GFCF DIET@#$%^&(@#$%&()

CALL ME SINICAL, CALL ME SKEPTICAL, CALL ME LAZY; I AM JUST NOR CONVINCED THAT THE GFCG DIETS IS THE "END ALL" ANSWER TO AL OUR PROBLEMS IN AUTISM. GFCF IS GLUTEN FREE CASSIEN FREE. IT IS A QUITE COMPLEX DIET THAT CONSISTS OF TAKING MANY OF THE "FAVORITE FOODS OF THESE CHILDREN AND RE-CREATING THEM WITH A HEALHY TWIST.  OK LETS GET REAL  DIETS OF ANY KIND ARE GOOD FOR US. WE EAT HEALTHIER FOODS AND SURELY IT WIL HALP OUR SYSTEM TO BE HEALTHIER. AND I DONT DISPUTE THE FACT THAT MANY MANY PARENTS HAVE HAD SUCCESS WITH THIS DIET. FOR THE MOST PART IT DOES MAKE SENSE ESPECIALLY WHEN YOUR CHILD IS HAVING GUT OR INTESTENAL PROBLEMS

THE FLIP SIDE IS THAT IT IS ALMOST "CULT-ISH". IF YOU ARE NOT DOING THIS DIET FOR YOUR CHILD IT SEEMS AS THOUGH SOME PEOPLE THINK YOU ARE MAKING A MISTAKE OR GYPING YOUR CHILD.

I AM WRITTING ABOUT THIS BECAUSE I AM A MEMBER OF ANOTHER GROUP THAT IS ONLINE AT YAHOO CALLED   autism_inlandempire_socal  WHICH HAS EEN DISCUSSING THIS TOPIC AT GREAT LENGTHS RECENTLY.

I THINK THAT JUST LIKE ALL DECISIONS IN YOUR HOME AND ABOUT YOUR FAMILY THAT IT IS VERY INDIVIDUAL.YOU WEIGHT ALL TE OPTIONS AND MAKE YOUR CHOICES.BUT  COMMON SENSE  PLAYS A BIG PART.                         IN OUR HOME WE HAVE MADE OTHER ALTERATIONS BECAUSE DAKOTA DOESNT SEEM TO HAVE PROBLEMS WITH DIGESTION. FOR INSTANCE---              FRESH BREWED DE-CAF TEA IS MADE IN A PITCHER ALMOST DAILY. WE USE A COMBINATION   OF LIPTON GREEN TEA {4BAGS},                                         LIPTON REGULAR DE-CAF {3 BAGS} AND DE-CAF RED ROSE {3 BAGS}.             ALSO  VITAMITE IS USED VS. COWS MILK OR SOY MILK . AS WELL JUICY JUICE OR ANY OTHER 100% FRUIT JUICE FOR BEVERAGE AND TO MAKE HOMEMADE JELLO --BY HEATING THE JUICE AND USING A PACKET OF KNOTS UNFLAVORED GELATIN YOU CAN MAKE HOLSUM JELLO WITH OUT REFINED SUGAR.             WE STRUGGLED WITH INCESSANT EAR INFECTIONS IN THE EARLY YEARS AND MY MOM WAS INSISTANT TO GIVE DAKOTA WHOLE OATMEAL NOT THE MICROWAVE OR INSTANT BUT COOKED OATMEAL - SOMEHOW I MADE A CORRELATION TO DAKOTA SINSUS PROBLEMS AND HAVE SINCE REMOVED ANY EXCESS WHEAT AND OATS FROM HIS DIET AND WE SAW AN IMMEDIATE IMPROVEMENT IN THE SICKNESS. THAT MEANS WITH CEREAL YOU STICK TO THE CORN AND RICE  AND THERE ARE MANY OUT THERE. I HAVE EVEN NOTICED THAT DAKOTA SEEMS TO BE AWARE OF WHAT MAKES HIM FEEL BETTER BECAUSE EVEN WITH BREAD HE  WILL ONLY EAT BREAD THAT HAS GARLIC OR A TOPPING ON IT AND HE STAYS AWAY FROM PLAIN BREAD OF ANY KIND.

WHATEVER YOU DECIDE BE HAPPY AND DONT REGRET NOT DOING SOMETHING!!!! 

  

SPEAK OUT FOR UNDERSTANDING

SOMETHING THAT JUST CAME TO MIND OVER THIS FIASCO  WITH AKOTA BREAKING HIS LEG WAS MY INITIAL ENCOUNTER AT THE E.R.

ALTHOUGH I HATE TO IMAGINE THIS THE SIMPLE FACT IS OUR KIDS WILL END UP IN THE E.R. AS MUCH IF NOT MORE THAN THE TYPICAL CHILD AND WE NEED TO SPEAK UP FOR EDUCATION TOLERANCE AND UNDERSTAND ING IN THESE FACILITIES.

WHEN MY SON HIT THE E.R. THE FIRST THING HE WAS GREETED WITH WAS A NURSE AN R.N. WHO STARTED ASKING HIM TO RATE HIS PAIN. I IMMEDIATELY TOLD HIM THAT DAKOTA WAS AUTISTIC  AND  WOULD NOT PROBABLY RESPOND TO HIM FOR A NUMBER OF REASONS . EVEN IF HE DID UNDERSTAND THE CONCEPT HE HAD SUCH A HIGH TOLERANCE FOR PAIN THAT HE WOULDNT GET AN ACCURATE READ ANYWAY--NEVER THE LESS HE WAS SHOVED IN FRONT OF THE NURSES STATION AND LAID THERE FOR OVER AND HOUR AND A HALF BEFORE ANYONE REALLY PAID ANY ATTENTION TO HIM. WHEN IN ACTUALLITY HIS INJURY WAS SIGNIFICANT ENUF TO WARRANT IMMEDIATE ATTENTION. 

THE PURPOSE OF THIS EXERPT I TO URGE EVEYONE TO SPEAK OUT FOR ACCOMODATIONS FOR YOUR KIDS ESPECIALLY IN PLACES LIKE AN EMERGECY ROOM...... I CALLED KAISER MEMBERSHIP SERVICES AND GAVE THEM A EARFUL---I TOLD THEM THAT NO ONLY WERE THEY NEGLECTFUL FOR MAKING MY SON WAIT SO LONG THAT THE INITAL NURSE DIDNT HAVE A CLUE. THAT THIS HOSPITAL IN WHICH DAKOTA HAD BEEN BORN  HAS MADE ALL SORTS OF ACCOMDATIONS FOR HEARING AND SPEECH IMPAIRED,WHEELCHAIR ACCESSIBILITY, PACE MAKER PATIENTS ,HELL THERES EVEN ACCOMODATIONS FOR SPANISH SPEAKING PEOPLE BUT HERE IS A CHILD BORN TO THEIR HOSPITAL FILLED FULL OF "PROFESSIONALS" WHO SHOULD AT LEAST HAVE A SLIGHT UNDERSTANDING ,ACCEPTANCE, AND TOLERANCE AND WAS THERE ONE IOTA OF UNDRSTANDING ---NOOOOOOOOOOOOOOOOOOOOOOO                          WAS THERE EVEN AN ATTEMPT TO CALL SOMEONE ELSE TO HELP THEM UNDERSTAND MY CHILD?? NOOOOOOOOOOOOOOOOOOOOOOO                                DID THEY EVEN LISTEN TO ME????      NOOOOOOOOOOOOOOOOOOOOOOOOOO      

SO CALL YOUR HEALTH CARE PROVIDERS, CALL YOUR DOCTORS, CALL YOUR HOSPITALS AND CLINICS RAISE OUR VOICES NOW BEFORE YOU END UP WITH A LESS THAN DESIREABLE RESULT LIKE I DID.

I HAVE EVEN OFFERED TO IN-SERVICE THE STAFF AT THE HOSPITAL AS A MOM OF 18 YEARS WITH ON THE JOB TRAINING TO HELP THEMUNDERSTAND AND  TOLERATE OUR KIDS AND TO MAKE IT A BETTER EXPIERENCE FOR OUR KIDS AS WLL AS THE PROFESSIONALS THAT ARE TREATING THEM

PLEASE TAK THIS AFFRIMATIVE ACTION  NOW                                                  ITS ONLY A PHONE CALL BUT IT MIGHT MAKE THE DIFFERENCE 

ANOTHER WEEK GOES BY

IN SOME WAYS IT FEELS LIKE THE DAYS FLY BY - - - IN OTHER WAYS IT SEEMS AS IF EVERY HOUR EQUATES TO A DAY. THE FUNNY THING ABOUT IT IS DEALING WITH THE BROKEN LEG  RATHER THAN THE AUTISM . I ADMIT THAT THE AUTISM HAS PUT A NEW TWIST TO THE EXPIERENCE HOWEVER WHEN I THINK ABOUT ALL THE "NURSING" DUTIES I HAVE BEEN DOING I KNOW THAT WHETHER DAKOTA WAS AUTISTIC OR NOT I STILL WOULD HAVE TO DO MOST OF IT . THE HEALING PROCESS IS WHAT IS BEING IMPAIRED BY THE AUTISM.

I HAVE SO MANY EMOTIONS ABOUT THIS: ITS ALMOST AS IF I AM BLOCKED FROM WRITING ABOUT IT.I AM SO ANGRY THAT THIS HAD TO HAPPEN TO MY CHILD WHO HAS SO MANY OTHER EXTRA CHALLENGES IN HIS LIFE. I AM CURIOUS HOW THIS COULD HAVE HAPPENED WHEN MY SON HAS A ONE ON ONE AIDE AND WHY HE WAS WHERE HE WAS . I AM ANXIOUS FOR THIS TO ALL BE OVER . I AM HOPEFULL THAT THIS TO SHALL PASS SOON. I AM EXTREMELY OVERWHELMED BUT HEY ISNT THAT MY LIFE ANYWAY????

I KNOW IN SOME STRANGE WAY IT IS ALL IN THE "PLAN"- THAT TIME HEALS - IT WAS "MEANT TO BE"- OH YES AND MY PERSONAL FAVORITE  [BLEEEECH] GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE---WAIT HERE WHILE I PUKE---SORRY TO BE SO SINICAL BUT I AM FEELING A LITTLE LIKE A VICTIM AND THAT DOESNT HAPPEN VERY OFTEN . I AM OK WITH WHAT IS SLUNG AT ME MOST OF THE TIME BECAUSE I AM RESISLIANT  RESOURCEFUL AND RELENTLESS BUT WHEN OTHERS AROUND ME THAT I CARE FOR AND CARE ABOUT GET CRAP THROWN THEIR WAY I TAKE IT ON AND THATS HOW THINGS GET TO ME. AND THE ONE SIMPLE THING THAT BUGS ME THE MOST IS HOW SOME PEOPLE SLIDE THRU LIFE VIRTUALLY UNSCATHED HAVING NOTHING TRAUMATIC OF LIFE CHANGING EVER HAPPEN AND THEN THERE ARE THOSE OF US WHO SEEM TO DEAL WITH CRAP ALMOST ON A DAILY BASIS-- I KNOW YOU ARE EXPECTING ME TO SAY THIS AND I AM GOING TO BE PREDICTABLE AND SAY IT --ITS JUST NOT FAIR

CRAP SHOULD BE SPREAD EQUALLY AMONG ALL OF US. SO THE BURDEN WE EACH HAVE TO CARRY IS SHARED WHATS THAT SAYNG "EQUALLY YOKED"???

WELL I GUESS IN A PERFECT WORLD AND THATS THE KEY                            ITS NOT       SO WE LIVE WITH OUR TRIALS AND TRIBULATIONS MAKING THE BEST OF WHAT WE ARE DEALT  KNOWING EVENTUALLY WE WILL ALL BE IN A BETTER PLACE   ITS JUST TE JOURNEY THAT SUCKS SOMETIMES----           AND I DO MEAN SOMETIMES   CUZ THERE IS LOTS TO BE THANKFUL ;             FOR IN THE BIG PICTURE  

A DISABILITIY WITH A DISABILITY

MY TITLE KINDA SAYS IT ALL

THE PAST WEEK HAS BEEN TO SAY THE LEAST ONE OF THE MOST CHALLENGING I HAVE GONE TRHOUGH SINCE THE BIRTH OF MY SON.                I REFLECT ON HOW LUCKY WE HAVE BEEN SINCE HIS BIRTH TO NOT HAVE HAD TO DEAL WITH SITUATIONS LIKE THIS--TER WAS ALWAYS A DOCTOR APPOINTMENT OR A THERAPY  ;AN IEP  OR TEACHER CONFERENCE   EVEN A CALL TO COME GET DAKOTA WHEN HE GRABBED SOMETHINGMOF THE WALL IN THE CLASSROOM BUT NEVER  MY BABY BEING HAULED OFF IN AN AMBULANCE BECAUSE HE INJURED HIMSELF.

I AM ON A NEW LEARNING CURVE --- HANDLING A DISABILITY WITH A DISABILITY AND WHAT A CHALLENGE [ THAT SEEMS TO BE THE POPULAR WORD  RIGHT NOW] I MAY REPEAT MYSELF BUT THE ANXIETY DAKOTA HAS SUSTAINED AND I DO MEAN SUSTAINED IS THIS OVERWHELMING FEAR THAT HE WILL BREAK HIS OTHER LEG--HE HAS BEEN IMPOSSIBLE TO CONVINCE TO EVEN PUT ONE FOOT ON THE FLOOR TO TRANSFER OVER TO THE COMODE TO TAKE CARE OF PERSONAL BUSINESS AND BELIEVE ME THAT HAS BEEN A PRIMAL CONCERN. AMAZING HOW PRIORITIES ARE SET. EVERYTHING GOES OUT THE WINDOW AND YOU STRIP DOWN TOO BARE NECESSITIES.  YOU MANAGE HE PAIN AND THE FEAR OF THE INJURY AND YOU ASSUME THE ROLE OF THE NURSE ADMINISTERING MEDS AND CHANGING BEDDING  MAKING SURE YOUR "PATIENT" EATS BUT WHAT IF HE CONTINUES TO EAT AND THERE IS NO MOVEMENT ON THE OTHER END?????? WELL THATS WHERE THIS LAST WEEKS JOURNEY HAS LED ME!

REALITY TV HAS PLAYED A PART--- EVER HEARD OF FEAR FACTOR??? WELL OUR PORTABLE COMODE HAS BECOME THE FEAR FACTOR TOILET! DAKOTA IS A REAITY TV JUNKIE HE LOVES THEM ALL BUT FEAR FACTOR IS ONE OF HIS FAVORITES. SO WHEN I WAS BECOMING SO UNSUCESSFUL AT CONVINCING HIM TO STAND ON THE GOOD LEG AND TRANSFER I KNEW I HAD TO DO SOMETHING DRASTIC TO "GET THE BALL ROLLIN" I WHIPPED OUT THE WIDE MASKING TAPEND GRABBED A BLACK SHARPI PEN AND MADE A FEAR FACTOR LOGO TO TAPE ON THE LID.I TOLD HIM IF ALL THOSE GUYS HE WATCHED EATING BUGS AND CRASHING CARS COULD FACE THEIR FEARS THEN HE COULD FACE HIS OWN FEAR FACTOR---I EVEN THREATEND TO CALL JOE ROGAN THE HOST OF FEAR FACTOR AND TELL HIM THAT HE WOULDNT FACE HIS FEAR.       THE END RESULT HAS BEEN SOMEWHAT SUCCESSFUL. ALTHOUGH IT STILL TOOK ALOT O TALKING AND COAXINGWE HAVE ACHIEVED AT LEAST A DEGREE OF CALMNESS WITH THIS TASK. I CANT TELL YOU HOW HOORIFIED HE WAS --THERE HAS BEEN TERROR IN HIS EYES AND TEARS  HE IS SO FEARFUL IT BREAKS MY HEART THAT HE HAS HAD TO GO THRU THIS.  AFTER A WEEK  WE ARE JUST NOW SETTLING INTO A DEGREE OF ACCEPTANCE BUT WE STILL HAVE WORK AHEAD OF US--

THIS AFTERNOON IS THE FIRST VISIT BACK TO THE HOSPITAL AND WE HAVE TO GO BY MEDI-VAN SO I WILL BE THE FIRST TIME HE HAS TO ACTUALLY GET UP INTO A WHEEL CHAIR AND MOVE AROUND  --I AM SURE I WILL BE ADDING MORE  SO WISH US LUCK

THE ONLY REASON IM WRTING ABOUT THIS IS I HOPE THAT I MIGHT BE ABLE TO HELP SOMEONE ELSE WHO MAY NEED SOME INSIGHT AS TO HOW HANDLE A SIMILAR SITUATION--THE MOST IMPORTANT THING IS BEING CREATIVE  AND KNOWING WHAT WORKS FOR YOUR CHILD  A DISABILITY WITH AN ADDED DISABILITY IS COMPLICATED ESPECILLY WHEN OR "GUYS" CANT REASON LIKE A NEURO-TYPICAL PERSON   WE HAVE TO BE ON THEIR LEVEL TO HELP THEM COPE IN THEIR DIFFERENT WAY!

WELL DAKOTA IS CALLING ME  CANT LEAVE HIM ALONE   WILL WRITE MORE LATER THANK YOU TO ALL WHO HAVE LOGGED ON  HOPE I HELP SOMEONE .   

JUST ANOTHER DAY IN PARADISE

WELL MY TITLE SAYS IT ALL

DAKOTA FELL AT SCHOOLWEDNESDAY AND SUSTAINED A SPIRAL FRACTURE TO HIS LEG IN 3 PLACES.THE ACTUAL BONE WAS COMPLETELY SEVERED IN 2 OF THE 3 SPOTS. IT MAKES ME SICK TO MY STOMACH ON MANY LEVELS BUT MOST OF ALL HOW INCREDIBLY TRAUMATIZED HE IS THAT HE WILL HURT HIMSELF AGAIN.

FIRST OFF I AM TO SAY THE LEAST PISSED THAT HE WAS OUT IN THE    "NORTH 40"OF THE CAMPUS WHEN HE SHOULD HAVE BEEN AT THE CAFETERIA OR THE QUAD FOR LUNCH BUT MORE SO THAT HIS AIDE AND THE TEACHER WERE IN CLOSE PROXIMITY BUT  NIETHER SAW HIM DO THIS. I REALIZE THAT DAKOTA NEEDS TO DEVELOP  INDEPENDENCE BUT I CANT HELP BUT THINK THAT, OF COURSE,THIS WHOLE THING COULD HAVE BEEN AVOIDED. THAT BEING SAID  WHAT HAS HAPPENE HAS HAPPENED AND YOU HAVE TO NOW ADDRESS THE NEW SET OF CIRCUMSTANCES.

I AM TRYING TO EDIT THE STORY SO IT IS NOT TOO TEDIOUS OR WORDY. FOR THE MOST PART THE INTIAL EXPIERENCE WAS OVERWHELMING AND HAS GENERATED A WHOLE LOT OF ANXIETY FOR NOT ONLY DAKOTA BUT MYSELF AND I AM JUST GETTING TO THE POINT WHERE I CAN BEGIN TO DISECT WHAT NEEDS TO BE .

THE E.R. WHAT A DISASTER THIS PHASE WAS--I KNOW THAT THEY HAVE TO PRIORITIZE ACCORDING TO EMERGENCY BUT COMING INTO THE ER THE FIRST ENCOUNTER WAS WITH A "MEDICAL PROFESSIONAL" WHO WAS SO IGNORANT ABOUT MY SONS AUTISM I JUST WANTED TO SHAKE HIM BY THE SHOULDERS AND TELL HIM TO  PULL HIS HEAD OUT OF HIS ASS. SORRY-- THEY ASKED DAKOTA TO RATE HIS PAIN ==== HA ==== FIRST OF ALL DAKOTA HAS AN EXTREMELY HIGH TOLERANCE FOR PAIN AND 2ND HE WILL NOT VERBALLY EXPRESS AND ANSWER. HE WAS IN THE ER WAY TO LONG BUT I GUESS EVERYONE THINKS THTS WHEN HEY ARE IN THERE WAITING FOR THEIR TURN TO BE SEEN.  WHEN THEY FINALLY GOT HIM XRAYED ALL OF A SUDDEN THEY STARTED HOPPING TO IT. THEY REALIZED THAT THIS KID WAS NOT COMPLAINING ABOUT SOMETHING THAT ANY OF US WOULD BE SCREAMING ABOUT.

AFTER ANOTHER COUPLE OF HOURS OF ASSESSMENT AND ONSULTATION DAKOTA HAD PROVED ALL IN THE ER WRONG WHEN HE  TOLERATED THEM IGNORING HIM AT FIRST THEN POKING AND PRODING HIM TO PREPARE HIM FOR SETTING HIS LEG--THEY ALL EXPECTED HIM T BE TROUBLE AND I THINK HE TAUGHT A FEW OF THE A LESSON------- 

LONG STORY SHORT --HE REQUIRED A 3 AND HALF HOUR SURGERY AND FINALLY ENED UP IN A ROOM ABOUT 11 PM.THE NURSING STAFF ON THE FLOOR WAS STELLAR AND I HAVE TO SAY THAT THERE WASNT ONE NURSE THAT DIDNT LIVE UP TO THE WAY I THINK A NURSE SHOULD BE. 

LEAVING THE HOSPITAL WAS A NIGHTMARE AND THE DISCHARGE PLANNER WAS THE ONE PERSON WHOS NECK I WOULD LIKE TO RING --NEEDLESS TO SAY EVERTHING HE WAS SUPPOSED TO TAKE CARE OF HE DROPPED THE BALL.BUT WE MADE IT THRU FAUZ PAS AND ALL WIH OR WITHOUT THIS GUYS HELP.

WE HAVE JUST SETTLED IN AT HOME AND REFLECTING ON THE HOSPITAL EXPIERENCE IT IS KIND OF SEPARATED INTO  2 DIFFERENT TOPICS : DAKOTAS TRIALS AND TRIBULATIONS AND THE HOSPITAL LOGISTICS. I WILL FOLLOW UP ON BOTH IN FUTURE ENTRIES FOR OW JUST WANTED TO GET A POSTING ON THE BLOG SINCE I TRY TO POST AT LEAST ONCE A WEEK IF NOT MORE.

JUST ANOTHER DAY IN PARADISE AND LIVING WITH AUTISM!                        MAYBE THE NEXT THING ON MY TO DO LIST IS TO BE A CONSULTANT FOR THE HOSPITAL WHEN DEALING WITH AUTISTIC PATIENTS ! ! ! ! ! ! ! !