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Program for medically complex children helps nonverbal child speak using his eyes

Children's Hospital Colorado's KidStreet gives medically complex children the chance to be a kid
Program for medically complex children helps nonverbal child speak using his eyes
Posted at 9:48 PM, Aug 10, 2023
and last updated 2023-08-11 13:23:07-04

AURORA, Colo. — Children's Hospital Colorado has a unique program called KidStreet in Aurora, which functions as a therapeutic half-day program for medically complex children as old as three. The goal of the program, which has been around for 30 years, is to allow these children the chance to be kids.

Currently KidStreet can serve 32 children. One of those is Rowan Humphrey, who will turn 2-years-old in October.

Rowan has muscular dystrophy. When he was born, his diaphragm was paralyzed. He also was not breathing well and needed a tracheostomy. Shortly after the family was released from the hospital, Rowan needed a brain shunt to allow fluid that had built up to drain.

"His brain is fully intact, and his heart is fully intact," said Rowan's dad, Jason Humphrey. “He's in there looking at us, he just can't move. We have to move him.”

Rowan cannot speak, but has always been very expressive through his eyes.

“Communication is really a basic human right," said Drew Mancini, a speech-language pathologist at KidStreet. “You have to maybe work a little hard to figure out how person can best communicate when speech is hard, but it's worth the time. And it's worth the effort because kids like Rowan, and all the kids at KidStreet really have something to say."

Mancini said he has worked with Rowan for around six months, and suggested they try using what's called eye gaze technology to communicate with him with.

Using an iPad, Rowan can select different words or phrases using his eyes. When Rowan looks at a button for a longer period of time, it is selected, and the machine reads it out loud.

“He's got phrases, single words in there. He can make choices. He can tell people when he needs to be suctioned, when he's uncomfortable, if he's itchy," said Mancini. “This work is full of those first-time, aha moments.”

One of those moments came while Rowan was trying out an Eyegaze device while at home.

"He said, 'Dad.' He looked at the 'dad' tile, and the machine said, 'Dad.' And I, it felt like he said it. It melted my heart," said Jason. “I didn't think he would do any of the things he's doing now.”

Now, Rowan often requests certain songs using the same basic principles the Eyegaze machine taught him. He also can participate in the songs when using the machine.

"The one thing that they were pretty clear on [in the hospital] is that he was going to be a pretty smart kid," said Rowan's mom, Bethany Williams. “From everything that we've seen, and that KidStreet has helped bring out in him, that's really shown to be true. Like, he's a smart little kid. And he's funny, and he just adds so much joy to the world.”

Williams called KidStreet a beautiful cycle of education and communication. Since Rowan has been attending the program, she said her son smiles more than ever.

“I had no idea there are so many types of therapists, or the medical assistants and the teachers, and every single one of them brings something special to his day," said Williams about the staff at KidStreet. “So much has opened up to us by being here, and opened up to him.”

Mancini said working with Rowan has been a highlight of his career, and he wishes more children had access to KidStreet services.

“There's one KidStreet," said Mancini. “It's like a warm embrace for these families that have so much on their plate. They just got discharged from the hospital. They're trying to go back to work, they have other kids. So, being able to drop your medically fragile child off and know that they're well cared for and making progress is sacred.”

While Rowan is learning at KidStreet, he's taught his parents invaluable lessons.

“Learning to be in the moment, and really just live in gratitude," said Williams. “Every moment is precious.”

KidStreet is funded by Medicaid, which pays Children's Hospital Colorado for the program through the state budget. Every child served at KidStreet qualifies for Medicaid coverage in Colorado. In some instances, Medicaid becomes the secondary payer as parents may purchase private insurance. Without KidStreet, Children's Hospital Colorado said equivalent inpatient care would be more expensive for the children in the program.

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