How does CVI affect skill development beyond vision? Q&A with Dr. Amanda Lueck

Engaging in the world goes beyond vision. Here’s how parents and early intervention (EI) providers can foster multi-sensory learning.

Dr. Amanda Lueck smiles

We learn from all sensory input, including vision: A red traffic light means that cars stop; someone’s smile can mean that they’re happy. Vision helps to guide our body movements and plays a role in social interactions.

People with CVI typically have some vision, but their type of visual skills and behaviors can vary. They use other senses — tactile, auditory, and kinesthetic — along with vision to figure out their world. Many people with CVI use a combination of information from all their senses.

CVI, or cerebral/cortical visual impairment, refers to a type of visual impairment caused by injury to the brain’s visual pathways and visual processing centers. It’s usually diagnosed when abnormal visual responses can’t be attributed to eye problems alone. Even if you aren’t yet sure that your baby has CVI, it’s never too soon to create a supportive home environment in every way possible. It can only help.

CVI can affect skill development beyond vision. As Amanda Lueck, Ph.D. wrote in her CVI Companion Guide to the Developmental Guidelines for Infants With Visual Impairments:

“Functional vision is best promoted by optimizing the use of vision in activities that encourage development across all domains for very young children and within meaningful and functional activities identified for all children regardless of age or concomitant conditions.

To accomplish this, caregivers and early interventionists must ascertain the cause, distinct nature, and complexity of a child’s visual capabilities, and then devise optimal, systematic learning activities and accommodations that promote vision use and growth across activities within favorable physical and social environments. In this way, progress in the use of visual skills can lead to improved functional outcomes in a variety of typical activities and vice versa.”1

Essentially, targeted interventions can help your child grow and develop in many realms, especially in a supportive home environment that’s calm and decluttered.

Lueck is Professor Emerita of Special Education at San Francisco State University and a leader in the field of blindness and low vision. We spoke with her about how vision (and more) affects development and interventions for babies and toddlers with CVI.

A baby's hand rests on top of an adult's hand.

What’s the role of vision in development for babies and toddlers with CVI?

When you’re talking about young children, you can’t discuss vision in isolation: Vision and CVI can affect all developmental and functional outcomes across domains because there’s an interrelationship.

For example, motor development can stimulate a cascade of events that lead to changes in perceptual, cognitive, and social development. Vision plays a huge role in motor development, and motor development has a cascade effect across other areas of learning. It can lead to changes across developmental domains both immediately and years down the line.

How does this interrelationship impact learning and EI at a young age?

Learning is an integrated experience. Intervention is most meaningful and effective within daily routines, since they draw upon all of a child’s capabilities and provide familiar cues to accomplish a task.

What are the key areas of development for babies with CVI as it relates to EI?

Communication, social interaction, use of vision, fine motor and gross motor skills, and cognition. A lot of babies with CVI have trouble with visual motor skills. But it could also affect these other domains. It’s important to look at your child’s development in all areas!

What role does vision play for typically sighted people?

Vision is a unifying sense, and it’s a major sense. People with typical vision rely heavily on it.. But if you have degraded visual input or processing, the other senses will typically take over. Children with CVI can still understand and interact with the world in ways that bring meaning and fulfillment.

Because CVI affects more than vision, how will parents notice that CVI manifests in their baby, visually and beyond? Are there telltale signs?

This isn’t an easy question to answer, because there are not many very sensitive tests that pick up visual perceptual issues in young children with CVI.

With CVI, the ocular status of the eyes doesn’t explain why children aren’t interacting with the world visually. They may have some reduced visual acuity (the ability to detect details), but they’re not using their vision to do certain things. Or they may not be detecting things in certain parts of their visual field (their area of vision) — even though it seems as if there’s nothing wrong with their visual fields based on ocular testing, because the issue could be brain-based.

It’s important for parents to be good observers of their child’s behavior. The condition will manifest itself differently in different children. Some children might shut down in a very busy environment, because of sensory overload. When they’re in a quieter and less cluttered environment, they might operate very differently.

A toddler and adult walk hand-in-hand.

When you say they might ‘operate very differently,’ could you give practical examples of how this actually manifests for an observant parent?

A baby might not direct their gaze at you if you are in a crowded or cluttered place. If they’re a tiny bit older, they might not want to play with certain things because they can’t locate them in a pile of objects. Or they may just shut their eyes and close down a little bit in cluttered places that may also be very noisy.  These children may not be able to process auditory and visual input effectively at the same time. So, if there’s a lot of background noise or a lot of people in the family in the living room running around doing things, it might be more than they can handle in order to reach out to play with a toy.

Does CVI manifest differently for babies than for older kids?

You can test and observe more things in an older child because they can follow more directions and have a wider skill set. It’s easier, for example, to observe that a child cannot easily point to a picture of an animal in a storybook that has a page full of animals compared to a page with a picture of a single animal. A lot of children with CVI aren’t identified until they reach school age because some things, like following along the line of print, are very hard to check out in a baby.

How does CVI affect developmental milestones and timelines?

Giving timelines and milestones for CVI is difficult because children are so very unique and different. And children with CVI may have additional conditions that also need to be evaluated, to tease out the root cause of whatever behavior you see.

What do you wish more parents understood about CVI and EI?

What they need to know is that each child is different and that it’s important to carefully observe their child and to trust their observations of the child. Parents do this naturally. If they feel that their child is not doing something that they expect, then they need to get some assistance from the early interventionist, or the TVI, or the occupational therapist, to try to get an understanding of what caused the behavior that they’re concerned about.

Let’s say they’re concerned about a child who doesn’t follow as they walk across the room. Is that due to their vision? Is that due to a visual perception problem? Is that due to a problem moving the eyes? Is it due to a problem moving various parts of their body? Is that a cognitive issue? Being a good observer, and trusting what you’re seeing, is really important. The hard part is trying to get assistance in understanding the cause of what they’re seeing.

As people learn more about CVI, they can be of more help in trying to understand the root causes of a behavior. Identifying the root cause of a behavior in babies may be a complicated process, particularly when the child has complex learning needs. Careful observation of a baby’s behaviors and responses in everyday situations will guide intervention and hunches about the root cause of a behavior.

How can parents feel empowered to support their baby during this crucial learning time?

Create an environment that supports early learning. Provide a calm, organized, and distraction-free environment, with plain backgrounds, no busy patterns, and not much background noise. As a child progresses and matures, more elements in the environment can be introduced to encourage additional learning and growth.

A baby wearing glasses and a knit hat smiles.

What role can EI ideally play in a baby’s development?

EI can certainly help to set up situations at an appropriate level that challenge a child to move further along from where they are. It can also provide situations where a child is comfortable and not challenged all the time — so that they can just be a child, relax, enjoy, and not be pressured to move forward every minute of the day. Babies with CVI, like all of us, need free time to do what they want! An EI program should be balanced to provide those different situations and then work with the families to integrate these different levels of instruction to the child.

Do you have ideas for parents to work effectively with EI providers, especially as CVI is often so misunderstood?

Parents have to sometimes teach the providers, which is unfortunate. Hopefully, that’s not going to be the case in 10 years. We’re still learning about the effects of CVI, so they have to continually be in a collaborative situation with the provider. It’s a dialogue.

Could you talk about how compensatory skills play a role in development?

A lot of times, children develop their own compensatory methods for doing things. It’s really important not to stop them from doing it until the parent or the professional understands why. 

If they always reach for something on the right side of their body, that’s a compensatory mechanism. Perhaps there’s a reason that they’re not reaching to the left. They could have some physical limitations with their hand movements or arm movements, or it could be visually based. It’s important to understand why the child, when given a pile of objects, pushes them all apart and then picks an object up one at a time instead of directly reaching for an object in a pile. That’s a compensatory method.

A child may develop a compensatory way of doing something on their own. Or, if that’s not the case, then a caregiver or professional can help them understand that, for instance, if they push the objects apart, they can pick up the ones they want more readily and examine them, rather than getting frustrated.

Should a parent or provider intervene? What can they learn from observing these behaviors?

Some behaviors when first established might have promoted learning, but over time, become habits that a child fixates on repeatedly rather than interacting with their world in new ways. 

An example could be flicking the hand in front of the eyes repeatedly. It’s giving some kind of sensory input. This was engaging to the child at first, but as the behavior becomes more and more habitual, the child has stopped really learning anything from it. It becomes a rote behavior that’s not productive. In the beginning, it was productive as the child learned to attend to a self-produced movement that was interesting. But then the child becomes riveted to the hand-flicking and doesn’t move on to other things that are happening. 

Other compensatory behaviors can be advantageous over time. For example, a child who has a limited left visual field due to a problem at the back of the eye (the retina), might turn their head slightly to the left to more clearly place objects into the area of vision that’s not affected. It’s important to differentiate and understand the factors leading to each behavior.

It’s important for people to understand the behaviors, know when they are productive, and when they’re not. This takes an understanding of vision and CVI — and keen observation skills.

What’s the aim of EI in a CVI context?

It really depends on the child and their whole constellation of issues. One would hope that if they were getting regular EI with follow-through from caregivers at home, who are sensitive to the needs of their child, that the child would progress in all their developmental domains. I can’t say that EI is going to have the same endpoint for every child, because they start at different points. Skill progression may be different for each child.

What should parents consider in terms of preschool readiness?

Preschool readiness depends upon the child. The more that they can be prepared in terms of being ready to be within groups of children, social interaction, and paying attention in small groups, the better. Early literacy begins at home during finger plays, singing, and looking at books with babies and prepares them for preschool experiences.  

Parents also have to be cognizant of their child’s need for reduction of clutter, reduction of ambient noise, and the need for speech, at a pace that their child can understand. They need to work with the preschool teacher to understand these needs. If teachers could incorporate this knowledge into regular routines in the classroom, many of these things would help all children.

What would you say to parents who might feel scared or defeated?

Anything they do for their child is a marvelous thing. Anything their child does is an accomplishment. And the child will learn from that, will grow from that, will integrate that into who they are as they move from babyhood to toddlerhood to school age.

One thing that’s very important is to not compare and contrast with other children, because your child is unique and will have their own way of developing and interacting with the world. And that’s fine!

Is there anything else that we didn’t talk about that you’d like to share?

There are so many little things that parents can do in terms of using physical or verbal prompts and ways to encourage interaction, but it depends upon whether a child needs it or not. There are a lot of ways of interacting with children who have CVI: physically, visually, socially, and through language to help them become who they can be.

Find more resources and helpful information on the CVI Now Early Intervention Series home page.

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