One Size Does Not Fit All: The Lived Experiences of Children and Adults Who Have CVI

Over the last 30 years, there has been a significant shift in the main causes of visual impairment affecting children. Previously, visual impairment was mainly due to ocular pathologies, such as congenital cataracts and retinopathy of prematurity (Fazzi et al., 2007). However, due to advancements in medical care, especially in developed countries, these conditions are now being detected early and treated effectively (Gorrie et al., 2019). In more recent times, cerebral visual impairment (CVI) has emerged as the leading cause of visual impairment in the economically developed world (Sakki et al., 2018) and a significant cause of visual impairment in developing countries (Philip, 2017; Swaminathan, 2011).

As the numbers of children with CVI needing support in education settings increased, assumptions were made that strategies that had been used effectively to support children with ocular visual impairments (OVI) would be just as effective for children with CVI. Although these strategies can help some children with CVI, others have shared that OVI approaches are not effective and, in some cases, can be detrimental (i.e., enlarging reading material increases the complexity of the visual scene and can make it more difficult to understand) (Martin et al., 2016; McDowell, 2021). It is important, therefore, that alongside research focused on evidence-based strategies that are effective for supporting children with CVI, the voices of those with the lived experiences related to CVI need to be heard.

The aim of this commentary is to provide a space for lived experiences to be shared and to reveal the different strategies that people with CVI have used across the life span, from childhood to adulthood, that they found effective. Toward this end, three families and one young adult were invited to participate and provide responses about the strategies they use for CVI using a 3-2-1 question framework. The 3-2-1 questions were:

What are three strategies that you use that significantly help you in relation to your CVI?

Provide two areas related to your CVI that you (and your family) are still trying to understand.

What is one thing that you would like people working with children and adults who have CVI to know. What do you feel is the most important message?

Lived Experiences With CVI

The individual responses have been summarized in the following sections.

Ashlee and Jackson

Ashlee is mother to Jackson, who is 5 years old. Jackson has had CVI since birth and was diagnosed at age 2 years. Ashlee shared three strategies that they use every day to support Jackson in relation to his CVI. These include using lights and textures to engage Jackson in different activities; for example, Jackson loves messy play using his hands, and Ashlee has added textures to enhance his books (faux fur, fluff for clouds, and string). The second strategy involved creating a plain dark background for different activities, such as at mealtimes, when Jackson is eating off his tray, and in his play area. Using a plain dark background helps to ensure the space is completely dark, which seems to assist Jackson in focusing more on the activity. The third strategy was to find out where Jackson sees best and to always present things within that field. They have come to understand that Jackson does not have the best vision from the top of his head down to eye level, so Ashlee tries not to present anything in this part of his visual field. Jackson has great peripheral vision, from the bottom up and then from the front, so it is in this area where things are always presented to him. Ashlee also shared a fourth “bonus” strategy of starting early intervention as soon as possible, since it has made a significant difference for their family.

One area that Jackson and his family are still working out has to do with understanding what Jackson can actually see and whether his eyeglasses are helping him. He is nonverbal, which can make it difficult to know what Jackson's visual world looks like. Another area they would like to understand better is how to best set Jackson up for success during an activity. Although they are always trying different approaches, such as using dark backgrounds, Jackson cannot tell them which approach works best for him when doing different activities. The most important message Ashlee wanted to share with professionals working in the field of CVI is,

CVI is a huge, confusing umbrella term that isn’t necessarily a useful diagnosis, as you will always have more questions than answers. … While it has been helpful to talk with other parents of children with CVI, what has worked for their child won’t necessarily work for my child, as they are all so unique.

Ashlee feels that, in many ways, “CVI” on its own is not necessarily a helpful diagnosis, since it was hard to work out what to do next with that information. She would have preferred to have more information about Jackson's specific visual issues, since these details would have helped her in terms of working out the next steps.

Leah

Leah is 10 years old and has had CVI since birth, although her CVI was not diagnosed until she was 6 years old. Leah has three specific strategies that she uses regularly that significantly help her in terms of her CVI, especially at school. First, she has a mobility cane, which was introduced to her following a thorough orientation and mobility (O&M) assessment. Leah uses her cane regularly, especially in new environments, whenever an environment gets busy and at school when walking to different locations, such as the swimming pool and other school campuses.

Leah continues to have regular O&M support, which has included a session with her classmates, who all had the opportunity to experience human guiding, walking with a cane, and writing activities. Leah's mum, Tonny, believes this support has helped create a positive, empowering environment for Leah, who is now developing into a confident and efficient mobility cane user.

The second strategy that is important to Leah at school is using the Scanner Pro app, which is designed to scan documents, with her iPad. She uses the app to take photos of different learning materials, which she can then alter to reduce clutter and enlarge if needed. The final strategy that helps Leah is regular “brain breaks,” which allow her to recharge and reset her brain after a busy activity and prepare for the next learning experience.

The first area that Leah is still trying to figure out in relation to her CVI is being more organized. She knows that she does not always see everything, especially when items are not in their correct place (i.e., clothing and school bag) and thinks it would be easier if she kept different spaces tidier and more organized. It can get frustrating for her to try and find a specific item when everything is a bit unorganized, especially if she is in a hurry. The second area that Leah finds difficult is knowing how to deal with lots of noise when she is trying to concentrate. It can be especially challenging at school when the class is doing busy and noisy activities.

When asked what one thing she wished professionals working with children who have CVI knew, she simply said, “What CVI is!” Leah's mum, Tonny, expanded on this sentiment, by saying, “As a parent, I would like professionals to know there is such a big difference between people with CVI and that a strategy that has worked for one child, may not necessarily work for other children.” Both Leah and Tonny reinforced the importance of every child with CVI undergoing an individual assessment to determine what they need, especially in an education context.

Mae

Mae is 15 years old and has had CVI since birth. However, their CVI was not diagnosed until Mae was 12 years old. Mae described two broad areas of compensatory strategies that are effective in all aspects of their life. The first compensatory strategy is the use of nonvisual approaches such as braille, a white cane, and a screen reader for access to social, academic, and employment activities. Mae described these approaches as being helpful in freeing brain space that would otherwise be used trying to interpret unreliable visual information, resulting in them being happier and able to do more each day.

The second compensatory strategy is being able to control their environment and daily schedule to be accessible. Mae has control over planning and self-managed pacing of their day, to avoid extreme fatigue. Mae is homeschooled and gave the example of being able to decide whether they wanted to learn in a busier space in the house, such as in the kitchen or dining area; or move to a quieter space, such as their bedroom, where they could control the noise, motion, and lighting better. Mae stated that having total autonomy over their life and decisions is the keystone to their independence and allows them to choose when they want to use their vision to do a task and when they want to use their nonvisual skills.

Mae would like to expand their nonvisual skills and learn tactile communication, since the combination of CVI and an auditory processing disorder means that Mae qualifies as deafblind. Nonvisual skills are an area that Mae is still trying to figure out, since they are having some difficulty in finding someone to teach them these skills. Mae feels that using tactile communication could be revolutionary for them, noting “My tactile sense doesn’t get knocked down very easily. Being able to communicate in a way that could be understood foundationally in a very destabilizing environment would be huge for me.”

The second area Mae wants to better understand is the overall impact of CVI on the autonomic nervous system and the long-term effect this can have on overall health and wellbeing. They describe the added effect of having to constantly think about their physical health on top of their CVI as being exhausting.

Mae also shared a piece of advice for carers of people with CVI. For Mae, it has been important that, whether or not they can do a task visually, they are always given access to and have support to use nonvisual compensatory strategies to do that task. Mae feels that,

It doesn’t matter if a person with CVI can do a task visually one day, because visual strategies break down very easily and are hard to rely on. Every “CVIer” deserves having the option and support to develop nonvisual skills to rely on or to be supplementary to their vision.

Jack

Jack is 20 years old and has had CVI since birth, although he was not diagnosed until he was 15 years of age. Jack outlined three main strategies that he uses on a daily basis in relation to his CVI. The first, and probably the most impactful, is his dog guide, Laredo, who is 3-and-1/2 years old. Jack described getting Laredo as being life-changing and that navigating with him is extraordinary, “It is so liberating. In a crowd, when my eyes get confused or my brain can’t process everything, he just does it. He does the navigation that my brain can’t process.” The second strategy Jack uses that significantly helps him academically, is enlarging reading materials. “In my research lab, I do a lot of computer coding and statistical coding; all of that I blow up really big, so it is easier to see.” Jack noted that enlarging the materials he needs to read takes up less visual energy for him than when the information is smaller; it means he can understand the material better. A good example of the benefit of enlargement is graphs, which he uses a lot in his research. When they are big, he has a much better grasp of them. The final strategy he uses is to put yellow electrical tape on everything, such as his keys, wallet, phone, iPad, and water bottle. Every personal item he needs to retrieve has a strip of yellow electrical tape on it, which makes objects so much easier to find in a cluttered background.

For Jack and his family, there is one main area that they are trying to figure out for him, which is full independence. Currently, he is living in a dorm room and is completely independent in this space, but he feels that learning independence for living in an apartment, which he would like to do, is just a little bit more challenging. There are many factors to consider in finding somewhere suitable for him to live, such as being close to campus, having easy access to somewhere to toilet his dog guide, and ensuring the environment is accessible visually. Jack does not think the move from dorm room to apartment will be too challenging, however, it is something that he needs to consider closely, and his family is supporting him.

Jack's final message to professionals who work with both children and adults who have CVI is to let them tell you the amount of accommodation they need for different contexts and situations. Jack gave the example of being encouraged to learn how to use a screen reader, but he did not feel that he needed to use that software, since there are other methods he uses that are just as effective for him. For Jack, it is important for professionals to understand what each person with CVI wants:

Meet us where we are at. Don’t think every one of us needs to be treated like we are fully blind. Some people will want to do full braille and some people won’t. I don’t think it is right to force that on someone.

Conclusion

There are two important takeaways from these discussions that, if addressed, will help ensure that professionals offer more effective support to children with CVI. First, early screening to identify CVI to allow for early intervention is imperative. Although each person I interviewed had CVI since birth, only one was identified and diagnosed at a young enough age to receive early intervention services, which made a significant difference in helping his family support him. Second, every person with CVI is unique, and the strategies they use in everyday life need to be tailored to their specific needs and personal preferences. As Jack so eloquently highlighted, it is important to “meet the person with CVI where they are at.” This sentiment is also in line with Mae's desire to have total autonomy over when they do and when they do not use their vision.

Both children and adults with CVI need to have a range of tools in their CVI toolbox that they can draw on at any time, which will allow them to choose the right method depending on the context and situation. Having these discussions about the different strategies used by others also provided me with an opportunity to reflect on my own strategies. As an adult who acquired CVI at the age of 16 years, aspects of my own experience may be different to those who were born with CVI (e.g., I had to relearn skills such as reading that I had previously mastered as a fully sighted child). However, my approach to the strategies I use is similar to those described by the people I interviewed, and their thoughtful responses resonated with me.

The first and most important strategy that has made the most significant difference in my life is gaining knowledge about my CVI and how it affects me on a daily basis. With knowledge comes power. Through the gift of knowledge, I was empowered to be in charge of my own rehabilitation plan and, in a sense, my own destiny. Even after over 10 years of investigating and exploring my own CVI, I still do not know everything, and I know I will continue seeking out knowledge about my visual world for the rest of my life.

Like Mae, the second strategy that I use to manage my CVI is controlling my environment. I have created a life for myself that allows me to function as if I do not have CVI the majority of the time. My environment is fully accessible to me, I have a fantastic support network made up of family, friends, and colleagues, who all have a good understanding of my visual issues and what support I might need in different situations. I also have an extensive CVI toolbox that is full of a range of strategies that I can draw upon at any time that will help me. This toolbox has been developed through trial and error, and I know the exact tool to use in different contexts, and I can trust completely that each tool will work for me.

The third strategy that makes a huge difference in my life is to be kind to myself. My visual issues are always going to make certain things difficult—for example, locating items in an unfamiliar supermarket—but, because I have that deep understanding of why it is difficult, I give myself space and time to work through these challenges.

Although I feel that I have all the strategies I need to live a fulfilling and rewarding life, the one aspect of CVI that still trips me up every now and then is being able to balance and maintain overall well-being while dealing with the knock-on effect of my visual issues. Although CVI is mainly understood to be a visual issue, in reality, it affects all aspects of my life, especially my physical health. The effect of constantly over-functioning (i.e., working so hard to be able to engage with the world in the same way as someone who does not have CVI) causes a huge strain on my body. I feel like I am constantly juggling numerous balls just to maintain my overall health. Eating healthily, exercising regularly, getting enough sleep, and practicing mindfulness are all so important, but if any one of these balls gets dropped for whatever reason (e.g., travel), I lose that balance instantly and it is hard to get it back. Although this experience may be true for most people, as someone with CVI, when I do not have balance and overall well-being, my visual abilities decrease, which, of course, makes everything so much harder.

Although this commentary only describes the experience of five people with CVI and their families, it highlights how important it is to listen to lived experiences. For me, this exploration of personal experiences with CVI further cements what I believe all professionals supporting children and adults with CVI should know: There is no one-size-fits-all approach to providing support to people who have CVI. There is no recipe book that will provide all the answers, and there never should be. We are all unique. We all have our own strengths, weaknesses, goals, and dreams—just like everyone else. I ask that professionals walk alongside us on our CVI journey, as we work out what strategies allow us to thrive and succeed in all aspects of our lives.