Educational Partnerships Sprout Hope

Perkins School for the Blind reaches far beyond our 38-acre campus in Watertown, Mass.

Through our Educational Partnerships (EP) program, headquartered at the top floor in the Early Learning Center building, Perkins installs more than 40 itinerant teachers for the visually impaired (TVIs) into 500-plus homes in Massachusetts. And parents can access Perkins’ network of expertise anywhere within Wi-Fi, through the affiliate Wonderbaby.org, as well. More on that later.

On the home front, Perkins TVIs instill and uphold the nation’s first school for the blind’s mission tapping the full potential of children who are blind, deafblind or visually impaired, with or without additional disabilities.

Though the Educational Partnerships program can serve students until they are 22, the first phase of this program begins anywhere from birth to three years old, when TVIs come into a child’s natural environment, their home, to guide them through this crucial developmental stage. In this first phase, ideally the ultimate goal at age 3 is transition from Early Intervention in the home to a preschool setting.

Once a child is diagnosed with blindness or visual impairment, Perkins receives the referral from various channels—Early Intervention Centers, ophthalmologists, parents, other family members, etc.—and our EP program, headed by Director Tom Miller, begins the process of entering that child’s Early Intervention team. Specifically, Perkins TVIs offer their expertise on how that child’s vision affects all aspects of his or her development.

TVI Mara Evans holds paddles, one with a line pattern on it, in front of little Terrance, 3, to determine his visual attention to a patterned target vs. non-patterned.

For many parents of children who are blind, deafblind or visually impaired, this can be a very confusing and scary time, before Perkins partners with Early Intervention.

Although Early Intervention Centers (EIC) exist for children with developmental delays throughout the Commonwealth, often they don’t contain a vision specialist. Find a local program at Family Ties of Massachusetts.

“They have services like PT (physical therapy), OT (occupational therapy), speech, education, nursing, social work, but they don’t have a TVI,” said Ann Ross, a social worker in Perkins EP program for 30 years. “Whenever there’s a child in Early Intervention and there’s a vision issue, early intervention will call and make a referral to us.”

Blindness and visual impairment are also low-incidence disabilities, Ross said. This means that often families are the only people in their town who have a child who is blind, deafblind or visually impaired.

“I know the first week we had Kyran, we had nobody,” said Kyran’s grandfather Joseph David Connors Sr. “We didn’t know what to do. We kind of just winged it. By the second week, it was unbearable. No matter what we did he wasn’t happy.”

Kyran, 1, had been diagnosed with cerebral palsy and was receiving care from his home health aide Nikcy Bruce and Early Intervention physical therapists. When problems with his vision arose, Early Intervention on the Cape called Perkins.

Miller assigned TVI Mara Evans, whose territory mainly covers Cape Cod and its islands, to visit the Connors’ Yarmouth home. Evans now works with the rest of Kyran’s partnership, collaborating with the infant’s caregivers and EIC specialists to overcome delays in his development.

Before we get into Evans’ role in the Educational Partnership, first a little background on how this collaboration is formed.

The Initial Intake

TVI Mara Evans reads a book to Terrance, 3, and gets him to point out different objects by name on the pages.

“Whether it’s the ophthalmologist, early intervention worker, etc. that recommends Perkins School for the Blind to a family, it’s often kind of daunting,” said Ruth Silverstein, a Perkins EP social worker of almost 13 years. “Unless it’s an obvious blindness, which very rarely happens, it’s nice for the family to meet us—in person or over the phone—so we can describe our service, which is primarily a home visit from a specialist in vision.”

When Ross makes home visits, she gets a feel for where the family members are with their child’s diagnosis and how they’re dealing with the services they’ve received thus far. She discusses what doctors have said to them. Do they necessarily understand what they’ve been told? Then she informs them how Perkins can help, through Infant/Toddler services, home visits and parent-baby groups.

In any case, the main objective of the social workers when they talk to families is to retrieve necessary information for a Perkins TVI, who will have to visit the child in the home.

“We’re really trying to set the groundwork so that the teacher will be successful,” Ross said.

Perkins TVIs have to interpret the information they are provided from ophthalmologists, social workers, the parents, other specialists and their own observations and assessments of the child to determine how this child perceives his or her world.

“Everyone uses their vision differently.”

TVI Mara Evans teaches Terrance, 3, about his facial features--their names and where they are on his head.

Assessment is an ongoing process that TVIs repeat frequently to see what a child has learned and what has changed. Once certain developmental skills are determined from lengthy inventories like the Oregon Project, TVIs then know what to work on next and how to teach them based on these assessments.

Finding the right route to navigate a child, who is blind, deafblind or visually impaired, through development can take patience, understanding, and experience certainly helps. Every child requires a unique assessment. And paying close attention to how vision is affecting the child's development will ultimately unlock a solution, “especially with a kid who can’t tell you,” said Barbara Bamel, a Perkins TVI who's responsible for the Greater Boston area.

She maintains an open mind, when entering a home for the first time, and let’s none of her preliminary information sway her before she meets the child.

Although she’s provided some information on the overall eye health of the child—usually an eye exam conducted by an ophthalmologist—from the social workers “that doesn’t tell you necessarily how the child uses their vision,” she said. A lot of times, Bamel enters a home and will notice something right away because she understands vision and how it impacts development across the board.

Several assessment tools help her narrow down a child’s vision capabilities. Through functional visual assessments, like Project IVEY, Bamel answers three questions:

1. How much usable vision do we (she and the parents) think the child has?
2. How is the child using this vision?
3. What other senses are they using with it?

She answers these questions considering certain things in her observation. Does the child look while reaching for something? That’s a “visually-guided motion,” she said. Does s/he look, look away and then reach? They may be using peripheral vision (the side of their eyes), which is called “eccentric viewing.” She also takes into account if the child can coordinate their vision with other senses.

Back in Yarmouth, at the Connors residence, TVI Mara Evans is putting these assessments to practice. She holds a cluster of shiny bells that resemble grapes on a vine directly in young Kyran’s visual field. She pays close attention to his eyes as she tries to hold his attention. Is he following them by sight or by sound? She holds a rubber ball close to his face, which he then reaches for. She lets him pull it in and he brings the ball to his mouth.

“Has Kyran been bringing objects to his mouth?” she asks his grandfather, Joseph. “That’s a skill we want him to have!” As the primary motivator for infants, vision permeates into so many other developmental skills an infant must have to transition into more advanced skills.

Collaboration

TVI Mara Evans holds a white ball just out of Terrance's, 3, visual field to test his peripheral vision.

TVIs build a relationship with the parents, as well. Another function of the home visit is to empower the parent or caregiver to initiate these assessments and observe their child closely, in the teacher’s absence. The partnership educates the parents too. They will carry their child’s medical/educational history, personal history, essentially anything that specialists will need to usher this child into adulthood. Even an observation as small as noticing their child shields her eyes in the sun, Ross said, will help the teacher reevaluate the child’s vision.

As Kyran stands propped up in his Riften Prone Stander, which corrects his posture and strengthens his body in the living room, he slowly follows the path Evans draws in the air with a yellow rubber lizard squeak toy.

“I think he follows the sound,” says Nikcy, Kyran’s home health aide. Sure enough, Nikcy is correct. Kyran won’t follow a silent ball that Evans guides along a similar path.

“You’re right,” Evans says.

Although Evans is the vision specialist, Nikcy’s extensive time spent with young Kyran offers insight into his behavior. She had noted his dependence on sound.

“If he can’t hear something, he gets very agitated,” she said. And his expression lights up when he hears the sound of his grandfather’s voice.

These observations are vital for Evans’ visual assessment of Kyran, which she will be wrapping up within the next few visits. In the meantime, the Connors will continue to monitor Kyran and employ the suggestions she provides—she'll bring small sunglasses and a hat for him next time so he can better adjust to the outdoors—during her semi-weekly visits.

“Whatever the TVIs are recommending, for better or worse, the parent needs to follow through and report back to the teacher,” Silverstein said. “It’s really a collaboration.”

Parent Groups

When parents need additional support and feel that their children are ready for social interaction with other kids who are blind or visually impaired, they come to one of Ann Ross’ or Ruth Silverstein’s parent groups, which meet once a week on Perkins campus, in Watertown.

“The groups vary in terms of vision impairment and (other) disabilities,” Silverstein said.

The social workers separate parents from their kids during group so that Ross and Silverstein can let the parents share their experiences and workshop ideas on how to educate their children.

Ross admits some of the information may sound obvious, but she said one parent confessed “it just makes you feel good that you’re doing the right thing!”

“It’s sort of like they are sitting around somebody’s kitchen table in a neighborhood,” Ross said, “except it’s a neighborhood where all the kids are blind.”

First Steps: Perkins School for the Blind's Infant/Toddler Program

Ultimately, the goal of the group is “parent education, empowerment and for them to become advocates for their kids,” Silverstein said. “The teachers are doing that in the home as well, while providing services.”

The emphasis on parents in these groups is really at the heart of the Educational Partnerships program. As stockholders in the lion’s share of information on their children, who are blind, deafblind or visually impaired, the parents form the glue that holds these collaborative entities together.

For some parents, Perkins’ Watertown campus may be too far a drive to make once a week. But that doesn’t mean they still can’t trade stories and learn from other parents who may have similar experience with blindness. The Perkins-affiliated site Wonderbaby.org offers a vast array of resources and articles for parents of children who are blind or visually impaired. It also offers a Q&A forum for parents to ask and answer questions, when the low-incidence of blindness has them feeling alone, with nowhere to go.

The salvation parents seek does not lie at the end of the rainbow in some particular school or center for the blind; it exists in the home, where TVIs can educate kids and parents; it exists in the parent groups and online, where parents can educate each other; it exists within every relationship built upon this intricate network of care and expertise... especially the bond fortified between parent and child.

As Wonderbaby.org founder and mother of a child who is blind, Amber Bobnar, says, "We focus on teaching our children all they need to learn in order to be as independent as possible; we are often surprised to find out that we are learning so much from them!”

If you or someone you know has an infant or toddler in need of vision services, please call Perkins Educational Partnerships program at (617) 972-7393 or email EarlyLearningCenter@Perkins.org.