AS I WAS DEALING WITH MY FRUSTRATION OVER THE 10 OCLOCK BEDTIME ISSUES, I STARTED TO RE-COUNT "GOOD THINGS". IT IS AMAZING HOW ALL OF A SUDDEN YOUR ATTITUDE IS REVIVED AND YOU ARE ACTUALLY ENCOURAGED BY THE PROGRESS. SMALL TO ANYONE ELSE AND ESPECIALLY THOSE OF YOU WHO HAVE TYPICAL KIDS BUT HUGE TO ME AND OUR HOUSEHOLD. DAKOTA HAS AN OBSESSION TO OVERFILL HIS WATER GLASS TO THE POINT OF FLOWING OVER ,SPILLING ON TO THE COUNTER AND IN TO THE TRAY UNDERNEATH THE WATER DISPENSER THUS MAKING A MESS AND WASTING WATER. THIS PASSED WEEK WE RAN OUT OF WATER BOTTLES AND HE VIRTUALY STOPPED DRINKING WATER BECAUSE HE DID NOT WANT TO DRINK OUT OF THE SMALLER STORE BOUGHT BOTTLERS OF WATER. FINALLY WE GOT OUR DELIVERY OF NEW BOTTLES AND THAT VERY DAY HE DRANK HIS GLASS OF WATER ; WENT TO REFILL IT  TO BE READY FOR THE NEXT TIME HE WANTED A DRINK AND STATRTED TO SPILL IT OVER AGAIN. I SIMPLY SAID "YOU KNOW MAYBE WE WOULDNT RUN OUT OF WATER SO QUICKLY IF YOU DIDNT OVERFILL YOUR GLASS SO IT RUNS OVER!" THE VERY NEXT TIME DAK TOOK A DRINK HE STOPPED THE WATER BEFORE IT GOT TO THE TOP!!!!!HURRRRRRRRRAAAAAAYYYYYYYYY!

HOPEFULLY I HAVE SLOVED THE "WATER THING"

ACCOMPLISHMENT #2 DAKOTA HAS A TENDANCY TO USE TOO MUCH TOILET PAPER--DONT GET ME WRONG   GLAD HE USES IT AND GLAD HE IS GETTING TO THE POINT THAT HE USES IT EFFECTIVELY BUT BEING A BOY IN A HOME WITH WOMEN HE HAS BEEN TAUGHT TO TIDY UP "DRIPS AND SPILLS" ON THE TOILET AFTER URINATING. WELL SPECIFICALLY WHEN THE PAPER REACHES THE END OF THE ROLL HE IS NOTORIUS FOR EMPTYING THE ROLL OUT INTO THE BOWL THUS WASTING PAPER AND POTENTIALLY PLUGGING UP THE TOILET. THIS HAS BEEN AN ISSUE FOR MONTHS PROBABLY MORE LIKE A COUPLE OF YEARS  I DONT HAVE A SPECIFIC REASON WHY BUT ON THE VERY SAME DAY THE WATER THING CHANGED SO IT THE TOILET PAPER..

I HAVE ALWAYS NOTICED THAT IT SEEMS AS IF YOU GET "SPURTS"OF CHANGE WHEN IT HAPPENS IT ALMOST LIKE HIS BRAIN TAKES A TURN.

3 RDLY WE ARE STILL STRUGGLING WITH A LOT OF PERSONAL GROOMING ISSUES AND I AM REQUIRED TO BE INVOLVED IN SHOWERING.I HAVE TRIED MANY DIFFERENT APPROACHES AND STILL DONT HAVE THE PERFECT SOLUTION BUT ON THE SAME DAY ONCE AGAIN I NOTICED THAT HE WAS TAKING A MORE ACTIVE ROLE IN WASHING HIMSELF WITHOUT MY VERBAL OR PHYSICAL PROMPTS

SO CALL THEM ACCOMPLISHMENTS OR TRIUMPHS ITS ALL THE SAME TO ME BUT IT NEVER SEEMS TO AMAZE ME HOW REJUVINATED I FEEL WHEN I SEE DAKOTA MAKING PROGRESS: ALL OF A SUDDEN ALL THE THINGS THAT STRESS ME OUT SEEM A LITTLE LESS IMPORTANT.