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

WHATS HAPPENING WITH "THE FOOT"

THE  TOENAILS HAVE BEEN REMOVED FOR A WEEK NOW  AND I KNOW ITS TOO EARLY TO TELL BUT I AM FINDING MYSELF ANXIOUS TO  SEE IF I PUT DAKOTA THRU A SURGERY FOR NOTHING--------- IT IS SO  INCREDIBILY FRUSTRATING TO HAVE A KID THAT HAS ALREADY GONE THRU SO MUCH AND TO  HAVE HIM SUFFER MORE PAIN AND DISCOMFORT BECAUSE WHAT I PERCEIVE IS SOMEONES ELSES MISTAKE. FROM THE LACK OF SUPERVISION ON THE PART OF THE STAFF , TO  THE MAINTENENCE OF THE BALLFIELD  , TO THE UNBELIEVABLE WAIT IN THE E.R. TO THE CAST NOT BEING APPLIED RIGHT--ALL NOT HIS FAULT 

IT JUST PISSES ME OFF THAT HE HAS TO ENDURE THESE PROBLEMS WHEN HE IS ALREADY DEALING WITH SO MUCH MORE --THE AUTISM!!! SOMETHING  THAT WILL NEVER GO AWAY!  I DONT THINK MOST PEOPLE REALIZE  THAT CHILDREN AND THEIR PARENTS WHO HAVE ANY KIND OF DISABILITY  FIND THAT EVRYDAY FROM THE MOMENT THEY WAKE UP UNTIL THEY LAY THEIR HEAD ON THE PILLOW  TO SLEEP  IT IS  A CONSTANT CHALLENGE THAT DOES NOT GO AWAY. WE ALL ACCEPTED  IT AND GET ON WITH LIFE -AS IT IS-- BUT TO HAVE TO ENDURE OTHER OBSTACLES LIKE ANOTHER  INJURY OR  ILLNESS ON TOP OF THE DISABILITY IS OFTEN TIMES OVERWHELMING. WHEN YOU HAVE TO MAKE DECISIONS THAT CONTINUE TO PUT YOPUR CHILD IN MORE PAIN OR SUFFERING     IT KILLS YOU A LITTLE BIT MORE EVERYTIME.

WELL TO BE CLICHE' I GUESS ONLY TIME WILL TELL BUT  AS IT IS NOW  I WAITING FOR ANY SIGN THAT DECIDING TO  INFLICT MORE PAIN TO MY KID WILL PAY OFF IN THE LONG RUN AND THAT THE TOES HAD TO BE REMOVED AND IT WILL HELP HIM TO WALK BETTER-- BUT HERE WE ARE 6 MONTHS SINCE THE BROKEN LEG AND WE ARE STILL  NOT EVEN CLOSE TO PUTTING THE FINAL CHAPTERS ON THIS INCIDENT.

HAPPY THANKGIVING

 May your plate be filled with all the goodness of the
     holiday offerings- - -
        Your heart be filled with all the joy this season
     can bring - - - 
         And the knowledge that a friend wishes you all the     trimmings for a Happy Thanksgiving

         Cindy

HAVING TROUBLE

SORRY ABOUT THE GAP IN POSTS   THE JOPURANL HAS BEEN HAVING TECH TROUBLE AT AOL

 

ANOTHER GO AROUND WITH DOCTORS

BOY  DO I GET BEHIND--- I KEEP SAYING TO MYSELF  OH I WILL SIT DOWN AND WRITE AND THEN ANOTHER DAY GOES BY

WELL TODAY DAKOTA HAD  2 TOENAILS REMOVED ON THE SAME DAMN FOOT THAT  HE BROKE HIS LEG  THE FRUSTRATING THING IS THAT ALTHOUGHT THER ARE MINOR PROBLEMS WITH THE NAILS  WE MAIN REASON FOR REMOVING THEM IS BECAUSE AFTER 6 MONTHS  DAKOTA IS STILL NOT WALKING RIGHT ON THEAT LEG. HIS "GAIT" IS MESSED UP AND HE SLAPS HIS FOOT  KINDA TO THE SIDE INSTEAD OF TURNING HIS TOES AND LINING THEM UP CORRECTLY WITH THE LEG .  SO THE PODIATRIST AND I DECIDED THAT THE ONLY WAY WE WILL BE ABLE TO KNOW IF THE NAILS ARE CREATING PROBLEMS AND CAUSING HIM NOT TO WALK CORRECTLY IS TO ELIMINATE THEM

ITS ALMOST STUPID BUT NECESSARY  BECAUSE OF THE AUTISM .  DAKOTA HAS A LOT OF LANGUAGE BUT SEEMS TO BE UNABLE TO RESPOND TO THE THERAPY CORRECTLY AND/OR TELL US IF THE NAILS OR  ANYTHING ELSE IS BOTHERING HIM  OR CAUSING HIM NOT TO BE ABLE TO WALK RIGHT AGAIN.  I WOULDNT BE SO UPSET BUT BECAUSE OF THE WAY HES WALKING IT THROWS  HIS  KNEE OUT TO THE SIDE WHICH  IN TURN  CAN CAUSE TROUBLE WITH HIS HIPS AND OF COURSE CAN  GIVE HIM TROUBLE WITH HIS BACK.

HIS DAD HAS CONGENITAL BACK PROBLEMS SO I AM FOREVER TRYING TO WATCH HIM TO SEE IF THERE IS A PROBLEM . COMBINED WITH HIS HIGH TOLERANCE FOR PAIN AND THE FACT HE WONT TELL  US WHEN HES  HURTING  IT IS A CONSTANT BATTLE TO "READ HIM" FOR PAIN.

WELL ITS DONE AND HE DID SO WELL   THE DOCTOR WAS REALLY PLEASE WITH HIM . HE WAS INCREDIBILY BRAVE AND CO OPERATIVE .  I AM SO THANKFUL . SO MANY PARENTS HAVE AUTISTIC CHILDREN THAT WILL NOT ALLOW ANYONE TO TOUCH THEM FOR ANY REASON-  HAIRCUTS ,  MANICURES ,  DENTISTRY , BLOOD TESTS       SO  MY GUY DID EXCELLENT

2 TIPS --- I STARTED EARLY HANDLING HIM WHEN IT CAME TO CLEANING HIS FINGERNAILS AND TOENAILS BEFORE HE COULD DECIDE HE WOULDNT LET ME TOUCH THEM                   I  ALSO STARTED CUTTING HIS HA IRBY PUTTING HIM  IN FRONT OF THE TV  WITH A FAVORITE VIDEO AND TOOK HIM TO THE DENTIST AND FLOBBOTOMIST EARLY TO DESENSITISE HIM    WHICH HELPS IMMENSELY

THE THE 2ND TIP AND MOST IMPORTANTLY WAS I WENT EQUIPPED WITH A LITTLE PORTABLE DVD PLAYER  CHARGED UP AND READY TO PLAY THE MOST RECENTLY RELEASE MOVIE THAT HE HAS BEEN ASKING FOR    AS SOON AS I GOT HIM ON THE TABLE THE DVD PLAYER CAME OUT AND WAS PUT ON HIS CHEST WITH "CHARLEY AND THE CHOCOLATE FACTORY" BLAIRNG AWAY   IT BLOCKED OUT WHAT THE DOCTOR AND NURSES WERE TALK ABOUT AND IT ALSO BLOCKED HIS LINE OF SIGHT DURING THE PROCEDURE

BEST INVESTMENT I HAVE MADE IN A LONG TIME!!!!!
WEL BETTER GO CHECK ON MY PATIENT!!     

HALLOWEEN

WHERE DO I BEGIN?   I HAVE COME TO THE CONCLUSION THAT I CAN ONLY OFFER THE OPPORTUNITY FOR DAKOTA AND IT HAS TO BE UP TO HIM TO TAKE IT.

I SPENT QUITE A BIT OF TIME DECORATING THE HOUSE AND AFTER A COUPLE OF YEARS DAKOTA FINALLY CONCEDED TO BEING PROFESSOR QUIRRELL FROM THE FIRST HARRY POTTER BOOK . FOR THOSE OF YOU WHO ARE NOT POTTER FANS PROFESSOR QUIRRELL WAS A MOUSEY COWERING CHARACTER THAT TAUGHT THE "DEFENSE OF THE DARK ARTS'. IT IS REVEALED THRU THE FIRST BOOK THAT VOLDEMORT {THE ARCH VILLIAN OF HARRY } HAS POSSESSED QUIRRELL'S BODY AND AT THE VERY END OF THE BOOK THE STRANGE TURBAN THAT PROFESSOR QUIRRELL IS WEARING IS REMOVED TO  EXPOSE VOLDEMORT ON THE BACK OF HIS HEAD CREEPY-HUH?  I CON-COCKTED A COSTUME MADE FROM SCRATCH WITH ALL THE BUTTONS AND BELLS INCLUDING A MASK WHICH I PAINTED FLESH  COLOR AND RIGGED BATTERY OPERATED LIGHTS UNDERNEATH IT ON THE BACK OF A TURBAN THAT DAKOTA WAS TO WEAR ON HIS HEAD-- IT WAS ONE OF THE COOLEST COSTUMES I HAVE EVER CREATED AND JUST GUESS WHAT HAPPENED???

KEEP GUESSING??? NO THATS NOT IT- - - - - - -                           YEP THATS RIGHT HE REFUSED TO DRESS - - - PERIOD! HE WOULD NOT EVEN COME NEAR THE COSTUME  IT WAS THE STRANGEST THING IT WAS AS IF HE WAS CONFLICTED  LIKE HE WANTED TO BUT HE KEPT SAYING "I JUST WONT TRICK OT TREAT ANYMORE""I AM DONE WITH IT ALL" I AMAZED MYSELF I KEPT MY COOL AND JUST TOLD HIM THAT IT WAS HIS DECISION AND HE HAD TO DO WHAT HE WANTED TO DO     I ANALYZED AND ANALYZED AND CAME UP WITH SEVERAL REASONS HE BAILED BUT THE END RESULT IS WHAT I SAID AT THE BEGINNING

I CAN ONLY OFFER THE OPPORTUNITY AND HE HAS TO DECIDE!!

 

BEST LAID PLANS

TODAY WAS SUPPOSED TO BE THE DAY THAT I TOOK DAKOTA TO HIS FIRST "SERVICE" MY INCLE HAD PASSED AWAY QUITE SOME TIME AGO BUT HE WAS GOING TO BE INTERRED AT THE NATIONAL CEMETARY AND HE ACTUALLY SEEMED INTERESTED IN THE WHOLE PROCESS .

I HAVE ALWAYS SAID THAT IF THEY ARE  OLD ENUF TO ASK THE QUESTION THEN THEY ARE READY FOR THE ANSWER

SO I MARKED IT ON THE CALANDER AND STARTED THE PROCESS OF TALKING ABOUT GOING . WE ALSO DISCUSSED IT WITH THE TEACHER AND AIDE  TO PREPARE DAKOTA FOR A  NEW EXPERIENCE--

THE DAY COMES AND HE SLEEPS IN JUST ABOUT THE TIME I  WAKE HIM  I REALIZE HE IS ALREADY AWAKE AND COMES OUT TO TELL ME THAT HE WANTS TO GO TO SCHOOL!!!! I WAS  SHOCKED AND OF COURSE SHOOK UP CUZ  ALL OF A SUDDEN  MY WHOLE DAY MY WHOLE PLAN WENT UP IN SMOKE.

JUST ANOTHER DAY IN THE LIFE OF  "LIVING WITH AUTISM" SHIFT GEARS AND GET ON WITH IT!  SO I HAD TO HUSSLE AND GET HIM OFF TO SCHOOL WHICH LEFT ME ABOUT A HALF AN HOUR TO GET READY FOR THE SERVICE  IN A NUT SHELL IT DROVE ME CRAZY  I GOT A LITTLE HUFFED UP BUT ONCE I TOOK A DEEP  BREATH  AND REALIZEDTHAT THERE  WAS SO MUCH MORE TO BE THANKFUL FOR   IT GAVE ME A DIFFERENT PERSPECTIVE AND ONCE AGIN TAUGHT ME THAT EVEN THE BEST LAID PLANS CAN GO DOWN  WHEN YOU LIVE WITH AUTISM---

ITS JUST A PART OF LIFE

THE CENTER

THE CENTER

FOR ANY ON LOOKERS WHO MIGHT WANT TO KNOW ABOUT THE CENTER THERE IS AN ENTRY ON 3-24 WHICH OUTLINES THE IDEA OF THE CENTER

I HAVE EXPANDED ON THE IDEA SINCE BUT HAVE NOT PUBLISHED IT AS OF YET BECAUSE IT CONTINUES TO BE A WORK IN PROGRESS AND I HAVE MORE TO COMPLETE

PLEASE FEEL FREE TO WRITE FOR ANY INFO YOU MIGHT WANT DAKSOPENDOOR@AOL.COM

 

THOUGHTS AFTER THE MEETING

KINDA HIT A WALL YESTERDAY BECAUSE THE GENERAL PROGNOSIS THAT I GOT FROM MORE THAN ONE EXPERT WAS THAT I WILL HAVE GREAT DIFFICULTY FINDING FUNDING FOR THIS BECAUSE IT IS TOOALL-INCLUSIVE.  THAT CERTAIN SOURCES WOULD FUND CERTAIN THINGS BUT NOT OTHERS AND THAT I NEED TO GO TO AREA 12 AND START PRESSURING THEM TO ADVOCATE FOR THIS  BECAUSE THERE IS NOTHING OUT THERE FOR THESE KIDS THAT ARE TRANSITIONING FROM HIGH SCHOOL -- MY BIGGEST PROBLEM  ;  THE REALITY IS THE "BIGNESS" OF THE CENTER AND THE FACT THAT I WANT TO DO SO MANY DIFFERENT THINGS  WILL PROBABLY BE THE REASON I HAVE DIFFICULTY FUNDING IT---ITS SO STUPID BECAUSE AS A PARENT  OR EVEN A PROFESSIONAL  LOOKING FOR  SERVICES FIND THEY ARE SO FRAGMENTED ;  THERE IS NO CONTINUITY OR COMMON THREAD. I WANT THIS CENTER TO PROVIDE THAT --THE ONLY WAY IT CAN BE THAT ; IS FOR IT TO BE AS INCLUSIVE  AS I HAVE DESIGNED--- ITS A CATCH 22 ONE OF THE OTHER PROBLEMS THAT BOTHERS ME IS THAT I DONT WANT TO CHALLENGE THE STATE OR ANY OTHER AGENCY TO PROVDE THIS BECAUSE IT WILL BECOME SOMETHING TOTALLY DIFFERENT IN THE END. THE CENTER IN ITS PUREST FORM IS ONLY GOING TO BE EFFECTIVE IF IT IS PRIVATE ENDEAVOR ..   LETTING A STATE AGENCY BE INVOLVED IN ANYMORE THAN FUNDING MEANS WE HAVE TO DO THINGS BECAUSE THE OF A STATE MANDATE . OR WE ARE RESTRICTED FROM DOING THINGS BECAUSE OF THE STATE'S INVOLVEMENT . I KNOW I WANT MY CAKE AND EAT IT TOO THE STATES MONEY BUT NOT THEIR SAY-SO I SOUND LIKE A TEENAGER LIVING AT HOME WHO WANTS FREEDOM AND ALL THE LUXURIES OF HOME BUT DOESNT WANT TO LISTEN OR DO WHAT MOM AND DAD WANT!!! I CAN FEEL THIS CENTER IN MY BONES AND I KNOW THERE IS A NEED FOR IT JUST THE WAY IT IS IN MY HEAD AND WHAT I HAVE ON PAPER BUT I AM NOT SURE IT WILL EVER COME TO FRUITITION   WHAT I THINK IS THAT I DONT WANT THE PARENTS TO BE BURDENED WITH PAYING FOR MOST OF THE SERVICES  THE CENTER PROVIDES  .  SO; THAT JUST ABOUT ELIMINATES CREATING IT AS A  PROFIT MAKING BUSINESS  BUT IT SEEMS TO BE THE ONLY WAY I CAN MAKE IT WHAT IT SHOULD BE----- THE OTHER SIDE OF THAT COIN IS THAT  MOST OF THESE PARENTS HAVE BEEN PULLED IN EVERY DIRECTION WITH SO MANY "CURES AND STRATEGIES " POTIONS AND  PILLS" AND I SEE IT EVERYDAY IN THE ON-LINE SUPPORT GROUPS THE DOUBT THAT ERUPTS IN THE PARENTS : THAT PEOPLE ARE ONLY IN IT FOR THE MONEY  ; THAT WE ARE EASY TARGETS BECAUSE WE ARE SO DESPERATE TO FIND A "CURE". MOST OF THESE PARENTS AND CARE GIVERS  ARE WORKING AN EXTRA JOB OR HAVE TAKEN A JOB THAT IS FROM HELL BECAUSE IT HAS SOME BENEFIT FOR THEIR CHILD .EITHER BY WAY OF ACTUAL BENEFITS OR THE HOURS ACCOMODATE THE CARE OF THEIR CHILD--- THEY ARE TIRED , WEARY, FRUSTRATED, FED-UP, CONFUSED YET THEY TRUDGE ON FOR THE LOVE AND DESIRES THEY HAVE FOR THEIR CHILD  AND THE WHOLE FAMILY.     I CANT TELL YOU HOW MANY TIMES I HAVE READ ABOUT FAMILIES SCRAMBLING TO GET INSURANCE TO PAY FOR A TEST  OR ONE MOM WORKING WITH ANOTHER MOM TO POOL THEIR KNOWLEDGE FOR THE BEST OUTCOME. ONE OF THE MOST RECENT SUBJECTS ON ONE OF THE AUTISM SUPPORT GROUPS IS THE FACT THAT THE DA N   DOCTORS {DEFEAT AUTISM NOW} {ITS A BIO-MEDICAL APPROACH ] CHARGE  A MINIMUM OF $300 AN HOUR  AND ONE MOM EVEN WROTE ABOUT THE FACT THAT IN ORDER TO GET THE LAB RESULTS ON HER CHILD, FROM THE DOCTOR ,  SHE HAD TO CALL IN WITH A CREDIT CARD SO THE DOCTOR COULD CHARGE HER A HALF AN HOUR FOR A PHONE CONSULTATION  -- NOT TO MENTION THE FACT THAT THE MAJORITY OF INSURANCE CARRIERS DO NOT COVER OR RECOGNIZE MOST OF THE THERAPIES  IN THE DAN  PROTOCOL   SO ITS ALL OUT OF POCKET   HOW CAN I SERIOUSLY JUSTIFY CREATING A CENTER WHERE PARENTS HAVE TO PAY? MAYBE I SHOULD CONSIDER MAKING IT LIKE A GYM AND SELL MEMBERSHIPS --   PEOPLE SIGN UP FOR GYMS ALL THE TIME TO MAKE THEIR BODIES  BETTER SO IF I HAVE A CENTER THAT PROVIDES  SERVICES FOR THESE KIDS  A MONTHLY OR YEARLY  STIPEN MAY BE THE WAY TO FUND THIS THING-- ESPECIALLY OF IT COULD BE AFFORDABLE I ONE BIG DRAW BACK I SEE IN THAT IS --I WANTED THE PARENTS AND OTHERS TO BE A BIG PART OF THE CENTER AND VOLUNTEER BECAUSE THEIR KNOWLEDGE AND INPUT IS VALUABLE . PERHAPS THE ":MEMBERSHIP" WOULD INCLUDE A REQUIREMENT OF VOLUNTEER HOURS IN ORDER TO MAKE IT AFFORDABLE FOR FAMILIES??    THIS CRAP HAS BEEN MUDDLING AROUND IN MY HEAD SINCE LAST NIGHT AND I AM SO SURE WE NEED THIS TYPE OF FACILITY --- I AM TIED UP INSIDE MY HEAD HOW TO MAKE IT HAPPEN- WELL THEY DONT CALL ME RELENTLESS FOR NOTHING I WILL NOT GIVE UP  I KNOW THERE HAS TO BE A POINT WHICH I REALIZE IT IS ALL BIGGER THAN ME BUT FOR NOW I AM STILL COMMITTED TO FORGE ON  AND HIT MY HEAD AGAINST THE WALL A FEW HUNDRED MORE TIMES BEFORE I EVEN CONSIDER TO GIVING UP THE SHIP.   I GOT SO CARIED AWAY BUT I JUST HAD TO UNLOAD  .  I AM SO INCREDIBILY FRUSTRATED BECAUSE I HAVE SEEN HOW MUCH I HAVE FOUGHT FOR DAKOTA AND HOW LITTLE I ACHIEVED .  HE AND MANY OTHERS HAVE SO MUCH POTENTIAL AND THEY ARE WRITTEN OFF ,  IGNORED, DISCRIMINATED AGAINST,SHUNNED ,AND WORST OF ALL NO ONE HAS THE TIME, ENERGY OR INFORMATION TO MAKE IT EASY TO HELP THESE KIDS--- THAT WHY I WANT SO MUCH FOR THIS CENTER TO WORK    

A Letter-To Someone Interested in the Center

I wanted to make an effort to sit down an write you an email to let you know what I am trying to accomplish by trying to start this center I have been sending out information on----  You have sent me one email indicating that you were interested in meeting  and you wanted to share with me the project at the station as well as see if this center may fit in somehow. I don't know if you were able to see the Nightline show {ABC @11:35 p.m.}  on Friday night but it was exactly what I am trying to capture in this Center.  It  specifically talks about the growing numbers of children who are becoming "adults" and there is no place for them to go, no place for them to be included, no one to guide them.Of course the narrator  spoke of personal family afflicted with autism and also talked about the growing statistics and the fact that there is no plan for these kids  Plain and simple something has got to be done and I hope that I can be a part of that solution.   As a parent of an emerging  adult  with autism it was always my focus on health issues , academic and social opportunities with in the school setting and when your kids are small you are so entangled with those things that it becomes overwhelming to consider the "bigger picture"--I dont think I need to tell you that as I know you have your own personal  struggles and experiences  What I have found is that the services and placements for our kids as they grow is fragmented and often not appropriate. I dont pretend to say that my guy is better off than others with challenging disabilities but what separates him from some of the others is that he has the ability to get his  foot in the door many places that kids with physical disabilities wont . His social skills and behavior are the major things that mask his otherwise normal IQ    So that all being said I am on a bandwagon to do something about it! Somehow I went all thru school fighting for Dakota and always feeling that I would get 2 steps forward and somehow fall 1 and 1/2 steps back through the process-- now I think I have the ability to rally the troops for something I think is on the cutting edge of Autism in the future-- A place that services anyone with a need--I want to fashion it like the IEP- what the individual needs of the client or family or professional needs. If the family only wants support groups fine  if an individual needs social; recreation or training in some area   OK  or if a professional needs to observe or to have some one do  "in service" for them i want this Center  to be there for what ever the need.   I have been told its extremely ambitious  I know that  I also know there is a need and there are parents and others who can and will support this project So I press on --with or without the blessing of traditional  support       I have a plan in my head and its screaming to come out and I welcome anyone who is interested and anyone who can help I will be happy to forward any info you might want I would love to have your support and involvement. Currently I have 4 different professors from 4 different colleges , several people who have businesses which assist kids with Autism and a pretty good base of parents who have met  once and are getting involved. I am looking for possible locations and I have a meeting Monday to speak to an attorney about the non profit  status.

More About the Center

I am so determined that this place has a purpose for so many I just cant see it not happening ! The biggest problems to date are my apprehension that parents don't get it  and don't realize that its a place for them as much as a place for their family. It will only flourish if others have a commitment to be involved  and make it what they want-- speaking as one who has been thru where others are at having little ones , it is hard to see passed the school years because it seems like a lifetime away  but trust me even with the struggles it happens way too fast and then they will find out that there is no place to go and what is out there is not appropriate-- Did anyone watch the "Nightline" Program Friday??{October 7,2005 on ABC @11:35 pm} it was called a Place in the World and it was about Autism and the growing numbers who are becoming adults and there is no place for them.The parents are working frantically to do similar things that I have in mind but you can see the worry on their faces---  The biggest fear is what will my child do once I am gone? It is not something you want to think about-- because in reality you can even have a plan but it doesn't guarantee that will happen. I have met so many parents that express their inner most thoughts about even hoping that their child passes before them because then they know that they wont be in the world without someone to help them , I know that sounds awful but it is unfortunately true. No one knows if the people we leave behind will "belly up to the bar" and take on the responsibility we have left for them even in the greatest plan with siblings and extended family things go wrong and sometimes human nature doesn't always do what it is suppose to do  Sooooooooooo I am getting morbid  Sorry   I have just heard too many stories We just have to get this Center going for so many reasons-- hopefully it will sustain many long after I am gone .I hope that some of the kids will be able to be a part of running it too! Maybe one day establish a Living Strategy or even getting back to the "old hippie days" of commune living  done the right way!!!!   People need to see the purpose and passion behind this center  I its just not a Center it has to be an Oasis-- maybe that would be a good name for it!!!!!Hmmmmmmmmmmm Oasis sounds really good

SIGNING AN IEP

HERE IS A SENARIO OF ONE  FAMILY WHOS HAVING TROUBLE AND MY REPLY TO HELP THEM UNDERSTAND THEIR OWN POWER THROUGH THE IEP{INDIVIDUAL EDUCATION PLAN}

Here is the info I received from her:    His 3rd b-day is Oct 10. Our IEP was Oct 6 and we didn't receive their assessments until Oct 5.  In addition, they are starting a new special ed class at Village View and want to put him in there. We have had no opportunity to see the other SDC classes available so we just want to be able to continue services for a few weeks until we have all the info. For that we need a lawyer to place a "stay put". 
 Does anyone have an attorney they would recommend?     question????DID YOU SIGN THE IEP??? IF NOT YOU ARE AUTOMATICALLY IN A STAY PUT MODE  NO LAWYER NEEDED FOR THAT ALSO IF YOU CHOOSE YOU CAN WRITE A LETTER AND DELIVER IT TO THE DISTRICT ON MONDAY ASKING FOR AN EMERGENCY IEP THEY HAVE I BELIEVE 15 TO 30 DAYS TO RECONVIEN AND ONCE AGAIN YOU ARE INAN AUTOMATIC STAY PUT SITUATION!!! CALL THE IEP ON THE BASIS OF LEAST RESTRICTIVE ENVIROMENT AND BEING ABLE TO VISIT AND ASSESS PLACEMENT THE DISTRICT SHOULD EXPITE YOU VISITNG ALTERNATIVE PLACEMENTS! I HOPE THAT HELPS!!!    ADDITIONAL INFO I PROVIDED FOR OTHERS ON OUR SUPPORT GROUP ABOUT NOT SIGNING THE IEP AT THE MEETING:     ONE MORE THING SOMETHING I LEARNED A LONG TIME AGO WAS NEVER AND I MEAN NEVER SIGN THE IEP AT THE MEETING--ITS OK TO SAY YOU ATTENDED THE MEETING BUT TAKE THE PAPERS HOME SET THEM ASIDE UNTIL EVERYONE IS ASLEEP OR YOU HAVE QUIET TIME EVEN IF IT IS IN THE BATHROOM AND REALLY LOOK THEM OVER MAKE SURE ALL THE GENERAL INFO IS RIGHT INCLUDING ADDRESSES AND OTHER STUFF AND READ EVERY WORD ESPECIALLY THE D I S { DESIGNATION INSTRUCTIONAL SERVICES AND THE NARRATIVE PAGE AND MAKE SURE THE WORDING IS HOW YOU WANT IT AND THERE ARE NO DOUBLE MEANING TO THE WAY SOMETHING IS READ   BE PICKY AND MAKE THEM RE CRAFT THE WORDING IF YOU DONT LIKE IT --- IT CAN BE DONE WITHOUT RECONVIENING I WOULD USUALLY MEET WITH THE HEAD DISTRICT PERSON IN HER OFFICE AND WE WOULD REWRITE WHATEVER NEEDES WORDSMITHING....... OK I HOPE THAT HELPS   SO JUST AN EXAMPLE OF ONE FAMILY WITH ONE PROBLEM THAT CAME THRU MY EMAIL TODAY MULTIPLY THAT BY ABOUT A MILLION AND THATS HOW MANY PEOPLE WHO ARE HAVING STRUGGLES WITH SCHOOLS AND SERVICES THAT WE HAVE TO FIGHT FOR    NOT PARTNER WITH   BUT FIGHT FOR IT SHOULFNT BE THAT WAY!!!!!!!

BOY AM I BEHIND

WELL ITS BEEN  ABOUT 3 WEEKS SINCE WE GOT BACK FROM DISNEYLAND AND I AM NOW JUST GETTING INTO THE GROOVE OF THINGS---

MY FOCUS RIGHT NOW IS DAKOTAS FOOT AND LEG AND ALL THAT GOES WITH IT   HIS IEP WHICH I JUST HAD LAST WEEK AND TRYING TO CONTINUE TO PUT THIS CENTER TOGETHER--        I AM BECOMING MORE AND MORE ENCOURAGED AS I CONTINUE THIS QUEST AS I AM FINALY STARTING TO MAKE CONTACT WITH PEOPLE THAT CAN HELP ME MAKE THIS HAPPEN

I WILL BE WORKING ON A MORE INTENSE  AND IN DEPTH PLAN FOR THE CENTER ON WORD AND WHEN I GET IT DOWN TO A FILE I WILL POST IT ON THIS SITE.

I PLAN TO REALLY BUCKLE DOWN AND BE MORE TIMELY  WITH THE JOURNAL  NOT OLY TO HELP ME WITH MY SANITY BUT ALSO BACUASE OTHERS  ARE  NOW  STARTING TO READ IT AND RESPOND TO ME . IT IS FINALLY STARTEDING TO BE WHAT I INTENDED FROM THESTART WHICH IF TO CREATE A NETWORK AND A FORUM .

BEHIND --I AM   BUT NOT FOR LONG!!!!! 

BUILD IT AND THEY WILL COME

HELLO
At our last meeting one of the parents suggested that we name our center "Field of Dreams" on the premise--IF YOU BUILD IT THEY WILL COME

I am smart enough to know that we will not always  be lucky enough to accomodate every person all the time but that is what the intent of this center is and it will be with the input of parents and others who live with Autism everyday to create what they want with this center---

Sooooooooooo  for those of you who are not attendeing the TACA meeting
I invite you to come to Dr. Stanley Swartz's office
                        206 East State Street
                        Redlands, California
                      
                        OCTOBER 15 TH @ 2:PM
                        SATURDAY
To continue discussion on getting this Center started---
we will continue to discuss needs and wants of the families as well as establishing a non profit organization  and continuing to look for a permenent location.
please RSVP to daksopendoor@aol.com
we have room for about 75  so it would be nice to have an idea of those who can come
for right now
I dont have info about accomodations for children
I will post more as info becomes available----
thank you
cindy

NOW IT'S 420 AM!!!!!!

BELOW  FIND ATTACHED WHAT I AM HAVING INCORPORATED INTO DAKS IEP IN THE D.I.S.--DESIGNATED INSTRUCTIONAL SERVICES---

ALL PARENTS HAVE THE WRITE TO ADD OR WRITE WHATEVER THEY WANT IN AN IEP FOR THEIR CHILD  IT IS ABSOLUTELY IMPARATIVE THAT YOU TAKE A PROACTIVE ROLE IN THE PLACEMENT AND SERVICES YOUR CHILD NEED TO BE AS EQUAL AS POSSIBLE TO THE TOTHER CHILDREN IN SCHOOL

REMEBER FAIR --IS NOT NECESSARILY EQUAL!!

DAKOTAS I.E.P.                       SEPTEMBER  23  2005

I WANT TO MAP OUT A CLEAR INTENTION FOR DAKOTAS YEAR {SCHOOL YEAR 2005 TO 2006}
I WANT TO SAY FOR THE MOST PART OUR EXPERIENCE WITH DAVID DUTCHERS CLASS HAS BEEN VERY POSITIVE AND WANT TO CONTINUE TO PARTNER WITH THE CLASS AND SCHOOL TO GIVE DAKOTA THE OPTIMUM OUTCOME.

I HAVE OBSERVED A FEW THINGS THAT FEEL "OFF" TO ME AND BEING THE PERSON I AM IT IS IMPORTANT THAT I ACKNOWLEDGE THEM AND ASK FOR HELP TO CORRECT THEM.
MOST OF THESE HAVE TO DO WITH THE UTILIZATION OF DAKOTAS ONE ON ONE AIDE AND I WANT CLARITY, DISCUSSION AND REMEDY -PLEASE
1.  BECAUSE I TRANSPORT DAKOTA EVERY DAY TO SCHOOL I HAVE OCCASION TO OBSERVE SOME OF THE DYNAMICS OF THE CLASS ON AN ONGOING BASIS--- AND I HAVE ON SEVERAL OCCASIONS NOTICED THAT DAKOTAS AIDE HAS BEEN ENGAGED IN OTHER ACTIVITY FOR THE CLASSROOM  LEAVING DAKOTA IDLE AT HIS DESK --- THIS IS NOT ACCEPTABLE TO ME
I HAVE NO PROBLEM WITH THE AIDE BEING A PART OF THE CLASSROOM AND ASSISTING WITH OTHERS KIDS OR HELPING THE OTHER ADULTS THROUGHOUT THE SCHOOL DAY HOWEVER I CANNOT DRIVE HOME HARD ENOUGH THAT THE AIDES NUMBER ONE PRIORITY IS DAKOTA AND HIS NEEDS   FIRST. {I WILL FURTHER DISCUSS AND INNUMERATE THE INCIDENCES WITHIN THE DISCUSSION OF THE IEP}
2.   THIS IS A HARD ONE FOR ME BUT I FEEL DAKOTA NEEDS TO BE CHALLENGED MORE ---SPECIFICALLY  I HAVE ELECTED TO NOT PUSH DAKOTA  MUCH WHEN IT COMES TO MAINSTREAMING BECAUSE I HAVE AN INNER STRUGGLE WITH  MAKING HIM DO SOMETHING BECAUSE I WANT HIM TO  OR  DOING SOMETHING BECAUES IT IS HIS DESIRE AND I BELIEVE IT IS THE GENERAL CONSENSOUS THAT BY NOT PUSHING DAKOTA IT MAKES FOR A MORE CALM ATMOSPHERE BUT I CANT HELP BUT BELIEVE THAT ONE OF THE PURPOSES OF SCHOOL IS TO STRETCH OUR KIDS AND HAVE THEM ADAPT TO TRANSITION SO FOR THIS YEAR I WANT HIM EXTENDED TO A FULL DAY
POTENTIALLY WHAT I SEE IS AFTER LUNCH DAKOTA ATTENDING 5 TH WITH RAUL GONZALES AND 6TH WITH LIZ THOMAS-NOT ONLY DOES THIS SOMEWHAT ACCOMDATE DAKOTA GETTING THE BEST FROM DAVID BEFORE LUNCH BUT ALLOWS MAINSTREAMING WITH A FLOW AND MEANING AFTER LUNCH-AS I HAVE OBSERVED THAT OTHER THAN APE ON MONDAYS AND WEDNESDAYS THE TIME BETWEEN LUNCH AND THE ARRIVALS OF THE BUSES IS OFTEN TIME LOST. THE KIDS END LUNCH AT 12:30 OR 12:35 AND THEW BUSES START ARRIVING AT 1:15  ALTHOUGH SCHOOL IS SUPPOSED TO BE UNTIL 1:45 THAT 30 TO 50 MINUTES IS PRIMARILY SPENT PREPARING FOR HOME.
3.  I WANT ALL OPPORTUNITIES FOR MAINSTREAMING EXPLORED THIS MEANS NOT ONLY OPPORTUNITIES FOR ASSEMBLIES AND OTHER ACTIVITES THE GENERAL POPULATION PARTICIPATES IN BUT ALSO THERE ARE SPECIFIC STRATEGIES I WANT TRIED:
THE FIRST BEING SEPARATED FROM THE CLASS WITH HIS AIDE AT LUNCHTIME INTERMITTENLY TO OPEN UP THE POSSIBILITY FOR DAKOTA TO MEET OR AT LEAST BE A PART OF THE NUERO-TYPICAL POPULATION
ALSO A COUPLE OF TIMES A WEEK I WANT HIM TO GO TO THE ACTIVITIES OFFICE AND GET THE ANNOUNCEMENTS, READ THEM AND BRING THEM HOME SO WE HAVE THE ABILITY TO WATCH FOR OPPORTUNITIES TO MAINSTREAM-LIKE PLAYS OR CONCERTS OR EVEN THE FOOD FAIR ETC.
ANOTHER STRATEGY IS A TRIP TO THE SCHOOL LIBRARY PERHAPS ON A SPECIFIC DAY OF THE MONTH
AND ONE LAST ONE IS ONCE AGAIN HAVING DAKOTA GO OFF CAMPUS TO THE ADJACENT BUSINESSES LIKE THE STATER BROTHERS WITH A SHORT LIST OF ITEMS TO SHOP FOR SENT FROM HOME.

LASTLY I WANT TO AGAIN VOICE MY CONCERN ABOUT THE SIMPLE FACT THAT DAKOTA TECHNICALLY HAS 3 MORE YEARS HE COULD ATTEND HIGH SCHOOL BUT THE QUESTION BECOMES APPROPRIATE PLACEMENT-MY QUESTION IS WHERE ARE TRANSITIONAL SERVICES??? HOW CAN PARENTS AND YOUNG ADULTS MOVE ON OR MOVE OUT OF THIS PLACEMENT IF THE SCHOOLS ARE DRAGGING THEIR HEELS ON ALTERNATIVE PLACEMENTS?? IS IT RIGHT OR APPROPRIATE THAT A 20 YEAR BOY BE SITTING IN A CLASSROOM WITH A 13 OR 14 YEAR OLD GIRL??? NO MATTER WHAT THE CHALLENGES?
WE NEED AND MUST HAVE  NOW SOME SOLUTIONS AND OPTIONS BECAUSE ALL PARENTS CAN CONTINUE TO KEEP THEIR CHILDREN IN WHAT THEY CONSIDER TO BE THE  LEAST OF ALL EVIL WHEN THERE IS NOTHING OUT THERE BUT THE DISTRICTS ARE STILL RESPOSIBLE TO PROVIDE FOR THESE KIDS TILL 22 IS IT ANY WONDER WHY THIS CLASS CONTINUESTO OVERFLOW{WHICH IS ANOTHER CONCERN I HAVE}  BNECAUSE NO ONE HAS GOTTEN THEIR STUFF TOGETHER AND REALIZED THAT ALL THESE KIDS GROW UP AND THEY NEED TO BE VERY SLOWLY EASED IN TO THE COMMUNITY AND IT IS ALL OF OUR JOBS TO DO SO
WE HAVE TO HAVE A UNITED FRONT AND CAUSE
SO THESE KIDS DON'T BECOME STATISTICS
AND THAT DOESN'T MEAN FOLDIND BOXES OR HANGING UP HANGERS
IT MEANS FINDING EACH OF THEIR NICHES AND APPLYING IT TO A WORTHWHILE PATH FOR THESE KIDS

ADDITIONALLY I WANT TO THANK ALL OF YOU FOR LISTENING AND FOR ANY INPUT OR ASSISTANCE YOU CAN PROVIDE TO INCORPORATE THE ABOVE REQUESTS

WOKE UP CANT SLEEP

YOU WOULD THINK BY NOW THAT I.E.P.'S WOULD BE NO BIG THING BUT I FIND MY SELF  DREADING ANOTHER  ONE-- HERE IT IS  3 AM  AND I   HAVE TO BE  AT SCHOOL BY 10--YIKES

AM GEARING TOWARDS MORE SOCIAL MAINSTREAMING FOR DAKOTA THIS YEAR AND BACK ON TRACK WITH AN EXTENDED SCHOOL DAY--- I KNOW HE DOESNT HAVE MUCH MORE TIME IN TRADITIONAL SCHOOL BUT I AM ADAMANT THAT IT BE PRODUCTIVE TIME AND FRUSTRATED BECAUSE ONCE AGAIN IT SEEMS THAT IT IS ALWAYS AN UPHILL BATTLE TO GET SOMEONE TO LISTEN TO YOU  AND ACTUALLY  ACT ON YOU REQUESTS FOR YOUR CHILD

FOR ANYONE WHO HAS NUERO-TYPICAL CHILDREN  THEY JUST DONT NOW THE INCREDIBLE FRUSTRATION IT IS  TO HAVE A CHILD  BE RECOGNIZED FOR WHATEVER ABILITY HE OR SHE MIGHT POSSESS AND TO TRAPPED IN THEIR OWN WORLD WITHOUT GETTING THE NECESSARY SUPPORT, DIRECTION, ENCOURAGEMENT AND  EDUCATION  THEY NEED TO BE A CONTRIBUTOR TO THEIT OWN LIFE AND TO THEIR COMMUNITY.

I WILL POST MORE LATER ON THE OUTCOME OF THE I.E.P. FOR NOW I HAVE TO HIT THE MIRCOSOFT WORD  TO LAY OUT THE PLAN--WISH ME LUCK!!!!!

BEEN ON VACATION

HELLO TO ANY AND ALL THAT PEEK AT MY RANTINGS

BEEN ON VACATION AND HAD A BIRTHDAY TO CELEBRATE SO HAVE BEEN OUT OF THE LOOP FOR A COUPLE OF WEEKS

HAVE SEVERAL THINGS TO ADD WILL SIT DOWN THIS WEEK AND CATCH UP!!!!!!!

GODS LITTLE TRICK ON ME!!!

RIGHT NOW I AM ABOUT HALF CRAZY OVER THIS BROKEN LEG WHICH HAS TURNED INTO MUCH MORE .  THE FUNNY THING ABOUT THAT IS ; I THINK ITS A LESSON  GOD  IS TRYING TO TEACH ME CUZ I USED TO SAY ""YOU KNOW WHEN A KID GETS A BROKEN LEG THEY SET IT AND IN 6 TO 8 WEEKS THE CAST COMES  OFF AND THEY ARE GOOD TO GO   BUT WHEN A KID  HAS A BROKEN HEAD {FOR LACK OF A BETTER COMPARISON} ITS NOT LIKE YOU CAN FIX IT WITH A CAST SO NOW I AM FINDING OUT THAT SOMETIMES  EVEN SIMPLE INJURIES CAN BECOME MORE AND I AM HAVING TO EAT MY WORDS AND LEARN A VALUABLE  LESSON .  IT DOESNT HAVE TO BE A CHRONIC  IN CURABLE THING TO MAKE YOU CRAZY AND WRYTHE  IN PAIN FOR YOUR CHILD .  SOMETIMES  THE SIMPLEST THINGS JUST CANT BE FIXED SO WE HAVE TO LIVE TO ACCEPT THEM AND DO THE BEST WE CAN!!!

LETTER TO A MOM

I JUST GOT AN EMAIL FROM A MOM WHO ASKED ME ABOUT DIFFERENT THERAPIES --IF I HAD DOEN THEM OR NOT AND HERE WAS MY RESPONSE:

IN DIRECT RESPONSE TO YOUR QUESTION ABOUT THE THERAPIES I HAVE NOT DONE THEM SPECIFIC TO DAN PROTOCOL-- PLEASE REMEMBER WE ENTERED INTO THIS 18 YEARS AGO SO INFORMATION THAT THAT POINT WAS VERY DIVERSE TO SAY THE LEAST HOWEVER WITHOUT BEING A NAY-SAYER I AM REALLY NOT CONINCED THAT THE DE-TOXIFICATION; CHELATION; GFCF IS ""THEEEE ANSWER"" JUST AS I AM NOT TOTALLY CONVINCED THE THE MERCURY IS ""THEEE CAUSE""   HERES WHAT I THINK  OUR KIDS MAY HAVE EXPOSURE AND POSSIBLY HIGHER CONTENETS OF BAD THINGS THAT DOES CONTRIBUTE TO THEIR CONDITION AND BEHAVIOR AND I AM QUITE SURE THAT THOSE WHO DILIGENTLY FOLLOW THE DAN PROTOCOL ARE SURE IT WORKS -- FOR THE MOST PART BUT I GUARANTEE YOU THAT FOR EVERY ONE WHO HAS HAD A SUCESS  STORY I WILL BET THERE IS ONE WHO DIDNT SEE THE SAME RESULTS WHAT I DO KNOW IS THAT WE CONTINUE TO TRY TO PINPOINT THE CAUSE OF AUTISM BUT NO ONE -- AND I MEAN NO ONE AT THIS POINT HAS A ROCK SOLID ANSWER SO WE MUDDLE THRU AND DO WHAT WE FEEL WORKS FOR US AND TO BOW DOWN AND PRAY TO THE ""DAN ""GODS  OR ANY OTHER ONES AT THIS POINT STILL PRESENTS THE POSSIBILITY OF IT NOT WORKING ON YOUR CHILD-- THAT IS WHY I KEEP TRYING TO IMPRESS ON THOSE I MEET THAT IT IS STILL THE QUALITY OF LIFE FOR OUR KIDS .  IN ORDER TO DELIVER THAT YOU HAVE TO SPEND TIME -- LOTS OF IT WATCHING OBSERVING LISTENING EXPERIMENTING TO ASSIST YOUR BABY TO LEARN TO LIVE IN THE WORLD WITH THIS TERRIBLE CRAP CALLED AUTISM OUR SOCIETY IS IN SUCH A HURRY AND SO FIXED ON KEEPING UP WITH THE JONES THAT ALL MANY THINK ABOUT IS  FIND A CURE --GIVE THEM A PILL AND OUR TROUBLES WILL BE OVER OR IF SUSIE AND JOHN DID THIS FOR THEIR KIDS THEN SURELY IF I DO IT FOR MINE IT WILL WORK-- UNFORTUNATELY THE WORLD IS NOT SO ""COOKIE CUTTER"" ITS NOT FAIR ; ITS NOT KIND AND IT CERTAINLY IS NOT EASY HENCE DENIAL FOR ALOT OF FAMILIES FIRST LEARNING ABOUT AUTISM      I DO BELIEVE THAT THERE IS CERTAINLY NO HARM IN UTILIZING WHAT YOU KNOW TO MAKE INFORMED DECISIONS THAT COULD HELP AND IN THAT ASPECT I HAVE TAKEN A LITTLE HERE AND A LITTLE THERE AND MADE MY OWN RECIPE WHICH WORKS FOR US AND I AM CURRENTLY DEBATING TRYING A FEW BIO- MEDICAL THINGS  BASICALLY ENZYMES ,PRO-BIOTICS AND POSSIBLY THE TRANS DERMAL CHELATION --ALL MORE HEALTH FOOD THINGS RATHER THAN DOCTOR MEDICAL THINGS AND I ACTUALLY HAVE ONLY STARTED THE PRO- BIOTICS-- TRYING TO GIVE IT A CHANCE BEFORE I START ANYTHING ELSE-- BUT ONE MORE CATCH IS THIS EVEN IF THESE THINGS WORK ---HOW LONG WILL THEY WORK? WILL THEY CONTINUE TO BE EFFECTIVE AT THE SAME LEVELS OR WILL THEY HAVE TO BE INCREASED OR DECREASED--POSING A NEW PROBLEM ESPECIALLY IF THEY REQUIRE BEING DECREASED COULD WE POISON OUR OWN KIDS BY GIVING THEM TOO MUCH OF WHAT WE THINK IS  GOOD THING THERE BY CAUSING ALTERNATE BEHAVIORS TO ERUPT AND BEING BLIND ENUF TO NOT REALIZE THAT WE DID IT TOO THEM INSTEAD OF THINKING THAT THEY ARE DEVELOPING ANOTHER PHASE OF A DIFFERENT BEHAVIOR WHEN IN FACT THE THING WE GAVE THEM ACTUALLY TRIGGERED THE BEHAVIOR???? THATS WHY I AM SO ADAMANT ABOUT JUST TAKING TIME TO BREATHE AND THINK THINGS OUT AND OBSERVE-- BELIEVE ME ITS NOT EASY -- I AM NOT A PATIENT PERSON AND I DONT WANT MY SON TO SUFFER ANY MORE THAN HE HAS TOO BUT THE ONE THING I HAVE REALLY COME TO OBSERVE IS WHEN THINGS ARE PREDICTABLE AND SAFE AND THE MOON AND THE STARS ARE ALLIGNED RIGHT AND I SEE DAKOTA PEACEFUL AND ENGAGED I REALIZE THAT THERE IS A CERTAIN INNOCENCE THAT COMES WITH AUTISM. HE OFTEN TIMES DOES NOT NOTICE OR ACKNOWLEDGE THAT HE IS DIFFERENT FROM ANYONE ELSE AND THAT HE IS PERFECTLY HAPPY BEING AND DOING WHAT HE IS .   ITS ALL OF US OTHER CRAZY PEOPLE TRYING TO TWEAK HIS WORLD BECAUSE WE THINK THERE IS SOMETHING WRONG NOT BECAUSE HE DOES!!!!    ITS ONCE AGAIN MY PASSION TO TRY TO GET PEOPLE TO JUST TAKE ONE EXTRA MINUTE TO DO NOTHING  TO STOP THE SCHEDULE STOP THE APPOINTMENTS STOP HAULING THE KIDS FROM THERAPY TO THERAPY AND GIVE THEM A MINUTE TO JUST BE KIDS , TO TAKE A MINUTE TO SEE IF THINGS ARE WORKING. YES DO EVERYTHING IN YOUR POWER -- BE WILLING TO TRY NEW THINGS BUT ALSO BE STRONG ENOUGH TO OBSERVE WHEN IT DOESNT WORK  OR ITS NOT RIGHT FOR YOUR FAMILY AND DONT LET ANYONE INCLUDING ME TALK YOU INTO OR OUT OF WHAT YOU FEEL IS RIGHT FOR YOUR CHILD   

WILL I EVER LEARN?

I AM NOT SURE I WILL EVER GET THIS BUT THIS MORNING AS WE ARE TRUDGING THROUGH OUR FIRST WEEK OF SCHOOL FOR THE 15YEAR  OR SO I FIND MYSELF MAKING THE SAME MISTAKES AND IT IS ONLY AFTER WE HAVE GONE THRU THE BEHAVIOR AND THE STRUGGLE THAT ENSUES  BEFORE I REALIZE THAT ONCE AGAIN I SCREWED UP.

DAKOTA WAS ABSOLUTELY MORE DIFFICULT TO GET UP THIS MORENING THAN THE REST OF THE DAYS THIS WEEK SO I THOUGHT I WOULD GET HIS BREAKFAST FIRST AND LET HIM SLEEP A FEW EXTRA MINUTES  -- BUT OF COURSE MY THICK SKULL DIDNT REMEMBER THAT I WAS  SWITCHING THE ORDER OF THINGS AND I MIGHT AS WELL JUMP OFF A CLIFF --   SO WHEN I WAS DONE I TRIED AND TRIED AND TRIED TO GET HIM UP AND MOVING AROUND AND SHORT OF DOING SOMETHING MEAN LIKE A SPRITZER WATER BOTTLE I JUST COULD NOT GET HIM TO GET UP I EVEN TOOK HIS FOOD INTO THE BEDROOM AND PUT IT UNDER HIS NOSE BUT THE MORE I PUSHED THE MORE HE DUG HIS HEELS IN -- ABD REFUSED TO WAKE UP AND GET GOING

I DONT KNOW WHY I DONT GET THIS ---                  IT IS AN APPRECIATION OF TIME; WHICH NONE OF HAS ENUF OF ;  WITHIN A FEW MINUTES OF ME BACKING OFF  HE WILL COME AROUND FOR 80% TO 90 % OF THE TIME. IF I JUST STOP INTERACTING WITH HIM AND PLEADING TO GET UP AND GET GOING AND GO ABOUT MY BUSINESS LIKE HES NOT EVEN GOING TO SCHOOL HE WILL CAVE. ONCE HE DETERMINESTHAT HE IS NOT THE ISSUE AND THE CENTER OF ATTENTION  HE WILL START TO TALK  OR GET UP AND HEAD FOR THE BATHROOM OH DONT GET ME WRONG IT DOESNT ROLL RIGHT INTO THE PERFECT SCHEDULE OR TIME CONSTRAINTS BUT AT LEAST IT IS SO MUCH CALMER AND LESS CONFRONTATIONAL AND A WHOLE LOT BETTER FOR DAKOTA AND HIS DAY AT SCHOOL. AT LEAST I KNOW WHEN HE FINALLY ARRIVES AT SCGOOL IF ANYTHING HAPPENS BEHAVIOR WISE AT SCHOOL AT LEAST THEY CANT POINT TO ME OR WHAT HAS HAPPENED BEFORE HE CAME TO SCHOOL

AND THATS  THE MAIN OBJECTIVE-- TO GVE HIM A FRESH START IN THE MORNING SO THERE IS NO UNDERLYING   REASONS FOR BEHAVIOR--AT LEAST FROM HOME!!!

SO THE NEXT TIME YOUR LITTLE ONE "STONEWALLS"  JUST TRY BACKING OFF AND PRETENDING THEY ARENT A PART OF THE EQUASIONAND SEE IF THAT HELPS THEM TO COME AROUND. 

 

TRYING TO BE CREATIVE

SCHOOL STARTED THIS MONDAY  I AM NOT EXCITED  EXCEPT FOR THE FACT THAT IT IS POTENTIALLY  DAKOTAS  LAST YEAR. I JUST FEEL THAT I HAVE SPUN MY WHEELS THRU MOST OF SCHOOL AND HAVE FOUGHT AND FOUGHT TO NOT SEE MUCH ACCOMPLISHED.

IT IS TOTALLY FRUSTRATING BECAUSE YOU WANT TO THINK THE BEST AND YOU WANT TO STRIVE FOR YOUR KID TO GETQUALITY INSTRUCTIONAL TIME BUT THE REALITY IS THAT IS THEY ARE NOT IN "TYPICAL " CLASSROOMS  THE EDUCATIONAL VALUE IS DIMINISHED GREATLY AND SOMETIME NOT BY ANYONES FAULT INCLUDING THE TEACHER  JUST THE ENVIROMENT ALONE LENDS ITSELF TO DISASTER AFTER DISASTER -- EACH OF THE 14 TO 18 KIDS ALL HAVE SEPARATE NEEDS AND HOW CAN MUCH OF ANYTH9NG BE ACCOMPLISHED WHEN THIS IS A DAILY  STRUGGLE.....

GETTING THAT OFF OF MY CHEST  I WILL MOVE FORWARD WITH MY LATESTCHALLENGE AND SOLUTION:

DAKOTA IS STILL SPORTING A CAM-WALKER WHICH IS LIKE A BIG SKI BOOT  IT IS QUITE AWKWARD AND FOR SOMEONE WHO ALREADY HAS MOTOR PLANNING ISSUES IT HAS BEEN  AN OBSTACLE TO SAY THE LEAST    WHEN I TOO DAKOTA TO SCHOOL ON MONDAY I SOON REALIZED THAT THERE WOULD BE ALOT OF RESTRICTIONS WITH THE CAM WALKER BUT THE ONE THAT WAS MOST PROMINENT WAS BOARDING THE BUS THE SIMPLE CLIMBING REQUIRED TO GET INTO THE BUS WAS A HUGE  ROADBLOCK--I ALSO REALIZED THAT WITH ALL THE KIDSAROUND AND THE HEAT AND THE END OF THE SCHOOL DAY BEING A PRESSURE SITUATION THIS WAS NOT THE APPROPRIATE ENVIROMENT FOR A TEACHING SITUATION

SOOOOOOOOO I CALLED UP THE HEAD OF TRANSPORTATION AND EXPLAINED THE THE SITUATION AND ASKED IF I COULD BRING DAK DOWN TO THE  BUS COMPOUND WHERE HE COULD PRACTICES GETTING IN AND OUT OF THE BUS WITHOUT ALL THE HUB-BUB THAT WAS GOING ON AT SCHOOL  SHE WAS VERY GRACIOUS AND TOLD US TO COME ON DOWN  AND SHE WOULD BE GLAD TO HELP US

DAKOTA WENT DOWN THERE AND ACED IT RIGHT AWAY  I WAS SURE HE WOULD BE OPK BUT I JUST WANTED TO RE ASSURE HIM THAT HE COULD DO THIS AND THE VERY NEXT DAY WE HAD A CONVERSATION ABOUT BEING ABLE TO GET IN THE BUS AND DOING IT ON HIS OWN AND --BINGO  HE WAS ON THE BUS THE VERY NEXT DAY AND SIMPLY PUT NO ANXIETY AND NO PROBLEM

YEAHHHHHHHHHHHHHHHHHH

MAYBE NOT THE POPULAR OPINION

k at the risk of upsetting a few of you i have just a little different take on the controversy over the sad death of this little boy---
once again i commend all of you who are more than diligent about exploring and offering any and all therapies that may give our kids a better quality of life-- and as for people using this news as a way to discourage or prevent any of us from doing what we decide is best for our kids is bull-pucky
i think what i am saying is: that is why our country is so great because it provides for our personal freedom to choose
and we all have to be vigilant in preserving those rights

i just have such a sick feeling in my heart because we are all searching for what works for our family and it does turn to desperation whether we want to admit it or not---
sometimes the time that we think is running out actually becomes the true test because those things that we arent sure about will be proven or fail
so please dont beat yourselves up-- believe that what you choose to do is right. my son is 18 and i cant even begin to tell you how many different soutions,therapies or cures have some down the pike in the time i have been dealing with autism and most of them have gone by the wayside. one thing i am fairly sure of {i might have said this before but i think it bears repeating} is even if there is a CURE tommorrow for autism those who are already afflicted will probably have to live the rest of their lives with autism. perhaps more easily with the therapies we are now discovering but the bottom line is we dont know if these therapies will be permenent or only work for awhile or  will be a regiment that has to be done for the rest of their lives. keep perservering but remember that quality of life is just as important and our kids deserve to be happy and kids and to be as typical as they can be and sometimes instead of being hauled from one doctor or another or to one therpay or another sometimes they might just need you to be with them and play with them and be autistic once in awhile.
unfortunately we are all in a hurry-- and its just not going to be a pill to fix this
just like we cant fix society accepting our kids
i wish all of you the best with your path and hope that there will come a day when there ont be a need for an autism support group.
i love you all and what you do
cindy

CHELATION DEATH

  i know many parent are doing chelation therapy and all parents are trying to fdo what the think is right but please please be careful; i know we wish there was a magic "cure" there isnt right now so therapies while they may help in most cases dont always work for all kids and we have to make the right choices for our families in any case i wanted to post this   Dear AutismLink subscribers:

I hate to report sad news, but this story needs to be told.  Today, a story will come out in the news about a family whose five year old child with autism died while undergoing chelation therapy.  The family, from the Pittsburgh area, was seeing a "doctor" who claimed to follow the DAN! protocol.  (Details are sketchy at this time -- we are unsure of the doctor's qualifications.  We will keep you posted.)

The child died in the doctor's office, while undergoing therapy.

Please, before you try any new therapies, we urge you to research the physician, the methods, and the safety.  Some of these therapies are quite dangerous.  We're not telling you what to do, we're just urging you to use caution.

We all do what we think is best for our children, and sometimes we are desperate.  While we've heard stories of chelation success, it is definitely a dangerous process.

Our children are so very fragile, and we fight for them as best we can with whatever we think will work.  Please keep this family in your thoughts and prayers.

Sadly,

Cindy Waeltermann
AutismLink Director

  Cindy from DAKS OPEN DOOR

SOME ADVICE TO OTHERS

I KNOW THAT IT IS EASY TO LOSE YOUR MIND QUICKLY DAKOTAS WHEN HE WAS BARELY ABLE TO SEE OVER THE KITCHEN SINK HAD AN OBESSESSION WITH THE DISHCLOTH BEING HUNG OVER THE FAUCET AND I WOULD FORGET CONSTANTLY WHEN I WOULD LEAVE THE KITCHEN AREA HE WOULD START IN SCREAMING AND YELLING AND TANTRUMING IT DROVE ME NUTS-- I REALIZED THAT HE WAS TRAINING ME MORE THAN I WAS TRAINING HIM  BUT EVENTUALLY I ALSO NOTICED THAT THE WINDOW WHICH FACES EAST LET A BRIGHT LIGHT IN ON THE CHROME AND IT WAS THE SUNLIGHT REFLECTING OFF THE SPIGOT THAT IRRITATED HIM SO FROM THEN ON I KEPT THE SHADE DOWN IN THE MORNING     YOU WILL ALSO REALIZE THAT ONE BEHAVIOR WILL REPLACE ANOTHER SO WHEN YOU SOLVE OR STOP HIM FROM SOMETHING DRIVING YOU NUTS HE WILL SUBSTITUTE WITH ANOTHER-- AS HE GETS OLDER IT WILL BE FINDING APPROPRIATE BEHAVIORS THAT HE CAN GET SOME SATUISFACTION THAT DOESNT SEEM OUT OF PLACE OR AGE APPROPRIATE. LIKE WHEN DAK WAS SMALL WE GAVE HIM DOG TOYS TO USE FOR SENSORY STIMULATION --BRIGHT COLORS AND GREAT TEXTURES SUGGESTED BY THE OT AT KAISER SO WHEN HE GOT OLDER WE HAD TO FIND THINGS HE COULD USE THAT WERE BABY-ISH SO WENT GRADUATED TO A LEATHER  STRAP ON HIS WRIST I GUESS YOU GET THE IDEA ' THE MOST IMPORTANT THING I CAN TELL YOU OFF THE START IS BREATHE AND TAKE TIME TO OBSERVE HIM WHEN HES CALM  WHEN HES AT HIS BEST AND CAPITALIZE ON THAT   FOR LANGUAGE  I HUGHLY RECOMMMEND SIGN--- JUST USING A FEW SIGNS CAN MAKE A WORLD OF DIFFERENCE IN COMMUNICATION-- SOME THINK IT HINDERS LANGUAGE BUT I DISAGREE A LARGE PART OF  OUR CHILDRENS FRUSTRATION IS FROM INABILITY TO TALK   SIGN ALLOWS THEM A SAFE HAVEN TO COMMUNICATE AND KEEP TALKING TO HIM  HE GETS IT WHETHER HE CAN ACKNOWLEDGE IT OR NOT-- KEEP TALKING BELIEVE ME EVEN WHEN YOU THINK HES NOT PAYING ATTENTION --HE IS!!!!!!!

2nd OPINION

MONDAY we went to a second opinion on Dakotas foot   Although  i am not sure that i heard anything more at least i can say that i liked the doctor.                           I THINK WE WILL STILL GO FOR A OUT OF PLAN  ASSESSMENT

THIS DOCTOR SAYS IT COULD BE UP TO A YEAR BEFORE THE SCAR TISSUE ALLOWS THE MUSCLES AND TENDONS TO HEAL AND LOOSEN HIS TOES AND HE AT LEAST SAID THERE WERE THING THAT COULD BE DONE-- HE ALSO ORDERED A NIGHT CAST TO HELP STRETCH HIS FOOT AND WANTS HIM TO WEAR AN ARCH SUPPORT TO HELP THE BIG TOE.

WE WILL CONTINUE PHYSICAL THERAPY AND HAVE A RETURN APPOINTMENT IN 5 WEEKS --SO AT LEAST I FEEL LIKE HES DOING SOMETHING--HIS NAME IS FRED ANDERSON IN PODIATRY AT KAISER IN THE NEW FACILITY AT VINEYARD IN ONTARIO. MARY ANZIANO HAS BEEN A DREAM AS WELL --SHE HAS ASSISTED ME ANYTIME I HAVE ASKED HER  SHES IN FONTANA AND IS A NURSE PRACTIONER. KUDOS TO BOTH

FOR NOW DAKOTA  CONTINUES TO COMPLAIN THATHIS FOOT AND TOES HURT AND IT SEEMS TO BE THE HEEL ,THE BALL AND THE TOES I JUST CANT BELIEVE THAT ALL OF THIS IS HAPPENING   DOESNT HE HAVE ENUF TO DEAL WITH --WITHOUT HAVING SOMETHING WRONG WITH HIS FOOT AND LEG???

IT HAS  STRESSED  ME OUT AND BEEN SO EMOTIONAL FOR DAKOTA . TWISTING HIS HAIR CHEWING TOWELS BEYOND RECOGNITION  AND I CANT TELL YOU HOW MANY NIGHTS WE SAT UP AND HE CRIED ABOUT HIS FOOT NOT BEING RIGHT AND THAT HE WAS GONNA BE CRIPPLED FOR THE REST OF HIS LIFE  AND ALL OF IT WAS SET OFF BY A BEHAVIOR BEFORE HE BROKE DOWN ABOUT FOOT

SO  A LOT OF THE STUFF WE HAVE BEEN GOING THRU HAS BEEN TRIGGERED BY THIS STUPID ACCIDENT-- OOOOHHH LET ME SCREAM!!!

 

VIEW ARCHIVES

The outline for the Center is in the march archives   dated 3/24              for anyone who would lke to read about it                                                                             

I will be adding more details of ideas later!

REPORT ON THE PICNIC

Hello

I hosted our first picnic/potluck this past weekend In case you havent read before I have this vision for a Center for Autism  to intially start in the Inland Empire. It would consist of any and all services for anyone seeling help or asistance. I have my vision posted on a past exerpt  . This picnic was a "lets get started and  see what kind of interest is out there" type of get -to-gether. There were about 30 adults and a bunch of kids. there were 3 proffessors from 3 different colleges and 3 professionals who have holistic and vitamin supplement businesses. Although i would have liked a stronger attendance i continue to be encouraged as i have had several emails since the picnic with more families expressing interest and involvement for the next meeting which will be toward the end of september.

i had a questionaire for families to fill out and i talked about my ideas and things that we will need to get started --my commitment before the next meeting is to get answers about the 501 non profit status  and seeking a permenent  place and more funding ideas plus trying to get a "board or streering committee" formed.

i will be doing a few smaller meet and greet meetings with a few that were not able to attend the picnic -most of which are out of the immediate area like orange county and the high desert--

As for the picnic  we all had a great time and it was rather casual and relaxed lots of good  company , good food and great weather                                                                      Anyone who has any inquiries , questions or would like more information or a small meeting to find out about my dream and reality for all families can email me at              daksopendoor@aol.com

Thanks for viewing  my journal!  

SLEEP ISSUES

IT IS ACTUALLY THE  3 RD OF AUGUST  BUT I HAVE AN EXERPT   { FROM JULY 30TH}  THAT I SENT ANOTHER FRIEND ABOUT THE MINOR  AND I DO SAY MINOR SLEEP  ISSUES I HAVE HAD WITH DAKOTA. SINCE THEN  I HAVE HAD ANOTHER GO AROUND WITH HIM  2 DAYS LATER  AND UPON REFLECTION  OF THE  INCIDENTS  I THINK I AM GETTING A BIGGER PICTURE OF WHAT IS HAPPENING!!!

HE HAS BEEN BED BOUND FOR 3 MONTHS AND I THINK THAT THAT SIMPLE FACT ALONE IS THE TRIGGER FOR HIS SLEEPING PATTERN CHANGE---

HERES THE EXERPT

THE PAST FEW DAYS HAVE BEEN A BIT CHALLENGING FOR ME CUZ DAKOTA IS TRYING TO WALK ON HIS OLD CRIPPLED UP FOOT AND THATS A GOOD THING BUT BECAUSE HES MOVING AROUND HE NEEDS TO BE MONITORED A LITTLE MORE SO HE DOESNT TRIP OR FALL--- AND LAST NIGHT I DONT KNOW WHAT THE HELL WAS GOING ON BUT WE TURNED OUT THE LIGHTS AT 2 AND I DOZED OFF A COUPLE OF TIMES ONLY TO BE WOKEN BY "MOMMY  MOMMY"                             MAN WAS I ON EDGE  FINALLY AT 4 05 I WAKEUP AGAIN TO FIND HES NEVER REALLY GONE TO SLEEP HES CHEWED THE SHEET UP AND HES HUNGRY SHIT-------------- I KNOW I HAVE BEEN LUCKY CUZ WE HAVE NEVER HAD TO MANY SLEEP ISSUES BUT LAST NIGHT PROVED THAT I WAS SPOILED--DAKOTA FOR THE MOST PART IS STILL A 12 HOURS ON AND 12 HOURS OFF BABY AND THAT HAS PRESENTED PROBLEMS BUT ONCE YOU GET THE ROUTINE OF  IT COMES PRETTY EASY. SO ANYWAY I GOT UP GAVE HIM SOME WATERMELON AND TAPIOCA {WHAT A COMBINATION] HAD HIM  GO PEE GAVE HIM A DRINK OF WATER AND HE LAID BACK DOWN AND FELL ASLEEP ALMOST RIGHT AWAY SO I DONT KNOW WHAT WAS BOTHERING HIM  BUT NOW I FEEL BAD CUZ I GOT IRRITATED WHEN I KNOW ITS GOT TO BE HELL FOR HIM INSIDE HIS HEAD WHAT AM  I COMPLAINING ABOUT---ITS SO EASY TO DO THOUGH   TWO DAYS LATER WE HAD ANOTHER GO AROUND  I TRIED TO CHANGE ONE PATTERN SINCE HE HAS BEEN BED BOUND AND HE FLIPPED OUT ON ME  HE SCREAMED AND YELLED AND GRABBED MY ARM AND SAID I AM GOING TO TWIST YOUR ARM !! I HAVE LEARNED THAT THE BEST OPTION FOR ME IS TO GET VERY QUIET AND REMOVE MYSELF FROM IMMEDIATE CONTACT AND JUST WAIT   I KNOW WE DONT ALWAYS HAVE TIME TO DO IT BUT I AM CONVINCED THAT FOR YOUR CHILDS SAKE THE VERY BEST YOU CAN DO IS LET IT RUN ITS COURSE WITHOUT TRYING TO INTERCEDE AND SITTING AND JUST WATCHING HIM AND NOT SAYING ANYTHING WITH LITTLE OR NO REACTION HAS BEEN THE BEST "MEDICINE " FOR DAKOTA TO "DE COMPRESS" .WITHIN 10 TO 15 MINUTES HE RETURNS                              " TO OUR WORLD"     THEN USUALLY A WAVE OF REMORSE OR APOLOGIES COME       "IM SORRY MOMMY"  "I LOVE YOU MOMMY"  THEN DIALOGUE OPENS UP AGAIN AND THE WAVE IS OVER  BUT THIS ONE WENT A LITTLE FARTHER   HE THEN STARTED CRYING BIG TEARS AND TELLING ME HIS FOOT HURT AND WHY DID HE HAVE TO FALL AND WHEN IS IT GOING TO GET BETTER-- TO ME IT WAS A MOMENT OF CLARITY  HIS THOUGHTS AND EMOTIONS WERE ALIGNED   I SEE THESE USUALLY AFTER HE HAS A BEHAVIOR ITS ALMOST LIKE IT BECOMES A TRIGGER FOR HIS BRAIN TO REWIRE.  ALL OF THIS HAS BEEN OCCURRING LATE AT NIGHT AND ITS LIKE THAT IS HIS TIME TO HEAL HIS BRAIN ---{BETWEEN 2AM AND 4 AM}   SO MAYBE WHY OUR KIDS HAVE SOME SLEEP ISSUES IS BECAUSE THE BRAIN IS   RE- WIRING    AT NIGHT  AND OUR KIDS HAVE SUCH ACUTE AWARENESS THAT SLEEPING IS AN INTERRUPTION TO THE HEALING PROCESS--- I DONT KNOW ITS JUST AN OBSERVATION THAT I HAVE MADE FOR OUR SITUATION                                MY MOTHER HAS ALWAYS BEEN ONE WHO IS EXTREMELY AWARE OF HER BODY AND HOW IT FUNCTIONS AND SHE IS NOT AUTISTIC  WHO KNOWS MAYBE THIS IS ANOTHER  THEORY THAT CANNOT BE EXPLORED BECAUSE MOST OF OUR KIDS CANT COMMUNICATE WITH US IN THE TRADITIONAL WAY  BUT THE NEXT TIME YOU ARE HAVING A SLEEP ISSUE AND YOU ARE ON YOUR LAST NERVE   JUST REMEMBER  TO STEP BACK TAKE A BREATH ,LOOK AROUND AND WAIT TO SEE IF YOUR BABY CAN GIVE YOU A CLUE ABOUT WHATS HAPPENING IN THEIR HEAD!!!

BACKLASH FROM ACCIDENT

WHY   DID THIS STUPID ACCIDENT HAPPEN????

I KNOW THAT IS A REALLY STUPID QUESTION CUZ NO ONE CAN ANSWER BUT THIS HAS TURNED INTO ANOTHER FIASCO.

WE HAVE JUST SPENT ANOTHER 3 DAYS GOING BACK AND FORTH TO KAISER ONLY TO FIND OUT THAT THERE MAYBE MORE COMPLICATIONS-- WITHOUT ADMITTING IT THE NURSE PRACTIONER WHO SAW DAKOTA ON MONDAY SAID THAT SHE THOUGHT HE MIGHT HAVE DEVELOPED "HAMMER TOES"" WHICH ARE USUALLY HEREDITARY BUT IF HIS FOOT WASNT FLEXED PROPERLY IN THE CAST IT MIGHT HAVE HAPENED THEN--HELLO!!!!

HOW MANY TIMES HAVE I TOLD THEM HES COMPLAINING ABOUT HIS TOES --BUT NOOOOOOOO DID THEY LISTEN   IT ALL STARTED WHEN HE GOT THE CAST OFF AND ALMOST 2 WEEKS LATER HES STILL NOT WALKING AND HE HAS A RED SPOT ON THE SIDE OF HIS FOOT THAT LOOKS LIKE THERES SOMETHING UNDERNEATH THE SKIN. SO THEY  XRAY AND COME BACK WITH THIS HAMMER TOE CRAP. NOW WE HAVE ADDITIONAL APPOINTMENTS TO TAKE HIM TO A PODIATRIST BECAUSE THEY ARE NOT SURE WHATS GOING ON ----

TO ADDINSULT OT INJURY WE HAD TO GO BACK TO THERAPY ON TUESDAY ONLY TO FIND OUT THAT THEY WONT BE DOING MUCH FOR HIM WE HAVE TO DO NUMEROUS EXERCISES AT HIME 4 TO 6 TIMES A DAY--- WHAT IN THE HELL DO I HAVE INSURANCE FOR--LOOK I DIONT MIND DOING EVERYTHING I CAN FOR DAKOTA BUT  MY PLATE IS  SO FULL RIGHT NOW I AM ABOUT TO EXPLODE AND THE MORE I THI9NK ABOUT IT AND WRITE ABOUT IT THE MORE I AM GETTING PISSED...

THINK I BETTER STOP FOR NOW CUZ MY BLOOD IS BOILING

MORE TO COME LATER THINK I WILL GO MAKE A FEW PHONE CALLS AND SCREAM AT SOME PEOPLE MAYBE THAT WILL MAKE ME FEE;L BETTER

FOR NOW________________________________

 

MET A GREAT PERSON TODAY

TODAY I RECIEVED A PHONE CALL FROM WHAT ITHINK IS GOING TO BE A WONDERFUL CONNECTION FOR AUTISM-- HER NAME IS MELISSA DN WE ONLY GOT TO TALK BREIFLY BUT SHE IS A PART OF THE AUTISM SOCIETY OF THE INLAND EMPIRE AND SHE IS A FIRECRACKER.

SHE HAS A 7 YEAR OLD BOY WHO HAS AUTISM AND SHE WAS BRAVE ENUF TO HAVE ANOTHER GO AROUND AND JUST GIVE BIRTH TO A BABY GIRL 4 WEEKS AGO.

ALTHOUGH OUR CONVERSTION WAS SIGNIFICANT I FELT LIKE I COULD TALK TO HER FOR HOURS AND I THINK THAT SHE CAN HELP ME AS MUCH AS I COULD BE AN ASSET TO HER  SO I AM REALLY EXCITED!!!       

I HAVE ALSO RECIEVED SEVERAL RESPONSES TO THE PICNIC POTLUCK FOR THE CENTER FOR AUTISM AND I AM ACTUALY TURNING APPREHENSION INTO EXCITEMENT CUZ I THINK THIS CAN REALLY HAPPEN  WE ALL NEED TO DRAW ON EACH OTHERS STRENGTHS AND ABILITIES.

THIS IS A DREAM THAT MANY OF US HAVE IT JUST TAKES THE RIGHT COMBINATION OF DREAMERS AND DOERS  MIXED WITH A LITTLE LUCK AND SKILL TO MAKE IT HAPPEN!!!!

HE GOT IT!!!!

MY LAST ENTRY WAS A SPIN OFF OF THOUGHTS FROM SOME ACCOMPLISHMENTS THAT OCCURRED IN THE WEE HOURS OF THE MORNING.

DAKOTA IS STILL STRUGLING WITH THE BROKEN LEG : THE ANXIETY AND FEAR ASSOCIATED WITH WALKING AND HURTING HIS LEGS AGAIN BUT WE MADE SOME BREAK THRU. IT IS IN FACT THE REALIZATION THAT I ACTUALLY INSTRUCTED HIM LAST NIGHT ON A SPECIFIC TASK FOR THE FIRST AND ONLY  TIME       AND HE GOT IT!!!!    HE GOT IT!!!!     NOT REPETITION AFTER REPETITION  NOT BABY STEPS  I SIMPLY EXPLAINED TO HIM  ONCE WHAT I WANTED HIM TO DO  I ACTUALLY LEFT THE ROOM AT HIS REQUEST AND  AWHILE LATER   LOW AND BEHOLD A MEAGER "MOMMA" CAME FROM THE ROOM THERE HE WAS--- HE HAD DONE EXACTLY WHAT I ASKED!  

CAN YOU TELL I AM ON THE MOON RIGHT NOW?????

I WAS SO THRILLED I THINK I PRASIED HIM TILL HE DIDNT WANT TO HEAR IT ANY LONGER  I WAS SIMPLY AMAZED  AND AS I THINK YOU HAVE SEEN IN THE LAST TWO ENTRIES  IT REINFORCES THAT OUR KIDS GET IT  AND IN THE RIGHT ENVIROMENT IN THEIR OWN TIME  THEY CAN AND WILL DO WHAT IS NECESSARY.

BEHAVIOR MASKS ALOT OF THEIR ABILITY AND IF YOU CAN  FIGURE OUT THE TRIGGER FOR THE BEHAVIOR AND REMOVE IT I BELIEVE YOU WILL HAVE SUCCESS.  IT MAY NOT BE CONSISTANT AT FIRST BUT CONTINUALLY DISECTING THE PROCEES TO WHAT THEY HAVE FEAR ABOUT AND WHAT THEY REACT TO AND THEN TALK  TALK   AND  TALK   SOME MORE  EVEN IF THEY DONT VERBALIZE THEY WILL KNOW YOU ARE TRYING TO HELP THEM THROUGH THIS ACCOMPLISHMENT.

SO MANY OF OUR KIDS HAVE EXTREME ANXIETY-- DR. RICHARD LA VOIE TAUGHT ME ONE VERY IMPORTANT LESSON I WILL NEVER FORGET: HE WAS SPEAKING ABOUT PRESCRPITION TREATMENT OF OUR KIDS AND HOW SO MANY ARE BEING GIVEN ANTI-DEPRESSANTS  AND THE SIMPLE FACT THAT OUR KIDS ARE NOT DEPRESSED!

THAT DEPRESSION IS THE FEAR OF WHAT HAS ALREADY HAPPENED

ANXIETY IS THE FEAR OF WHATS TO COME!

AND FROM MY POINT OF VIEW; THAT IS POINT OF CLARITY. I TRULY BELIEVE THAT MOST AUTISTIC CHILDREN  SUFFER FROM THE FEAR OF WHATS COMING NOT WHATS HAPPENED. THINK ABOUT  IT  SOCIAL STORIES SPELL OUT WHAT TO EXPECT , WHEN OUR KIDS TANTRUM IT IS USUALLY BECAUSE THINGS DID NOT GO THE WAY THEY THOUGHT IT WAS GOING TO GO   COUPLED WITH   O.C.D. {OBESSIVE COMPULSIVE DISORDER} THE DEPENDENCE ON  ROUTINES OR SCHEDULES  OR EVEN THE FACT THAT THEY LINE THINGS UP OR DO THINGS IN A SPECIFIC ORDER TELLS ME THAT IS THEIR SECURITY--IF WE GIVE THEM THAT "TRUST IN US " TO PROVIDE SECURITY AND SAFE ENVIROMENT  I BELIEVE  WE WILL SEE PROGRESS.

YOU WILL SEE YOUR CHILD GET IT!  JUST LIKE I SAW DAKOTA GET IT!!