SWAMPED WITH PAPERWORK

CANT HELP MYSELF  HAVE BEEN PRE-OCCUPIED WITH PAPERS FROM THE ATTORNEYS--  HAVE HAD A COUPLE OF THOUGHTS ABOUT OTHER THINGS I WANT TO POST ON THE JOURNAL BUT HAVE A DEAD LINE TO MEET SO UNTIL THEN WILL  CONCENTRATE ON PAPERWORK!!!

I DONT GET WHY THE SCHOOL DISTRICTS DIDNT RESPOND TO MY INQUIRIES ABOUT DAKOTAS FALL -- AND TO NOW HAVE TO BE REDUCED TO TALKING TO A LAWYER AND HAVING THEM PUSH THIS STUFF IN THEIR FACE WHEN TO ME IT IS SO OBVIOUS THAT THEY DROPPED THE BALL --OH WELL

MORE SO WHATS IMPORTANT IS DAKOTAS QUALITY OF LIFE . HE HAS SO MANY CHALLENGES AHEAD OF HIM AND TO DEAL WITH THE AFTERMATH OF THE FALL AND THE FACT THAT HIS LEG AND FOOT IS STILL NOT RIGHT AND MAY NEVER BE RIGHT AGAIN. WHAT I HAVE TO CONCENTRATE ON  IS NOT FOCUSING ON THE IMPERFECTIONS OF HIS  LEG AND FOOT WHILE HE IS AROUND . HE SOAKS THAT INFOMATION UP AND PERSERVERATES ON THE FACT THAT HIS FOOT IS NEVER GOING TO GET BETTER. IT BREAKS MY HEART TO SEE HIM BE SO EMOTIONAL ABOUT IT-- I HAVE JUST STARTED A NEW APPROACH TO POINT OUT  THAT ITS OK TO NOT BE PERFECT AND WE HAVE TO ACCEPT CHANGES IN ALL PARTS OF OUR LIVES -- I  MAKE A CONCERTED EFFORT TO USE EXAMPLES EVERYDAY ABOUT HOW THINGS CHANGE AND WE  HAVE TO "GO WITH THE FLO"  SOMETIMES THINGS WILL CHANGE BUT THAT DOESNT MEAN WE DONT STILL USE OR RECOGNIZE THEM WE JUST HAVE TO REALIZE THATS ITS DIFFERENT AND DIFFERENT IS OK.

 

 

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!

 

HAIRCUTS

RECENTLY HAD A FRIEND WHO HAS A FAMILY THAT INCLUDES A VER YOUNG  AUTISTIC BOY AND THERE HAS BEEN A BIG PROBLEM WITH  HAIRCUTS

AFTER I WROTE HER I THOUGHT THAT THIS WAS A REALLY GREAT TOPIC FOR THE JOURNAL SO HERE GOES:

SO MNAY PEOPLE HAVE TROUBLE GIVING OUR KIDS HAIRCUTS- - - JUST IMAGINE HOW IT MUST BE FOR THEM THATY CANT TALK  AND TELL US THEY ARE SCARED. THEY CANT DIGEST ALL THE NOISE AND VIBRATION "TYPICAL " KIDS CAN - -  WHAT TO DO??

JUST THE SOCIAL ACT OF GOING TO A SALON OR BARBER IS INTIMIDATING  FOR SOME PEOPLE.  OUR KIDS WALK IN AND BETWEEN THE MIRRORS, THE RUNNING WATER, THE BLOW DRYERS, PEOPLE YAKING, SCISSORS AND  RAZORS MAKING NOISE TO THE GARB THEY PUT ON YOU WITH THE STIFF CRUNCHY PLASTIC CAPE TO THE LITTLE PAPER AROUND YOUR NECK IT IS A WONDER A NORMAL PERSON DOESNT LOOSE IT!  HOW CAN WE EXPRCT OUR AUTISTIC KIDS TO GET IT?

SOMEOF THE SUGGESTIONS I MADE WERE :

FIRST OF ALL A SOCIAL STORY ABOUT GOING TO THE SALON-- IF YOU WANT A BUZZ CUT OR ONE THAT REQUIRES THE RAZOR YOU NEED TO DE-SENSITIZE YOUR CHILD . DR. STAN SWARTZ HAD A WONDER WAY TO DO THIS. HE WOULD TAKE SOME RAZORS OR CLIIPERS AND WHEN THE KIDS WAS DOING A PREFERRED TASK HE WOULD START WITH JUST A CONVERSATION ABOUT THE CLIPPERS WHILE HE WAS HOLDING THEM WHILE THEY WERE OFF--THEN HE WOULD TAKE ANOTHER OCCASION ON ANOTHER DAY TO RE-INTRODUCE THE CLIPPERS MAYBE BY JUST SETTING THEM DOWN ON THE TABLE WHILE THE CHILD WAS DOING ANOTHER PREFERRED TASK--NOT TURNED ON OR PLUGGED IN. THENTHE NEXT TIME HAVE THE CHILD TRY TO TOUCH THE CLIPPERS HOLD THE CLIPPERS DISPELL THE FEAR OF THE CLIPPERS AND FINALLY WORK ALL THE WAY UP TO TURNING ON THE CLIPPERS SO THEY CAN ADJUST TO THE VIBRATION AND THE NOISE--IF YOU HIT A WALL GO ONE STEP BACK BUT JUST KEEP AT IT ONE STEP AT A TIME.  THE FINAL STEP DR. SWARTZ TOOK WAS TO HAVE HIS SON  PICK UP THE RAZOR AND CUT HIS OWN HAIR SO THE CHILD COULD SEE THERE WAS NOTHING TO BE AFRAID OF. BEFORE YOU KNOW ITYOU CA BE CLIPPING THE HAIR.

ALSO A COUPL OF THINGS I RECOMMEND IS IF YOU NEED TO GO TO A SALON TRY TO MAKE AN APPOINTMENT AS THE VERY FIRST OR VERY LAST OF THE DAY SO THINGS ARE SIGNIFICANTLY QUIETER. TALK TO THE HAIRDRESSER AND TELL HIM OR HER A LITTEL ABOUT YOU CHILD AND TRY TO GET TE SAME ONE AND DEVELOPE A RELATIONSHIP.  YOU CAN ALWAYS TRY A SCISSOER CUT IF THE RAZOR IS NOT WORKING -- IF YOU TRY TO CUT AT HOME I USED TO PUT MY GUY IN FRONT OF THE TV WITH A FAVORITE MOVIE VIDEO SO HE WAS LESS AWARE OF WHAT I WAS DOING AND MORE INTO THE MOVIE. PORTABLE DVD PLAYERS ARE GREAT FOR THE SALON AND IF YOUR HAIR PERSON HAS A TV ASK ABOUT A MOVIE OR SHOW THAT MIGHT APPEASE THE CHILD

DONT MAKE IT A FIGHT BE AWARE IT IS A VERY SCARY THING FOR OUR KIDS AND THE MORE YOU HOLD THEM DOWN OR RESTRICT THEM THE MORE THEY WILL FIGHT AND RESIST GOING IN THE FUTURE   I HAVE A GREAT GUY IN THE UPLAND AREA IF YOU NEED A REFERRAL JUST EMAIL ME AT DAKSOPENDOOR@AOL.COM .

JUST REMEMBER THAT THERE ARE WAYS TO CONQUER  AND BEING AWARE  OF THE THINGS THAT SET THEM OFF WILL MAKE YOUR JOB EASIER IN THE FUTURE!

BOY AM I BEHIND!!!!!!!

WELL  I HAVE JUST BEEN BEHIND AND ESPECIALLY WITH MY JOURNAL-- I HOPE TO BE MORE DILIGENT ITS EASY TO SET IT ASIDE AND DO OTHER THINGS

SOOOOOOOOOOORRRRRRRRRRRRYYYYYYYYYYYYYYY

ONE YEAR AND COUNTING

IT HAS BEEN JUST A YEAR SINCE I STARTED THIS JOURNAL AND I HAVE HAD  A GREAT RESPONSE , INTEREST AND INPUT FROM ALL WHO HAVE HONORED ME WITH THEIR READING MY THOUGHTS AND WORDS

I HAVE MADE SEVERAL NEW FRIENDS AND HAVE GATHERED SOME VALUABLE INFORMATION  MORE FOR MY SELF THAN FOR ALL WHO READ AND SOME MORE CONTROVERSIAL THAN OTHERS

I WILL CONTINUE TO POST WHAT I FEEL IS IMPORTANT AND HOPE THAT ALL OF YOU WILL NOT BE PUT OFF BY SOME OF IT THE FIRST IS AN EXERPT FROM A  MOM WHO POSTED ABOUT JUDGE ALITOS VIEWS ON THE - ADA-                                             AMERICAN  DISABILITIES ACT      I FEEL ITS IMPORTANT AS PEOPLE WHO HAVE DISABILITY IN THEIR LIVES EVERYDAY THAT WE ARE AWARE THAT THE DECISIONS MADE IN PLACES LIKE THE STATE CAPITAL , WASHINGTON DC ,OR THE SUPREME COURT CAN DIRECTLY  AFFECT OUR HOUSEHOLDS AND WE NEED TO BE INFORMED .

I think this information should be shared with other consumers and parents.  I listened to the Alito hearing and I was struck by how callous his remarks were regarding "little people" such as persons living with disabilities.                                         Here is the information:

Memo from ADA Watch RE: National Coalition on Judge Alito's Troubling Disability Rights Record

Dear Editors/Writers:

It may be hard to believe, but one area of Judge Samuel A. Alito�s record remains unexamined by most major media: his views on the rights of Americans with disabilities.

A close look at Judge Alito�s opinions and writings makes it clear that he would like to reverse the historic gains of people with disabilities. He has relied repeatedly on a cramped vision of congressional authority to protect the rights of all citizens, and he has routinely ignored the factual record of discrimination and abuse of people with disabilities.

We ask that you review the facts below and share with your audience this further reason why Judge Alito should not be confirmed as a member of the U.S. Supreme Court.

�       In Pirolli v. World Flavors, Inc., in 1999, Alito wanted to
dismiss the discrimination claim of a man with mental disabilities because his lawyer used incorrect language in the legal papers. The man�s coworkers had forcibly sodomized him with a broom, stuffed him into a garbage can, beat him and made humiliating remarks about his disability. Fortunately, the other Third Circuit Court of Appeals judges disagreed with Alito's callous approach.

�       In Nathanson v. Medical College of Pennsylvania, Alito
wanted to deny a court hearing to a woman who claimed the school reneged on promises to provide her with special seating and other accommodations for her disabilities. Alito's fellow Third Circuit judges said the standard of evidence that Alito wanted her to meet was so restrictive that "few if any cases would survive" motions to dismiss.

�       In Sabree v. Houstoun, Medicaid recipients challenged
Pennsylvania's failure to provide community-based intermediate care facilities for individuals with mental retardation. In a precedent-shattering verdict, the trial court ruled that the recipients had no right to go to court to enforce the requirements of the Medicaid Act. The Third Circuit reversed that ruling, declaring that they did. In Alito�s opinion, however, he noted that "the analysis and direction of the District Court may reflect the direction that future Supreme Court cases in this area will take..." This raises an ominous possibility for the direction of Alito�s Supreme Court.

�       In Adapt v. U.S. Department of Housing and Urban
Development, Alito held that a federal agency could not be sued for failing to enforce its own regulations on making housing accessible and adaptable for people with disabilities - even though HUD officials had admitted widespread compliance problems.

�       In Doe v. National Board of Medical Examiners, Alito's
narrow reading of the Americans with Disabilities Act allowed the board to "flag" the test score of a candidate who had received accommodations during the licensing exam because of his multiple sclerosis. Such flags raise the likelihood of discrimination. Congress meant the ADA to cover broad circumstances and did not spell out every specific practice that it might prohibit.

Many more cases illustrate Judge Alito�s disregard for the claims of Americans with disabilities, and we invite you to examine them yourselves: Chittister v. Department of Community & Economic Development, Nevada Department of Human Resources v. Hibbs, Helen L. v. DiDario, Three Rivers Center for Independent Living v. Housing Authority of Pittsburgh, and Katekovich v. Team Rent A Car of Pittsburgh, Inc.

These cases and others indicate that Alito's confirmation would put at risk the Americans with Disabilities Act (ADA); the Olmstead et al v. L.C. decision against institutionalization; Section 504 of the Rehabilitation Act; the Fair Housing Amendments Act; the Family and Medical Leave Act (FMLA); and other laws and precedents of great importance to people with disabilities.

For these reasons, a coalition of hundreds of national, state and local organizations concerned with these rights has united to oppose Judge Alito's nomination. They include ADA Watch/NCDR, ADAPT, the Association of Programs for Rural Independent Living, the Disability Rights Education and Defense Fund, Judge David Bazelon of the Center for Mental Health Law, the Disabled Action Committee, the National Association of People with AIDS, the National Association of Rights Protection and Advocacy, the National Council on Independent Living, The Polio Society, the World Association of Persons with Disabilities and many more.

Please consider an editorial joining with these Americans in speaking out against the nomination of Samuel A. Alito to the Supreme Court. We would be happy to answer any questions you might have.

Sincerely,

Jim Ward
Founder and President

ADA Watch/National Coalition for Disability Rights
1201 Pennsylvania Avenue, NW, Suite 300
Washington, DC 20004
Cell: 202-415-4753
Email: JimWard@adawatch.org
ALSO THERE HAVE BEEN MANY INQUIRIES AND COMMENTS ABOUT THE REGIONAL CENTERS   I HAVE A LOVE HATE RELATIONSHIP WITH THIS AGENCY-- THEY SHOULD BE OUR BEST ADVOCATE YET THEY CAN BE  THE MOST FRUSTRATING  TO DEAL WITH. I HAD ANOTHER MOM WRITE ME AND GIVE ME THIS INFO

Comment Added
A comment has been posted to the Journal:
DAKS OPEN DOOR-JOURNAL
REGIONAL CENTERS AND VENDOR
Comment from: parca1234
"Dear Cindy,

I totally agree with you and have been trying to make changes for 3 years now.  Inland is one of the "corrupt" regional centers in Southern California.  Here is some information you probably don't know:

Of the 21 regional centers, 11 are considered corrupt.
There are regional center personnel taking money to place clients
There are regional center personnel giving their friends all the services
Some consumers get much, much more while others are overlooked because they have no one to fight for them
Homes are going broke and regional centers vendor their friends
Some careproviders get special attention, one-to-one funding, etc. while others are forced out of business for speaking up
Vendors are favorites of regional center personnel

I am trying to collect stories and make this corruption known.  Please spread the word and send me your information.

Thanks,

PARCA (people against regional center abuses)."    

WELL I  HOPE THAT I WILL CONTINUE TO GET MORE INPUT AND INFORMATION FROM THOSE OF YOU WHO READ  BECAUSE THE POINT OF THIS JOURNAL IS TO ESTABLISH A NETWORK FOR PARENTS TO HELP EACH OTHER -- I WANT THIS TO BE AN EXTENTION, OF A PART OF WHAT THE CENTER WILL BE ABOUT;  REFERENCE AND RESOURCE.  I WELCOME ALL INFORMATION  WHETHER ITS SOMETHING I UTILIZE IN OUR FAMILY OR NOT-- I ADMIT I AM WEAK IN THE DAN PROTOCOL {DEFEAT AUTISM NOW}{WHICH IS A NUERO-BIOLOGICAL APPROACH} BUT I THRIVE FOR ANY OR ALL INFO PRESENTED

ONCE AGAIN THE INTENT IS TO HELP OTHERS FIND WHAT WORKS FOR THEM IWTH THEIR FAMILIES AND IN THEIR HOMES     JANUARY 2006 IS IN THE BOOKS  LETS LOOK FORWARD TO THE REST OF WHAT 2006 CAN BRING TO US ALL!