Taking the fear out of doctors’ visits

For people with special needs, routine doctors’ visits can be a cause for special terror. Often people with intellectual disabilities or autism get sedated or restrained so they’ll stay still. One Delaware mother came up with a better way.

Nobody looks forward to a dentist’s drill or giving a blood sample. But for people with special needs, these routine visits can be a cause for special terror. Often people with intellectual disabilities or autism get sedated or restrained so that they’ll stay still for a medical test. One Delaware mother came up with a better way.

Deborah Jastrebski’s son Mark was born with Down syndrome as well as heart problems, and had to undergo many operations and painful medical procedures in his childhood. Jastrebski says with each bad experience, Mark got more scared:

Jastrebski: “And when he was 11, he needed to get allergy tests done and it was a nightmare for him, my son was screaming and crying so hard blood vessels were bursting in his face. And as a mom, that just tore me apart, and I said we won’t do this to him anymore, I had to find another way”

Many parents of special-needs children have horror stories about doctor’s visits. Sue Humphreys’ son Scott has autism: Humphreys: “Even just to put an IV in his arm or to draw blood is so frightening to him, we have had five security guards hold him down, just to get a needle into his arm”

Robert Brooks’ daughter LaKeyda has intellectual disabilities. Going to the dentist scared her:

Brooks: “There was nobody out there that we know of that would actually take the time to work with work with LaKeyda, to get her past that fear.”

That’s why Deborah Jastrebski decided to create her own techniques to help Mark. She started to break down medical procedures into small steps, and practiced with Mark:

Jastrebski: “He could hold his arm out. That wasn’t too scary for him. He could sit in a chair. That wasn’t too scary for him. And even when it came time to put the needle in his arm, we simulated it with a paper clip, and he could do that and then eventually he realized he could do it all put together.”

Building on her background as a physician’s assistant, and her business skills, Jastrebski decided to do this work for a living. She first worked with patients in their homes, then offered sessions in doctors’ offices in her region. In 2002, she set up “Practice without Pressure” as a nonprofit, and last year moved it into its own building in Newark Delaware. Now, hundreds of patients a year visit for practice sessions, as well as routine dental work, blood samples, exams, even haircuts.

Tailoring their approach to the client’s verbal skills, Practice without Pressure’s staff might use pictures or play-acting to explain procedures, like taking dental x-rays. Here they are working with one of their older clients:

Patients always hold a stop card to be able to signal that they have had enough.

Dental Hygienist Lauren Evans says observing the practice sessions is crucial for her work with patients:

Evans: “We take the time that’s necessary to tune into the patient, to find out – do they have signs when they get uneasy? We learn a lot more about them during those practice sessions rather than trying to learn it while they are in the chair, which is what you usually have when you work in a private practice.”

For Stephen Cleary and his son Ryan, who has Down syndrome, Practice without Pressure has made a big difference. Ryan now goes to dental cleanings without any problems, which has lifted a huge burden off his dad’s shoulders:

Cleary: “I no longer want to kill somebody when they are hurting my son. I’m no longer anxious to go, so it makes me feel a whole lot better.”

The medical procedures offered at Practice without Pressure are covered by insurance, but the practice sessions, costing between 50 and 150 dollars are not. Founder Jastrebski says she hopes insurance companies will eventually see that paying for such sessions is cheaper than sedating patients, as well as less stressful.