Five-year-old Eli has a rare and severe condition called Cornelia de Lange syndrome that limits him in multiple ways. He is nonverbal and has difficulty communicating. He needs support to stand.
His condition created a challenging assignment for the Temple graduate occupational therapy students who chose to custom-build helpful adaptive devices for Eli as their semester-long project in the hands-on Assistive Technology class.
“I had in my mind what kind of equipment would most benefit Eli, but I wanted the students to figure it out themselves,” says Colleen Carroll, Eli’s occupational therapist, who worked with the class. The students interviewed his parents over Temple's privacy-securing telehealth video platform, she says, and “met with me as his occupational therapist, to get an idea of what the physical therapist and I work on with him during our sessions. They asked a lot of great questions.”
The students suggested building for Eli a supportive Mickey Mouse-themed chair for tabletop activity and a stander (a box to aid his standing) resembling a Buzz Lightyear rocket ship. These would help stabilize him while he could work on tasks with his therapists, or just sit and watch TV. “It was exactly what I had been thinking,” Carroll says.
Understanding assistive technology is an important part of occupational therapy education. Obtaining or improvising equipment, to augment therapy or make everyday tasks easier for individuals, is part of the job for an OT practitioner, says Cynthia Abbott-Gaffney, the Temple assistant professor who teaches the class.
“As occupational therapists, we have to do it all the time,” she says. “Because individuals with disabilities, special needs, medical conditions, they need equipment, to help with standing, to help support the upper limbs, to enable them to be able to do something they wouldn't otherwise be able to do because of physical or cognitive or emotional differences. Sadly, a lot of the prefabricated equipment manufactured by companies is unbelievably expensive. It is the opposite of what you would anticipate, given the target population.”
COVID forced students in Abbott-Gaffney’s Assistive Technology class to switch things up considerably in the fall 2020 semester. Student assessments of individuals in need, and interviews with clinicians and families normally done in person, were conducted remotely by telehealth video. Ordinarily, in designing the custom-made equipment, the OT graduate students receive multidisciplinary input, partnering with colleagues in Temple’s College of Engineering and Tyler School of Art and Architecture.
“Usually we have access to a metal shop, a wood shop. This time, we had to use our classrooms in the STAR building, where we imported necessary power equipment and building tools,” Abbott-Gaffney says. “We had to be in full PPE. There could only be 13 students in a classroom, and no one could go in and out of anyone's classroom. I livestreamed myself from one room into the others.”
In past years, the class has built adaptive devices for children at the HMS School for Children with Cerebral Palsy in Philadelphia. But due to health precautions, that changed, too, and the fall class created equipment for adults at Inglis House, a long-term disability care facility in Philadelphia, and children like Eli who work individually with area occupational therapists.
The class was able to deliver gear to Inglis House in person, at the end of the semester just before Christmas. Equipment included a decorated foldaway workstation for a nine-year-old girl who felt frustrated performing schoolwork at home, and a wheelchair-mountable iPad holder.
“There was an individual who did not have use of the upper extremity, only finger use, and he wanted to be able to access his television,” Abbott-Gaffney explains. “The only way that this individual can change the channel usually is to wait for the nurse. So they made a side desk that allows him with one finger to access the remote through his iPad.”
For Eli, the occupational therapist hoped for something that would support him standing so she and the physical therapist could work on tasks such as his fine motor skills, trunk rotation and movement involving crossing his midline (moving a body part to the other side of the body).
Eli’s family had visited Disney World in 2019, “and I saw pictures and video of him, and how happy and excited he was there,” says Carroll. “The students totally surprised me with the Mickey Mouse chair and the Buzz Lightyear stander.”
Because of his condition, Eli’s feelings can be hard to read.
“He doesn't make a lot of eye contact. It may seem to somebody that he doesn't acknowledge you're in the room. But I've been working with him long enough that I know he knows,” Carroll says. “It was the same thing when he went into the chair and the stander. He started feeling it, tapping it like a drum. He was moving his head all around, looking at it. And you could tell, he knew it was new, and he was interested.”