GO WITH YOUR GUT

I HAVE TO ADMIT THAT SOMETIMES EVEN WITH 18 YEARS UNDER MY BELT AND ALL THE INFO I HAVE BEEN EXPOSED TOO  I FEEL VERY INADEQUATE WHEN IT COMES TO READING UP ON EVERY THERAPY AND EDUCATING MY SELF ON THE CUTTING EDGE OF "CURES" OR THERAPIES.

HOWEVER I FEEL THAT EVERY SITUATION IS DIFFERENT AND EVERY CHILD WHO HAS AUTISM IS DIFFERENT AND YOU HAVE TO GO WITH WHAT MAKES YOU COMFORTABLE.  WHAT IT BOILS DOWN TO IS BEING OK WITH WHAT YOU DO FOR YOUR KIDS. I BELIEVE THAT THEE ARE ALOT OF OPINIONS THAT IF YOU JUST TRY THIS THING OR SHOVE THIS MEDICINE DOWN OR FOLLOW THIS REGIMENT THAT ALL OF YOUR PROBLEMS WILL GO AWAY.... WHAT I HAVE COME AWAY WITH AFTER 18 YEARS IS THAT  YOU HAVE TO GO WITH YOUR GUT. IF YOU KNOW THAT SOMETHING IS RIGHT OR WRONG YOU WILL KNOW IT IN YOUR GUT, DONT LET ANYONE TALK YOU DOWN OR OUT OF IT----                 YOU DONT HAVE KNOW EVERYTHING ABOUT EVERY SOUTION JUST THE ONES THAT YOU THINK WILL BENEFIT YOUR CHILD .PLEASE DONT BE AFRAID TO TRY SOMETHING AND GIVE IT UP IF IT DOESNT WORK. DONT BE SO DESPERATE TO MAKE SOMETHING WORK  RELAX AND OBSERVE AND IF IT ISNT GOING THE WAY YOU WANT THEN---GIVE IT UP!!!!!

WHETHER IT BE A PERSONAL RELATIONSHIP OR LIVING WITH AUTISM EVERYDAY LISTEN TO YOUR HART AND MAKE SURE THAT THE MESSAGE WAS SENT BY YOUR GUT!!!!!!!

UC COMES TO AN END

TONIGHT WE HAD TO SAY GOODBYE TO THE CAL STATE SAN BERNARDINO UCDD [ UNIVERSITY CENTER FOR DEVELOPMENTAL DISABILITIES ] PROGRAM FOR THOSE WHO DO NOT KNOW IT IS A CENTER THAT WORKS WITH OUR KIDS ONE ON ONE FOR APPROX. 3 HOURS ONE TIME A WEEK WITH INTERRUPT AND RE-DIRECTIVE THERAPY. WHILE THE CHILDREN ARE WORKING THERE IS A REQUIRED PARENT SUPPORT GROUP COUPLED WITH AND AN ACTIVITIY CENTER FOR SIBLINGS.

THIS HAS BEEN AN UNBELIEVEABLE PROGRAM FOR DAKOTA.HE HAS JUST BECOME SO ATTACHED THAT HE ASKED ME TONIGHT"WHAT ARE WE GOING TO DO ON TUESDAY NIGHTS NOW?" IT WAS HEARTBREAKING YET IT WAS A HAPPY MOMENT TO THINK THAT HIS REASONING AND LANGUAGE HAS PROGRESSED.

THIS PROGRAM HAS GIVEN ME INFORMATION AND STRENGTH TO STAND UP FOR SO MUCH MORE THAN I WOULD HAVE EVER BEEN ABLE TO DO -- AND MEET PEOPLE FROM ALL WALKS OF LIFE IN DIFFERENT SITUATIONS YET DISCOVER COMMON GROUND THAT WE ALL SHARE AS PARENTS OF CHILDREN GOING THRU THIS HELL THAT THEIR DISABILITY GIVES THEM.

THE COMBINATION OF ALL I HAVE LEARNED  AND HEARD FROM OTHER PARENTS IN THIS PROGRAM AS WELL AS IT COMING TO AN END FOR US IS EXACTLY WHAT HAS STARTED THE IDEAS FOR THE CENTER MENTIONED  IN THE BLOG A DATED EARLIER IN MARCH..... [2 OR 3 ARTICLES BELOW] IT IS SO OBVIOUS TO ME THAT THERE IS SUCH A GREAT NEED FOR SO MANY ITS  A    NO-BRAINER WE NEED TO START SOMETHING TO CONTINUE WHAT THE UCDD PROGRAM HAS STARTED. AND THAT IT BE AS ALL INCLUSIVE AS ANY PARENT NEED IT TO BE. WE NEED TO ADDRESS EVERY NEED FOR EVERY INDIVIDUAL AND FAMILY WHETHER WE PLAY A SMALL PART OR SOMETHING ALL INCLUSIVE!

THIS NEW CENTER HAS BEEN TAGGED AS AMBITIOUS ALL THE WAY TO TO MANY THINGS UNDER ONE ROOF BUT FOR NOW I WILL TRUDGE ON PUSHING  AND CLAWWING FOR EVERY SINGLE THINGANT ONE PERSON NEEDS BECUASE I KNOW WHAT PARENTS HAVE GONE THROUGH AND WHAT THEY WANT AND WHAT THEY MIGHT NEED IN THEIR SITUATIUON AND OUR COMMITMENT IS TO DO EVERYTHING POSSIBLE TO HELP.

FOR NOWW STRUUGLE WITH THE ABSENCE OF A MUCH NEEDED PROGRAM IN OUR LIVES BUT I CLOSE WITH THE GREAT HOPE AND DREAM THAT THERE WILL SOON BE ANOTHER ONE TO REPLACE IT!

THOUGHTS FOR THE WEEK

WELL HERE ANOTHER WEEK HAS SLIPPED BY AND I FIND MYSELF ONCE AGAIN IN A NEW PLACE. I HAVE ADDED THE PROPOSAL FOR A POTENTIAL CENTER THAT I HAVE BEEN WORKING ON WITH GIL --HE IS AN EDUCATOR IN THE INLAND EMPIRE AND SEEMS TO HAVE ALOT OF THE SAME VISIONS AND IDEAS AS I DO FOR OUR KIDS.

SO MANY ARE FOCUSING ON RESEARCH AND A "CURE" FOR AUTISM WHICH IS GREAT AND WONDEFUL AND BELIEVE ME I WILL THE FIRST IN LINE AND THE FIRST TO CHEER IF EVER WE GET TO THAT POINT BUT IN THE MEANTIME ALL OF US LIVE WITH AUTSM EVERYDAY AND THE REALITY OF THAT IS WE NEED SUPPORT HELP ADVICE AND SOLUTIONS FOR TODAY. HOW MANY KIDS ARE OUT THERE WHO NEED  AND APPROPRIATE PLACEMENT AND THE SCHOOLS JUST CANT GET I RIGHT?HOW AMNY OF US HAVE QUESTIONS OR NEED SOMEONE TO TALK TO AND DONT KNOW WHERE TO GO??? WELL THERE PLENTY OF PEOPLE WITH MIRCOSCOPES AND STUDIES BUT HOW DOES THAT HELP OUR EVERY DAY LIFE???

I URGE ANY ONE WHO READS THIS AND HAS ANY INTEREST TO PLEASE EMAIL THIS ADDRESS AND PASS IT ON TO ALL WHO MIGHT BE INTERESTED>

AS FOR THE REST OF THE PAST WEEK THINGS HAVE BEEN A LITTLE SMOOTHER.DAKOTA CONTINUES TO BE VERY INSISTANT ON ROUTINE AND SCHEDULE BUT WE ACTUALLY HAD A DAY WHEN HE DEVIATED FROM HIS DINING SCHEDULE.WE WERE IN SCHOCK AND  DELIGHT. WHEN YOU SEE A SMALL RAY OF LIGHT IT ENCOURAGES YOUR HOPE THAT THINGS CAN CHANGE. I LIVE FOR THOSE MOMENTS. 

HAVING AN ISSUE AT SCHOOL JUST THE PAST COUPLE OF WEEKDWHERE DAKOTA IS DUMPING HIS LUNCH WITHOUT EATING IT.WE HAVE STARTED DIALOGUE AND I AM IN THE PROCESS OF WRITTING A SOCIAL STORY ABOUT LUNCH AND THE CAFETERIA. I WILL WRITE MORE WHN I GET IT FIGURED OUT A LITTLE MORE.

NEED TO GET CRACKIN' ON THIS POTENTIAL CENTER WILL START CONTACTING SOME OF MY OWN LINKS TO ASK QUESTIONS ON HOW TO GET STARTED . I HOPE THAT THE WORD WILL SPREAD   I KNOW THERE IS A NEED. BIG DREAMS

POSSIBLE NEW CENTER FOR AUTISM 1

THE VISION FOR A CENTER

SERVING

AUTISM ANDP.D.D.SPECTRUM

[PERVASIVE   DEVELOPMENTAL DISORDERS]

 

PURPOSE: TO PROVIDE A “ONE STOP SHOP”

FOR AUTISM

THE VISION IS TO PROVIDE OR ADDRESS EVERY ASPECT OF LIVING WITH AUTISM ON AN ONGOING BASIS.

THIS WILL BE INCLUSIVE OF PARENT AND SIBLINGS SUPPORT, ACADEMIC AND LEARNING ENVIROMENTS, THERAPIES, COMMUNITY BLENDING,

JOB TRAINING, RECREATIONAL OPPORTUNITIES AND DAILY LIVING SKILLS.

 

THE FACILITY: SHOULD HOUSE THE BEST OF ALL WORLDS.THERE IS A NEED FOR A COMPUTER LAB, LIBRARY, MUSIC ROOM, SCREENING ROOM/THEATER, ART ROOM, KITCHEN, GYM, YARD AND GARDEN AREA, WITH HOPE OF A POOL AND SPECIALIZED PERSONAL NEEDS ACCOMODATIONS.ABOVE ALLTHE FACILITY SHOULD HAVE THE ABILITY TO PROVIDE SPACE FOR PARENT AND SIB SUPPORT AND SPECIALIZED CLASSROOM AREAS FOR PRIVATE SCHOOL.

 

THE EXECUTION: THE VISION IS TO STYLIZE EACH PROGRAM FOR THE INDIVIDUAL.JUST AS WE REQUIRE THE SCHOOLS AND OTHER AGENCIES TO ADOPT

INDIVIDUAL EDUCATION PLANS SO WILL THE CENTER.EACH FAMILY WILL DECIDE WHAT INVOLVEMENT AND TO WHAT EXTENT THEY PARTICIPATE. WHETHER IT BE ONLY FOR SUPPORT OR RECREATIONAL OR FULL SERVICE INCLUDING SCHOOL AND LIVING SKILLS.

 

THE MANPOWER: THERE WILL BE A GREAT NEED FOR CREDENTIALED STAFF AS WELL AS PROFESSIONALS IN MANY AREAS. THE HOPE IS TO GENERATE THE CENTER ON AN EMPHASIS OF VOLUNTEERS AND PARENTAL INVOLVEMENT.

 

THE FUNDING: IT WILL BE IMPERATIVE TO SECURE FUNDING THROUGH SCHOOL DISTRICTS AND OTHER AGENCIES TO SUSTAIN OUR EXISTANCE BUT IT WILL BE OUR HOPE THAT PERSONAL INVOLVEMENT  AND COMMITMENT WILL ALLOW US TO THRIVE.

WE NEED TO ESTABLISH A FOUNDATION OR ORGANIZATION AS NOT FOR PROFIT AND EXPLORE ANY AND ALL OPPORTUNITIES TO GET SPONSERS AND HAVE FUNDRAISING CAPABILITY.

THE BIGGEST HURDLE IS TO FIND A PLACE AND GET STARTED AND MOLD THE CENTER INTO EVERYTHING IT CAN BE FOR AUTISTIC INDIVIDUALS WHETHER THEY ARE 3   33 OR  63

 

THE PUBLICITY: WILL RELY  ON A GREAT DEAL OF “WORD OF MOUTH” WOULD LIKE TO ESTABLISH A WEB SITE AND SERVICE ALL WHO HAVE ANY INTEREST INCLUDING SERVICE PROVIDERS, PROFESSIONALS AND TEACHERS.MUST CONTACT THOSE WHO ALREADY WORK IN THE RELATED FIELDS TO HELP US FIND THOSE WHO NEED AND WANT HELP.

 

THE RELATED SERVICES: ALSO PLAN TO HAVE SERVICES SUCH AS SHUTTLE SERVICES, ESTATE PLANNING, REFERRAL TO ADVOCATES, ASSIST WITH MEETINGS AND I.E.P.’s, SOCIAL AND RECREATIONAL ACTIVITIES AND JOB TRAINING

 

THE SUMMATION: THE CENTER WILL STRIVE TO BE WHAT EVERY PARENT WANTS FOR THEIR CHILD.

THE LEAST RESTRICTIVE ENVIROMENT

AND

A FREE AND APPROPRIATE EDUCATION

WITH A CHERRY ON TOP!

BATHTIME TIP

IT OCCURRED TO ME THAT I HAD NOT YET WRITTEN ABOUT HOW WE TACKLE BATHING IN OUR HOME. AS YOUR CHILD GETS OLDER BATHING KIND OF EVOLES INO ROUTINE CONVIENENCE AND ACCOMDATION OF THE DISABILITY.

FOR DAKOTA I FOUND THAT THE "ONE STOP SHOPPING" IS THE MOST PRACTICAL. PARDON THE EXPRESSION BUT "SHIT SHOWER AND SHAVE" IS ANOTHE WAY TO PUT IT. I PURCHASED A RATHER LARGER 2 TIERED SHOWER RACK TO HOUSE ALL THE SOAPS AND GROOMING TOOLS. THE SHAMPOO {BABY SHAMPOO SO IF IT GETS IN THE EYES WE DONT HAVE  PROBLEM WITH BURNING} FACIAL CLEANSER FOR THE ANY BREAKOUTS , TOOTHPASTE {WE HAVE THE KIDS CREST FOR DAKOTAS PERSONAL PREFERRENCE BUT ALSO BECUASE OF ITS MILD ABRASIVNESS} TOOTHBRUSH {BATTERY OPERATED FOR BETTER BRUSHING} PUMP SOFT SOAP -ANTI BACTERIAL FOR SPECIAL CLEAN UP DETAIL ANDWE USE THE NUETROGENA MENS POWER SPORT BAR FOR GENERAL CLEANNG.THIS ONE IN PARTICULAR BECAUSE THE SOAP IS ENCAPSULATED IN A SCRUB SACK SO NO WASH CLOTH IS NECESSARY. IF YOU HAVE ISSUES WITH FINE MOTOR SKILLS THIS IS A GOD SEND CUZ TE KIDS DONT HAVE TO STRUGGLE WITH A WASHCLOTH TYING TO SUDS UP THE SOAP AND DEALING WITRH FRUSTRATION WHEN THE SOAP CONSTANTLTY SLIPS AWAY.

SHOWERING HAS BECOME A ROUTINE IN THE MORNING FOR DAKOTA WHICH EMHANCES THE START OF HIS DAY.HE GETS UP AND IMMEDIATELY GOES TO THE SHOWER--HE NEEDS HELP ADJUSTING THE WATER TEMP  BUT THEN HE CAN JUMP IN  HE PEES FIRST--I KNOW ITS GROSS TO MENTION IT BUT THERE IS NO FIGHT NO BATHROOM ROUTINE TO WORRY ABOUT AND BECAUSE HE DOES NOT USE THE BATHROOMS AT SCHOOL IT IS NECESSARY FOR HIM TO PREFORM THIS TASK BEFORE LEAVING FOR SCHOOL SO HIS DAY IS SMOOTH  WE ALSO HAVE A RADIO IN THE BATHROOM TO KEEP THE MOOD UPBEAT HE THEN SOAPS UP HIS ENTIRE BODY [I EMPHASIZE THAT HE HAS GOT TO GET THE POTENTIALLY STINKING PARTS ''the pitts and the crack" once again i know gross but thre is a purpose] THEN HE  RINSES AND BRUSHES HIS TEETH. WE HAVE SCHEDULE SHAMPOOING EVERY 5 DAYS  OR AT LEAST EVERY SATURDAY WE HAVE VERY DRY SCALP AND ITS NOT NECESSARY TO SHAMPOO EVERYDAY .

EVERYONE HAS THEIR OWN WAY OF DOING THINGS BUT I HOPE THAT I MIGHT BE ABLE TO HELP EVEN ONE PERSON WHO MIGHT BE STRUGGLING WITH BATHTIME. PERHAPS ONE PIECE OF THIS ROUTINE WILL FIT OR GIVE ANOTHER PERSON AN IDEA OF HOW TO AGUMENT THEIR NEEDS .     

RESPIRIDOL

DAKOTA HAS BEEN TAKING AN EXTREMELY LOW DOSE OF RESPIRIDOL SINCE ABOUT 1999. IT HAS BEEN VERY EFFECTIVE AND I CANT TELL YOU HOW LONG I FOUGHT ANY MEDS AT ALL AND I AM STILL ADAMANT ABOUT NOT USING DRUGS IF AT ALL POSSIBLE. IN FACT THERE ARE MANY PARENTS THAT HAVE THEIR KIDS ON SO MANY DIFFERENT SCRIPTS THAT I AM NOT SURE HOW THEY KNOW WHAT DRUG IS HELPING WHAT SYMPTOM. NOW I AM CETAINLY NOT JUDGING THEM OR THEIR DECISIONS --I JUST WANT TO DO WHAT WORKS FOR US  AND RIGHT NOW THAT IS A LOW DOSE OF RESPIRIDOL.
WE HAVE BEEN GIVING DAKOTA LESS THEN 1 MG OF RESIRIDOL A DAY AND I HAVE BEEN TOLD BY COUNTLESS INDIVIDUALS THAT ITS NOT ENUF TO MAKE A DIFFERENCE--[BUT IT HAS MADE A DIFFERENCE FOR HIM] WELL A WEEK AGO WE WENT FOR A CHECK UP AND DAKOTAS DOCTOR RECOMMENDED US TRYING TO REDUCE THE DOSEAGE TO TAKE HIM OFF OF IT SINCE HE HAS BEEN DOING SO WELL  AND SELF MONITORING HIMSELF WHEN HE GETS ESCALATED. I TOLD HIM THAT I HAD ALREADY STARTED REDUCING A WEEK BEFORE THE APPOINTMENT AND I HAD NOT SEEN ANY CHANGE IN PROBLEMS  SO HE TOLD ME TO CONTINUE FOR ANOTHER WEEK AS I WAS DOING  THEN TAKE HIM DOWN ANOTHER .25 MGS
WELL I AM TRYING WITH EVERYTHING I CAN : TO NOT BLAME THE REDUCTION OF THIS DRUG TO BEHAVIORS THAT HAVE ERUPTED THE PAST 10 DAYS OR SO BUT I HAVE TO SAY  THAT I HAVE SEEN TWICE AS MANY "EPISODES"   IT BOTHERS ME CUZ I WANT HIM TO BE DRUG FREE BUT I WANT A QUALITY OF LIFE FOR HIM AND IF THE DRUG GIVES HIM A QUIETER EXSISTANCE THEN  I GUESS HE WILL CONTINUE THE REGIMENT.
I GUESS WE ALL HAVE TO DECIDE WHATS BEST FOR OUR KIDS BUT I THINK SOMETIMES THINGS ARE DECIDED FOR US AND IT GETS BACK TO GONG WITH WHATS IN YOUR GUT. IF YOU KNOW  SOMETHING IS RIGHT  THERES NO SENSE TO TRY TO EXPLAIN IT AWAY  

4 HOURS

AS A PARENT OF A AUTISTIC CHILD I AM SURE YOU ARE FAMILIAR WITH THE PHRASE "PICK YOUR BATTLES". WELL LAST FRIDAY I DID ; AND I ACTUALLY LEARNED SOMETHING IN THE PROCESS TOO!

THIS PARTICULAR CONFRONTATION WAS OVER BANDAIDS .  THATS RIGHT  BANDAIDS. DAKOTA HAS BEEN SOMEWHAT PRE=OCCUPIED OVER HAVING BANDAIDS PUT ON [WHICH IS AN ATTENTION SEEKNG BEHAVIOR] HIS FINGERS TO "REMIND" HIM NOT TO CHEW OR PUT HIS FINGERS IN HIS MOUTH. HE HAS BEEN SOMEWHAT SUCCESSFUL IN SLOWING THIS SELF INJURIOUS BEHAVIOR BY USING THIS TYPE OF REMINDER SO I HAVE OBLIGED HIM.

HE CAME TO ME AFTER SCHOOL AND SHOWED ME THAT HIS BANDAIDS HAD EITHER FALLEN OFF,FELL OFF OR WERE PULLED OFF AN WITHOUT WORDS  BASICALLY INDICATED THAT HE NEEDED MORE BANDAIDS. I TRIED TO PUT HIM OFF FOR AWHILE BUT I REALIZED THAT IT WAS PETTY AND TO JUST  GO ALONG WITH HIS REQUEST. MINUTES LATER HE LOOKED RIGHT AT ME AND PULED OFF THE BANDAIDS [ THAT I HAD JUST PUT ON ].THE GAUNTLET WAS THROWN DOWN AT THAT MOMENT AND I CHOSE TO TAKE THIS BATTLE.

SO INSTEAD OF REPLACING THE BANDAIDS I GRABBED THE VICKS [VAPO-RUB] AND SAID THAT IF HE WAS GOING TO PULL OFF THE BANDAIDS I WOULD PUT SOMETHING ON THAT HE COULDNT PULL OFF AND COVERED HIS FINGERS LIGHTLY WITH THE VICKS JUST TO GIVE THEMA SCENT TO KEEP OUT OF HIS MOUTH. NEEDLESS TO SAY THE FIGHT WAS ON ---DAKOTA FLIPPED OUT GROWLING AND  WHINNING  CRYING AND YELLING  BASICALLY PISSED OFF AT ME BECAUSE I BEAT HIM AT HIS OWN GAME. HA HA  THE JOKE WAS ON ME. FIRST HE GRABBED THE BOX OF BANDAIDS AND FLUNG THEM ALL OVER HE BEDROOM FLOOR WE ARE TALKING ABOUT 60 TO 80 BANDAIDS-I IGNORED IT  THEN I TOLD HIM THT HE WOULD NOT GET HIS TRADITIONAL REWARD ON FRIDAY JACK IN THE BOX IF HE DIDNT PICK THE BANDAIDS UP-HA HA  THEN  WE WENT TO THE NEXT LEVEL HE STARTED GRABBING AT THEM ON THE FLOOR AD THROWING THEM AT ME---I IGNORED  CONTINUING TO RE-ITERATE NO JACK IN THE BOX UNTIL YOU PICK THEM UP-- GRANDMA WALKED IN TO TRY TO REASON WITH HIM THEN HE GRABBED A HANDFUL OF BANDAIDS A SHOVED THEM IN HIS MOUTH OF COURSE GETTING A REACTION FROM HER.      I IGNORED - - THIS STARTED ABOUT  430 PM- - I MERELY STATED TO HIM THAT THOSE BANDAIDS WOULD STAY ON THAT FLOOR UNTIL HE WAS 55 BUT HE WAS GOING TO PICKTHEM UP AND THAT THERE WOULD BE NO REWARD EITHER. AS THE HOURS PASSED I CONTINUED TO WALK OVER THEM AND HE TRIED TO BAIT ME INTO CONVERSATION ABOUT THEM BUT I ONLY MADE CONSILIATORY COMMENTS LIKE I WILL HELP YOU PICK THEM UP ; ALL YOU HAVE TO DO IS ASK FOR HELP. I WENT INTO THE KITCHEN AND GOT HIM A BASKET TO PLACE THE BANDAIDS IN AND TOLD HIM IF HE PICKS THEM UP I WILL HELP PUT THE BACK I THE BOX 

4 HOURS LATER  HE FINALLY CONCEDED ABOUT 830 PM THE BATTLE WAS OVER  AND HE DID GET JACK IN THE BOX AS A REWARD

THE LESSON I LEARNED IS SOMETIMES IT TAKES OUR KIDS 4 HOURS,10 HOURS, 2DAYS OR 3 WEKS TO GET SOMETHING THAT A NEURO-TYPICAL CHILD CAN GRASP USUALLY IN A MATTER OF MINUTES OR REPETITIONS. IT IS QUITE APPARENT TO ME THIS IS ONE OF THE REASONS THAT OUR CHILDEN HAVE SUCH A DIFFICULT TIME IN TRADITIONAL EDUCATION SETTINGS. EVEN IF YOU HAVE TEACHERS AIDES AND OTHERS WHO KNOW YOUR CHILD; TRADIONAL CLASROOM SETTINGS DO NOT LEND THEMSELVES TO "PICKING A BATTLE". FAR BE IT FROM ME TO MAKE EXCUSES FOR TEACHERS OR THE EDUCATIONAL SYSTEM BUT HOW CAN WE EVEN EXPECT A TEACHER TO ENGAGE IN A BATTLE THAT IS INTERRUPTED BY THE SCHEDULE OR ROUTINE OF THE CLASS AND  THE OTHER CHILDREN EVEN OTHER AUTISTICS THAT NEED THE SAME  ATTENTION ? WHEN I THINK ABOUT THE VARIOUS TRANSITIONS IN SCHOOL FROM TASK TO TASK  RECESS  LUNCH  P.E. AND OTHER INTERRUPTIONS HOW CAN A TEACHER TAKE ON SOMETHNG AS SIMPLE AS A  4HOUR BATTLE??? OH I EXPECT IT BUT FOR THE FIRST TIME I REALIZE WHY WE GET SO MUCH RESISTANCE--ITS NO EXCUSE W HVE TO INSIST ON ACCOMODATIONS BUT I THINK THATS THE KEY   THAT IS WHAT I ACTUALLY LEARNED. WE HAVE TO MAKE THE ADMINISTRATORS AS WELL AS THE TEACHERS AWARE THAT IT IS EXPECTED AND CERTAIN THINGS HAVE TO BE UNDERSTOOD    NO MATTER WHAT THE CLASS DYNAMICS THIS IS HOW OUR CHILDREN LEARN AND EVEN IF IT TAKES 4 HOURS  THIS IS WHAT OUR KIDS  MUST HAVE.  NO EXCUSES     THEN WE HAVE TO MAKE SURE ITS DONE!

HARD DAYS NIGHT

GOSH ANOTHER WEEK HAS GONE BY AND TONIGHT WAS PARTICULARLY HARD.DAKOTA RETURNED FROM BEING WITH HIS FATHER WHICH IS ALWAYS A LITTLE TOUCHY JUST BECUASE ITS TRANSITION .CHANGE. BUT TONIGHT WE HAD ANOTHER GO AROUND WITH THE 10 OCLOCK BEDTIME ISSUE. I HAVE ACCEPTED IT FOR THE TIME BEING AND HAVE DECIDED THAT IT IS NOT A BATTLE I WISH TO UNDERTAKE FOR NOW.I HAVE BEEN ABLE TO CONVINCE HIM THT THERE ARE EXCEPTIONS TO THE RULE. AND WE ARE DEVELOPING DIALOG ABOUT THOSE TIMES THAT GOING TO BED AT TEN ON THE DOT JUST IS NOT POSSIBLE.  BUT TONIGHT WAS DIFFERENT. 15 TO 20 MINUTES BEFORE TEN OCLOCK HE STARTED  GETTING ESCALATED IN BEHAVIOR FRETTING  POUTNG  REPETITIOUS PHRASES  THEN YELLING  AND SOON AFTER THAT HE WENT TO THE CLOSET AND GOT THE BROOM AND WANTED TO SWAT ME WITH IT --HE STARTED TO SWING ITAROUND  AND I GRABBED IT. INTIALLY I WAS DOING MY BEST TO IGNORE HIS RANTING BECAUSE ATTENTION SEEKING BEHAVIOR GETS WORSE IF YOU ACKNOWLEDGE IT  I WAS WATCHING A TELEVISED ROD STEWART CONCERT AND HE WAS NOT HAPPY THAT I WAS NOT PAYING ATTENTION TO HIM ISTEAD OF THE MUSIC ON THE TV.WHEN HE DECIDED THAT HE COULDNT GET ME AWAY FROM THE SHOW THATS WHEN THIS BEHAVIOR STARTED. IN HIS DEFENSE HE WAS ALSO UPSET THAT I HAD THE VOLUME TURNED UP A LITTLE MORE THAN NORMAL TO ENJOY THE MUSIC AND ACTUALLY I WAS TRYING TO GET HIM INTERESTD IN THE MUSIC ALSO. THERE IS A POSSIBILITY THAT THE THE VOLUME COULD HAVE BEEN THE PRE-CURSOR FOR THE BEHAVIOR BUT I REALLY BELIEVE IT WAS AN ANXIETY ATTACK THAT HE DIDNT HAVE MUCH CONTROL OVER---HE STARTED RANTING ABOUT BEING IN BED AT TEN AND THAT IT WAS PASSED TEN WHEN  IT WAS 945. ALTHOUGH I TRIED REPEATEDLY TO POINT OUT TO HIM THAT WE HAD A FEW MINUTES AND IT WAS OK HE CONINUED TO ESCALATE. WHEN HE CAME SWINGING WITH THE BROOM THAT IS WHEN I FINALLY HAD NO CHOICE BUT TO ACKNOWLEDGE HIM.I COMMENDEERED THE BROOM FROM HIM AND POINTED OUT NUMEROUS TIMES THAT IT WASNT 10 YET AND TO CALM DOWN BY THAT TIME I LOST IT IN ALL HONESTY IT WAS AN INTENSE  OCCURANCE BUT IT WAS REALLY RATHER BRIEF WITHIN 15 MINUTES OR WHEN IT WAS 10 OCLOCK AND HE SAW THAT WE WERE GONG TO BE IN BED HE STARTED TO SETTLE IN AND ACTUALLY SAID HE WAS SORRY ONCE  HE WAS SECURE IN HE FACT THAT  HE WOULD BE IN BED BY TEN 

SO A HARD DAYS NIGHT    I SURE THERE ARE MORE TO COME AND YOUJUST HAVE TO TAKE THEM ONE AT A TIME .KEEP ON YUR TOES AND KEEP THINKING OF WAYS TO DIVERT OR REDIRECT THE BEHAVIOR.

QUALITY OF EVERYDAY LIVING

I HOPE I AM NOT REPEATING MYSELF BUT I FEEL COMPELLED TO PUT THIS OUT THERE.  MY SON WHO IS ON THE DOWN SIDE OF SCHOOL -VERY CLOSE TO GRADUATION-PROBABLY THE NEXT YEAR OR SO IS IN A PLACE WHERE EACH AND EVERY PARENT AND CAREGIVER IS GOING TO BE SOMEDAY WHEN THEIR LITTLE CHILDREN GROW UP AND STILL NEED CARE AND ATTENTION THAT A "NEURO TYPICAL"CHILD WILL NOT NEED.

WE HAVE TO PREPARE OUR KIDS TO BE ABLE TO COPE IN THE COMMUNITY  AND BY THE SAME TOKEN WE HAVE TO PUT THE COMMUNITY ON NOTICE THAT OUR KIDS WILL BE OUT THERE AND NEED TO BE ACCEPTED AND POSSIBLY ACCOMODATED.  AND THERES ONLY ONE WAY- - EXPOSURE - -  DONT LOCK THEM AWAY WHATEVER THEY CAN TOLERATE  GET THEM OUT THERE

I KNOW IT'S A CHALLENGE BUT ITS A QUALITY OF LIFE THING. THE OTHER THING ON MY MIND ALONG THIS THOUGHT IS GENERAL HARMONY IN YOUR HOME  AND AS DIFFICULT AS IT CAN BE  I CANT STRESS ENUF HOW IMPORTANT IT IS FOR EVERYONE.

WE HAVE TO REALIZE THAT WE WILL ALWAYS PRAY FOR A SOLUTION TO AUTISM AND CELEBRATE IN THE STREETS IF IT EVER HAPPENS BUT THE SIMPLE FACT IS THAT OUR KIDS WILL MOST LIKELY LIVE WITH AUTISM THE REST OF THEIR LIVES  SO ITS REALLY IMPORTANT TO SEIZE THE DAY  AN FOCUS ON ACCOMODATING OUR DAILY LIVES LIVING WITH AUTISM   WATCH YOUR CHILD   LISTEN TO YOUR CHILD   MAKE IT AS PEACEFUL AND SIMPLE AS YOU CAN. KNOW WHAT YOU CHILD NEEDS KNOW WHAT YOUR FAMILY NEEDS AND TRY TO FIND A HAPPY MEDIUM BETWEEN THE TWO !  PICK YOUR BATTLES WITH THE AUTISM AND BEHAVIORS  DECIDE WHICH ONE YOU HAVE THE STRENGTH OR TOOLS TO DEAL WITH AND LET THE OTHERS GO---FOR NOW YOU CAN ALWAYS COME BACK TO IT. YOUR CHILD WILL GROW AND BLOSSOM AND CHANGE EVEN WITH BEHAVIORS  BUT REMEMBER WHEN YOU CONQUER ONE ANOTHER WILL COME AND TAKE ITS PLACE   STICK TO WHAT YOU BELIEVE IS RIGHT AND DONT EVER LET ANYONE MINIMIZE WHAT YOU FEEL IN YOUR GUT IS RIGHT FOR YOUR CHILD .BY THE SAME TOKEN TRY TO KEEP LIFE AT HOME AS WELL AT SCHOOL SIMPLE . WE ALL LIVE IN THIS KEEPING UP WITH THE JONES TYPE WORLD AND I THINK ITS SO EASY TO GET CAUGHT UP IN WORRYING ABOUT WHAT YOU DIDNT DO OR YOU THINK SOMEONE ELSE WANTS YOU TO DO.  MOST IMPORTANTLY DONT BEAT YOURSELF UP IF YOU DONT GET SOMETHING DONE OR YOU DONT TRY EVERY TREATMENT. BE PROUD OF YOURSELF FOR JUST LIVING WITH AUTISM AND MAKING IT WORK ...HOWEVER YOU CAN !