CVI Awareness. Diagnosing and Knowing Your CVI Learner

Cortical Visual Impairment (CVI) is the leading cause of visual impairments in the United States. Uniquely, the number of people with this vision impairment will continue to increase as medical advancements are better able to assess and treat individuals with neurological diagnosis.  

Historically, individuals with CVI have had a hard time getting this diagnosis.  Since this is a brain-based visual impairment, an individual may have perfectly healthy eyes.  Imagine for a moment that you have concerns regarding your child’s vision, but every time you get their eyes checked, you get a clean bill of health.  In your gut, you feel something isn’t right.

Diagnosing CVI

According to Christine Roman-Lantzy, Ph.D, a diagnosis of CVI includes three parts.  

First, a child with CVI has an eye exam that does not explain their present level of vision.  This means that even if the ophthalmologist indicates the child has nystagmus (involuntary shaking of the eye), this would not explain why the child is not able to recognize faces of those most familiar to the child.

Second, a child would have a history of a brain condition, trauma, or damage associated with CVI.  Some of the common conditions we may see are asphyxia, encephalopathy, periventricular leukomalacia (PVL), seizure disorders, intraventricular hemorrhage (IVH), or a traumatic brain injury (TBI).  

This does not mean every one with one of these conditions or other structural brain abnormalities also has CVI.  Simply, these individuals could be considered at risk and should be monitored if there are vision concerns.  Remember, this is one of the three elements necessary for identifying CVI.

Lastly, we look for the ten visual and behavioral characteristics as outlined by Dr. Christine Roman-Lantzy.

  • Color preference
  • Need for movement
  • Visual latency
  • Visual field preference
  • Difficulty with visual complexity
  • Need for light
  • Difficulty with distance viewing
  • Atypical visual reflexes
  • Difficulty with visual novelty
  • Absence of visually guided reach

So, if it is so hard to diagnose, how do we know it is the leading cause of visual impairments?  Sadly, although the diagnosis is hard to obtain officially, it is still the most prevalent diagnosis.  Can you imagine if we had a better system to ensure no children fell through the cracks?  How many children are potentially impacted by this and have yet to receive proper medical and educational support to accomodate for their vision loss?

The good news is that the functional vision of children with CVI can and should be expected to improve.  Unlike with an ocular loss, which typically maintains or declines,  when individuals with CVI are provided with regular meaningful interventions, they can develop their functional use of vision.

CVI meltdowns are not tantrums  

Have you ever heard or witnessed a CVI meltdown?  While they might look like a child throwing a tantrum, they are not.  You might observe an individual screaming and lying on the floor, refusing to stand or walk, physical aggression toward themselves or others, or even them trying to escape.  Much like everything that surrounds Cortical Visual Impairment (CVI), no two learners with CVI look alike. This includes their meltdowns.

Overwhelmed BucketUnlike a tantrum, CVI meltdowns usually occur due to an overwhelming amount of sensory input.  Picture this: we all have an ‘overwhelm bucket.’  Throughout our day, things will fall into our bucket.  These may not be the same each day either.  These stimuli that add to our buckets could be lights, background noise, smells, physical touch, unpredictability, novelty, speed of stimuli, movements, and the list goes on.  Sometimes, things we enjoy can also add to our ‘overwhelm bucket’.   

There is good news! While not always, usually a CVI meltdown can be avoided.  Matt Tiejen has taught us that when we do not have a balance between the complexity of the visual target and the complexity of the environment, what Matt refers to as the visual battery is being depleted.  In this example, when we do not have a balance, we are putting too many drops into the ‘overwhelm’ bucket.

By finding a balance, we are trying to control how often a drop is put into the bucket at a manageable rate.  Still, we need to give the bucket a way to drain throughout the day.  For a learner with CVI, this means a time when we are giving them a break from needing to use their vision.  A calming activity, some time alone, or maybe a preferred activity could be what your learner needs to help empty their bucket before it overflows.  Providing a well balanced day with plenty of opportunities to slowly drain the bucket, before it becomes too full, is essential for avoiding the CVI meltdown

Know Your CVI Learner

Knowing your learner and their signs will always be the best tool you can have.  Even if you think you have done your best to balance the day, when you see the child beginning to exhibit those warning signs, the team should know the child is trying to communicate to you.  The learner is telling you they are hitting their threshold and they need a chance to re-charge.  

This is not a power struggle.  This is not a behavior that needs redirection or consequences.  It is at this time the team should give the child a chance to re-charge.  Additionally, the team should look at what is next in the routine to determine if any other additional accessibility changes need to be made.  That means if math is next and typically the child participates visually, the complexity of the visual task and environment need to be modified in order for the child to use their vision again. OR, and this is big, maybe they need to participate using a different modality all together.  Vision may not always be the best learning modality.

Have questions, or want to learn how CVIConnect can be a solution for your child or student. Contact us at

Back to School for a Learner with CVI

It’s that time of year.  Many teachers and students are returning to their school year routines.  For your learner, this might bring on stress, worry, and fears.  Parents might begin to have questions about the upcoming year and what their child can expect.  Professionals may begin sending home welcome letters, introducing themselves to the family.

For your learner with Cortical Visual Impairment (CVI), these things could be helpful, but will they be enough for all the novelty and complexity they might encounter?  Is there anything else that can be done to help prepare a learner with CVI?

We have compiled some ideas for the entire Individualized Education Plan (IEP) team to consider. 

I. First, begin by reviewing what is already known about our learner.  Take the time to review the latest IEP.  Remind yourself, and each other, what is needed for your learner’s success.  For team members who are familiar to the learner, re-read the learner’s present level of performance that was written in the last IEP.  Is this information still accurate?  In order to ensure you are providing the best intervention strategies, we have to work from quality data.  Does anything within this document need to be updated?  Is any additional data needed to make any of these decisions?  

Remember some changes to an IEP can be made with an addendum; meaning an entirely new IEP is not necessarily required if changes need to be made.  This includes any medical changes that may have occurred since the team last met.  If the child has had any recent diet, sleep, or medicine changes that will impact their education, it should be documented in the IEP.

II. While you’re looking at the IEP, take a close look at the child’s last CVI Range assessment.  Children with CVI are expected to make progress.  Is the information from this assessment still accurate?  Depending on when the last assessment was completed, your team may need to update this valuable information.  As a team, determine if a new CVI Range needs to be completed.

III. As you look at this important baseline for your learner, consider which staff will be working with your learner this year.  Are there any new team members?  In education, it is always important for team members to understand the needs of the whole child.  A learner with CVI brings additional elements of concern.  Most professionals have never received formal training about cortical visual impairment.

Dr. Christine Roman-LantzyDr. Christine Roman-Lantzy has identified ten visual and behavioral characteristics that can be observed in a child with a cortical visual impairment.  Staff may need training to understand these characteristics. Additionally, Christopher Russell created this great fact sheet as a resource for families and professionals.  However, it is important to remember each of these characteristics impact every learner uniquely.  

Even team members who know what CVI is, still need additional training to fully understand how each of the characteristics uniquely impact your learner’s functional vision.  Creating some cheat sheets may help new team members to recall the characteristics and their impact.  Go through each of the characteristics and describe how it can negatively and positively impact the child.  Here is a template that might help.

IV. We are living in uncertain times.  New data is being shared about COVID-19.  Decisions about where your child will attend the 2021-22 school year is difficult for many parents, but is compounded when you have a child with complicated medical needs.  Families should work closely with the child’s medical professionals and school staff throughout their decision-making process regarding return to school options, whether in person, blended, or remote.  

Would the family like some therapists to come into the home?  Will the school allow therapists to enter the home?  I am a planner and visual learner.  For me, I would need to create a chart and compare what both environments would look like; therapies, accessibility, medical risks, social risks, etc.

Once you’ve made your decision, be sure to understand the protocol for your school’s personal protective equipment (PPE).  Your child may need to practice wearing a mask or other PPE.  Additionally, since faces are already difficult for children with CVI, masks on a person’s face will make this even more difficult.  

Difficulty recognizing faces can have a negative impact on social interactions with peers, if the learner with CVI isn’t supported.  Incorporate how your child will recognize familiar peers and staff if they are wearing PPE.  You could take a picture of a few familiar classmates/staff with and without their masks.  This could become a fun matching game for the whole class.  Show a picture of a classmate with their mask on.  

Give some other information about this student as a getting to know you game.  If your learner is not ready for two dimensional images, the clues could be recorded by the peer themselves ahead of time, so that the learner with CVI can begin matching the voice with their peer.  

After the clues are given, have the class try to match which child matches the image and description.  I would give my learner access to the images before and after the experience, if it would be helpful.

V. Now that you know where your child will be attending school, consider how they will get around this physical space.  

Knowledge from the learner’s physical therapist can provide input regarding their gross motor skills, the teacher for the visually impaired provides their functional vision, and the orientation and mobility specialist provides safety of travel input.  If your team is moving to an interdisciplinary model similar to that supported by CViConnect, all of your teammates have access and are familiar with these various levels and are ready to meet the learner’s mobility needs.

The natural instinct for most professionals, when CVI is first taught, is to make everything the child’s favorite color, or attach lights to everything.  Unfortunately, if we do this, we’ve made all these points meaningless.  This is another great example of the importance of a more interdisciplinary approach and understanding the needs of your learner outside your sole area of expertise.

When we come from a whole child approach, the team is able to better understand the need to carefully select the information that your learner needs visually, and highlight these landmarks.  Meaning, not every teacher’s door needs red tape around their door frame.  Additionally, these well meaning modifications won’t mean anything unless they are explicitly taught to the learner. 

Reach out to the school to see if the child can get into the building before school starts to begin practicing their routes.  Further, maybe the learner’s orientation and mobility specialist can meet you there and begin some of their route training before the school year.  (*Note, some district contracts may not allow this, but it is worth asking to see if anyone from the team could provide additional support).  

This early visit will allow your learner to see the building before other students are there.  While you are there, take pictures and/or video of various locations your learner will need to be familiar with.  Use these images and videos at home to review the routes you practiced.  Remember, it is OKAY to teach other methods to learn routes, for example, relying on tactile input from a white cane or sounds you might hear. 

If your child is staying home this school year, you can still work on routes within your home that your child needs support with.  If your child is very comfortable moving around their home as independently as possible, begin working on routes in your neighborhood.  Again, consulting with your learner’s orientation and mobility specialist may provide you with some guidance and valuable routes to practice.

VI. Show off your new school supplies.  Parents might find themselves buying new backpacks, lunch boxes, clothes etc. Your child may even help pick out their new materials.  For your child with CVI, you may need to use this time to expose them to the new ‘back to school’ purchases you made.  What does their new backpack or lunch box look like?  Do you need to add something to their materials so it stands out easily? 

Just as you may add something to your suitcase to help make your luggage stand out at baggage claim in an airport, teams can add something to the child’s bag that is unique and easy to spot among other backpacks. In the past, I have encouraged families to tie a mylar ribbon around the handles of their student’s materials or add a fabric swatch.  Whatever you choose, make sure you spend time teaching this to the learner with CVI in order for it to be effective.  

VII. Create a space that meets the learner’s needs.  A distraction free, visually accessible,TVI using the CViConnect PRO app to teach a student independent work space looks different for every learner.  Regardless if they are attending school virtually or with in person instruction, it may be valuable for both in-school and at-home learners.  You may even find your learner has a variety of learning spaces throughout their home and school settings.  These workspaces will also look different depending on the task and environment placed upon the learner.  

When creating this space, think through CVI Characteristics.  How can they help the learner and how could they potentially distract the learner.  Every work space needs a good source of light to ensure materials are illuminated, but the angle of the light or light from a window could become a distraction.  Noise cancelling headphones have been used by some learners to help reduce the distracting sounds, but a system is needed to ensure the student still has access to the staff’s verbal cues/directions.  Does your learner need a space with reduced visual complexity?  Some have used trifold boards or fabric to help cover unnecessary information, but if this blocks their view of notes on the board or other resources, ensure your learner has another way to access these with electronic or desk copies.

VIII. This one seems obvious, but often is where teams get stuck.  Agree on a system early on for how the learner will  access their work?  It is unlikely that your schedule will be rigid such that the learner uses their vision during ‘Morning Meeting’ from 9:00 AM- 9:30 AM and tactile access for science from 9:30 AM- 10:15 AM.  Instead, teams will need to be flexible.  Give examples of the types of tasks the learner can complete visually and with what environmental expectations.  

Dr. Roman-Lantzy and Matt Teitjen released the “Sensory Balance” text in 2020.  This is a great tool if you are unsure how to complete a functional media assessment of the 10 visual and behavioral characteristics defining Cortical Visual Impairment.  A teacher for the visually impaired likely has a few ideas of how materials can be made accessible via tactile or auditory input.  Be prepared to utilize these when vision has become too much or is no longer appropriate.

This question also comes up when discussing the best input for our learners.  How much do they understand receptively?  Hopefully, your team is working on a variety of ways for your learner’s wants and needs to be expressed and interpreted by the communication partner.  Regardless of their expressive language modality, when unsure of your learners potential, assume they are capable.  One thing I was fortunate to learn early in my career was to never limit a child’s potential.  See the child, see their future, see their potential.  

IX. This leads me to another really important tip for teams.  Be aware of what your learner’s visual fatigue looks like.  Watch for these cues from the learner and respect their limitations.  Find a way for them to request a break, and select a few activities that are a good fit for your learner to engage in during a visual break.  These are typically things that are low visually demanding tasks in a minimally complex environment according to Matt Teitjen’s ‘What’s the Complexity Framework’.

Include your learner in these conversations as much as possible.  Ask something like ‘what will we want to do if your eyes begin to feel tired?’  You might be surprised to hear their answer and what they prefer to do during this necessary visual break.  Let them know how to communicate that they need a visual break and that needing a break is okay.  We all need to step away at times.  Working adults might text a loved one during a break, go for a walk on our lunch, or read a book they enjoy.  Breaks look different for everyone.

Often my learners with CVI had very large IEP teams, meaning the child was with a large number of staff throughout their day.  Communicate with each other to ensure you aren’t pushing the child beyond their limits.  If you are using the CViConnect PRO system, the messages platform is a great place to make note of these observations.  Teams can quickly glance at notes from the day prior when working with the child.

X. Naturally, after determining your student’s learning media, your team needs to have a plan for how the learner will get their learning materials.  This is where teamwork and communication really comes into action.  If the team decided that learning to read will be visual, who makes these materials accessible?  Can the learner access this technology independently or does a CVI moderator.  Unfortunately, we do not have an answer for this, as each IEP team operates uniquely for the individual child’s needs.   Instead, I can give you a few questions for you and the rest of the team to consider:

  • Who is responsible for creating learning materials in the preferred learning modality?  Is each provider creating their own content or is a member assigned to this responsibility?
  • If one member is creating content for other service providers, how will materials that need to be accommodated be shared with the individual who needs to modify them? Do you have a timeline in place for when lesson plan materials will be provided ahead of time?  
  • Does the team have access to existing content that meets the individual’s needs? 
  • Are there any additional supports or instructions needed, once the learner has the accessible materials?  Do they need instruction on salient features of visual targets?  Can they independently utilize the technology to access their materials?
  • How will the learner communicate their answer?  The team will need to know how the child communicates expressively. 

Your IEP Toolbox. Use Tools When Needed

Your IEP team may not benefit from all of these ideas.  Also, if you have never done any of these, do not feel you need to start with all of them this year.  Pick a few that might work best for your learner to start.  Maybe you can come back and revisit a couple later in the year, or build them into next year’s expectations.  Doing what’s best for kids does not always mean they need top of the line devices, but they deserve the best of you.  Do what you can to best serve these individuals and know you’ve done what you can.  

If you are  still reading this blog, it tells me you care deeply about your learners and have their best interest in your heart.  Good job team.  When the educational team comes together and considers the learner’s needs before they even enter the building, we have a better chance this child can start off on the right foot.

Believe it or not, but the best big changes happen when you start small and make incremental changes to our behaviors and routines.  

Have questions, or want to learn how CVIConnect can be a solution for your child or student. Contact us at

CVI Friendly Fourth of July Celebration

Tips and Considerations to help your child with CVI this Fourth of July

Holidays and celebrations can be an exciting time for family and friends to come together.  When your child has CVI, additional thought might need to go into attending such events.  While the flashes of light in the dark sky might be engaging for some, the celebration as a whole may be overwhelming.  Novel environments, unfamiliar faces, complex sensory environments, too much movement, these and many others may cause your child with CVI to visually shut down or have a CVI meltdown.  With the Fourth of July around the corner, the following information can help your child with CVI have an enjoyable and comfortable celebration.

Where are you celebrating?  

Are you staying home, visiting a friend, or camping?  Even if you are going to a familiar place on the Fourth of July, for example an Aunt and Uncle’s home, things may look different.   When we visit unfamiliar places for our celebrations, or familiar places that now look different, the novelty can become overwhelming for some children with CVI.  To help your child, bring some favorite toys along, particularly items that are very familiar to your child.  The items you bring should be something your child can easily access regardless of additional sensory input, given that your Fourth of July Celebration may be louder than your child is used to.

What will your child do to communicate their wants and needs?

Your child may have several forms of expressive and receptive communication strategies.  Bring any communication devices with you to ensure your child has a way to participate throughout the day!  By bringing potential augmentative communication devices, your child will have the opportunity to have more communication partners and increase social engagement during your celebration.  Further, those that are familiar with your child’s body based communication should watch for these signals.  Your child may be using this most commonly used form of communication to express their wants and needs, but not all communication partners will be familiar with what your child is trying to express.  Children will rely on those familiar to them to help ensure their wants and needs are met.

What will happen when you get there?

 Talk through what to expect prior to going to your Fourth of July celebration.  First we will eat, then we will play, next we will watch fireworks, making even a generic plan can help your child feel less overwhelmed.  Use the receptive communication mode that works best for your child.  If your child responds to visual aids, you can create a teaching story about the day with symbols, objects, or photographic images.  If your child prefers to listen without visual aids, this is okay too.  Prompt as you tell them what will happen next.  Whatever method you choose to use, simply talking to your child about what to expect will help them understand the day as it unfolds. 

Who might be there?  

If your child is able to view some faces, preview the familiar individuals they might be able to recognize when they attend the celebration.  Are faces still too complex for your child?  What modality do they use to compensate for their vision?  If they listen for the person, preview voice recordings of the known individuals who will be at the celebration.  Use what is already familiar to your child about those individuals.

What can be ahead of time to prepare your child?  

Will it be inside or outside?  What kinds of decorations might we see?   What will we do there? What visuals would be valuable for your child to participate in those activities?   In addition to previewing people at the celebration, take pictures ahead of time if possible or even visit the location if you aren’t traveling too far.  You can reduce the visual clutter from those photographs using resources like, powerpoint, or an eraser app on your phone/tablet.  

If you do not have the ability to preview pictures ahead of time, utilize a backlit device while at the celebration.  If it would be helpful to your child, take pictures of important visuals and landmarks upon arrival.  Take your time to introduce these visual inputs to your child using the visual accommodations that work best to your child’s needs

Another great example of previewing the expectations with your child is to hold a small cookout similar to your expected celebration the week before the real thing.  This can be great practice for the Fourth and help familiarize your child with some of the sensory experiences to expect during the celebration.

How does the sensory environment impact your child?

Whether it is the fireworks at night or just the chatter of so many people, be aware of the sensory environments and its impact on your child. You could block excess noise, by providing your child with swimmers ear plugs or noise cancelling headphones.  If your child is overwhelmed by the extra sensory inputs at your fourth of July celebration, these might help minimize the intensity of these sounds.  Note that not every person with CVI dislikes the sounds of fireworks, but plan for the most difficult scenario if you are unsure how your child might respond.  

Remember sensory input can be more than what your child hears. Your celebration may present your child with new sights, sounds, smells, tastes and textures.  It may help if he/she is provided with familiar food and drink.  

Additionally, consider how often they are being touched.  Is your child receptive to hugs from friends and family?  What smells are in the air?  In addition to the smells of foods, does anyone have a strong cologne that could impact your child?  Is there a campfire lit?  If the situation becomes too intense – during fireworks, for example – he/she may need to leave. Coordinate an escape route and make plans for possible contingencies.

When we add these elements of visual complexity we will often increase our child’s time for latency.  Sometimes timing is out of our control when we attend a celebration.  If this is the case, if we are not able to  provide our child an environment that is realistically accessible using their vision, we might need to consider providing our child with more auditory and tactile access than we do in their normal routine. 

Give yourself and your child a break

Celebrations need to be enjoyable as much as possible.  Upon arrival, take a moment to consider a safe place where your family can have a moment together with less sensory inputs.  Prior to your Fourth of July event, talk to your child about how they can request a break.  You may also want to discuss with those closest to you how often a break might be needed.  Remind each other, it is okay to slow down and take a break if it is needed.  Watch for your child’s signs that they need a break.  

Additionally, upon arrival, you could set up this space with a blanket in the grass, somewhere your child can be most comfortably positioned as well.  This special place can be used for breaks and restoring your child’s need to feel safe.  Many of the previously mentioned suggestions such as  bringing a highly preferred toy or previewing images, would be great to do in this safe place.

 Help your friends and family see your child for the beautiful human they are!  Those who do not spend time with you on a regular basis might not have any clue why you have to do all that you do.  Sometimes our closest friends and family can be unsure how to interact with us or our child.  Take the time to educate a family member or two.  Help them learn about your child’s favorite things to do, what is your child good at.  As a caregiver for this child, take a few moments to brag about your child’s victories and celebrate them with those closest to you!

Last but certainly not least, trust yourself.  If you are taking the time to participate in online research about this child, they are clearly important to you.  You are doing a good job.  Keep up the great work.  Most important of all is for this child to feel loved and safe.  If you are meeting those needs, you have created the most successful experience regardless of what you and your family do this Fourth of July.

Stay safe, and have fun!

The Top 10 CVI Facebook Pages You Should be Following

For families and friends that know someone with Cortical Visual Impairment, CVI Facebook pages can be an invaluable resource. There are many companies and support groups that have created pages on which they share important information. Pages can range from simple DIY ideas for your child with CVI, to educational and instructional resources to treat the condition.

Here are our top 10 CVI pages to follow and why we think they are helpful.

 1. Cortical Visual Impairment (CVI) Awareness

Cortical Visual Impairment (CVI) Awareness is a closed group that you have to request to join. Once accepted, you will find a terrific resource for families, friends, and educators to learn more about CVI. The page enables sharing of  information on products, DIY ideas, educational opportunities, as well as inspirational support.

2. CVI Advocacy

CVI Advocacy was created by parents in response to the overwhelming need for advocacy, awareness and education of Cortical Visual Impairment (CVI).  The purpose of this group is to build a collective advocacy movement around Cortical Visual Impairment.

 3. CViConnect

CViConnect has a new iPad application that follows Dr. Christine Roman-Lantzy’s approach and interventions by presenting customized Activities for all CVI phases, collecting visual data using the iPad camera, and interpreting that data to continue a customized learning plan for children with CVI. The Facebook page for this new application offers quality CVI educational articles, innovative treatment ideas, inspirational discussion, and general updates about CVI.

4. CVI Neuroplasticity Research Group

The CVI Neuroplasticity Research Group is a page focused on neuroplasticity research for CVI. Follow them for great technical explanations of CVI, research, upcoming seminars, and informational webinars as they work to better understand the science of CVI.

5. CVI NOW– parent/family only group

As parents of children with CVI, you are not alone. This group is a safe place for you to connect, share, and get answers to your questions with confidence, supported by experts, and open to all.


The Pediatric Cortical Visual Impairment Society is committed to improving the lives of children with CVI, the #1 cause of visual impairment in kids.  The PCVI website is full of excellent resources.

7. See CVI, Speak AAC

A mom of a child with CVI created this group to link people together to address the needs of those children with CCN (complex communication needs) and CVI. This mom opens up to share her stories and solutions that worked for her daughter.

8. Seeing Sadie and CVI

The Seeing Sadie and CVI Facebook page focuses on seeing the individual for who they are.  Through inspiration, support, education, and instructional videos they work together to assist children with CVI reach their greatest potential. They also work hard to bring facts to the community regarding Cortical Vision Impairment.

9. Start Seeing CVI

The Start Seeing CVI Facebook page is designed to educate and shed light on Cortical Visual Impairment. As the leading cause of visual impairment in children in the U.S., they are raising awareness with a great page of new treatment ideas, fun DIY tips, interesting research articles, and conference and e-learning registrations.

10. TVI Discussing CVI

This private Facebook group, TVI Discussing CVI, provides a safe place for professionals working with children with Cortical Vision Impairment to openly ask questions and/or discuss current trends, evaluations, and strategies.

There are always new and exciting pages and resources for CVI appearing on Facebook. As we work to discover advances and education on the science and treatment behind CVI, we encourage you to stay up to date on our blog by signing up for our newsletter.

What To Do After a CVI Diagnosis

Has your child just been diagnosed with cortical visual impairment (CVI)? You may be experiencing a wide range of emotions. This can be a very confusing and frustrating situation for you. You are not alone, as many parents have received a similar diagnosis. Note that there are many options and resources available to you. Here are 5 important things to do after your child has been diagnosed with CVI.

1. Breathe

Everything is going to be okay.

With a consistent and structured program, CVI can significantly improve over time. In a select group of children with CVI who had highly motivated parents, 97% went from Phase I to Phase III in an average of 3.7 years, according to a study conducted by Dr. Roman-Lantzy.

More personally, know that there is a vibrant and supportive community available to you. You are not the only one going through this – far from it, in fact. CVI is the current leading cause of visual impairment among children. Other parents and family have previously been in your position and are happy to answer any questions you may have. There is a particularly active group within Facebook. CViConnect previously published an article about the top 8 CVI Facebook pages to follow. Within these pages, you can see questions, comments, stories, and supportive ideas from other families that are going through the journey you have just begun.

2. Learn As Much As You Can About CVI

It is important to take the time needed to understand what this diagnosis means. Learn about the various intervention programs and methodologies available to you. Read about what your child may be experiencing in order to better understand how intervention works. It will take time and patience, but you will be better served in the end.

Although CVI is still under-studied, there are a lot of quality books and professional publications to learn from. A book we recommend is Cortical Visual Impairment: An Approach to Assessment and Intervention by Christine Roman-Lantzy. Dr. Roman-Lantzy provides readers with both a conceptual framework with which to understand working with CVI and concrete strategies to apply directly in their work.

There are numerous resources available online as well. Our article about the top 5 CVI resources you may not know about outlines a handful of great online resources you can turn to for general information, intervention ideas, and community support.

3. Find a Vision Specialist

A vision specialist that practices CVI intervention can be an invaluable resource. Regularly scheduled visits with a professional can help to answer questions, provide important information, continue education, and define intervention ideas. One can be found through your school system, your local government programs, or this page put together by Perkins School for the Blind.

4. Have Your Child Evaluated

Evaluation is the first step in beginning to treat your child. This will help to determine where he or she falls in the CVI spectrum. Different children have varying degrees of CVI and, with that, varying levels of sight. The evaluation will determine the current abilities of your child and how you can proceed. There are several ways to have your child evaluated, most of which are outlined by the American Printing House for the Blind.

The diagnostic test that is most often used is the CVI Range Score. The CVI Range Score allows for the vision of your child to be measured in a consistent and reliable way. It has been carefully studied and found to be a stable instrument to determine the functional level of vision of your child. It is used to determine the degree of effect of CVI on a zero to ten scale. Professionals can then use that number (CVI Range Score) to design an intervention program.

5. Begin an Intervention Program

Intervention in this context means beginning the process and working with a CVI specialist on activities for your child. After meeting with your vision specialist and having your child evaluated, you will be in a great position to lay the groundwork for your intervention program. Depending on the level of vision of your child, you will begin to schedule various visual activities to exercise the neural pathway between your child’s eyes and brain. Here are a couple of tips to keep in mind during these exercises:

  • You should incorporate opportunities to use vision into your child’s everyday life. Color and motion will be important for his or her visual development. For example, you might use a red bowl or plate for each meal.
  • In order to maximize your child’s ability to use vision, it is important to provide spaces that are free of distractions and visual clutter.

CViConnect is a new and exciting program that incorporates personalized education, training, and support for children with Cortical Visual Impairment. CViConnect includes an active community that offers hope and confidence. Using cutting-edge technology and a proven curriculum via an iPad app, CViConnect helps to improve the eyesight of children with cortical visual impairment.

A cortical visual impairment diagnosis can bring about trying and confusing times. But know that you are going to be just fine. As with many other diagnoses, CVI can be improved with patience, time, and effort. With these five tips, you will be well on your way to that improvement for your child.

Tools for CVI Assessment – American Printing House for the Blind

A CVI assessment is generally “step one” in discovering the current sight abilities of your child. The assessment then molds the teaching program and techniques that will help to improve his/her vision.

There are several different methods to go about completing such an assessment. The American Printing House for the Blind provides assessment tools and guidelines for a number of assessment techniques, including those from Dr. Gordon Dutton, Dr. Amanda Lueck, Dr. Mary T. Morse, Dr. Jan van Dijk, and CViConnect’s lead advisor Dr. Christine Roman-Lantzy. It is on Dr. Roman-Lantzy’s assessment guidelines and instruction that CViConnect has built our program. Here are some helpful tips and guidelines from American Printing House for the Blind for your information when having your child assessed for a CVI range score.

American Printing House for the Blind does an excellent job of laying out Guidelines for Observation and Guidelines for Interview Questions. These methods will be used by a CVI professional to determine the abilities and limitations of your child. Knowing this information beforehand and reading the interview questions is a great preparatory exercise to ensure you get the most accurate assessment possible.

This will undoubtedly be a confusing and possibly frustrating time for you and your child. There are several things you can do, as laid out by APH, in order to ease and accommodate the child, as well as provide the most accurate assessment.

  • Be understanding when the child’s behavior is a reaction to frustration or fear and misunderstanding of the environment
  • Avoid conversations when child is using their vision to travel safely
  • Family, teachers, friends should verbally identify themselves when meeting the child
  • Faces are very complex. Do not expect a child to be able to look at you and hear what you are saying at the same time. Do not take lack of eye contact personally

With excellent tips, products, and general information, American Printing House for the Blind is a great resource for working with your CVI child. Be sure to review their entire section on cortical visual impairment. If you would like to receive information on CVI, subscribe to our newsletter.

Meet APH: American Printing House for the Blind

When navigating life with a challenge like blindness, it is comforting to know there are organizations that provide valuable resources that can help. American Printing House For The Blind (APH) is one such organization, providing resources and support to sight-impaired individuals.

For over 150 years, APH has proudly served the blind and visually impaired community by creating educational and functionalAmerican Printing House for the Blind living products for those that suffer from visual impairment. It is now the largest non-profit organization in the world that serves this community.

Tracing its roots back to 1858, APH was founded when it first saw a need to assist blind students. After the opening of the first schools for blind children in the 1830’s, it was clear that teachers had precious few books and educational resources. Funds were raised and locations discussed. Finally, in 1858, the General Assembly of Kentucky passed an Act to establish The American Printing House For The Blind. In 1860, a press was purchased, and, after disruption by the Civil War, the first book was produced by APH in 1866.

Since then, APH has worked tirelessly to provide products to the blind and visually impaired community. In 1879, under the Federal Act to Promote the Education of the Blind, APH became the official supplier of educational materials for visually impaired students. The funding for this Act benefitting blind and visually impaired students continues today through the Federal Quota Program. Funds from each state are used to purchase educational materials for blind and visually impaired students.

As both a 501(c)(3) nonprofit and a manufacturing company, American Printing House for the Blind serves a unique and important public role, but is also able to manufacture and offer incredible products to the individual consumer. Browsing their shop shows an array of:

  • Braille textbooks, magazines, custom braille
  • Large print textbooks, custom large print
  • Talking Books on a contract basis
  • Accessible tests
  • Educational kits, tools, and supplies
  • Talking software and hardware
  • Independent living products such as talking color identifiers


American Printing House for the Blind is a leading resource for the Cortical Visual Impairment community. APH understands the importance of education for CVI.

“Those working with children diagnosed (and many who remain undiagnosed)  with CVI understand that the more we learn about this neurological visual impairment the more complicated the conversation becomes.”

To this end, they have numerous educational resources and posts on their website

Dr. Christine Roman-Lantzy notes that CVI “is the leading cause of visual impairment in children today”.  At CViConnect, we are happy to see the commitment from APH to the CVI community. Please visit to see their vast educational resources and products that support the blind and visually impaired community.

Top 5 CVI Resources You May Not Know About

There is a wealth of information on the internet providing education, instruction, and direction on how to help your child with Cortical Visual Impairment. With so many different options, it may be difficult to narrow down a few specific resources to consistently follow for the best information. Here is a list of 5 of the top CVI-related resources that you might not know about:

– West Virginia Department of Education: Cortical Visual Impairment

The West Virginia Department of Education has an excellent Special Education section that outlines their curriculum as well as a wealth of instructional resources. In particular, their Special Topic section on Cortical Visual Impairment provides outstanding direction and instruction on CVI through a series of videos made by Christine Roman-Lantzy, Ph.D.

– CViConnect

CViConnect is a combination of technology, data, and community that strives to improve the vision of children with CVI. CViConnect developed a smart technology, iPad-based app that, using the camera technology in the iPad, tracks visual queues in the child’s eyes as various images and animations are presented. This data is collected and translated into a personal program directed by teachers of the visually impaired at LifeScience Technologies. The entire program is modeled and developed by the work of Dr. Christine Roman-Lantzy, a leader in furthering understanding, assessment, and intervention strategies for Cortical Visual Impairment.

– CVI Teacher

CVI Teacher is a blog created and run by a teacher of students with Cortical Visual Impairment. The teacher works for the Concord Area Special Education Collaborative. CVI Teacher is an excellent combination of educational posts, interesting videos, CVI news, and great DIY ideas.

– Perkins School for the Blind

Perkins School for the Blind is an organization, operated by proven experts, that has dedicated its efforts to the lives of blind and deafblind people all over the world. Their institution offers a quality section on Cortical Visual Impairment that includes webinars and inspirational and educational articles.

– Family Connect

FamilyConnect is a website and community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). It offers a place of support for families with visually impaired children that includes a community to discuss CVI related issues, share stories about their families and treatment ideas, and contribute CVI-related resources.

As the fastest growing visual impairment diagnosed today, Cortical Visual Impairment treatment is constantly making new strides. Make sure to subscribe for updates to the CViConnect blog for the newest and most important items in educational information, instruction, and new developments on everything CVI related.