Parent volunteer Ute Ren taking Victors blood pressure.
photo by Shannon Carr
The Special Hope Foundation is committed to making quality health care accessible to adults with disabilities. Shannon Carr of the Morgan Autism Center shares the story of how parent Ute Ren is helping individuals with autism feel more comfortable visiting the doctor.
Visiting the doctor’s office can be scary for all young children. For a child with autism, that fear is often compounded by other developmental issues they inherit.
According to the CDC, nearly 40 percent of children with ASD do not talk at all. Another 25 to 30 percent have some words at 12 to 18 months of age and then lose them.
Ute Ren knows the situation all too well.
“Our son is not able to comprehend what will be happening in a doctor’s office,” she says. “So I try to reenact it at home, and to make him familiar with the equipment through repetition.”
Because of this, “the last doctor visit was much better,” Ute says. “I was able to hold the stethoscope against his chest while the doctor was listening.”
Wanting to share this success with other parents, Ute — who is also a retired nurse — implemented the desensitizing practice at the Morgan Autism Center in Redwood City, CA., where her son is a student, nearly a year ago. The center is a leading provider of individualized educational services for people with autism.
More about the Morgan Autism Center here.
“I am so happy to volunteer and hope to develop more programs to help with the preventive care of our kids/adults,” she says.
Ute visits with students and adults on a monthly basis. She reenacts taking their blood pressure, weighing them on a scale, checking their height and listening to their chest with a stethoscope. This happens all at the individuals’ own pace rather than within the time constraints dealt with at the doctor.
“I try to make the kids and adults familiar with the different equipment they would encounter in a doctor’s office,” Ute says. “Even if it seems like a tiny step, it can accumulate to a skill over time so that our kids can actively participate in their own care.”
In February, she held an in-service with Morgan Autism Center employees about the correct technique using an
EpiPen® Auto-Injector. This is a disposable, pre-filled automatic injection device that administers epinephrine in the event of a severe allergic reaction.
Despite Ute’s work so far, she believes there is more to be done.
“My next project is the dental care of people with a severe developmental disorder,” Ute says. “Most information is geared to patients who have the cognitive ability to follow directions.”
Executive Director Brad Boardman is grateful for Ute’s services.
“Doctor’s appointments can be very intrusive for anyone,” he says. “Parents often struggle with getting to medical appointments due to the anxieties their children feel. This activity is designed to get students comfortable with basic doctor’s office behaviors, making a trip to the doctor a positive experience for everyone.”
Do you have a story to share? Send it to laura@withfoundation.org