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Susan Kandler - PWP brings her Peace of Mind and Body:

 


Susan Kandler’s mother thinks that if life had been different, Susan would have been a stand-up comic.  “She has an innate ability to store little phrases and catalogue them.  She’ll bring them out in a situation that strikes the nail on the head,” said Joan Kandler of Wilmington, Delaware.

But for 47-year-old Susan, diagnosed with brain damage and a seizure disorder, women’s health exams were no laughing matter.

Recalled Joan:  “She did have a women’s health exam when she was much younger and was not sedated for it at the time.  But we had to hold her arms.  Even breast exams were always problematic.  We’d get so far into the room where the machinery was and then she wouldn’t go any farther into it.”

When Susan moved to a group home, her resistance increased.  Two years ago, she ended up having to be sedated to complete a women’s health exam.

In fact, Susan viewed all healthcare visits with suspicion.  “We’ve always had problems even having her go to a doctor’s office and the hospital.  We never knew if she would get out of the car, go into the elevator, and then leave the office at the end,” Joan recalled.

Susan’s unpredictable response to situations made such visits difficult.  “You could never be sure which Susan would show up: “the willing Susan or the unwilling Susan,” Joan said.  The unwilling Susan  “could never go to the doctor’s appointment because she wouldn’t even leave the house.”

Judy Little, RN and healthcare coordinator at Community Systems, Inc., where Susan lives, faced the same struggle.  “I can’t tell you how many visits we had to cancel when she wouldn’t go during her stuck periods.  You’d have the appointments, but she wasn’t able to leave her home or if we got there, get her out of the car.“

Fear of the unknown played a role in her self-imposed isolation.  “Transitioning has always been difficult for Susan,” Joan said.  “She has an underlying fear of where am I going, what am I doing, and putting two and two together.”

She also has sensory challenges. “Susan is very resistant to being touched.  You have to approach her with humor and one-on-one in a non-threatening way, otherwise she is very defensive,” her mother said.

Practice Without Pressure appealed to Joan and to group home staff because it offered an approach that was cooperative and not coercive.  “The purpose of the program is to bring down the defenses and teach someone that what you’re going to do is not harmful.  Repetition is always good,” Joan said.

LaConya Wesley, program manager for Community Systems, Inc., went with Susan to her first practice session at PWP in August of 2010.  “When we first went in, they explained the procedure and the use of cards for review.  Susan was calm and as we were looking through the cards, she’s standing and watching what we’re doing.  She eased into it,” LaConya said and learned through repetition and practice what they expected of her.

After just six practice sessions, Susan completed a women’s health exam at the PWP Practice & Procedure Center without sedation and with ease.  “It didn’t take very many practices.  I was really surprised,” LaConya said.  Judy Little agreed.  “I’m thrilled at the outcome.”

Joan Kandler was ecstatic. “It’s like Susan won the Nobel Peace Prize,” she said, laughing.

Credit careful practice as well as the comfort and trust Susan felt with PWP staff.  “If she trusts you, she will walk off a cliff holding your hand,” said Joan.  “But if she doesn’t trust you, she’s not going to cooperate.  She has a radar where she can figure out who to trust and who not to trust.  It’s almost a litmus test,” her mother said.

It helps to sing too.  Dr. Belicena knew from Susan’s history that she found the song, “Wheels on the Bus” to be soothing.  Karen Bashkow, RN and PWP Program Director sang the song as the women’s health exam progressed, adding her own lyrics when her memory failed her.  Susan didn’t seem to mind her creative license.

“We were done before we knew it,” Belicena said.

This case history excerpted with permission from 2011 Autism File magazine, issue 38

 

 

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