Guide

Vision loss in the preK-12 years

Planning, support and self-advocacy are essential for gaining independence. How parents and teachers can help.

By: Francesca Crozier-Fitzgerald, Director of Miami Lighthouse’s CVI Collaborative Center 

In this article, we chat with Kate Katulak, a Teacher of the Visually Impaired (TVI), and former Associate Director of College Success @ Perkins, about her expertise on adventitious vision loss, and counseling college aspiring students with visual loss toward college readiness. Kate is now the Associate Director of University Accessibility at Harvard University in Cambridge, MA.

Stages of grief and shifting mindsets

When an individual develops a visual impairment after birth, or loses his or her sight completely due to a traumatic event, acquired illness, or degenerative, genetic condition, it is considered adventitious vision loss. It can occur at any age and can be anticipated or sudden. Regardless of whether it is sudden or gradual, adventitious vision loss can be traumatic. Losing one’s vision is a shock to a student’s world — their identity, sense of independence, social emotional stability and outlook for the future. This change impacts a person’s family as well, creating unknowns, new systems to navigate and concern about how to support the student.

As with any traumatic event, the individual, in this case, your student, will have their own personal experience with vision loss. Depending on the age of onset, the individual will endure the impact of diagnosis and progress through potential stages of grief, emotional, academic and social adjustment journeys. These are journeys in shifting mindsets, identity, self-awareness and self-respect. As parents and educators, we need to understand the value of allowing space and time for those journeys to unfold. When we allow our students to adjust to their vision loss, and new reality, over time, we can help them to develop a deeper understanding of their capacity, despite vision loss, and become empowered to gain new skills. 

Kate Katulak, former Associate Director of College Success, has spoken in many settings on the unique challenges associated with adventitious vision loss and the shift in mindset that can occur, with support, over time. “For the individual, depending on the age of onset, this traumatic vision loss may force them to shift their view of the world and the way they see themselves in it,” Katulak observes. “This can often take years, even into adulthood, as students move from considering themselves a ‘sighted person who is blind’ to a blind person.” 

Traumatic vision loss may force a shift in their view of the world and the way they see themselves in it. This can often take years, as they move from considering themselves a ‘sighted person who is blind’ to a blind person.” 

Considering the psychosocial implications 

In her years as a teacher of students with visual impairments, co-facilitator of Perkins’ Pre-Employment Program, and her recent work in College Success @ Perkins, Kate has seen that there can be, understandably, a lot of resistance to this shift at all ages. She finds it especially challenging for students in middle school and high school. “With adventitious vision loss, we need to consider the psychosocial implications because they are at the core of this discussion. Friendship and emerging senses of independence are at the forefront of being an adolescent and when those things are challenged, it just makes growing comfortable with vision loss more complex.” 

We need to be patient and student-centered; we need to be on standby until they are ready.

As parents, teachers of students with visual impairments, transition counselors, and others on the student’s team, we need to consider the age of onset as well as the student and family’s stage of grief and meet them where they are. “We need to be patient and student-centered; of course we have in our mind what ‘needs to be done,’ but if that student isn’t ready, then we need to be on standby until they are,” explains Kate. 

As a parent or educator, here are some suggestions for ways to support your student with adventitious vision loss, meeting them where they are and building from there:  

Support students need from their parents, that they may not know how to ask for:

It’s important for parents, counselors and educators to recognize that losing vision is going to be hard. Students need to have a chance to voice those feelings. Yes, there will be bad days, really bad days, okay days, and then maybe a good day. In time, there will be better days. But leave space for your student to express their feelings of frustration, anger and resentment in those down times, even as they are taking steps to move forward. Provide ongoing support and resources, or sometimes, just listen

If and when parents feel they may not be able to reach their student or provide the robust support they may need, parents may consider counseling services in their area. Ask your student’s TVI or Special Education contact at their school, or family doctor, where to start for counseling services. Mental health support can lay a positive foundation for self-awareness, self-confidence and self-motivation, which will all be critical basis for future planning in your student’s journey. 

Fostering positive attitudes about vision loss is crucial as your student is still engaged in their world, with a valuable life to live. Today, there are many resources, such as Blind New World, pumping out sincere, honest, motivating stories of ambitious individuals — children, teens, young adults — sharing how they came around to accepting their vision loss and found many different ways to take steps toward achieving their goals. Finding time in the day to focus on reading and digesting these stories, such as these from the American Federation for the Blind, can make a big difference. 

“They may feel that their lives have been turned upside down and they’re no longer feeling the same sense of independence,” adds Kate, “so they may not see themselves as they did before, and their social lives are changing. Confiding in others who have endured similar vision loss can allow the student to see themselves in that person and recognize that they, too, can still have the things that they once had. They may not regain vision, but they may still engage in the same or similar hobbies, have meaningful relationships, and land the summer internship they wanted, with accommodations.” 

Together, contact the division of blind services in your state to identify where and when your child can access new options such as adaptive sports teams, one-on-one instruction in assistive technology and other skill development. Blind services can also connect your student to other students with vision loss, to begin to provide a network of peer support. Explore ways that your student can still swim competitively, or find a competitive sports team of their choice. If reading and writing are their favorite hobbies, explore with their TVI the most accessible formats to access the novels they love, or to continue writing, participating in book clubs or online literary forums. Get your student access to weekend assistive technology instruction that can get them up to speed on the technology skills they’ll need to thrive in classes. 

By supporting your student to continue to engage in familiar activities that bring meaning to their life, and possibly engaging with peers, you can support their continued engagement in the world around them. By developing strategies to create accessible experiences, you can help your student gain the confidence to continue to engage in the activities that they enjoy-therefore supporting their growing, and adjusting, sense of identity, and expanding it. 

Once you can understand where your student is on their journey in understanding and accepting their vision loss, their unique goals, strengths and passions, you can better plan your role in support. If the root of their pain comes from the inability to do the thing that brought them joy, it may be important for your student to explore that issue with greater depth. If a feeling of resentment comes from having been in an accident, or a family-inherited gene, family counseling with a trained professional could be very valuable. 

“As with any form of trauma,” adds Kate Katulak, “disability included, one leading model to support students is to have at least one person in that child’s life that believes in them.”

They have to have a trusted adult with whom they feel safe, who believes in them and believes in what they can achieve.

A supportive parent or educator can be that person. A counselor can be that person. A mentor who has also endured a similar trauma can be that person. “That person is a predictor for success.”

When counseling is brought up as an option to help support a student, usually by the TVI or Transition Counselor, it’s rarely readily accepted or sought out by a student or family. Young people are often resistant to the very help needed; patience and listening is key in acceptance. “We can make huge strides by normalizing counseling for our students with adventitious vision loss,” says Katulak. 

Supports students need from their teachers/TVIs, that they may not know how to ask for:

At the same time, encourage your student to reconnect with activities that they enjoyed before vision loss.

Acceptance and growth

When we empower the student to move at their own pace, we support their growth into this new reality.

At their own pace, your student will grow on their path toward a more self-determined, self-controlled future, despite the unexpected challenge of adventitious vision loss. Once they are ready, we can support them in their journey toward skill building and planning for their future. They can start to explore and integrate tools which will help them to be more productive and independent. Over time, your student’s mindset can shift from grief and inaction, to action and empowerment. With the proper supports in place, and the time they need to come to their own conclusions about how to integrate this new part of their identity, your student can grow to trust themselves, their capacity to succeed, and their own ability to thrive with vision loss.

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