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 remove.bg, 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.

6. PCVI

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.

CVI Virtual Range Assessment

When planning an intervention program for a child with cortical visual impairment, one of the first things that should be done is to assess where the child is with their visual abilities. The best method for this is The CVI Range created by Dr. Christine Roman-Lantzy. The CVI Range provides a consistent and reliable evaluation and offers detailed information about a child’s visual processing. The CVI Range Assessment provides a TVI with a baseline from which to build a CVI intervention program.

CVI Range Assessments have generally been conducted in person by Dr. Roman-Lantzy, or by other trained professionals. However, for some families with geographic limitations, or due to scheduling limitations for Dr. Roman-Lantzy, an in-person CVI Range Assessment may not be possible. 

CViConnect is happy to step in and help! We offer a Virtual CVI Range Assessment. This allows those families, who are not able to make a long trip or schedule an assessment,  the option to do it from the comfort and convenience of their own home.

  • No geographic limitations
  • Conducted by Dr. Christine Roman-Lantzy
  • CVI Range Score generated as a result
  • CViConnect subscription is NOT required

This Virtual CVI Range Assessment is completed in a couple of steps. 

Initially, there will be a phone call interview. This allows Dr. Roman-Lantzy to ask questions and get an understanding of what the child is interested in. Each child is different and reacts to different stimuli. Dr. Roman-Lantzy will be able to use this information to develop a custom assessment method. With that, she will provide a list of things to gather to perform the online assessment and work with the family to schedule a time.

The visual assessment is done via the Apple Facetime app (a HIPAA-compliant video conferencing app). Under Dr. Roman-Lantzy’s direction, the family will present various visual targets to the child with CVI and Dr. Roman-Lantzy will assess the child’s response. It generally takes 1-2 hours to complete. Using the information gathered from the interview, observation, and direct assessment; Dr. Roman-Lantzy will provide the family with a CVI Range Score, or, an approximation of a CVI Range score.  The Virtual CVI Range process is not a replacement for an actual, face-to-face assessment, but may help families get a general starting place and a CVI Phase (I, II, III).

Learn more about CViConnect.

CViConnect Pricing Announcement & More

To all subscribers and potential subscribers of CViConnect,

You spoke.  We listened.   Feedback from the Early Adopter Program and through social media has been consistent, “we love the app, but the monthly subscription fee is a problem”.

From the outset, we encouraged your feedback and promised to make changes that made sense.  So, with this announcement, we are lowering the monthly subscription fee to $10 per subscriber per month.  We believe this will allow many, many more of you to subscribe to this awesome app and be a part of the CViConnect community.

In addition to the new, lower monthly fee, we are changing our support model.  We are looking for ways to be much more responsive to your questions and proactive in the use of the app with your child.  Effective immediately:

  • Live CViConnect Support Chat.  We will provide open windows when CViConnect Support Staff will be available for an online, live chat.   This should allow for quicker responses to your questions regarding use of the CViConnect app.
  • Facebook Live Training.  We will begin weekly FB Live training events, where the CViConnect Support Staff will provide training on various features and functions of the CViConnect app.  You can attend live or we will record the sessions and make them available to the community.
  • Training Videos. We are also planning to increase the number of training videos that will be posted on our CViConnect YouTube channel.
Coming soon!  Again, your feedback has helped guide us as we look to improve the CViConnect app.  Here are some of the new features/functions coming in the next release of the app (coming soon):
  • Child progress reports – the app will now be able to display a child’s progress reports
  • Improved performance – image download performance improvements, which should speed up the time it takes to load an activity
  • Improved Accessibility support for font sizes – app will more fully support font size changes from accessibility settings
  • Improved instructions view on activity start up – the instructions view has been made larger and easier to read when an activity starts
  • Prompt for “Are you sure” on quit of an activity – when quitting an activity, a ‘prompt’ confirms the choice
We hope these changes and improvements will help encourage more of you to subscribe and will go a long way in retaining current subscribers.  As always, your comments and feedback are welcome.

All the best.

Sincerely,
Steve Hendrix
Steve Hendrix
President

CViConnect

International Support, Professional Service Pack and Virtual CVI Range Score Assessments

Over the last few weeks we have received many questions around the following topics. We hope that this post sheds some light on the areas of interest.

International Support

Unfortunately, during this initial phase of rollout, we are bound to the U.S. only.  In the very near future, we will be able to support international subscriptions.  For those that have reached out and inquired already, we will keep your name and contact information and let you know when CViConnect is available in your country.

Professional Service Pack

At this time, we are expecting the Professional Service Pack to be available sometime in the next 60-90 days.  We are still working through some technical issues, as well as finalizing the pricing model.  The Professional Service Pack will allow a single subscription to support multiple students.

We are keeping a record of all the TVIs and professionals who have inquired as we move closer to making the Professional Service Pack available.

Virtual CVI Range Score Assessment

A pre-requisite for use of the app is a CVI Range Score for your child. The CVI Range Score helps us identify which Activities bundle will be most appropriate for your child.  You can obtain this in many ways. Check out our prerequisites page to learn more. https://cviconnect.co/pricing/#pre

One of the options for obtaining a Score is to purchase a Virtual CVI Range Score assessment with Dr. Christine Roman-Lantzy.  You can purchase this on the CViConnect website at the Additional Services section.

As the title implies, the assessment is done virtually using Facetime.  Once you have purchased the Assessment online, Dr. Roman-Lantzy will contact you directly, via email, to coordinate and schedule the Assessment.

Top 3 CVI Resources on Perkins School for the Blind CVI Hub

Perkins School for the Blind CVI Hub web page brings valuable CVI resources right to the fingertips of parents, educators and school districts. The CVI Hub is a great place to start if you’re looking for resources for your CVI journey. Below is our list of the top three resources for parents of children with CVI.

1. CVI 101: Educating Children with CVI

CVI 101 is a great place to start while you are gathering useful information about CVI. With Perkins, you know that the information is accurate and trustworthy. The overview of CVI they give is both understandable and descriptive. As you read on, you are presented with a video by Dr. Christine Roman-Lantzy, where she covers Cortical Visual Impairment and the Evaluation of Functional vision. Next, you will read about the CVI Range, and what role it plays with individuals with CVI. All in all, we believe this is a very useful CVI resource.

2. CVI Videos

Sometimes a video is the best way to package useful tips and techniques. On this page of the Perkins – School for the Blind, you are presented with a wonderful video library full of video presentations. Many topics are covered, including:

3. About Dr. Christine Roman-Lantzy

Lastly, we highly recommend reviewing this highlight of Dr. Christine Roman-Lantzy, who is arguably the leading researcher and thought leader in the field of Cortical Visual Impairment and referenced many times on Perkins School for the Blind CVI Hub. Dr. Roman-Lantzy has been instrumental in building CViConnect. Her techniques and evaluations influence how CViConnect is designed – from activities that are presented to Virtual CVI Range Score Assessments.

Leave Review for CViConnect Here

Hi there,

If you would like to tell others how much you like CViConnect, you’re in luck, as there are plenty of places to do just that. Below you will find a list of places where you can leave reviews, comments and details regarding CViConnect and how it has benefited you and your family.

iPad App Store
Locate the CViConnect app in the App Store. You can easily rate and review the app here on the Reviews tab.

Facebook
Facebook makes it very easy to rate and review products. Find the CViConnect Facebook page and click on Reviews to tell people your experience.

YouTube
CViConnect posts videos about the company, the iPad app and other updates. After watching any of our videos, feel free to Like the video(s) and Subscribe to the channel.

Email
Sometimes an email is the easiest way to give feedback. You can always send our President, Steve Hendrix, a note and let him know how you feel about CViConnect.

Look Detection vs. Video Conferencing

Dear CViConnect User Community,

From time to time, we will be communicating directly with the CViConnect User Community to deliver specific, hopefully helpful, information.  This is one of those communications.

We have had a number of questions regarding the look detection capability of CViConnect as well as the ability to record a video and upload it to the CViConnect team. Automatically captured data can be augmented through look detection and video recording.

When an Activity is run, information about the execution of the Activity is collected, such as how long the activity was run, when it was started and stopped, the places where the child touched the screen, etc.

With look detection, the system watches for the child’s eyes to be focused on the iPad.  The time when focus was detected is then cross referenced with what was on the display at the time of the look, giving us information about what the child has ‘seen’ in the Activity.

Video recording simply captures the video of a child using an Activity, much like using a video camera.  The recording is captured and then passed back up to the care team for review.

Video recording and look detection cannot be done at the same time.  Look detection uses Apple’s facial feature detection functionality to find the child’s eyes and to determine if they are open.  Facial feature detection is disabled by Apple during a video recording.

Finally, the facial feature detector is by no means perfect.  It sometimes struggles to locate a child’s eyes if the room is poorly lit or if the eyes are particularly challenging to locate.

At CViConnect, we continue to look at the technology available to improve the experience for you and your child.   Thank you for your continued support of CViConnect.

Sincerely,
The CViConnect Team

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.