Words to live by---

These 3 things remain true to the "Journey of Autism". Anyone or everyone can advise you;

ULTIMATELY you MUST go with what you feel is right. "GO WITH YOUR GUT."

Once you have arrived at this decision; "NEVER GIVE UP"!

LASTLY "Ya Gotta do, what Ya Gotta do!"



Sunday, February 19, 2006

LOST MY RESPITE BATTLE

WELL I AM SORRY TO SAY THAT THE JUDGE AT THE OFFICE OF ADMINISTRAITIVE HEARINGS RULED AGAINST ME-- I AM NOT SURPRIZED BUT I WAS HOPEFUL THAT MAYBE JUST ONCE THAT SOMEONE WOULD SEE AND LISTEN TO A PARENT AND THEIR PLIGHT RATHER THAN SIDE WITH AN AGENCY THAT CONTINUES TO MASK ITSELF AS AN AGENCY THAT IS SUPPOSED TO BE OUR SUPPORT AND ADVOCATE.

I WROTE A LETTER EARLIER TODAY TO ANOTHER GRANDMA WHO IS RAISING HER GRANDSON AND TOLD HER THAT I FEEL THAT I HAVE FAILED DAKOTA BECAUSE I DIDNT GET THE THINGS I THINK HE SHOULD HAVE  BUT THE REALITY IS THAT I FOUGHT AS HARD AS  I  COULD  AND NO MATTER WHAT STRIDE I WOULD MAKE IT SEEMED THAT THE FOLLOW THRU ALWAYS FAILED.  ALTHOUGH THIS MOSTLY APPLIED TO THE SCHOOL DISTRICT IN THE PAST I HAVE TO SAY THAT INLAND REGIONAL CENTER  IS RIGHT UP THERE TOO.

ONCE AGAIN THIS AGENCY WAS ONLY CREATED AS A WAY FOR OUR KIDS TO HAVE SOMEONE WHO WOULD FIGHT FOR THEM  BUT IT IS MORE AND MORE OBVIOUS THAT THEIR FOCUS IS NOT ON THE INDIVIDUAL S AND THE NEEDS OF THE FAMILY IT IS TO SEE HOW MANY THINGS THEY CAN DENY YOU SO YOU HAVE TO DO IT ON YOUR OWN ANDTHEY CAN PROTECT THEIR BOTTOM  LINE.

WHAT IS THE SADDEST FOR ME IS MANY WHO WORK THERE ARE CONVINCED THAT THEY ARE DOING GREAT THINGS FOR THESE FAMILIES YET EMAIL AFTER EMAIL AND CONVERSATION AFTER CONVERSATION  INDICTES HOW OUT OF TOUCH WITH THEIR CLIENTS THEY REALLY ARE. LIVE ONE DAY IN MY HOME, IN MY SHOES AND DEAL WITH THE INEQUALITY THAT MY  KID LIVES WITH EVERYDAY THEN  TELL ME THAT THIS AGENCY IS DOING EVERYTHING IT CAN TO MAKE LIFE EASIER NOT FIGHT WITH ME OR OTHERS OVER SOMETHING SO  MINOR AS THE DISPOSTION OF A COULE HOURS OF RESPITE.

IF THEY INVESTED HALF AS MUCH TIME HELPING US AND ADVOCATING FOR US  AS THEY DO FIGHT TO RESTRICT SERVICES WE WOULD ALL BE HAPPIER!

 

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