EPISODE 4 – Sarah Harris

CARES: IN A WORLD WHERE ONE IN SIX CHILDREN ARE DIAGNOSED WITH A DEVELOPMENTAL DISABILITY THE NEED FOR INTERVENTION SERVICES ARE AT AN ALL-TIME HIGH THE PREVALENCE OF AUTISM IS NOW 1 IN 54 AND JUST LIKE MY TWO CHILDREN WITH AUTISM NONE OF THEIR NEEDS ARE EXACTLY THE SAME APPLIED BEHAVIOR ANALYSIS OR ABA IS HIGHLY EFFECTIVE INTERVENTION FOR AUTISM BUT OUR NEIGHBORING STATES ARE MORE PREPARED TO SERVE WITH 4 TO 19 TIMES MORE BEHAVIOR ANALYSTS THAN WEST VIRGINIA WEST VIRGINIA HAS ONLY 96 BOARD CERTIFIED BEHAVIOR ANALYSTS WITH EVEN FEWER PRACTICING THIS HAS A DEVASTATING EFFECT ON WEST VIRGINIA’S AUTISTIC POPULATION CAUSING FAMILIES HARDSHIP AND STRENGTH PLEASE LISTEN TO CRYSTAL SMITH OF RAVENSWOOD WEST VIRGINIA SHARE HER FAMILY STORY
CRYSTAL SMITH: HELLO I’M CRYSTAL SMITH AND MY HUSBAND AND I HAVE SEVEN BEAUTIFUL CHILDREN AND CURRENTLY FOSTERING ONE JR IS THE LIGHT OF OUR WORLD HE LOVES HIS DISNEY CARS HE LOVES NASCAR MINECRAFT SPONGEBOB HE HATES BREEDING HE HATES TRYING NEW FOODS. HE CAN NAME EVERY NASCAR DRIVER BY THE NUMBER ON THEIR CARS BUT HE ALSO HAPPENS TO BE AUTISTIC WE HAD EARLY INTERVENTION WITH BERTA THREE CAME OUT AND THEY HELPED US TRY TO MEET SOME OF HIS MILESTONES TALKING WALKING FEEDING THINGS LIKE THAT BUT WE QUICKLY NOTICED THAT THERE WAS SOMETHING OFF.  J.R WAS THREE WHEN I FINALLY GOT THE PEDIATRICIAN TO AGREE TO HAVE HIM TESTED TO SEE IF HE WASN’T AUTISTIC AND WE HAD TWO DIFFERENT DIAGNOSES THAT CONFIRMED WHAT I THINK I KIND OF ALREADY KNEW. WITH THAT BEING SAID WHEN HE TURNED FIVE WE HAD THE OPPORTUNITY TO MOVE TO TENNESSEE WITH MY HUSBAND’S JOB. AND THAT WAS GAME CHANGER FOR J.R UP HERE HE WAS TALKING VERY LITTLE REALLY INTERACTING WITH PEOPLE VERY LITTLE AND NOT SHOWING THE THE PROGRESS AND THE GROWTH THAT I WANTED HIM TO SHOW BUT THEY HAD AN AUTISM CENTER IN THE SCHOOL SO HE WAS ABLE TO RECEIVE PT OT MUSIC THERAPY AND ABA THERAPY ON SITE THERE WAS A LOT OF COMMUNICATION AND HE FLOURISHED IN TENNESSEE UH HE PICKED UP ONE MATH HE HE DID DO HIS READING EVEN THOUGH HE DOESN’T LIKE IT HE DID DO IT AND HE JUST GREW SO MUCH AS A PERSON UNFORTUNATELY MY FATHER-IN-LAW WAS DIAGNOSED WITH CANCER
AND WE HAD TO MAKE THE DECISION TO LEAVE TENNESSEE WHERE JR WAS DOING SO WELL OR COME BACK HOME AND SPEND TIME WITH HIM BEFORE HE PASSED AWAY BUT THE SYSTEM UP HERE HAS BELL JR I KNOW ABA CAN’T HELP JR AND MANY OTHERS ON THE AUTISM SPECTRUM I KNOW FIRSTHAND THAT O’HALL BECAUSE HE HAD IT IN TENNESSEE I SAW HOW WELL HE DID WITH THE PROGRESSION THE INCLUSION HE WAS JUST A HAPPIER MORE INVOLVED CHILD NOW THAT WE’RE IN WEST VIRGINIA AGAIN I WOULD DRIVE THE TWO HOURS TO GET TO ABA THERAPY IF IT WAS OFFERED TO US BUT LIKE I SAID WE’RE STILL ON A WAITING LIST THERE’S SO MANY KIDS IN WEST VIRGINIA THERE NEEDS TO BE MORE ABA THERAPISTS AROUND THEY SHOULD BE ONE IN EVERY MAJOR CITY PARKERSBURG CHARLESTON HUNTINGTON THERE SHOULD BE ONE EVERYWHERE SO IT’S EASY TO GET TO SO OUR KIDS CAN GET THE HELP THAT THEY NEED
BG: SO MY GUEST TODAY IS SARAH HARRIS SARAH IS A PUTNAM COUNTY RESIDENT AND SHE IS THE FIRST EXECUTIVE DIRECTOR OF AN ORGANIZATION CALLED CARES AND WE’LL TALK ABOUT THAT MORE IN JUST A MINUTE BUT SHE HAS AN EDUCATIONAL BACKGROUND IN SMALL BUSINESS MANAGEMENT SHE HAS ORGANIZATIONAL LEADERSHIP EXPERIENCE AND DEVELOPMENT SHE HAS 10 YEARS OF BUSINESS MANAGEMENT EXPERIENCE FOUR YEARS OF NON-PROFIT EXPERIENCE BUT MOST IMPORTANTLY AS YOU’RE GOING TO FIND OUT TODAY AS A MOTHER OF A CHILD WITH AUTISM AND ADHD SARAH INTIMATELY UNDERSTANDS THE NEED FOR ADDITIONAL SUPPORT AND ACTIVITIES AND SHE’S VERY DEDICATED TO PROVIDING OPPORTUNITIES FOR ALL CHILDREN WITH FAMILIES AND CHILDREN WITH AUTISM AND FAMILIES AND TO MAKE SURE THAT THEY ALL THRIVE IN THE WORLD OF AUTISM THAT THEY ALL LIVE IN SO SARAH THANK YOU FOR BEING A PART OF THE PODCAST AND WELCOME TODAY

SARAH: THANK YOU BG WELL

BG: LET’S START WITH GETTING TO KNOW YOU WE ALWAYS LOVE TO UH GET A LITTLE HISTORY AND YOU KNOW SORT OF SHAKE HANDS AND FIND OUT A LITTLE BIT ABOUT WHERE YOU CAME FROM AND HOW YOU GOT INVOLVED IN THE IN THE WORLD THAT YOU THAT YOU LIVE IN HERE WITH UH WITH THE CARES ORGANIZATION CAN YOU JUST TELL US A LITTLE ABOUT SARAH

SARAH: ABSOLUTELY WELL UM SARAH GOT INTO THIS WORLD BECAUSE SHE WAS THROWN INTO IT THIS IS NOT SOMETHING THAT I COULD HAVE PLANNED FOR MYSELF UM HOWEVER I THINK LIKE LIKE MOST OF US WHEN WE LOOK BACK IN HINDSIGHT ALL OF THE EXPERIENCES WE’VE HAD TEND TO BUILD ON EACH OTHER AND MAKE YOU THE RIGHT PERSON FOR WHERE YOU’RE AT IN LIFE UM I STILL AM AMAZED EVERY DAY HOW SOME PIECE OF MY PAST COMES INTO PLAY AND I’M LIKE OH THAT’S YOU KNOW USEFUL NOW SO UM BUT YEAH TO ANSWER THAT I WAS A MOM UM MY SON IS NOW 11 YEARS OLD AND WE’VE HAD STRUGGLES UM SINCE HE WAS ABOUT THREE OR FOUR BUT I WOULD HAVE NEVER GUESSED THAT THIS WAS OUR PATH BUT THAT BEING SAID BECAUSE OF THE STRUGGLES THAT WE’VE HAD AND BECAUSE OF THE EXPERIENCES THAT WE’VE SHARED ON THIS JOURNEY I FELT COMPELLED TO DO SOMETHING UM NOT JUST FOR ME AND MY FAMILY BUT FOR THE FAMILIES BEHIND ME WHO WE’RE GONNA HAVE TO GO THROUGH THE SAME THINGS IF SOMETHING DIDN’T CHANGE UM SO I VOLUNTEERED MY WAY INTO A JOB IS HOW I LIKE TO PUT IT BECAUSE
I SHOWED UP WHEN CARES WAS JUST GETTING OFF THE GROUND AND IT WAS ALL VOLUNTEER LED AT THAT POINT AND I WAS HAD JUST LEFT MY JOB MY SON HAD JUST BEEN DIAGNOSED WITH AUTISM AT THE AGE OF EIGHT AND I KNEW THAT I NEEDED TO TAKE CARE OF HIM FIRST AND FOREMOST AND SO UM WHEN I FOUND PEOPLE WHO WERE SPEAKING TO ME AND DOING THINGS FOR ME AND MY FAMILY I WAS LIKE I NEED TO I NEED TO GET INVOLVED AND SO I JUMPED IN HEADFIRST AND JUST THEY NEVER THEY NEVER GOT RID OF ME AND SIX MONTHS LATER I WAS ASKED IF I WANTED TO BE THE DIRECTOR AND I ACCEPTED

BG: I’M VERY EXCITED TO LEARN MORE ABOUT THE ORGANIZATION LET’S TALK ABOUT THAT FOR A MINUTE SO THE ORGANIZATION’S CALLED CARES C-A-R-E-S THAT’S AN ACRONYM AND I SEE WHY YOU MADE THE ACRONYM BECAUSE IT’S A IT’S A NAME THAT YOU COULDN’T REPEAT OVER AND OVER ALL THE TIME BUT IT’S COMMUNITY AUTISM RESOURCES AND COMPLETION SYSTEMS SO LET’S DIG INTO CARE TELL US ABOUT THAT

SARAH: OKAY ABSOLUTELY YEAH THAT IS A MOUTHFUL WHEN WE JUST CUT SOME RADIO COMMERCIALS FOR AUTISM AWARENESS MONTH THAT TOOK UP AT LEAST 10 SECONDS OF OUR AD SO BUT EACH ONE OF THOSE LETTERS ARE IMPORTANT BECAUSE IT’S A SPECIFIC PART OF OUR MISSION THAT WE’RE TRYING TO CONNECT SO COMMUNITY WE WANT FAMILIES AND CHILDREN TO HAVE ACCESS TO ACTIVITIES AND SUPPORTS THAT THEY OTHERWISE WOULDN’T NECESSARILY HAVE ACCESS TO LIKE SUMMER CAMP THAT’S ONE OF THE THINGS THAT WE STARTED WITH AS A CATALYST ALL CHILDREN DESERVE TO HAVE THAT OPPORTUNITY TO EXPERIENCE SUMMER CAMP BUT OUR KIDS OFTEN DON’T AND THAT EXTENDS INTO LOTS OF DIFFERENT THINGS THAT OUR KIDS NEED EXTRA SUPPORTS TO UM ENJOY AND THRIVE IN AND OUR PARENTS NEED THOSE OPPORTUNITIES TO CONNECT TOO BECAUSE THEY ARE FEELING ISOLATED THEY ARE FEELING LIKE THEY’RE DOING IT ALONE AND THEY’RE OVERWHELMED BUT THEY’RE NOT ALONE AND SO FIRST AND FOREMOST WE GOTTA CONNECT COMMUNITY AND BUILD BUILD A SYSTEM OF SUPPORT FOR THESE PEOPLE AND THEN AUTISM OBVIOUSLY THAT’S THE POPULATION THAT WE AIM TO SERVE UM WE DON’T EXCLUDE THEM ANY ANY INDIVIDUAL WITH A DEVELOPMENTAL DISABILITY IS ALWAYS WELCOMED OR AN INTELLECTUAL DISABILITY IS ALWAYS WELCOME TO ANY OF OUR EVENTS BUT A LOT OF THE THINGS THAT WE FOCUS SPECIFICALLY ON ARE AUTISM RESOURCES SO THIS UM THERE THERE ARE SO MANY PROGRAMS THAT ARE OUT THERE THAT CAN BENEFIT FAMILIES BUT THEY’RE DISCONNECTED SO WHEN YOU GET AN AUTISM DIAGNOSIS YOU’RE OFTENTIMES LEFT TO FEND IT’S IT’S SORT OF LIKE OKAY GOOD LUCK YEAH AND YOU’RE SENT OUT THE DOOR TO TRY TO FIGURE IT OUT AND IT’S OVERWHELMING AND IT’S UM THERE JUST NEEDS TO BE MORE SUPPORT AND I FEEL A LOT OF ORGANIZATIONS TRY TO TACKLE THAT BUT UM IT’S IT’S A IT’S A BIG PROJECT WE ALL HAVE TO HAVE A SHARED RESPONSIBILITY IN DOING THAT SO THAT’S ONE OF THE THINGS THAT WE’RE REALLY AIMING TO DO HERE IN PUTNAM IS TO HELP POINT PEOPLE IN THE DIRECTIONS THAT THEY NEED TO GO BUT ANOTHER SIDE OF THE RESOURCES IS THERE’S NOT ENOUGH OF THEM SO I CAN TELL YOU THAT HEY THIS COULD HELP YOUR KID BUT THEY HAVE A WAITING LIST SO AGAIN RESOURCES DO EXIST BUT THEY’RE SCARCE AND THERE’S A LOT OF REASONS WHY BUT WE’RE AIMING TO ADDRESS THOSE AND THEN EDUCATION SYSTEMS THOSE AGAIN TIE INTO RESOURCES HERE IN PUTNAM COUNTY WE DO HAVE A GREAT SCHOOL SYSTEM UM BUT UNFORTUNATELY ACROSS THE STATE AND ACROSS THE NATION THE SYSTEM IS NOT DESIGNED TO BE ABLE TO SUPPORT ALL OF THESE KIDS WITH VERY UNIQUE NEEDS WHO NEED INTENSIVE SOMETIMES INTERVENTIONS AND WHEN WE HAVE 30 KIDS IN A CLASSROOM WE’RE ALL JUST DOING THE BEST WE CAN BUT THIS ONE ONE KID MIGHT NEED THE TEACHERS ALL OF HER ATTENTION AND THAT’S JUST NOT POSSIBLE SO UM WE’RE LOOKING AT DIFFERENT WAYS TO HELP BRING THE SYSTEMS AND THE SOLUTIONS SO THAT THE TEACHERS CAN HELP IMPLEMENT THE PROGRAMS THAT THESE KIDS NEED TO THRIVE SO THAT’S A HUGE UNDERTAKING BUT THOSE ARE SOME JUST SOME OF THE THINGS THAT WE’RE TRYING TO DO WELL

BG: IT SOUNDS LIKE OBVIOUSLY A AN INCREDIBLY LARGE RESPONSIBILITY UM TO THINK ABOUT HOW TO REACH HELP UM SUPPORT THESE FAMILIES AND THE COMMUNITY CAN YOU GIVE ME AN IDEA OF WHAT IT’S LIKE IF SOMEONE WERE TO COME TO YOUR ORGANIZATION WHERE TO REACH OUT TO YOU SARAH AND ASK YOU KNOW HOW DO WE GET CONNECTED TO CARES WHAT’S THE PROCESS FOR FAMILIES OR INDIVIDUALS WHO ARE IN NEED OF AUTISM SUPPORT

SARAH: WELL THERE ARE MANY AVENUES TO DO THAT I’VE HAD PEOPLE REACH OUT TO ME THROUGH FACEBOOK OUR SOCIAL MEDIA PAGE IS PRETTY ACTIVE SO YOU CAN ALWAYS JUST SHOOT US A MESSAGE THERE IF YOU GO TO OUR WEBSITE WVCARESFORAUTISM.ORG THERE’S CONTACT INFORMATION LISTED THERE WHERE YOU CAN JUST REACH OUT TO ME BY PHONE OR BY EMAIL THERE’S REALLY NO REFERRAL PROCESS BECAUSE WE’RE AN OPEN DOOR SO IF AT ANY TIME SOMEBODY NEEDED TO TALK OR REACH OUT OR JUST ASK A QUESTION IT’S ENCOURAGED TO DO THAT

BG: FANTASTIC I WHAT I WANTED TO TALK ABOUT TOO TODAY WAS UM AS WE MENTIONED JUST BEFORE WE STARTED THE SHOW TODAY UM WHAT CAUGHT MY EYE WAS THIS SPEC RUN FUNDRAISER THAT YOU HAVE ON APRIL 17TH I GET THE DATE RIGHT APRIL 17TH WHICH IS ON MEEKS MOUNTAIN TRAIL UM A COUPLE OF PODCASTS AGO I HAD A GUEST ON AND WE TALKED ABOUT SOME HURRICANE TRAIL RACING ACTIVITIES THAT ARE GOING ON SINCE THEN I HAD NEVER BEEN OUT UH TO UH THE HURRICANE PARK AND AND HAD BEEN ON THE HURRICANE TRAIL OR THE MEEKS MOUNTAIN TRAILS BUT MY WIFE AND I HAVE GOT OUT THERE ON THE MOUNTAIN A FEW TIMES NOW WE LOVE IT UM AND SO YOUR FUNDRAISER CAUGHT MY EYE THIS THE SPEC RUN CAUGHT MY EYE BECAUSE OF THAT BECAUSE IT WAS ALL CONNECTED TO MY RECENT VISIT OUT THERE AND THEN OF COURSE AUTISM APRIL BEING AUTISM AWARENESS MONTH UM CAN YOU TALK LET’S TALK ABOUT THAT A LITTLE BIT WHAT’S WHAT’S THE ACTIVITY WHAT’S THE RELIEF GOING TO BE ABOUT WHAT SORT OF HELP DO THOSE FUNDS BRING TO YOUR ORGANIZATION AND HOW CAN PEOPLE BE INVOLVED

SARAH:  ABSOLUTELY WELL LIKE YOU SAID IT’S APRIL 17TH AND THE 5K TRAIL RACE STARTS AT 10 A.M ON MEEKS MOUNTAIN TRAIL SO THIS EVENT ACTUALLY HAS MULTIPLE EVENTS EVENTS INSIDE OF IT BECAUSE IT’S REALLY A COMMUNITY EVENT OKAY UM SO AT 10 O’CLOCK YOU HAVE THE RACE AND THEN AT NOON WE HAVE WHAT WE CALL OUR AWESOME FAMILY FUN DAY AND SO WE DO A CELEBRATION WALK WE DO FUN ACTIVITIES THAT WERE DONATED TO US THROUGH LOCAL ORGANIZATIONS LIKE THE FOAM GARAGE WILL BE THERE WITH THEIR OUTDOOR SETUP SO KIDS CAN PLAY IN BUBBLES ALL OF OUR ACTIVITIES HAVE A SENSORY FOCUS TO THEM UM SO THERE’S VISUALS THERE’S LIGHTS THERE’S TEXTURES THERE’S ALL THIS FUN STUFF IT’S IT’S A WORK OF ART AT THE PARK BASICALLY AND IT’S TO CELEBRATE OUR FAMILIES AND THEY ARE THE BACKBONE OF THIS EVENT LIKE TO BE VERY HONEST LIKE IT’S AMAZING TO WATCH THEM ALL GET EXCITED THEY MAKE TEAM T-SHIRTS THEY RALLY AROUND THEIR KIDS WITH SUCH LOVE AND COMPASSION AND JOY AND THAT’S WHAT THIS EVENT IS ABOUT IT’S ABOUT CELEBRATING ALL OF OUR KIDS ALL OF THEIR DIFFERENCES AND BRINGING IT TO THE COMMUNITY THAT’S ONE OF THE THINGS THAT’S EXCITING ABOUT WHERE WE’RE HAVING IT THIS YEAR IS IT’S RIGHT THERE IN THE MIDDLE OF TOWN SO PEOPLE SEE US THEY THEY CAN COME EXPERIENCE THIS EVENT WITH US AND JUST BUILD COMMUNITY FOR THESE KIDS AND THESE FAMILIES

BG: FANTASTIC DO YOU NEED TO REGISTER FOR ANY PART OF THE EVENT AND I GUESS THERE ARE SOME PARTS OF THE EVENT YOU CAN JUST SHOW UP AND CELEBRATE TOGETHER AS A COMMUNITY

SARAH:  RIGHT YEAH WELL WE ARE ENCOURAGING REGISTRATION FOR THE 5K YOU UM WOULD DO THAT THROUGH OUR WEBSITE OR THROUGH AP TIMINGS WEBSITE WHICH THERE ARE LINKS ON OUR FACEBOOK AND OUR WEBPAGE TO DO SO UM TODAY WHICH BY THE TIME THIS AIRS EARLY REGISTRATION WILL BE OVER UM BUT THERE’S WE HAVE DIFFERENT LEVELS OF REGISTRATION ALL THE WAY UNTIL THE DAY OF EVENT YOU CAN EVEN REGISTER ON SITE OKAY UM FOR THE FAMILY FUN DAY AGAIN WE ARE ENCOURAGING REGISTRATION BECAUSE THE DONATIONS DO HELP SUPPORT OUR MISSION UM ADULTS WILL BE 25 AND CHILDREN WILL BE 10. AND BUT I MEAN HONESTLY IF YOU DON’T HAVE THAT WE STILL ENCOURAGE YOU TO COME OUT AND ENJOY THE DAY WITH US UM JUST HAVE A GOOD TIME

BG: FANTASTIC AGAIN THAT’S APRIL THE 17TH AND IT STARTS AT MONDAY AND IT’S GOING TO BE AT MEEK’S MOUNTAIN TRAIL RIGHT IN THE CENTER OF HURRICANE DOWNTOWN RIGHT IN THE UH HURRICANE PARK AREA AND SO IT’S IT’S A GREAT PLACE TO CELEBRATE UM WHAT OTHER EVENTS ARE HAPPENING IN THE IN THE COMING MONTHS UH SARAH THAT WE MIGHT BE ABLE TO HIGHLIGHT AND WE CAN TALK ABOUT FOR FOLKS TO COME OUT AND BE A PART OF

SARAH: ABSOLUTELY UM WELL EACH YEAR WE HAVE TWO FUNDRAISERS SO THIS IS ONE OF TWO IN SEPTEMBER WE HAVE A GOLF TOURNAMENT AND THIS YEAR WE’RE GOING TO HAVE IT AT BERRY HILLS IN CHARLESTON SO INFORMATION FOR THAT IS ON OUR WEBSITE WE REALLY INTEND FOR THAT TO BE A SELLOUT SO LOCAL BUSINESSES AND AND OTHER SUPPORTERS AVID GOLFERS WHO WANT TO GET OUT THERE AND JOIN THE DAY I WOULD ENCOURAGE YOU TO TO GET ON THAT PRETTY QUICKLY UM BUT THEN THESE EVENTS GO TO SUPPORT PROGRAMMING SO WE HAVE ALREADY SCHEDULED FOR THIS YEAR’S SUMMER CAMPS JUNE 19TH JULY 17TH AUGUST 21ST AT CAMP APPALACHIA AND SCOTT DEPOT AND SO WHAT WE WILL DO IS WE’LL HAVE REGISTRATION AND YOU CAN PICK A TIME THAT YOU WANT TO COME OUT BETWEEN 12 AND 6. YOU BRING YOUR FAMILY YOU BRING YOUR SIBLINGS YOU BRING YOUR COUSINS WHOEVER IT IS THAT YOU WANT TO ENJOY THIS WITH AND YOU COME ENJOY THE DAY THERE’S SWIMMING THERE’S PADDLE BOATING THERE’S YOU KNOW HIKING JUST WHATEVER YOU CAN IMAGINE AT SUMMER CAMP IT’S ALL ACCESSIBLE TO YOU DURING THOSE TIMES UM AND THEN IN OCTOBER WE HAVE WHAT WE CALL OUR HALLOWEEN SENSORY SPOOKTACULAR WHICH YOU KNOW COVID CANCELED FOR US LAST YEAR BUT THE FIRST YEAR WE HAD IT WE HAD OVER 200 PEOPLE ATTEND AND IT WAS AMAZING WE HAD A LOCAL BUSINESS DONATE PUMPKINS SO WE HAD A PUMPKIN PATCH THAT THE KIDS COULD PICK FROM AND THEY DECORATED THEIR PUMPKINS WE HAD A DJ WITH MUSIC HAY RIDES AGAIN THE FOAM ZONE IS A BIG CONTRIBUTOR TO ALL OF OUR EVENTS WE HAD FOAM BUBBLES THAT YOU COULD PLAY IN AND LOCAL BUSINESSES CAME OUT AND DID A TRUNK OR TREAT SO IT WAS JUST IT WAS AWESOME AND SO THAT’LL BE ON OCTOBER 23RD FROM 4 TO 6 30 ALSO AT CAMP APPALACHIA AND ONE OTHER THING THAT WE’VE ADDED FOR THE FALL IS IN NOVEMBER WE ARE GOING TO GO TO THE CLAY CENTER AND WE RENT THAT FACILITY OUT FOR OUR FAMILIES AND KIDS ON A SATURDAY AND SUNDAY I’M NOT GOING TO GIVE DATES JUST YET BECAUSE I’M STILL WAITING FOR THE CONFIRMATION BUT IT WILL BE IN NOVEMBER SO YOU CAN SEE THAT ON OUR WEBSITE WHEN IT’S POSTED

BG: GOOD HEY IF YOU’LL HELP ME REMEMBER ON YOUR CALENDAR TO REACH OUT TO ME A FEW WEEKS BEFORE EACH OF THESE EVENTS WE’LL TRY TO HAVE YOU BACK IN AND TALK ABOUT EACH ONE AND SEE IF WE CAN UH LET EVERYBODY KNOW MORE ABOUT WHAT’S GOING ON AS YOU GUYS GET CLOSER AT THE VERY LEAST IF OUR CALENDARS DON’T SYNC UP WE’LL MAKE SURE THAT WE PUT IT OUT ON OUR FACEBOOK PAGE AND UM AND TO OUR COMMUNITY JUST KEEP US INFORMED OF WHAT’S GOING ON IT CARES AND WE’LL HAPPILY SHARE IT WITH OUR AUDIENCE AND PUT IT IN THE SHOW NOTES OF COURSE OF TODAY’S SHOW UH

SARAH: ABSOLUTELY WELL THANK YOU ABSOLUTELY NO NO NO PROBLEM

BG: WELL I HEARD SOMEWHERE AND IT MAY HAVE BEEN ON ONE OF THE RADIO COMMERCIALS THAT YOU HAD MADE THAT THERE’S SOMEWHERE IN THE VICINITY OF AN ESTIMATED 6 000 CHILDREN IN WEST VIRGINIA THAT WE THINK ARE PROBABLY UH DIAGNOSED WITH AUTISM IS THAT CORRECT

SARAH: YEAH UM IF YOU USE THE STATISTICS GIVEN BY THE CDC WHICH IS 1 IN 54 AND YOU COMPARE IT TO THE NUMBER THAT THE CENSUS DATA COLLECTS THEN WE WOULD HAVE AROUND 6 000 KIDS UNDER 18 THAT ARE IMPACTED BY AUTISM NOW WHETHER THEY KNOW IT OR NOT IS A DIFFERENT STORY BECAUSE WE IN WEST VIRGINIA DON’T HAVE THE BEST DIAGNOSTICS WE DON’T HAVE THE INFRASTRUCTURE TO REALLY KNOW OR SUPPORT THEM SO A LOT OF THESE KIDS MIGHT END UP IN A BEHAVIORAL DISORDER CLASS OR ANOTHER WITH ANOTHER LABEL JUST BECAUSE THEY DON’T UNDERSTAND THE TRUE STRUGGLES THAT ARE GOING ON BEHIND THE SCENES

BG: WHAT CAN WE DO ABOUT THAT SARAH AS A COMMUNITY WE DON’T HAVE THE RIGHT DIAGNOSTIC TOOLS THAT WE NEED THAT SEEMS LIKE SOMETHING WE SHOULD RALLY AROUND AND SEE IF WE CAN YOU KNOW MAKE AN IMPACT THERE WHAT WHAT WHAT CAN WE DO AS A COMMUNITY TO TO IMPROVE THAT WHAT ARE THE AVENUES WE SHOULD TAKE UM TO TO ADDRESS THIS

SARAH: WELL FIRST AND FOREMOST IS TO START TO EDUCATE OURSELVES ABOUT WHAT AUTISM CAN LOOK LIKE AND THAT IT DOESN’T ALWAYS LOOK LIKE THE STEREOTYPE THAT YOU MIGHT SEE OR PORTRAYED ON TV OR UM THERE’S NOT A LOOK TO IT UM AND SECOND OF ALL OH I’M SORRY

BG: IT TRULY IS A SPEC AS A SPECTRUM IT’S TRUE THAT’S

SARAH: ABSOLUTELY RIGHT BUT MY SON WAS DIAGNOSED WITH ADHD WHEN HE WAS FOUR AND WASN’T DIAGNOSED WITH AUTISM UNTIL HE WAS EIGHT BUT IN BETWEEN THOSE TWO WE HAD LOTS OF DIAGNOSES THAT ALL OF THEM CAN LOOK I MEAN IF WE THINK ABOUT IT THIS WAY MOST OF THESE DIAGNOSTICS ARE A BEHAVIORAL CHECKLIST AND SO WHEN WE TALK ABOUT ANXIETY AND ADHD AND MOOD DISORDERS A LOT OF THESE OVERLAP WITH SYMPTOMS AND CHARACTERISTICS THAT WOULD COME OUT IN AN AUTISM DIAGNOSIS OR IT’S ALL WHO’S LOOKING THROUGH WHAT LANES AND AGAIN IF YOUR CHILD IS VERBAL IF YOUR CHILD DOESN’T HAVE THE THE OBVIOUS SYMPTOMS OF OF COMMUNICATION DELAYS AND THESE SORTS OF THINGS THEY MIGHT NOT GET A DIAGNOSIS OF AUTISM BUT THAT DOESN’T MEAN THEY’RE NOT AUTISTIC WE HAVE KIDS IN THIS STATE WHO ARE NON-VERBAL WHO AREN’T GETTING DIAGNOSES UNTIL AFTER THE AGE OF FOUR UM AND THAT’S HONESTLY I DON’T OUTSIDE OF JUST KNOWING AND ADDRESSING AND CALLING THE PROBLEMS WHERE THEY ARE I DON’T I DON’T KNOW UM I DON’T KNOW THE SOLUTION BUT I KNOW THAT WE’RE WORKING ON ON TRYING TO TACKLE THAT BECAUSE AUTISM CAN BE ACCURATELY DIAGNOSED AT THE AGE OF TWO SO WHY ARE WE WAITING TO REFER KIDS TO GET TESTING EVEN IF WE DON’T HAVE IT IN OUR STATE WHY ARE WE WAITING AND SAYING WELL LET’S JUST WAIT AND SEE IF THEY TALK AT THREE IF THEY DON’T TALK AT THREE THEN MAYBE WE’LL ADDRESS IT WE’RE WASTING TIME WE’RE NOT GETTING THESE KIDS THE SERVICES THEY NEED AND WE’RE GIVING THESE FAMILIES UM BAD INFORMATION JUST I

BG: JUST THAT’S IMPORTANT FOR US HERE AT LOCAL IMPACT TO BRING THAT TO UH AT LEAST THE AWARENESS OF THE COMMUNITY SO WE CAN BE THINKING ABOUT THAT AS WELL UM I I DO APPRECIATE YOU SHARING YOU KNOW YOUR PASSION AND YOUR HEART ABOUT WHAT CARES IS ALL ABOUT HOW CAN OUR COMMUNITY HELP YOUR ORGANIZATION HOW CAN THEY UH YOU MENTIONED THE FUNDRAISERS OF COURSE WE CAN SUPPORT THAT BUT JUST IN THOSE OFF SEASONS WHEN THERE’S NOT A SEASONAL FUNDRAISER GOING ON WHAT OTHER WAYS CAN THE COMMUNITY REACH OUT TO YOU FINANCIALLY OR OTHERWISE

SARAH: WELL THERE’S ALWAYS THE OPTION OF BECOMING A SUSTAINABLE DONOR WE WE’VE BEEN LOOKING TO EXPAND THAT PLATFORM BECAUSE THESE FUNDRAISERS ARE GREAT THEY GIVE US A BIG BOOST IN FUNDS BUT THERE’S NOT CONSISTENT FUNDING JUST I’M I LIKE TO BE VERY TRANSPARENT LAST YEAR UM IN 2020 DESPITE A PANDEMIC AND ONLY BEING IN OUR SECOND YEAR OF FULLY RUNNING WE WERE ABLE TO RAISE A HUNDRED AND THREE THOUSAND DOLLARS FOR OUR ORGANIZATION ONLY 22 000 OF THAT OR NOT EVEN 12 22 WAS MY GOAL FOR THIS YEAR ONLY 12 000 OF THAT WAS THROUGH GRANTS BECAUSE WE WERE STILL SO NEW THAT WE HAD TO BUILD THE INFRASTRUCTURE SO THAT MEANS THAT OUR COMMUNITY OUR DONORS OUR FAMILIES OUR BUSINESSES HAVE REALLY STEPPED UP TO MAKE THIS HAPPEN AND WE ARE INCREDIBLY THANKFUL FOR THAT AND APPRECIATIVE UM SO WE JUST NEED TO KEEP DOING WHAT WE’RE DOING IN TERMS OF OF THE FUNDING BUT ANOTHER THING THAT WE COULD DO IS YOU WE NEED EVERYBODY TO USE WHAT RESOURCES THEY HAVE IN THEIR NETWORKS LIKE WHO DO WE KNOW THAT CAN HELP US EXPAND EDUCATION FOR THE SERVICES THAT WOULD SUPPORT OUR KIDS WHO DO WE KNOW WHO WOULD WOULD HELP CREATE A SCHOLARSHIP FUND IS ONE OF THE THINGS WE’RE TALKING ABOUT BECAUSE JUST LIKE IN MEDICINE THESE DOCTORS AND THESE BEHAVIORAL THERAPISTS IN OUR WORLD UM THEY’RE IN HIGH DEMAND NOT JUST HERE IN WEST VIRGINIA BUT ACROSS THE NATION SO WE NEED TO WE’RE TRAINING THEM AND THEN LOSING THEM ACROSS THE BORDER WHERE THEY CAN MAKE MORE MONEY AND HAVE MORE JOB OPPORTUNITIES SO THAT’S SOMETHING THAT WE’RE REALLY TRYING TO DIG INTO UM ONE OF THE THE AMBASSADOR STORIES WE’RE TELLING THIS YEAR WHERE WE HIGHLIGHT A MISSION POINT AND A FAMILY STRUGGLE IS THAT OUT OF THESE 6 000 KIDS WITH AUTISM OF THE ONES THAT KNOW ABOUT THIS INTERVENTION CALLED APPLIED BEHAVIOR ANALYSIS ONLY ONE AND TEN ARE GETTING THE SERVICES WHICH MEANS THE OTHER NINE NINETY PERCENT OF THESE FAMILIES AREN’T GETTING THE THERAPIES THAT THEIR KIDS NEED AND THAT’S OF THE PEOPLE THAT KNOW ABOUT THIS I’VE BEEN STRUGGLING FOR YEARS WITH MY SON AND NEVER HEARD ABOUT IT UNTIL UM I JUST RAN INTO SOMEBODY HONESTLY I RAN INTO A MOM AT THE YMCA DURING A GYM CLASS AND WE GOT TO TALKING AND I HEARD ABOUT IT FROM HER BECAUSE SHE HAPPENED TO HAVE THE SERVICE UM AND THAT’S NOT HOW IT SHOULD BE NO UM BUT THAT BEING SAID OUR NEIGHBORING STATES ARE ANYWHERE FROM FOUR TO 19 TIMES MORE PREPARED TO SERVE OUR KIDS THEY HAVE THERAPY PROGRAMS IN THE SCHOOL SYSTEMS THAT ARE INTEGRATED THEY HAVE SCHOOL CHOICE FOR KIDS THAT HAVE EXCEPTIONAL NEEDS I’M NOT TRYING TO POLITICIZE ANY OF THIS IT’S JUST A FACT LIKE OUR KIDS DON’T NEED THE SAME STRUCTURES THAT TRADITIONAL LEARNERS DO UM AND THEY HAVE THEY HAVE MORE THERAPISTS BECAUSE THEY’RE ABLE TO PAY MORE THERE’S MORE OPPORTUNITIES AND HERE IN THIS STATE WE’RE HAVING TO BUILD IT FROM THE GROUND UP AND IT’S COME A LONG WAY PRIOR TO 2010 WE DIDN’T EVEN HAVE ANY LEGISLATION THAT COVERED THESE THERAPIES UNDER AN INSURANCE POLICY IN LAST YEAR WE WERE ABLE TO MONITOR LEGISLATION THAT PASSED THROUGH AND REMOVED THE CAP FOR TREATMENT NOW GRANTED IT WASN’T THE FIRST THING THAT THEY WERE DOING WHEN THEY DID THIS BUT IT WAS ALSO A BENEFIT TO US IT WAS THE MENTAL HEALTH PARITY THEY THEY WANTED TO REMOVE THE CAT FOR TREATMENT FOR PEOPLE WITH SUBSTANCE ABUSE AND OTHER MENTAL DISORDERS BUT IN DOING SO THEY ALSO REMOVED THE CAT FOR KIDS WITH AUTISM UM WE’RE GETTING THERE BUT THERE’S JUST SO MUCH MORE WORK TO DO

BG: I UNDERSTAND AND I CAN FEEL AND HEAR YOUR PASSION AND I THANK YOU FOR THIS THIS IS JUST VERY INFORMATIVE AND I THINK UM YOU KNOW OUR GOAL IS YOU KNOW TO HELP YOU GET THE WORD OUT ESPECIALLY THIS MONTH UH WE’LL BE PUSHING AUTISM AWARENESS ALL THROUGH APRIL HERE AS MUCH AS WE CAN FROM THIS PODCAST AND FROM YOUR EVENTS AND YOUR ACTIVITIES GOING ON WE’LL DO ALL WE CAN TO MAKE SURE THAT PUTNAM COUNTY AND BEYOND THE WHOLE TRI-STATE AREA REALLY CAN KNOW MORE ABOUT AUTISM BUT SPECIFICALLY FOR WEST VIRGINIA FOR YOUR ORGANIZATION YOU MENTIONED A MINUTE AGO AT THE VERY BEGINNING OF THE PODCAST ABOUT OR SOMEWHERE IN THE MIDDLE WE WERE TALKING ABOUT THE PLACES WHERE PEOPLE COULD REACH OUT IF YOU COULD REPEAT AGAIN THE BEST WAY TO REACH OUT TO CARE TO CONTACT YOU GUYS IF IF FOR ANY REASON IF SOMEBODY HAS HEARD THIS PODCAST AND SAID I THINK I MAY HAVE SOME RESOURCES I MAY HAVE A NETWORK OF PEOPLE THAT CAN HELP I MAY HAVE A CONTACT WHERE WE CAN UM YOU KNOW BENEFIT THE CARES ORGANIZATION OR IF SOMEBODY IS IN NEED OF JUST SUPPORT ANY WAY THAT THEY CAN REACH OUT TO YOU SARAH HOW DO THEY DO THAT

SARAH: WELL THEY COULD REACH OUT TO ME THROUGH UM EMAIL WHICH WOULD BE WV CARES FOR AUTISM AT GMAIL.COM YOU CAN ALSO REACH OUT TO ME THROUGH FACEBOOK WE’RE ON THERE UNDER COMMUNITY AUTISM RESOURCES AND EDUCATION SYSTEMS UM YOU CAN DO DIRECT MESSAGING THROUGH THAT BUT ULTIMATELY ALL ALL OF THIS INFORMATION AND EVERYTHING THAT WE DO IS GOING TO BE UPDATED ON OUR WEBSITE WHICH IS WB CARES FOR AUTISM.ORG

BG: THIS WAS INCREDIBLY INFORMATIVE AND I REALLY APPRECIATE YOU BEING ON UH WITH US TODAY ANY FINAL THOUGHTS YOU WANT TO GIVE TO OUR AUDIENCE BEFORE WE UM HIT STOP ON THE PODCAST TODAY

SARAH: UM I GUESS WE JUST HOPE TO SEE YOU ALL AT SOME OF OUR EVENTS UM THEY’RE HERE FOR YOU WE DO WHAT WE DO FOR YOU AND WE HAVE MULTIPLE OPPORTUNITIES WHERE YOU CAN COME SHARE YOUR NEEDS WITH US BECAUSE ULTIMATELY IF OUR PROGRAMMING ISN’T ALIGNING WITH THE NEEDS OF OUR COMMUNITY WE WE’RE NOT DOING IT RIGHT AND THAT’S OUR NUMBER ONE GOAL TO SUPPORT FAMILIES LIKE YOURS LIKE MINE SO THAT WE CAN GROW TOGETHER AND HELP OUR KIDS AND OUR FAMILIES REACH THEIR FULLEST POTENTIAL

BG: SARAH HARRIS WHO’S THE FIRST EXECUTIVE DIRECTOR FOR AN ORGANIZATION CALLED PAIRS RIGHT HERE IN PUTNAM COUNTY THANK YOU AGAIN FOR BEING A PART OF THE PODCAST AND WE HOPE YOU’LL COME BACK AND BE WITH US AGAIN SOMETIME

SARAH: THANK YOU SO MUCH