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!! 

THEY DO GET IT!!!!

THEY DO GET IT!!!!!

SO MANY TIMES WE AS PARENTS ARE THWARTED WITH THESE PEOPLE WHO "HANDLE " OUR KIDS AND ITS ALMOST AS IF THEY HAVE PITTY ON US BECAUSE THEY JUST DONT SEE THE POTENTIAL THAT WE SEE---OK OK THEY DONT LIVE WITH OUR KIDS 24/7   AND SOME TIMES OUR KIDS WILL EVEN DO THINGS FOR THEM THAT THEY WONT DO AT HOME   BUT ISNT THAT WHAT THEY CALL "NORMAL"? WE SHOULD BE THRILLED; THANKFUL CUZ WHAT WE ARE EXPERIENCING IS WHAT TYPICAL PARENTS  HAVE EVERY DAY AND THEY  GET FRUSTRATED. 

I CANNOT EXPLAIN THE OMINIOOUS FEELINGTHAT SOMEONE LIKE ME HAS WHEN YOU WALK INTO AN IEP MEETING {INDIVIDUAL EDUCATION PLAN}  TO HAVE TO SIT THRU GOALS AND OBJECTIVES AND HAVE MY CHILDS ABILITIES REDUCED TO ACHIEVING A GOAL THAT MAY NEVER HAVE ANY PURPOSE IN HIS LIFE! WHAT IS THAT ALL ABOUT??

WHEN YOU HAVE  YOUNG DISABLED CHILDREN YOU ARE SO HELL-BENT TO EXPOSE THEM TO ACADEMICS --I THINK ITS THOSE DEEP SEEDED  THOUGHTS ABOUT HOW WE AS KIDS HAD TO GO THRU THE ROUTINE OF MASTERING SUBJECTS AND ACHIEVING SOME KIND OF GRADE COUPLED WITH THE FACT THAT WE ARE TRYING TO SHOW THOSE "KNOW-IT-ALLS" THAT OUR KIDS ARE NOT RETARDED AND HAVE ABILITIES THAT THEY EITHER CANT SEE OR WONT ACKNOWLEDGE---WORSE YET ; TAKE THE TIME TO DEVELOPE

BUT AS OUR KIDS GROW, I KNOW FOR ME, THE PERSPECTIVE HAS CHANGED.FIRST OF ALL I WANT MY CHILD TO BE HAPPY AND AS COMFORTABLE AS HE CAN BE IN HIS SKIN, I WANT HIM TO BE ABLE TO DO WHATEVER  HE WANTS-- FREEDOM OF WILL {MAYBE SOME WOULD CALL THAT NORMAL--WHAT IS NORMAL ANYWAY??} SO WE HAVE TO TAKE EXTRA STEPS TO ACCOMODATE THEIR NEEDS AND WANTS BUT TO EXPOSE THE COMMUNITY AROUND THEM TO BE TOLERANT. I MAKE A DISTINCT DIFFERENCE BETWEEN INCLUSION  AND TOLERANCE. YES IF WE LIVED IN A PERFECT WORLD ALOT OF THINGS WOULD BE DIFFERENT  BUT THE FACT IS EVERYONE HAS HANGUPS OR  PERSONALITY FLAWS AND MOST ARE ACCEPTED  FOR SOME REASON  OUR COMMUNITY JUST HASNT GOTTEN TO TOLERATING THOSE WHO ARE DIFFERENT BECAUSE THEY HAVE AUTISM [AND MANY OTHER DISABILITIES]  IT IS ABSOLUTELY UP TO US TO START THIS PROCESS AND  IT STARTS IN THE SCHOOLS. TEACH THE "OTHER" KIDS TO AT LEAST HAVE SOME WORKING KNOWLEDGE ABOUT OUR KIDS. DONT JUST SPEAK TO THE TEACHERS AND STAFF  ASK THAT YOUR CHILD BE ABLE TO GO TO A CLASS EVEN IF IT IS 10 MINUTES EVERY OTHER DAY  TANTRIUMS FITS AND ALL BUT GO TO THAT CLASS ROOM AND TALK TO THOSE KIDS AND TELL THEM ABOUT YOUR CHILD.TELL WHAT TO EXPECT  WHAT THEY MIGHT SEE AND TELL THEM THAT ITS NOTHING TO FEAR. DO IT BEFORE YOUR CHILD STARTS COMING TO THE ROOM THEN YOU HAVE SET YOURSELF UP FOR SUCESS. MAKE YOURSELF ACCESSABLE TO EXPLAIN ANYTHING THEY MIGHT HAVE A QUESTION ABOUT;LIST A PHONE NUMBER OR EMAIL ADDRESS  GIVE THEM THE ABILITY TO ASK AND EDUCATE THEMSELVES.

THIS IS PREPARING THE COMMUNITY FOR OUR KIDS!

WHEN THESE KIDS LEAVE SCHOOL IT WONT BE A UNKNOWN  SUBJECT  IT WILL BE SOMETHING THEY CAN DRAW ON AND MAYBE EVEN TALK TO OTHERS ABOUT. THATS HOW WE SHAPE THE COMMUNITY FOR OUR KIDS LONG AFTER THEY GET OUT OF SCHOOL. AND FOR MOST OF OUR CHILDREN THEY WILL BE OUT OF SCHOOL MUCH LONGER THAN THEY ARE IN SCHOOL.

SO THE NEXT IEP  TRY A PLAN  FOR INTRODUCTION OF YOUR CHILD INTO THE "COMMUNITY  OF SCHOOL" I KNOW MANY OF YOU ARE LUCKY TO HAVE YOUR CHILD IN FULL INCLUSION OR MAINSTREAMING BUT EVEN THOSE OF YOU WHO HAVE  A SDC {SPECIAL DAY CLASS} THINK ABOUT THE BIG PICTURE AND THINK ABOUT EDUCATING THE "TYPICAL" STUDENTS ON "COMMUNITY" BECAUSE OUR KIDS    DO  GET  IT   AND THEY DESERVE TO   SHOW IT !

    

PERTUSSIS

IN ONE OF THE  SUPPORT GROUPS I PARTICIPATE ON LINE THERE WAS AN  INQUIRY ABOUT A FRIEND OF A FRIEND WHOS DAUGHTER HAD CONTRACTED WHOOPING COUGH. I KNOW THIS IS A VERY SERIOUS DISEASE AND HAS BEEN NEARLY ERATICATED IN THE UNITED STATES BUT AMONG THE MEDICAL FIELD THERE  IS SOME CONCERNTHAT IT MAY COME BACK BECAUSE OF ALL THE IMMIGRATION.   WITH THAT IN MIND I STILL HAVE SERIOUS ISSUES WITH THE VACCINE WHICH IS PERTUSSIS

BELOW IS  AN  EXCERPT OF WHAT I WROTE ABOUT OUR EXPIERENCE:

Just wanted to tell you an expierence our family had with PERTUSSIS
THAT IS THE VACCINE USED FOR WHOOPING COUGH.Traditionally it is administered as DPT--Diptheria Perussis Tetenaus and is part of the shot regiment for infants along with the mmr and polios etc.
I wrote about this quite some time ago on the support group but my Dakota had a reaction to the pertussis and ended up in the ER with siezures and almost died. The only reason he survived was because he was already on anti-siezure medication.
We have Kaiser and in each of the pediatric treatment rooms there is a warning hanging on the back of the door stating each med and its dangers and in that publication it states that Pertussis can and has been known to trigger siezures for those who are prone to that type of disorder. It goes on to state that it is about a 1 in 10,000 chance but all I can say is as festidious all of the parents on this site are about the thiemerisol[mercury] content in vaccinations, I would be surprized that any would want to take a chance with the PERTUSSIS.

You have to remember the physicians are poo-pooing the mercury accusations so we can be sure that they will say anything to convince you its the big bad boogie man knocking at your door if you dont do what they think you should do... because afterall they are right---right????

OK just wanted to give insight to pertussis cuz we almost lost our guy as an oversight by out peds doc and it was also the last shot i gave my son  THAT WAS ENUF FOR ME   
--THIS WAS WAY BEFORE WE KNEW ABOUT MERCURY  ABOUT 1992 OR 93???

I CERTAINLY  DONT WANT TO DISCOURAGE ANYONE  FROM  PROTECTING THEIR FAMILY BUT I THINK IT IS IMPORTANT THATPEOPLE BE INFORMED OF THE POTENTIAL DANGER  TOO!

 

AT MY WITS END AGAIN

WELL here we go again

Dakota has been challenging - - - always but I am having one of those nights that has cullmenated over the corse of several weeks.the day to day nursing and screwy hours and one on one attention coupled with the fact that no-one from the school except his teacher has bothered to even call has certainly been enuf to drive me off the deep end but there is one thing I am loosing my marbles about

Dakota is twisting his hair Now this has been an on and off thing with him forever BUT i have never seen it to this degree.The stress and frustration must be unbearable for him because he has literaly  twisted his hair off his head and he is going bald.

I have yelled, I have pleaded, I have threatened to take things away, I have shown him picures I have talked to him about men as they get older they go bald and how proud he should be with his beautiful head of hair, I have tried to substitute activities, I just dont know what to do and it is driving me nuts!!!

We as parents of Autistic kids try so hard to teach our kids social ques  rules of society  try to dress them so they blend in try so hard to allow our kids to be presentable to get their foot in the door and then they go and do stuff like this which just screams theres something different about this child!! I know there are worse things in the world but it breaks my heart to have such a handsome young man ruin his looks.

As I  always tell other parents BREATHE

 

FIRST STEPS ON HIS OWN

DAKOTA  HAS  HIS  HOURS  COMPLETELY   FLIPPED   AROUND.

HE IS GOING TO SLEEP AROUND 2:30 AM AND WAKING UP AROUND 2:30 PM SCREWY RIGHT??? HE IS HOOKED ON THE LATE SHOW S AND A PROGRAM CALLED          STREET SMARTS  AFTERALL TECHINACALLY HE IS AN ADULT SO I GUESS ITS OK. HE SEEMS TO ENJOY AND LEARN FROM IT   A N Y W A Y

THIS MORNING I GOT UP AND LOGGED ON TO CHECK EMAIL KNOWING DAKOTA WAS SOUND ASLEEP AND WHEN HE WOKE UP HE WOULD HOLLER FOR ME---I AM SITTING HERE AND I HEAR THIS CLICK CLICK AND I STOP AND LISTEN I THINK ITS THE DOG --- I REALIZE THE DOG IS ON THE COUCH SO I GET UP TO SEE WHAT THE NOISE IS AND MUCH TO MY SURPRIZE  ITS  DAKOTA    HE WOKE UP AND GOT HIS WALKER AND STARTED OUT TO THE FAMILY ROOM.

OH MY GOD THOSE WERE HIS FIRST STEPS BY HIMSELF SINCE THE ACCIDENT!!!!! HE HAS BEEN RELUCTANTLY GETTING UP FOR THE BATHROOM MAYBE 2 OR 3 TIMES ADAY AND NEVER WITHOUT ME. I AM SO AMAZED

BUT THE FIRST THING THAT WENT THROUGH MY MIND WAS NOW THAT HE IS SUPPOSED TO GO BACK NEXT WEEK TO CHANGE CASTS NOW HES GONNA WALK BY HIMSELF! THEN I THOUGHT IF YOU MEASURE A NUERO-TYPICAL KID -THAT NORMAL KID WOULD BE UP AND OUT WITHIN A DAY OR TWO  SO I GUESS DAKOTA IS RIGHT ON SCHEDULE AS AN AUTISTIC SPECTRUM CHILD. WE HAVE ALWAYS BEEN TOLD THAT WHAT A "NORMAL" CHILD WIL DO WITH 10 TO 20 REPETITIONS IT WILL TAKE AN AUTISTIC CHILD  MAYBE 500 TO 1000 REPETITIONS!!!  HEY RIGHT ON SCHEDULE   THE TRICK IS TO ALWAYS REMEMBER OUR KIDS HAVE THE POTENTIAL  THEY JUST WORK ON THEIR OWN SCHEDULE . WE HAVE TO SIT BACK A BREATHE

THAT HAS BECOME MY FAVORITE WORD RECENTLY--- JUST  BREATHE                       LIFE  IS TO SHORT TO RUSH IT BY AND I THINK IT IS ONE OF THE MOST IMPORTANT LESSONS WE CAN LEARN FROMOUT KIDS----THEY MARCH TO THE BEAT OF A DIFFERENT DRUMMER AND WE NEED TO LISTEN TO THE  CADENCE!!!!

 

BEHIND AS USUAL!!!!

WELL AS USUAL   BEHIND!!!!!

I COULD NOT BELIEVE IT WHEN I REALIZED ITS BEEN OVER A WEEK SINCE I MADE AN ENTRY!! SOME MANY THINGS TO WRITE THE TRICK IS TO EDIT IT TO MAKE IT INTERESTING AND USEFUL FOR THOSE WHO READ IT!!!

SO GUESS I CAN WORK BACKWARDS-- HAVE JOINED 2 GROUPS ON YAHOO FOR AUTISM AND THEY ARE GREAT.I WILL BE ADDING THEM TO MY FAVORITE WEB PAGES. ONE HAS A VERY ACTIVE GROUP WITH A PLETHERA OF TOPICS AND HAS 10 TO 20 ENTRIES EVERY DAY. THE OTHER IS ONE THAT A GOOD FRIEND OF MINE  HAS STARTED AND SHE IS THE CORNERSTONE OF THIS GROUP AS SHE WORKS IN THE INLAND REGIONAL CENTER  RESOURCE LIBRARY SO SHE HAS A LOT OF POSTINGS ON ACTIVITIES AND INFORMATION ABOUT OUR KIDS!!!

THERE HAS BEEN A RECENT DISCUSSION ABOUT PARENTAL VOUCHERED RESPITE - ONE OF MY FAVORITE TOPICS- HAHA  AND A PARENT WHO IS HAVING TROUBLE GETTING EVEN 6 HOURS OF RESPITE AND THAT ORANGE COUNTY REGIONAL CENTER MAY BE AUTHORIZING PARENTAL VOUCHERED RESPITE  IMAGINE THAT !

I HAVE BEEN FURIOUSLY WORKING ON A PICNIC POTLUCK WE ARE TRYING TO ORGANIZE TO START THIS CENTER I HAVE PREVIOUSLY  MENTIONED ON THIS JOURNAL. I WILL MAKE A SEPARATE EXERPT WITH AN ANNOUNCEMENT TO TRY TO GET MORE PEOPLE NOTIFIED.

AS FOR THE 4TH OF JULY WE WENT TO THE CELEBRATION AND PARADE IN ONTARIO CALIFORNIA. WE HAVE FRIENDS THAT HAVE A BUSINESS ON THE PARADE ROUTE AND THEY OPEN IT TO EVERYONE THEY KNOW SO WE HAVE A PRIME SPOT!DAKOTA LOVES THE MARCHING BANDS  AND SINCE HE IS "STILL WITH CAST" WE HAD TO WHEEL HIM TO THE CURB IN THE WHEELCHAR!!DIDNT MATTER HE LOVED IT! 

SO GUESS THAT PRETTY MUCH CATCHES ME UP BUT THINK I NEED TO BE A LITTLE MORE CONSCIENCE UPDATING THIS JOURNAL.

ONCE AGAIN PLEASE ANYONE WHO READS THIS JOURNAL I WELCOME EMAIL AT THE SAME ADDRESS DAKSOPENDOOR@AOL.COM  I HOPE TO MAKE A DIFFERENCE BY HELPING HOWEVER I CAN SINCE I DIDNT HAVE THIS TYPE OF HELP WHEN I FIRST STARTED OUT WITH MY SON.