>> HI, I'M TERISA GABRIELSEN, PART OF THE CENTER
FOR AUTISM RESEARCH.
I'M ALSO A MEMBER OF AN INTERDISCIPLINARY TEAM
THAT'S WORKING THROUGHOUT THE HOSPITAL TO ENSURE THAT
OUR PROVIDERS ARE PREPARED AND KNOWLEDGEABLE TO SERVE
FAMILIES WHO HAVE CHILDREN WITH AUTISM SPECTRUM
DISORDERS, BEHAVIORAL DIFFICULTIES,
AND OTHER DEVELOPMENTAL DISORDERS.
AS A PARENT OF A CHILD WITH AN AUTISM SPECTRUM DISORDER
OR ANOTHER DEVELOPMENTAL BEHAVIORAL DIFFICULTY,
YOU ALREADY KNOW HOW DIFFICULT IT IS TO EVEN
THINK ABOUT A VISIT TO THE DOCTOR,
A VISIT TO THE DENTIST, OR EVEN TO GO GET A HAIRCUT.
WE HAVE A SETTING OR AN ENVIRONMENT WHERE THE CHILD
IS VERY UNFAMILIAR.
WE HAVE A LOT OF THINGS THAT ARE UNPREDICTABLE.
AND THE KEY TO A SUCCESSFUL VISIT IS FOR THE CHILD TO BE
COOPERATIVE, AND THAT'S ONE OF THE HARDEST THINGS TO DO
WHEN WE HAVE ALL THESE OTHER VARIABLES IN PLACE.
SO AS A PARENT, THERE ARE A LOT OF THINGS THAT YOU CAN
DO TO HELP THE PROVIDERS PREPARE FOR YOUR CHILD'S VISIT.
AND THE FIRST THING THAT YOU CAN DO IS GET ON THE PHONE
WITH THE CLINIC OR THE DOCTOR'S OFFICE THAT YOU'RE
GOING TO BE VISITING AND LET US KNOW ABOUT YOUR CHILD.
TELL US ABOUT YOUR CHILD'S STRENGTHS AND WEAKNESSES,
AND IN PARTICULAR, TELL US THAT YOUR CHILD HAS
AN AUTISM SPECTRUM DISORDER OR OTHER DIFFICULTY SO WE CAN
BETTER MAKE A CARE PLAN THAT WOULD SUIT THEIR INDIVIDUAL
NEEDS WHEN THEY COME.
DON'T ASSUME THAT THE CLINIC OR THE DOCTOR ALREADY KNOWS
OR EVEN THAT THEY CAN REMEMBER THE SPECIFICS
OF YOUR CHILD.
IT'S A GOOD IDEA TO GIVE A CALL EACH TIME TO GIVE US
A HEADS UP SO WE CAN CREATE THE CARE PLAN THAT MAY
INCLUDE A CHILD LIFE SPECIALIST THAT CAN BE
VERY HELPFUL THROUGHOUT YOUR VISIT AND IN PREPARING
FOR YOUR VISIT.
LET US KNOW IF YOUR CHILD HAS A VERY RIGID DAILY
ROUTINE, IF YOUR CHILD LIKES TO EAT AT A CERTAIN TIME
OR SLEEP AT A CERTAIN TIME, AND THERE MAY BE SOME THINGS
WE CAN DO IN OUR SCHEDULING TO ACCOMMODATE THAT.
ESPECIALLY, ASK ABOUT WAIT TIMES.
THERE ARE INEVITABLE WAIT TIMES WHEN YOU COME TO ANY
HEALTHCARE SETTING, AND IF THE WAIT TIMES ARE LONG
AND UNEXPECTED, THAT CAN BE DOUBLY DIFFICULT FOR YOU
AND YOUR FAMILY.
IF YOUR CHILD HAS SPECIAL COMMUNICATION NEEDS,
LET US KNOW WHAT THOSE ARE SO WE CAN BE PREPARED.
IF WE NEED AN INTERPRETER FOR SIGN LANGUAGE TO BE
HERE, WE CAN DO THAT.
AND IF YOU NEED TO BRING A COMMUNICATION DEVICE,
WE WANT TO LET YOU KNOW THAT THAT'S OKAY, TOO.
IF YOUR CHILD HAS ANY SPECIFIC SENSITIVITIES
TO LIGHTS OR SOUNDS OR TOUCH OR THE FEEL OF CLOTHING,
IF THEY'RE SENSITIVE TO CERTAIN SIGHTS OR SMELLS,
IF YOU LET US KNOW ABOUT THOSE IN ADVANCE,
THERE MIGHT BE THINGS THAT WE CAN DO BEFORE YOUR CHILD
GETS HERE TO MAKE SOME OF THOSE THINGS A LITTLE BIT
MORE COMFORTABLE FOR HIM OR HER.
I'M SURE YOU KNOW THINGS THAT ARE BOUND TO MAKE YOUR
CHILD ANXIOUS, AND IF YOU TELL US WHAT THOSE ARE,
WE CAN SEE IF WE CAN CHANGE SOME OF OUR PROCEDURES
A LITTLE BIT TO MAKE THEM A LITTLE BIT BETTER
FOR YOUR CHILD.
WE ESPECIALLY WANT TO KNOW IF THERE ARE THINGS THAT YOU
DO THAT CAN HELP YOUR CHILD CALM DOWN OR CAN HELP YOUR
CHILD FEEL MORE COMFORTABLE WHEN THEY ARE FEELING
ANXIOUS, AND THEN WE CAN JOIN WITH YOU IN HELPING
YOUR CHILD TO FEEL MORE COMFORTABLE WHEN HE
OR SHE IS HERE.
THESE THINGS MIGHT BE PRETTY AUTOMATIC FOR YOU,
BUT WE DON'T KNOW YOUR CHILD AS WELL AS YOU DO,
SO IF YOU CAN KIND OF PARTNER WITH US BEFORE YOU
GET HERE, WE CAN BE BETTER PREPARED TO MEET
YOUR CHILD'S NEEDS.
AS A PARENT, YOU KNOW THAT THE KEY TO ANYTHING
IS ADVANCE PREPARATION.
SO GO AHEAD AND MAKE A LIST OF THINGS THAT YOU WOULD
LIKE TO BRING WITH YOU TO YOUR VISIT,
AND WE CAN HELP YOU WITH THAT LIST.
THERE WILL BE WAIT TIMES, SO BRING IN THINGS TO DISTRACT
YOUR CHILD.
BRING A WHOLE BUNCH OF THINGS TO DISTRACT YOUR CHILD.
THESE CAN INCLUDE TOYS, BOOKS, DVD PLAYERS,
VIDEO GAMES, THINGS THAT YOU KNOW ARE HELPFUL
TO HIM OR HER IF SHE IS IN A SITUATION WHERE THEY
HAVE TO WAIT.
OTHER THINGS THAT YOU CAN THINK ABOUT ARE COMFORTING
ITEMS, THINGS LIKE BLANKETS OR STUFFED ANIMALS
OR SOMETHING THAT THEY LIKE TO HAVE WITH THEM THAT MAKES
THEM FEEL COMFORTABLE.
ANY COMMUNICATION AIDS THAT YOUR CHILD IS USED TO,
WHETHER IT BE AN IPAD OR A PEC SYSTEM OR DYNAVOX,
BRING WITH YOU SO THAT YOUR CHILD HAS THE ABILITY
TO COMMUNICATE WITH US HOW HE OR SHE IS FEELING
AND WHAT HE OR SHE WANTS.
BRING ANY OF THE REINFORCERS THAT YOU KNOW ARE VERY
MOTIVATING FOR YOUR CHILD.
WE HAVE A LOT OF THINGS HERE AT CHOP,
BUT THEY MAY NOT BE THE RIGHT BRAND OR THE RIGHT
COLOR, AND YOU KNOW ALL THOSE SPECIFICS.
SO PLEASE FEEL FREE TO BRING THOSE WITH YOU.
IF THERE'S ANY SPECIAL ITEM THAT YOUR CHILD NEEDS TO BE
ABLE TO DRINK SOMETHING, WE'D LIKE YOU TO BRING THAT,
AS WELL AS ANYTHING SPECIAL THAT HE NEEDS
TO TAKE MEDICATION.
THERE MAY BE SOME LIQUID MEDICATIONS THAT WE MAY WANT
TO GIVE AS PART OF A VISIT, AND IF THAT'S THE CASE,
WE WANT HIM TO BE AS COMFORTABLE AS HE OR SHE CAN,
AND WE WANT THEM TO BE ABLE TO COOPERATE WITH THAT.
TO HELP YOU WITH YOUR PREPARATION,
WE'RE ALSO DEVELOPING SOME SOCIAL STORIES,
SOME VISUAL SCHEDULES, AND SOME IF-THEN BOARDS TO USE
WHILE YOU'RE HERE IN THE HOSPITAL,
BUT WE'RE HOPING TO GET SOME OF THESE AVAILABLE FOR YOUR
USE AT HOME, THROUGH THE INTERNET.
THESE CAN BE VISUAL REPRESENTATIONS OF WHAT
THE VISIT IS GOING TO LOOK LIKE SO YOUR CHILD CAN BECOME
FAMILIAR WITH WHAT TO EXPECT AND EVERYTHING THAT HE
OR SHE SEES WON'T BE QUITE AS UNFAMILIAR WHEN THEY GET HERE.