GOODBYE 2005

AT THE RISK OF REPEATING MYSELF OR BEATING A SUBJECT TO DEATH --I AM SO GLAD TO PUT 2005 TO BED

THIS WILL BE THE LAST ENTRY FOR THIS YEAR AND I CANT BELIEVE THAT I HAVE MADE IT A WHOLE YEAR WITH THE JOURNAL!!!!! I FEEL POSITIVE ABOUT THIS ENDEAVOR AND HAVE HAD NUMEROUS CONTACTS COMMENTS AND INQUIRIES SO I FEEL THAT IT IS NOT ONLY GOOD FOR ME BUT IT SEEMS TO BE HELPING  A FEW OTHERS TOO!!!

2006 HOLDS THE PROMISE OF WHAT HASNT ALREADY HAPPENED AND FOR THAT I AM EXCITED                                                              I HOPE THAT IT BRINGS EVERYONE HOPEFULNESS HAPPINESS AND HEALTH!

PERHAPS THE START OF A CENTER     I AM MEETING AGAIN WITH PVW AN EXSISTING NON PROFIT AGAIN AND HAVE MADE CONTACT WITH ANOTHER WOMAN WHO HAS STARTED A CENTER SOMEWHERE IN UPSTATE NEW YORK AS  WELL AS THE SWITZER CENTER IN TORRANCE SO LETS SEE WHAT HAPPENS

I HAVE SOME PERSONAL GOALS  I AM PONDERING BUT MORE IMPORTANTLY MY FOCUS IS ON THE QUALITY OF LIFE FOR  DAKOTA   I WANT TO TRY TO MAKE SOME LIFESTYLE CHANGES TO HELP US GET MORE HEALTHY  AND I HOPE THAT FINANCES WILL TAKE A TURN FOR THE BETTER    ENABLING ME THE ABILTY TO DO MORE THINGS WITH HIM

FOR NOW ITS OVER AND OUT                                             GOODBYE 2005      GOOD RIDENCE

HELLO HOPES  DREAMS  AND  PLANS FOR THE FUTURE!!!!!!!YEEEEEEEEEHHHAAAAAAAAAAAAAAAAA

THANKS FOR READING!                                                                               

 

 

 

 

 

BARGAINING CHIPS

ITS ALL IN THE BARGAINING CHIPS!!!!!!

CHRISTMAS CAME LATE AT OUR HOUSE THIS YEAR --LOGISTICS WHICH IS INTERESTING WITH A CHILD WHO HAS AUTISM-- SPARING  ALL THE DETAILS DAKOTA SPENT SOMETIME WITH HIS DAD SO HE HAD CHRISTMAS TWICE WHICH HAS BEEN  PART OF MOST HIS LIFE  SO HE IS CONDITIONED TO ROLL WITH THE FACT THAT SANTA WILL COME LATER  A DAY OR TWO DEPENDING ON WHERE    HE IS!     OK

SO IT WAS A GOOD CELEBRATION  LOTS OF GOODIES              SANTA  DECIDED THAT WITH ALL THE TROUBLE HE HAD WITH HIS FEET HE NEEDED SLIPPERS WHICH --MOM HAD NEVER GOTTEN HIM TO WEAR  AND SANTA LEFT A NOTE TELLING HIM THAT HE WAS CONCERNED ABOUT HIS FEET AND THAT HE WANTED DAKOTA TO WEAR THESE SLIPPERS AND THAT HE WOULD BE "WATCHING".  NEEDLESS TO SAY DAKOTA HAS BEEN  RESISTANT  TO PUT THE SLIPPERS ON      IN FACT ADAMANT ABOUT NOT PUTTING THEM  ON                           SO THE BATTLE INSUED TODAY-- I STARTED THIS MORNING TELLING HIM HE NEEDED TO TRY TO JUST PUT THE SLIPPERS ON CUZ SANTA WAS WATCHING -- - OH NO    WHEN HE FINISHED HIS SHOWER I TOLD HIM  I  WANTED HIM TO TRY PUTTING THE SLIPPERS ON AND IT WAS A  NO  N O    NO    SO I SAID I WASNT GOING TO HELP HIM DRESS  HE WOULD HAVE TO DO IT HIMSELF OH BROTHER DID I PISS HIM OFF  WE WENT BACK AND FORTH AND I CALMLY EXPLAINED TO HIM THAT IF HE WAS GOING TO SAY NO TO ME ABOUT THE SLIPPERS THEN  I COULD SAY NO TO HIM ABOUT DOING SOMETHING FOR HIM.   HE DIDNT LIKE THE ANSWER BUT HE STUCK  TO HIS GUNS AND ENDED UP DRESSING HIMSELF  OUT OF STUBBORNESS FOR NOT PUTTING ON THE SLIPPERS SO THROUGH OUT THE DAY I TRIED TO NO AVAIL--- BUT THEN COMES TIME FOR LIGHTS OUT   HE WANTED ME TO LAY DOWN  WITH HIM                     HE WAS BEGGING  IN A PLAYFUL MANNER --"PLEASE MAMMA SLEEP WITH ME" SO I DECIDED NOW WAS THE TIME TO TAKE ANOTHER RUN AT THE SLIPPERS SO I SAID --"YOU WANT ME TO LAY DOWN WITH YOU THEN JUST TRY I THE SLIPPERS AND WALK AROUND THE BED" WELL AT FIRST HE BALKED HE TRIED 2 OR 3 TIMES TO TALK ME INTO LAYING DOWN  WITH HIM BUT I  REITERATED TRY ON THE SLIPPERS AND

ALL OF A SUDDEN  IT WAS JUST LIKE SOMEONE FLIPPED THE SWITCH AND HE PUT THE SLIPPERS ON AND EVEN WALKED DOWN THE HALL TO SHOW HIS GRANDMA!!!!!! HE ONLY LEFT THEM ON FOR  A FEW MINUTES BUT AS I SAID ITS ALL IN THE BARGAINING CHIPS--- YOU HAVE TO PICK YOUR BATTLES , GAUGE THE TIMING AND SIEZE THE OPPORTUNITY

I DONT KNOW IF I WILL GET THEM ON HIM AGAIN BUT I WILL CONTINUE TO PURSUE THE "SLIPPER ISSUE" AND KNOW THAT I HAD ONE LITTLE VICTORY THAT MIGHT CHANGE LIFE A L;ITTLE FOR DAKOTA

JUST A NOTE  DAKOTA STILL DOESNT TIE LACES AND ISNT VERY SUCESSFUL WITH VELCRO  SO SLIP-ON SLIPPERS WILL HELP HIM BE MORE INDEPENDENT IN DRESSING.  ALSO HE WEARS SOCKS ARUND THE HOUSE WHICH DOESNT HELP HIM IF HE NEEDS TO GO OUT TO WATCH THE DOG OR TAKE OUT THE TRASH

IT GETS BACK WHICH BATTLES YOU WANT TO FIGHT AND WHAT OPPORTUNITY YOU HAVE  ONE THING I DO HAVE TO SAY --YOU HAVE TO BE VERY CAREFUL WHAT YOU WISH FOR BECAUSE IT CAN COME BACK TO HAUNT YOU    BUT AL IN ALL IT S IN THE BARGAINING CHIPS  IF YOU HAVE THE RIGHT HAND YOU CAN GET THRU TO OUR KIDS AND SUCEED

CHRISTMAS LETTER

Merry Christmas and Happy New Year    2005

Dear Family and Friends:

Here’s hoping this finds you all happy and healthy this

 HolidaySeason.

2005 has been an especially difficult year around our house.

In March Dakota graduated from the U.C.D.D. program @Cal State San Bernardino. It is a specially designed program for individuals with Autism and a support group for their families. We had been going for over 3 years and were sad to say good bye to so many good friends and a great support system.

That is when I started to research and create a potential Center for Autism which I am still currently working on. I have run into quite a lot of skepticism because my project is “ambitious and all- inclusive” which causes problems with funding. Also there are many groups supporting research and “cures” for Autism but very little is being done for “Living with Autism”. Of course the most difficult task is the money to get started so I press onward. It is like the

“Field of Dreams”-“If you build it they will come”

Also I started a public journal on AOL which is just an accumulation of thoughts, ideas and strategies for living with Autism on a daily basis. It is also designed to help myself as well as others create a quality of life for our kids that will probably live with Autism for the rest of their lives

Anyone who might be interested can go to AOL’s homepage –click on journals and then input DAKS OPEN DOOR in the search box.

 

So we made it thru the first quarter of the year unscathed- then came April. I finally had made a commitment to repair and update my bathrooms and right in the middle of everything being torn up

I get “the call”--Dakota had fallen at school and broken his leg.

Sparing all the details it was a nightmare and we are still not out of the woods. Essentially he had a compound spiral fracture in 3 places which required surgery and a hospital stay. He refused to get off the bed for over 2 months for anything!!! And I mean anything!!! I was ready to drive off a cliff. Since then, we have gone thru 3 casts, additional surgery on his toes and hours of physical therapy—the leg is still not right. We will continue to work to restore the leg and have limitless hope that Dakota will eventually have no pain and will able to walk correctly again.

 

So the rest of the year has been a side show in comparison with dealing with the injury—Of course June came around and Dakota was not able to graduate so he will be extended an additional year. July 4th was Mom’s 79th birthday and we spent it in our home town -Ontario

There is a parade and craft faire and the all-states picnic. We have a great friend who has a beautiful house on Euclid Avenue {the main street in Ontario-a double wide street with a huge grassy divider that is lined with pepper trees} who invites us every year to come down and watch the parade from his porch .It makes it very nice because we have all the comforts of home plus lots of wonderful people to share it with. It was especially nice this year as Dakota was in a wheelchair and unable to maneuver on his own.<o:p></o:p>

Then came September-which is Dakota’s birthday. As usual we made a trek to Disneyland and the Disneyland Hotel and yes it presented new challenges. 5 months had past and Dakota was still unable to walk so we made adjustments and the most of the situation and had a great time!

 

As for Fall it has been relatively quiet and predictable. We had fun at Halloween. I made a very interesting costume for Dakota. It was Professor Quirrell from the first book of Harry Potter-the Prof. is possessed by VoldeMorte-the villain and is revealed underneath the turban the prof. wears. I actually used a clear life like mask that I painted flesh color and attached to a turban and rigged it with battery operated twinkle lights underneath the face. It was pretty awesome!

{He decided he didn’t want to put it on-the jokes on me!!}

Dakota is really interested in the Harry Potter series of books and movies and has blossomed into quite a movie and tv aficionado. His latest interests have focuses on the new movies coming out next summer and the summer of 2007 as well as the most current releases like “the Chronicles of Narnia” and “King Kong”. He even has several websites on his computer that have countdowns for Spiderman 3 arriving May 4 2007 and the new Pirates of the Carribean which will be out July 2006---Its all in the details!

 

Thank God Thanksgiving was rather uneventful. For the first time since Dakota broke his leg he actually visited with his Dad. He has been extremely nervous about venturing out even with his Dad so it was good to see him take “the first step” {haha} When he arrived home I had a very small turkey and all the trimmings for him and he exclaimed:

“Ahh I’m done with Thanksgiving!”  So as we travel this journey of Autism I have learned one very valuable lesson---I can only create the opportunity for Dakota to experience things the way others do in the neuro-typical world ---it’s up to him to decide whether or not he wants to participate.

 

As for Christmas there is a little more than a week left and as usual I am still preparing for the celebration! This is nothing new and quite typical and actually I love it. We just got our tree up---no thanks to Dakota he wouldn’t help me---not surprising and I still have outside lights to finish. Oh yes and of course I have to wrap this up and get it on its way.

 

Well I am really looking forward to saying goodbye to 2005 and

Welcome 2006 in because it has to holds the promise of the unknown.

Good things to come for all of you is my wish from our home to yours and I truly hope you have a Magical Christmas!

With Love

Cindy, Dakota and Leona

 

p.s. I would love to hear from any of you by “snail mail” or email

my email addresses are

 

Ladeisle2@aol.com--primarily family email

Daksopendoor@aol.com – an autism email

Rlntlys@aol.com-- my personal email

 

Love and Joy this holiday season!!!!!!!!!

CHRISTMAS CHIT CHAT

WELL AS USUAL CHRISTAMS IS ONLY A WEEK AWAY AND I AM BEHIND__OH WELL

HAVE LOTS TO REPORT BUT TOO MANY OTHER THINGS THAT NEED MY TIME RIGHT NOW SO WILL FOLLOW UP BEFORE THE MONTH  IS OUT

JUST WANTED TO REPORT ON OUR THURSDAY NIGHT                      I WON TICKETS FROM A LOCAL RADIO SHOW TO ATTEND THEIR CHRISTMAS PARTY AND I TOOK DAKOTA     AND I AM SO INCREDIBILY PROUD OF HIM       WE WAITED IN LINE OVER 2 AND A HALF HOURS AND THE SHOW WAS WELL OVER 5 HOURS LONG AND HE ENDURED ALL THE CHALLENGES OUR KIDSHAVE ISSUES WITH   AND DID IT WITH STYLE.   THIS YOUNG MAN TOLERATED THE NOISES OF A DOWNTOWN LA - - BUSES AND TAXIS HONKING  - PEOPLE RUSHING AROUND  LIGHTS FLASHING AND FLICKERING AND NO BEHAVIOR 

HE WENT INSIDE AND LAUGHED , ENJOYED THE MUSIC AND THE COMEDY SKITS AND EVEN MADE EYE CONTACT WITH A FEW OTHERS AND SPOKE TO THEM!!! WHAT A SUCESS  I RECENTLY SENT AN EMAIL TO ONE OF HIS INSTRUCTORS FROM THE CAL STATE SAN  BERNARDINO UCDD PROGRAM AND TOLD HIM HE HAD A PART IN THIS VICTORY                                     THE BEHAVIOR INTERVENTION AND PROCESSING THAT THEY DO THERE REALLY HAD A DIRECT IMPACT ON OUR            " FIELD TRIP" 

IT DOES GET BETTER AND YOU JUST LEARN HOW TO PREPARE  YOUR CHILD TO EXPERIENCE WHAT OTHER TYPICAL KIDS DO AND MAYBE JUST MAYBE THEY WILL FIND ANOTHER DOOR HAS OPENED FOR THEM!

THIS AND THAT

WELL EVERY TIME I TURN AROUND I THINK I SHOULD ADD TO THEIS JOURNAL AND THEN I GET DISTRACTED USUALLY FROM MY SON - BY THE TIME I GET BACK TO THE JOURNAL THE THOUGHT HAS PASSED OR 15 OTHER THOUGHTS HAVE COME AND GONE  SO I GUESS IT IS MY OWN INABILITY TO MANAGE MY TIME WHICH HAD BEEN A PROBLEM TO KEEP ON THIS JOURNAL AS MUCH AS I WANT TOO!!

GEEEEEEEEES THAT DOESNT SURPRIZE ME

ONE ITEM THAT IS PARTICULARLY PERTENTANT IS THE HOLIDAYS AND HOW OUT KIDS REACT ! A LONG TIME AGO A SUPPORT GROUP I WAS IN DISCUSSED HOW DIFFICULT THE HOLIDAYS ARE WITHOUT KIDS LIKE OURS-- LOTS OF STRESS, NOT ENOUGH TIME, NOT ENOUGH MONEY,SOCIAL OBLIGATIONS ------                                               ADD TO THAT A CHILD THAT ALREADY HAS DIFFICULTY DEALING WITH CHANGE AND SOCIAL ENVIROMENTS AND THINK ABOUT HOW THE STATIC MUST FLARE UP IN THEIR HEADS    EVERYWHERE THEY GO EVEN FAMILIAR PLACES THERE ARE MORE PEOPLE AND STRANGE PEOPLE WHO ARE NOT NORMALLY THERE; BELLS RINGING, LIGHTS FLASHING, MUSIC PLAYING, STRANGE PEOPLE SPEAKING TO YOU  ALL THESE THINGS THAT "BREAK THE RULES " FOR OUR KIDS. ADDED TO THAT IS THE SCHEDULES THAT ARE CHANGED OUT OF SCHOOL FOR 2 WEEKS  HOLIDAY PLAYS AND ROUTINES AT SCHOOL ARE CHANGED RELATIVES COMING INTO THE HOUSE AND TAKING BEDROOMS THAT ARE ASSIGNED TO SOMEONE ELSE                                       WHAT CONFUSION    IS IT ANY WONDER THAT THEY FREAK OUT AT CHRISTMAS TIME?? THE ONLY ADVICE I CAN GIVE IS TO SLOW DOWN AND TRY TO LIVE IN THEIR SHOES --IF YOU BECOME AWARE OF WHAT ESCALATES THEM YOU CAN INTERCEPT IT AND REPLACE IT WITH A PLEASANT EXPERIENCE-- YOU DONT HAVE TO CHANGE YOUR WHOLE ROUTINE BUT SLOWING DOWN AND DOING ONE LESS THING OR TRYING TO DO ON YOUR KIDS SCHEDULE WILL MAKE IT SO MUCH BETTER!FOR BOTH OF YOU.

 

ANOTHER LETTER TO SWITZER LEARNING

GOT ANOTHER INQUIRY AS TO WHY I WAS TRYING TO START A CENTER AND SWITZER LEARNING IN TORRANCE IS STARTING TO FOCUS ON NEEDS OF THE AUTISTIC COMMUNITY . I SENT BACK A REPLY THAT I THOUGHT SHOULD BE INCLUDED IN MY JOURNAL

JUST SOME THOUGHTS AGAIN ABOUT THE NEEDS OF OUR KIDS AND WHAT WE HAVE TO DO:

HELLO WENDY BOY I COULD WRITE A BOOK FIRST OF ALL I WOULD LOVE TO BE A PART OF AN ADVISORY PANEL ANYTHING TO HELP EVEN ONE PARENT OR CARE-GIVER LIVING WITH AUTISM.
AS FOR MY CENTER I WILL FORWARD A BRIEF OUTLINE OF WHAT I AM TRYING TO START BELOW-- THERE IS SUCH A MASSIVE NEED FOR ALL THINGS PERTAINING TO AUTISM AND AN INCREDIBLE VOID IN SERVICES AVAILIBLE-- EVERYTHING IS A STRUGGLE OR A FIGHT WHETHER IT BE THE SCHOOL DISTRICT OR A REGIONAL CENTER  AND I AM SICK OF IT.   MY SON-DAKOTA IS 19 YEARS OLD AND I HAVE HAD TO FIGHT AND FIGHT AND FIGHT FOR EVERYTHING HE HAS RECIEVED--I AM A SINGLE MOM AND I HAVE VIRTUALLY NO OUTSIDE HELP EXCEPT MY 79 YEAROLD MOTHER WHO LIVES WITH ME AND IS BECOMING LESS ANND LESS ABLE TO HELP WITH MY SON --ENOUGH IS ENOUGH. THE MOST IMPOSSIBLE THING IS TRYING TO FIND SERVICES THAT DONT BANKRUPT YOU AND SERVICES YOU CAN TRUST.   WHEN YOU CHILDREN ARE SMALL AFTER YOU HAVE GOTTEN OVER THE INTIAL SCHOCK OF THE DIAGNOSIS YOUR FOCUS IS ACADEMICS BY THE TIME THEY REACH JUNIOR HIGH YOU ARE DEALING WITH PUBERTYAND HERE COMES HIGH SCHOOL BEFORE YOU KNOW IT THEY ARE "GRADUATING" TO GO OUT TO THE COMMUNITY AND DO WHAT???? THE COMMUNITY BASED PROJECTS ARE A JOKE-LIKE HANGING UP HANGERS AT A THRIFT STORE AND THE SCHOOL IS OBVIOUSLY DIVIDED BETWEEN THE "NEURO-TYPICAL KIDS AND THE CHALLENGED ONES  EVEN THE TEACHER DONT SET AN EXAMPLE TO INCLUDE OUR KIDS  AND ONE DAY YOU WAKE UP AND YOU CHILD IS 20  HAD SPENT 17 YEARS IN SCHOOL -HASNT LEARNED MUCH THAT WASNT ACTUALLY TAUGHT IN THE HOME HAS NO FRIENDS AND CANT LIVE ON HIS OWN--   WHEN YOU CHILDREN ARE LITTLE IT IS HARD TO THINK ABOUT THE COMMUNITY BUT IT IS MY CONTENTION THAT IS  THEEEE PRIMARY FOCUS FOR THESE KIDS-- NOT THE REGULAR STUFF BEING TAUGHT NOW BUT "NATURAL SETTING" INSTRUCTION SIMILAR TO WHAT DR.RICK LAVOIE TALKS ABOUT.  YOUR CHILDREN ARE IN SSCHOOL 13 TO 17 YEARS BUT THEY ARE IN THE COMMUNITY FOR DECADES-- THERE IA NO SPECIAL ED TACO BELL -- NO SPECIAL ED LIBRARY -- NO SPECIAL ED ARCO STATION --NO SPECIAL ED STATER BROTHERS WE NEED TO DESENSITIZE THESE KIDS TO THEIR ENVIROMENT AND EDUCATE AND TEACH TOLERANCE TO THE COMMUNITY. OK I AM GETTING OFF MY SOAP BOX FOR NOW--  

REGIONAL CENTERS AND VENDOR

THERE IS A DEBATE ABOUT REGIONAL CENTERS AND THE DIFFERENT VENDORS ON ANOTHER SUPPORT GROUP WEBSITE AND I POSTED THE RESPONSE BELOW

IT HAS BEEN A VERY DIFFICULT SUBJECT BECAUSE ITS LIKE BITING THE HAND THAT FEEDS YOU SO TO SPEAK ON ONE HAND THE REGIONAL CENTER CAN HELP YOU BUT ONCE AGAIN IT IS ANOTHER STRUGGLE TO GET THE SERVICES AND THEN YOU OFTEN FIND THAT WHAT YOU NEED MAY NOT BE VENDORED AND THE CLENCHER IS WHEN YOU FIND ANOTHER REGIONAL CENTER THAT DOEA CARRY THAT VENDOR BUT YOU ARE UNABLE TO GET THAT THRU YOUR REGIONAL CENTER

OK SO HERE IT GOES

once again i find myself having to get into this conversation-- and i
am sorry but i am the "nay-sayer"
Lets face it people it is just like everything else
Inland Regional Center is suppose to be there for our kids and the
families and essential that is their function-- heres the problem
they dont make it any easier then the schools do when it come to
getting services!
I have had a 15 year relationship with this specific regional center
and personally i think they stink! Their focus is more on the bottom
line then it is on servicing the kids and giving services they need!!!
The only reason we have regional centers are because there are kids
like ours -- yet they are so incredibily caught up in watching the
money that they loose sight on their purpose!
I dont mean to be a rag but i have seen it over and over again.
the parental vouchered respite -which I have continued to fight and am
still recieving is just one example
But as for other services you will find that there are other regional
centers who fund and vendor lots of things our Regional Center doesnt >
And as i am finding out even some of their vendors will tell you how
much more difficult Inland Regional Center is in comparison to others.
I was just talking to a big vendor of Inland Regional Center who
absolutely admitted to me that if i was continuing to get my center
for autism started that i would be wise to move just a little west so
I would fall into the covina-baldwin park regional center area because
they would be immensely easier to work with and would fund or vendor
much easier.
As far as getting Inland to fund vendors from other regional centers
you might be sucessful but I guarantee it wont be a cake-walk--you
will have to fight
One more thing Inland Regional Center happens to be the biggest
regional center and has as big if not bigger budget than other centers
as i said they are of the opinion or at least their rethoric is that
the more efficient and focused they are on the bottom line the more
they can recieve -- my issue is they have taken their eye off the ball-
- our kids and there is nothing wrong with being efficient but when
your clients dont benefit whats the point?
Well I aopologize ahead if i have offended anyone
however I do believe that I speak the truth
its really bad when one of their own vendors tell you what a pain they
are to work with.
By the way have any of you asked your worker what their case load is??
get ready folks most of them handle a minimum of 65 -70 client and
more of them are handling over 100 you cant even get someone to help
you with a service much less find one for you.
cindy