Nov 10, 2020

Overcoming Barriers

Efrain and his mom, Maria, smile outside their home. The family is Spanish speaking
a woman squats on a sidewalk with her hands raised. she is singing a song for a young boy wearing a red shirt and sitting in a wheelchair in front of her.
On a sunny fall day, Efrain Carrillo-Aguilar sits outside his home and looks up with a big smile. He’s watching intently as developmental specialist Lindsey Jay moves her arms in circles and sings “Wheels on the Bus.” 

His mom, Maria Aguilar, is standing nearby and beaming with pride because it took a lot of work and dedication to reach this point. Efrain was born prematurely at 26 weeks and has cerebral palsy. After spending time in Cincinnati Children’s neonatal intensive care unit (NICU), the family connected with Hamilton County DD Services’ Early Intervention team.
 
The Aguilars are a Spanish-speaking family, so Jay, along with HCDDS physical therapist Barbara Risk, worked with an interpreter who could translate during conversations and home visits. “Efrain received his first therapies from them,” Aguilar said. “They gave me a lot of exercises to help his muscles and recommendations that still work for me to this day.”

After briefly moving away, the family returned to Hamilton County in March, around the time COVID-19 restrictions were ramping up. The Early Intervention team had instituted strict safety precautions and relied heavily on virtual visits. But the Aguilars didn’t have reliable internet access, which, when combined with the language barrier, further complicated services.

“Every child and family’s needs are different. His needs are a little more hands on, so we had to think outside the box to work through it,” said Jay, who has been working with Efrain, now 3, since he was three months old. “We knew we had to come up with a different option for this family. He needed services, but we needed them to be safe as well.” 

Efrain uses assistive technology to communicate and switches to operate his toys. As he progressed with his skills, Risk suggested trying a mobile stander so he could explore his environment in a different way. “For kids who aren’t able to move on their own, early mobility is very important,” Risk said. “Being able to move independently also influences development in many different areas. Our goal was getting him to use his hands more, and it didn’t take much to elicit movement.”

The Early Intervention team discussed the best strategies to introduce this new equipment while also being mindful of the language barrier and safety precautions. They settled on a combination visit, with Jay and the Spanish interpreter on Zoom, and Risk at the Aguilar’s home to demonstrate the equipment from a safe distance. 

“Maria was wonderful with all of it, and it went much better than any of us expected. She was so happy this equipment moved because she got to take him to the playground and basketball court with his cousin,” Jay said. “This is key to getting him engaged and visually exploring his environment. He doesn’t use words to communicate but to see him laugh, you know how connected he is to what’s going on around him.”

Now, when Efrain is around other children he stands more and keeps his head up to interact with them. Aguilar noted progress is slow but gets better each day. She was happy to receive help from Early Intervention, which uses a coaching model to support children and their families.

“It doesn’t matter where the child is starting off, once those doors start opening and they’re given the opportunity to explore, they show you so much,” Risk said. “It empowers parents that much more to be advocates for their kids.”
  
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