>> HI, MY NAME IS AMY KRATCHMAN AND I'M THE PARENT
OF A 16-YEAR-OLD SON, JONATHAN,
WHO WAS DIAGNOSED WITH AUTISM HERE AT CHOP
WHEN HE WAS 3 YEARS OLD.
SO WE'VE BEEN COMING TO CHOP FOR A REALLY LONG TIME
FOR ALL OF JONATHAN'S TREATMENTS.
HE'S BEEN FOLLOWED HERE FOR HIS AUTISM.
HE'S PARTICIPATED IN MANY AUTISM RESEARCH STUDIES
HERE AT THE HOSPITAL.
AND HE'S ALSO SEEN MANY DIFFERENT DEPARTMENTS
THROUGHOUT THE HOSPITAL, BECAUSE, AS YOU KNOW,
AUTISM COMES ALONG WITH MANY DIFFERENT ISSUES —
GI ISSUES, HE HAS ALLERGY ISSUES,
THE LIST COULD GO ON AND ON.
AND THE ONE THING THAT HAS REALLY BEEN SO REWARDING
FOR ME IS THAT I'VE BEEN ABLE TO SEE SUCH TREMENDOUS
DIFFERENCES IN THE WAY THE HOSPITAL HAS APPROACHED
JONATHAN AND HAS CARED FOR HIM.
SO IN THE BEGINNING WHEN HE USED TO HAVE TO HAVE HIS
BLOOD DRAWN FOR WHATEVER REASON,
IT WAS A MAJOR DISASTER.
AND WE USED TO SPEND A LOT OF TIME TRYING TO ACTUALLY GET
THE NEEDLE IN AND GET THE BLOOD THAT HE NEEDED TO GET.
AND NOW THINGS HAVE COME SUCH A LONG WAY THAT NOT ONLY
DO WE HAVE A WAY TO PREPARE JONATHAN SO THAT
WHEN HE COMES IN FOR BLOOD WORK HE KNOWS WHAT TO EXPECT
AND IT'S NOT AS TRAUMATIC FOR HIM,
BUT HE WAS RECENTLY HERE IN THE HOSPITAL FOR AN INPATIENT
VISIT AND ALSO FOR AN MRI, AND THE HOSPITAL
PREPARED HIM SO WELL.
THE STAFF WORKED WITH HIM AND REALLY WENT THROUGH
WITH HIM ALL THE DETAILS OF WHAT HE NEEDED TO EXPECT
FROM HIS TEST.
SO WITH AN MRI THEY PLAYED THE NOISES HE WOULD HEAR
IN THE MACHINE.
THEY GAVE HIM LIKE WHAT HE WOULD HAVE ON HIS, YOU KNOW,
ANY TOUCHES HE WOULD HAVE FROM THE EQUIPMENT.
AND THAT MADE THE PROCESS GO SO MUCH EASIER THAT ACTUALLY
THE NURSES AND THE TECHS ALL SAID THAT THEY COULDN'T
BELIEVE HOW STILL HE WAS THROUGHOUT THE TEST
AND HOW IT WAS NON-EVENTFUL.
CHOP HAS ALWAYS HAD A LONG HISTORY OF PARTNERING
WITH FAMILIES AND THAT'S REALLY WHAT'S DRAWN US HERE
TO THE HOSPITAL.
YOU KNOW, EVERY STEP OF MY SON'S CARE,
INCLUDING HIS DIAGNOSIS, WE'VE ALWAYS PARTNERED
WITH THE DOCTORS, THE NURSES, THE STAFF,
ALL ALONG THE WAY.
AND WHAT'S BEEN SO NICE IS THAT EVERYBODY IS REALLY
INTERESTED IN HEARING FEEDBACK FROM FAMILIES.
SO MOST RECENTLY CHOP HAS STARTED AN AUTISM FAMILY
PARTNERS GROUP.
AND THE IDEA BEHIND THEM IS THAT THEY CAN GIVE FEEDBACK
TO STAFF INSTANTANEOUSLY ON ANYTHING THAT WE'RE WORKING
ON HERE AT THE HOSPITAL.
SO IT COULD BE FROM, YOU KNOW,
HOW WE DESIGN A NEW BUILDING JUST TO MAKE SURE
THAT EVERYTHING THAT GOES INTO IT,
INCLUDING THE PAINT, THE LIGHTING,
THAT IT'S REALLY AUTISM FRIENDLY.
SO THIS IS JUST A REALLY NICE WAY FOR CHOP
TO GO STRAIGHT TO THE FAMILIES AND SAY,
"WHAT WILL IT TAKE TO MAKE YOUR CHILD'S EXPERIENCE HERE
AUTISM FRIENDLY?"
ONE OF THE THINGS WE LOVE ABOUT COMING TO CHOP
IS THAT NOT ONLY IS MY SON JONATHAN ABLE TO RECEIVE
THE COORDINATED CARE HE NEEDS FOR HIS AUTISM,
BUT WE'VE ALSO BEEN A PART OF RESEARCH THAT TAKES PLACE HERE.
SO VERY INNOVATIVE RESEARCH.
THE CENTER FOR AUTISM RESEARCH REALLY LEADS
THE WAY IN ALL OF THE DIFFERENT THERAPIES THAT WORK FOR KIDS
WITH AUTISM AND REALLY EXPLORING NEW WAYS,
NEW MEDICATIONS TO HELP THE KIDS.
AND WE'VE BEEN ABLE TO BE A PART OF THAT.
SO JONATHAN HAS BEEN PARTICIPATING IN RESEARCH
STUDIES AT THE CENTER FOR AUTISM RESEARCH.
AND WE'VE SIGNED UP FOR AUTISMMATCH,
THAT WAY ANY RESEARCH PROJECTS WHERE THEY'RE
LOOKING TO RECRUIT MORE KIDS COMES THROUGH IN OUR E-MAIL.
SO WE'RE ABLE TO REALLY PICK AND CHOOSE,
AND JONATHAN HAS GOTTEN TO THE POINT
WHERE HE LOVES THEM.
HE LOVES PARTICIPATING IN THEM BECAUSE THEY'RE NOT
SCARY TO HIM.
SOME OF THEM HE'S ABLE TO PLAY VIDEO GAMES IN.
AND IT'S REALLY A NICE WAY FOR US TO BE ABLE TO GIVE
BACK AND FOR HIM TO KNOW THAT HE'S ALSO GIVING BACK
AND HELPING OTHER KIDS WITH THIS DISABILITY.
THESE ARE JUST SOME OF THE WAYS THAT WE'VE BEEN ABLE
TO PARTICIPATE AND REALLY PARTNER WITH CHOP AS THEY
CONTINUE TO REALLY MAKE EVERYTHING THAT THEY DO HERE
AUTISM FRIENDLY.
AND IF YOU WANT TO LEARN MORE ABOUT IT THERE'S
A WONDERFUL WEBSITE, WWW.CHOP.EDU/AUTISM.
AND THERE YOU CAN FIND ALL THE INFORMATION ABOUT
THE DIFFERENT PROGRAMS THAT WE HAVE HERE AT THE HOSPITAL,
HOW WE'RE REALLY MAKING IMPROVEMENTS TO HELP
THE CARE FOR CHILDREN WITH AUTISM ACROSS
THE HOSPITAL SETTING.
PLUS, IF YOU'RE LIKE MY SON JONATHAN AND YOU REALLY DO
LOVE DOING THOSE RESEARCH STUDIES,
IT'S A WONDERFUL WAY TO GIVE BACK.
AND THEY'RE NOT SCARY STUDIES,
THEY'RE ACTUALLY VERY REWARDING.
MY SON HAS GOTTEN A LOT OUT OF THEM.
AND YOU CAN FIND OUT WAYS ON HOW TO PARTICIPATE WITH THAT
BY CONNECTING WITH THE CENTER FOR AUTISM RESEARCH
AND ALSO BY GOING TO THE WWW.CHOP.EDU/AUTISM SITE.
THEY WILL BE ABLE TO CONNECT YOU WITH
THE CENTER FOR AUTISM RESEARCH.
AND IT'S ALSO A GREAT WAY TO FIND OUT ABOUT THE DIFFERENT
PROGRAMS AND THE DIFFERENT WAYS THAT WE HELP RAISE
MONEY FOR THE RESEARCH AND THE PROGRAMS,
THE CLINICAL PROGRAMS HERE AT CHOP FOR AUTISM.