Letting your voice be heard, CVI Symposium podcast

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Hello and welcome to Perkins eLearning To Go. This is Valerie. On July 11 and 12, Perkins hosted the fifth annual CVI Symposium. We had 150 participants, which included medical professionals, educators, and parents to discuss how, together, we can change how children see the world.

I was excited to be a part of this event this year. And of course, I had to bring my podcast with me. So we asked our participants to come to the microphone and answer one question. The question we asked was, if you could let the world know one thing about CVI, what would that be? We had an amazing response, and I will let our participants speak for themselves. I'll be back in a bit with my own thoughts. But please be aware of these recordings were made live during the Symposium, so at times, the audio quality is not where we would like it to be.

We are live at the 2019 CVI Symposium here in Waltham, Massachusetts. We're hoping we'll have a few people come and talk to us and answer one simple question. If you could send a message to the world about CVI, what would that be?

My name is Craig Hoyt. The question is, what kind of message would I send the world about CVI? And my message is, CVI is the single leading cause of visual impairment in children in the Western world. And as prenatal and perinatal care improves in the developing world, it will be a leading cause of visual impairment in those areas as well. This is an epidemic and should be treated as such.

My name is Molly [? Heffelfinger. ?] And what I would like the world to know about CVI is that children can learn, and there is nothing that can hold them back when materials have been accessibly made to them. And so that's really kind of the main focus is that you need to push them and encourage them. But educators and doctors need to collaborate together to ensure that measures have been in place. And just always keep in mind that the child can learn and there's nothing that can stop them.

I'm Jessica [? Marquore. ?] And what I'd like the world to know about CVI is that it can be such a hopeful diagnosis. And there is so much expectation of improvement with kids with CVI. We know that neuroplasticity is a fact of life for all of us. And when we can intentionally help our children to build connections and fire those neurons together, there's no limit to how much they can continue to achieve.

My daughter, Grace, is seven years old and she is in an academic setting. And she's learning to read and to recognize illustrations in children's books. She takes dance classes and is on swim team, and these are all things that I, admittedly, never expected as a new parent to a child with CVI. So the message to the world is that keep that is to keep those high expectations for our kids with CVI.

Hi. My name is Margie Levine. I'm a parent of a six-year-old with CVI. I'm repeating something that I heard Dr. Roman say recently, which is that CVI is a problem of access, not cognition. And it affects all areas of my child's learning and all of her experiences throughout the day. My daughter can gain access to her world, but she does so through very specific approaches and adaptations. And everyone who interacts with my daughter-- family, teachers, therapists-- must learn these approaches to give her access.

My name is Nancy Knight, and I'm a TBI in community programs at Perkins School for the Blind. And I work with a lot of students who have CVI on my caseload. And if I could send a message to the world about CVI, what I want people to know is that CVI is now the most common visual impairment. And we're going to see this more and more and more. The understanding in this field is really just beginning to grow and blossom.

And the thing that we can really take to heart and feel positive about is that when we understand CVI, when we understand how to assess for it, the educational interventions, what to do educationally, then we can see incredible learning and growth on the part of students with CVI. And it's an incredibly positive field because of that. So I'd like the message of growth, positivity, and learning.

Well, we come from a very complex child perspective-- not medically fragile, just complex. And so my response is going to be from that point of view. And if it does apply for all children with CVI as well, and it would be that vision precedes action. So we didn't understand, really, how the CVI impacted our daughter until she was 15. She's now 17. And in learning about CVI, we really came to understand that vision is the foundation for all skill acquisition and learning.

So for example, walking-- she didn't take her first independent steps until she was 10 years old. Now, she was hypotonic and she had global delays, but she had developed the muscle strength and the motor planning to be able to walk. But she just would not take her independent steps.

And we think now, looking back on it, it was just insecurity of not knowing what was in front of her because she has lower field vision loss. So she took those first independent steps when she was in a place that had very salient features. And we think that that gave us security and knowing exactly where she was, what was underfoot, where the transitions in the surfaces were. And that gave her the security to take those first steps, which is just amazing that she actually did it. But if she had had that-- or if we had had that awareness, then we could have helped her to become a more independent ambulator much earlier and much more secure in her walking still.

And then another area is self-help skills, so feeding. We had tried for years with all different types of bowls and plates and spoons, and all it took was for us to teach the salient visual features of a spoon and put a red foam handle-- a red sleeve over the handle of the spoon. And then Emma was able to feed herself for the first time, and it was just almost miraculous that she was just all of a sudden able to do this thing that we had worked on for years and years and years, but we could never get her to be able to do it on her own without somebody physically prompting her and helping her to do it. So that was just-- that was just crazy to see.

And drinking was very similar. We had a very similar experience. The only thing that she could drink out of consistently was a milk carton. And now we can look back at that and go, oh, yeah, well because a milk carton looks like a milk carton looks like a milk carton, whereas we used different cups because we didn't know that it mattered. So she didn't know, looking at these different things in front of her, if they had a different pattern on them or if they were different color or if they had a different type of lid, that that was a cup.

So once we taught her what a cup was with a lid and a straw, now she can drink out of any cup. It doesn't matter what color it is or what color the straw is. She has that ability now to recognize that as a cup, and that's something that I drink out of. The same thing with faucets and toilets and all those other things of daily living skills.

But the most exciting and perhaps the most frustrating of all of those areas of the years was communication because we tried every kind that you can imagine, starting with baby signs and then going to regular signs and PECS cards and boards and pages and switches and apps and books. We tried it all, and none of it made sense to her. She wasn't able to interact with any of it.

And the couple of things that she did interact with, we didn't understand what was important about that. And it was that we had silhouetted pictures of toys, but we also had PECS coordinator symbols intermixed. And when we had them on a ring and she was just looking at a picture of her toy, she could pick that card. But it didn't occur to us that the difference between the things that we had on those rings were making it impossible for her to go beyond that and for us to see that.

But now that we understand that she wasn't able to visually access that, we were able to completely adapt the device to match her visual ability, to understand what it is that she was looking at, and to teach her how to learn the meaning behind the words and the pictures that we use. And now we finally have the beginnings of a reliable communication system. And that is just amazing because, after 17 years, our daughter has a lot to say.

So if I could say one thing to the world, in a really long way, it would be that vision precedes all action and learning. And until you give a child access to their vision and visual world, their world and their actions are going to be so small. And they don't have to be. Thank you.

Tammy [? Reisman. ?] All children with diagnoses of CVI are individuals with unique needs, and service deliveries should be determined for them based on their individual needs.

Oh, that's very good. Talk when you're ready.

Hi. My name's Gunjan Rastogi-Wilson. I'm a parent of a child with CVI. If I could send a message to the world about CVI, I would say that parents should have hope for their children with CVI because their vision can improve if they're given the right opportunity and given the right strategies and interventions in order to improve their child's vision.

I would give teachers hope to say that you have the ability and power within you to help families and children with CVI have a fulfilling and productive life and future, and that the history of children in the past with CVI may have seemed dreary and bleak and our expectations may have been low. But now with technology, with increased education and resources, we are giving our kids a fighting chance in this world. Thank you.

Francesca Crozier Fitzgerald. CVI is something that I believe can no longer be ignored. We're all responsible from the medical side, from the political side, as educational professionals, as parents, as friends of parents, as friends of friends, to come together and do our jobs and help our kids see their world.

My name is Rachel Bennett. I am a mom of a child with CVI. His name is Henry, and he's six years old, almost seven. CVI is a brain-based visual impairment that affects the whole being. Once I learned about my child's CVI, I knew him. I knew why he did what he did. I knew why he behaved the way he behaved. And I knew why everything was so demanding for him. I knew how to be his parent, and I knew had to be as advocate.

With access to the visual world, children of CVI surprise us. Children of CVI will unlock their common potential. Always presume competence with CVI. CVI masks cognition. Children with CVI are bright and brilliant, no matter their other needs. With access to the visual world, they will thrive.

If you could just state your name.

Abbey [? Studer. ?]

And then your quote.

Kids with CVI are worth the time and effort they require to succeed socially and academically. Their positive, societal impact as a result of their villages' efforts will pay dividends for generations to follow.

Good. Thank you.

Hi. My name is Judith Millman. I facilitate a support group for parents of children with CVI. And the one thing that I would like people to know about CVI is children with CVI are not blind. They have vision. Their vision, when they have appropriate strategies to learn how to access it, their vision improves. It's a good thing.

Great. Thank you so much.

You're welcome.

I'm Dr. John [INAUDIBLE]. I'm a retired ophthalmologist, and I'm also a parent of a child with CVI. What I want to say is that I feel that CVI is presently a worldwide crisis, and the urgency is unmeasurable. There is so much that has been done to educate this group of children, which is the largest group of children with low vision the world. They need worldwide attention. Thank you.

Hi. My name is Kelly White. And if I could send a message to the world about CVI, it would be that for children, vision is the first way we explore the world. And with CVI, we have this unique opportunity to allow children to improve their use of vision. So why not build on that opportunity and look for the right people to [INAUDIBLE] to be able to use their vision?

My name is Anna [? Ult. ?] When you hear the word CVI, I want you to know that this diagnosis does not define my daughter, but it gives her the ability to access her world. Her life will now be improved because of our continuing knowledge of CVI, Cortical Visual Impairment.

If I could send a message to the world about CVI, that message would be that, unfortunately, there are no easy answers. We tend to want to see the checklist of things I can do. What are the top 10 things? Give me my manual for preparing my classroom. But each child with CVI is unique, and some children need one set of strategies when some child needs another set of strategies. It's understanding the condition of CVI. And how it impacts learning that tells you what you should do for this child.

Hi. My name is Susie [? Obujabber. ?] I think the most important thing I'd like to share about CVI is that vision can improve with supports in place.

I believe I would share that I think one of the most important things is that children with CVI are experiencing deprivation. So children who adhere to the 10 characteristics and who really kind of present early on as non-seeing, they hardly see anything, those children are experiencing this giant barrier to the world. And so they don't have the opportunity to learn in the ways other children do. And yet, because they kind of visually look kind of typical, visually, people think that they're just as interested or they think that they're not with it, or they're too brain injured to really care to see. But the real issue is that these children, because of those characteristics, are really in their own little bubble and can't access information incidentally, and often directly.

The fascinating to me is that once we provide the correct support, we can find out what that child's potential to learn really is. And to me that feels like one of the most basic human needs in the world, that these children get the chance to show who they are. And without it, they are just forever kind of like-- it's like this horrible form of institutionalization that starts in the medical world and the educational world, based on beliefs that this child cannot do something.

But they really so often can do a tremendous amount, including many children who can read, children who can socialize, children who can be absolutely be part of the world in a very high-quality way, can feel joy, can have friends, can have a fulfilling life. And I think people just underestimate what CVI does in terms of creating that deprivation or that boundary that they can't cross without our help.

CVI is as complex as the characteristic. CVI is unique to each individual. [? Katelyn ?] Barron. The average child with CVI is a unique learner with amazing qualities to teach us.

Some pretty strong messages coming from the Symposium. So what do you think? Leave me a comment. Let me know-- how would you answer this question? I have been thinking about this question myself, and I would answer it very simply.

There was a young couple at the Symposium and with them was their six-month-old daughter Valentina. Valentina has CVI her parents are very well educated with conditions of the brain as well as CVI. And they came to the Symposium to learn even more as they want to know as much as possible so they can do right by their daughter. What I saw were leaders in the field of visual impairment talking with this couple at length about their daughter's condition, and talking with them like they were the only ones in the room. I know this couple received some positive news about their daughter's future, and the thoughtfulness of these professionals is why I know her future is bright. Together, as a united and collected voice, there is no doubt in my mind that this group will be the change.

Before we go, I wanted to say thank you to those participants who had the courage to speak into the microphone and have their voices be heard. Thank you so much. Thank you again for listening to this podcast. If you enjoyed, this please consider subscribing. Your feedback will shape this podcast, so don't forget to like, rate, and review. If you would like to learn more about what we have to offer, please visit our website at www.PerkinseLearning.org.

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