With Perkins’ tele-health program, kids with vision impairments continue to receive support through the pandemic

The Infant Toddler Program at Perkins School for the Blind is ensuring that children with visual impairments or deafblindness have access to services in the crucial early stages of development. The program is the sole provider of vision services for infants and toddlers in Massachusetts, a support that has not faltered even during the COVID-19 pandemic.

Research shows that children are most receptive to learning in the early years. Ensuring access to services from 0-3 years therefore becomes most critical.

The Infant-Toddler Program of Perkins’ School for the Blind offers this support through a mix of educational services and family support critical to a child with visual impairments or deafblindness during the earliest years of development.

Program launched in 1980

At the time of the program’s launch in Massachusetts in 1980, there were few disability programs targeting children at this early stage in the United States. Even today the Infant Toddler Program is the only provider of vision services for this age group in this state, empowering not just children but families too.

“I came to the program over 20 years ago as a parent to a child who was totally blind”, says Teri Turgeon, Director of Community Programs, Perkins School for the Blind. “This was a life changer for me. So much of what we do is driven by our empathy as parents”.

The scope of the program extends beyond the Perkins’ campus to the home and community. Specific programs are designed for every child based on their strengths and challenges. Parents and caregivers play a key part in this process.

Parents want to connect with their babies and create meaningful routines and if you have a baby with a vision impairment you often don’t know where to start. We help lay the groundwork for parents for educational intervention or to help develop pre-braille skills. Relationships are how children learn best, especially very young children. We help parents develop strong relations with their child as this forms the backbone of learning. – Brenda Allair, Infant Toddler Coordinator, Perkins School for the Blind

Empowering families in many ways

Families are empowered in a program that combines in-home teaching and group learning.

“All the parents who come to us say exactly the same thing – ‘We never thought this could happen to us’”, adds Turgeon. “One of the things we make sure they know at Perkins is that they are not alone. Even when the children go onto school, or when they are older, between 18 to 20 years old, parents can come back to Perkins and ask for assistance”.

Jessie Wetzel‘s daughter Addyson was three months old when she was diagnosed with a condition called Leber congenital amaurosis, meaning she was visually impaired. Addyson joined the program when she was six months old and stayed on until age three.

“I wanted a place that I could learn, a community that would foster that knowledge, and a place that created a sense of family”, says Wetzel. “The second I set foot on the Perkins campus, it felt like it was the place where I was meant to be. The program absolutely made me feel better equipped to support my child. It introduced me to amazing professionals that were trained to help us every step of the way and created a support system around my daughter and our family”.

Sustaining this close knit, community spirit was a concern after the pandemic. Fortunately, a tele-health program Turgeon initiated months before has proven to be effective. This was a pilot program that was looking at ways to reach more families with a limited number of teachers.

“Five of our teachers for visually impaired (TVIs) children were working with 10 families virtually on Zoom as part of the pilot”, explains Turgeon. These TVIs stepped up to support the other teachers and within two weeks the tele-health program took off. “By September, we had done 1500 virtual visits”, says Turgeon. “When we come out of the other side of this pandemic, we will continue offering this to families going forward”.

Even the on campus weekly meetings are now held virtually. These sessions offer parents an opportunity to meet with social workers and other parents to discuss raising a child with a visual impairment.

“One of the fun things has been watching parents share their children’s milestones”, says Allair. “They want a space to share the exciting things their kids are doing and it’s a joyful space where they learn to support each other”.

For Wetzel, who became a TVI with the program in January 2021, Perkins represents hope. “Perkins is a place where you can go and tell the saddest story you think you’ve ever heard, and there will be someone there to tell you ‘It’s okay.’ Perkins represents family and it represents hope.”

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