CVI Parent_1_0 (Source)
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Joining us today is Rebecca Davis. She's the mother of two daughters and a CVI parent advocate. She founded the Visually Impaired Preschool Services, known as VIPS, in Indiana with Annie Hughes, a TVI, to provide specialized early intervention for infants and toddlers with blindness and low vision. 10 years ago, Rebecca Davis and her family began their CVI journey with their daughter Eliza. And the rest of that story is hers to tell. Welcome to Perkins, Rebecca.
Thank you, Robin. I'm fascinated reading everybody who's here. So welcome, everyone. It's wonderful to be with you today. My name is Rebecca Davis. I am the parent of a child with cortical visual impairment. So thank you for taking the time to listen to me today.
The wonderful folks at Perkins, Mary Zatta and Robin, spoke to me about doing a webinar for parents whose children have recently been diagnosed with cortical visual impairment. My daughter is almost 11 now. And that's hard to believe.
But if you are the parent of a child who has CVI, and the child is under the age of three, and infant or a toddler, I have been where you are and I do remember. I really wanted the chance to share some things with you that I wish that I had known or I wish that someone could have shared with me when I was beginning this kind of crazy journey. So thank you for tuning in. Let's see if I know how to do this. This is very exciting.
Oh, we did-- OK, did we do the who is here today?
Yeah, here we go. We have not done that. Let's bring that poll up. I'll read the questions out. It's always helpful for us to know who's in the audience, so we're just asking a brief poll for you to define yourself in terms of this topic. Are you a parent, a grandparent, an educational professional, a therapy or service professional, a clinical or medical professional, or a paraprofessional? This helps us know who's here in the room.
We'll let those poll questions come in for a bit. We are at about 60% education professionals, certainly a primary audience at these webinars. But about 31%, almost 32% defining themselves as parents. There is one grandparent online with us. And thank you for joining us. Three therapy and service professionals. Thanks, Phuong
So that's good. So really, I'm speaking to parents today. It's wonderful that there are education professionals involved, because you also have direct access to the parents, and maybe you can share some of the information with them. So again, my name is Rebecca Davis. I have two daughters. And here they are.
I have Anna Katie, she's age 13. And my daughter Eliza, who will be 11 in June. And they are the lights of my life. Eliza is a curious and loving kid. She loves music. She loves walking outside, petting her dog, sitting on her older sister. A lot of things that kids who are 11 like to do. She's mostly happy, and she has boundless energy and an iron will.
And I think we want to ask about the children that you work with. Am I correct?
That is correct. So tell us a little bit more about the kids that you're most closely associated with. We've got some age groups here-- birth to 3, 3 to 5, 5 to 12, or over 12. And we're seeing pretty even-Steven here between the school age, 5 to 12 and-- the birth to 3 and the 3 to 5 keep changing, so I'm just watching them come in.
So right now we're about 20% birth to 3-- 23% birth to 3. 20% 3 to 5. 53.3% between that 5 and 12, Rebecca. So that's right there in your wheelhouse. And one family with a child over 12.
OK, fantastic.
Great, thanks.
OK, so that's really important to know. And I think with Perkins, they will, or we will do a series of webinars about the different ages. I wanted to start as we would chronologically with the birth to 3 age. So that's what we're going to start with today. That doesn't mean that the information that we're offering is going to not affect you. It's just the age we're going to start with.
So now I'm talking about Eliza's first year. In her first year of life, my second daughter, Eliza, received a lot of medical diagnoses, including cortical visual impairment. We got cerebral palsy, microcephaly, optic nerve atrophy, delayed visual maturation, which turned into CVI later, ventriculomegaly, pachygyria. Area And there is a spelling quiz later so be ready. I'm totally kidding.
All this stuff came together in global developmental delay. And that was just the very first year. So if you're the parent of a child, of an infant who's been diagnosed with CVI and probably other diagnoses, I have been where you are now. There were times when I wasn't sure that I was going to make it through the day. There were times when I wasn't sure if I was going to make it through the next five minutes.
But I had two small children, so I had to. And I know you have to relate. I know what it is to struggle to understand medical terms that you've never heard before and try to make sense of what you hear in the doctor's office, and how to make that work in your own house and in your child's life. I needed so much help. I needed help I didn't even know I needed and I didn't know how to ask for it. And I felt so alone.
And in that first year, I found a really wonderful book. It's called Expecting Adam, by Martha Beck. And I really wanted to share this quote with you because I feel like it represents parenting and I feel like it represents parenting a child with special needs times 10. So "one of the great myths of our society is that when women are left with small children, they are not alone. The truth is that a mother left with babies is far more alone than she would be without them. Every bit of energy, attention, protectiveness, and care she might use to meet her own needs must first be directed toward the needs of her children." Well, if that's where you are in your life, I completely understand. And you are not alone.
The first legally blind person I ever met was my own infant daughter. And a lot of the things I thought every day was, what do I do with this kid? Her behavior as a baby was not at all like her older sister. I couldn't read her cues. I struggled to understand why it was so hard for her to sleep for any length of time.
She got this diagnosis of cortical visual impairment and being legally blind, and yet the only thing she wanted to do was stare at a light or stare at an open window. And she wouldn't look me in the eye. I didn't understand that.
When I would reach down and try to pick her up, she would startle and arch back and cry. And that hurt my feelings because it seemed like she didn't want to be picked up. When I did hold her, I would carry her in a baby Bjorn like this, and her head would always hang down like a ragdoll.
And there would be well-meaning people at the store and they'd always want to come up and see the cute baby. And they would say, oh my gosh, she's so cute, is she napping? And then I would just want to laugh bitterly at them because she never slept. I wanted to say to them-- I sort of wanted to shake them and say, I'm just surviving on fumes and caffeine at this point.
But you know, that's more information than they wanted. There were many times as a family in those first few years where I would try to take both of my girls out. And I would have Eliza in the little baby Bjorn right here. Go Sweden. And she would scream and jerk her arms and legs in a way that I'd never seen before until I took her somewhere that was quiet and the lights were dim, and then she would eventually calm down.
But it got really traumatic trying to take this kid out into public. And so I started to think that I must be hurting her, and so maybe we should just stay inside all the time. And then it starts to become this really negative spiral where you think, I can never go outside. And you start to think that this is what your life is going to be like, that your life is going to be watching your kid lay on the floor on a blanket staring at an open window while you sit next to her. And you could be on the moon for all the help you're offering her, because there was just so much to learn and it was so overwhelming.
And it was during this time that I met a very lovely teacher of the visually impaired. And she helped me regain my perspective. She saw how timid I was becoming and how afraid I was to take Eliza out. She encouraged me to take her out and told me I needed to have patience. I needed to do it over and over again.
That it was important for all of us to have new experiences-- for Eliza, for her sister, who was a toddler at that point. That we all needed to have as normal a life as possible. And so I said, OK, right. So what you're saying is Eliza needs to see the world. And then she said, and the world needs to see her.
Sorry. And that was like the most gentle and positive thing that someone could say to me in the lowest point of my life. I have never forgotten it. And I was a puddle after she said it. Like I am trying to be right now, so excuse me.
So I wanted to pay this forward. And I submit to you, fellow parents of children with CVI, that the same is true for you and your children. They need to see the world in the way that they can. Excuse me. They need to see the world and the world needs to see them.
So this is not the easiest goal to achieve. And that's what we're going to talk about today. Nearly everyday, I see posts about CVI on Facebook from parents whose children have just been diagnosed. And they are confused and grieving. And they need answers, and they don't even know where to get them.
I read these questions and I recognize them, because I could have written them myself 10 years ago. Sometimes I could have written them five minutes ago. When Eliza was born and the diagnoses started coming, I was desperate for information.
All children want their-- all parents, rather. All parents want their children to reach their full potential, whatever that may be. But for parents of children with CVI, this can be a real challenge. In the 11 years since Eliza was born, my family has lived in four different states. In our travels, Eliza has received services in five different states. And that is another story entirely.
Because we've moved so often, I've researched many early intervention programs in public school systems around the country. I've learned the hard way that states are very different about how they support and provide services to their young children with visual impairments and their families.
For us, a decade has passed and there still has been very little progress in getting CVI widely acknowledged by the pediatric medical community. And-- and this is the most important, this is for the parents-- it has been virtually impossible in getting the unique learning needs of children with CVI addressed by early intervention programs and public school systems. In that respect, we are standing still.
So how do we change the situation? How do we get some momentum to move forward to improve support services and educational services for our children? In my opinion, we need to form a community of parents and start a really loud conversation with our doctors, with our teachers, and with our legislators.
Many voices are louder than one. And there is strength in numbers. By the end of this presentation, I hope to shed some light on some common questions new CVI parents might have and maybe give you some useful information to help you start having your own loud conversation with your own doctors, teachers, and legislators. But first, we're going to talk about, briefly, just this is my experience and maybe it's helpful for you, but you are not alone.
You and your child have a right to early intervention services. Specialized early intervention is the treatment for children with CVI. And maybe we'll talk about too-- or we will, not maybe-- what you can do to provide your child access, and yourself access, to the support and educational services she needs. This is about getting support for both of you. So let's get started.
So you are not alone. And welcome to the club you didn't ask to join. Becoming a parent of a child with special needs is a process. It doesn't just happen overnight. Yes, you get the child overnight, but all the diagnoses, the sleep deprivation, the hospital visits, doctor's appointments, it is overwhelming. And it is sort of a transformative experience and you do change.
I also really like this quote. And so I included it because I think it also really applies to parents of kids with special needs, that "the moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother never. The mother or something absolutely new." And I like to think about that, because I feel like Eliza has changed me in many ways.
So you are not alone. And there are some of the early challenges that you probably are facing if your child is a toddler or an infant and has significant special needs. I have to admit that in those first few years, the days seem to last forever. But looking back, the years flew by.
There's trauma. A lot of us experienced trauma, whether it was emotional or physical or both, during pregnancy or birth. And that is something that takes a long time to recover from. And people might not realize that. It doesn't happen overnight. So be gentle with yourself.
Grief is completely natural. It does not mean that you love your child any less. You may need to grieve the loss of a life you thought you were going to have or the child you thought you were going to have. And to become accustomed to the new normal that your life has become and the child that you have now.
I forgot to put this in, but guilt is a big one. That's a biggie. You start to think, what did I do? What did I not do to protect my child? Especially if you don't have a specific diagnosis, like we don't. You obsess over every cold, every handshake, or what was in the air I was breathing, that time you licked the spoon after baking brownies. I mean, you can drive yourself crazy with guilt. So when you can let that go, that would be a really positive thing.
Isolation-- if you have an infant with disabilities, there aren't as many playgroups for us. And not so many Mommy and Me classes to join. I continued taking my older daughter, because she was a toddler, to our regular playgroup. And all of the moms had just had their second babies.
And I would sit there with Eliza with her head hanging down. And all the other moms would be talking about milestones. And they were smiling and tracking and gaining weight and sleeping. And it was like shaving my head with a cheese grater taking my kids to this group. And I would just sit there and eat brownies and count the minutes until I got home.
It's easy to feel very alone at this time. So if you are feeling this way, please remember that you're not. We are out there. And we'll find some ways to create a community so you don't feel so alone.
And a special mention-- this is at the very beginning-- that there are diagnosis days. Those are the days when you're just getting started and you're just getting your diagnoses, and they're painful. And they can be the very worst. So if you have doctors appointments coming up, try to be gentle with yourself that day and for the next few days.
Eliza was diagnosed with CP and microcephaly at six months old in mid-December. So then I got to go home and try to figure out what those words meant. And all I wanted to do was curl up in a fetal position and cancel Christmas. But I couldn't do that. It was excruciatingly painful.
But it wasn't about me. I had to make it festive for my family. But it was tough. So be gentle with yourself. Diagnosis days are tough. They will get easier as your child gets older, but they'll still come back and kick you in the butt. Or they have for me anyway.
OK, so that all sounds really negative. So I just want to make sure we all understand, though still, that there's also-- you bring a child into your life and you have more love than you ever thought was possible. And there is more joy than you ever realized.
And there is cuteness. And cuteness cannot be overrated. Just want to make sure we do that, we say that.
We also develop coping skills because we have to. Your skin gets thicker while your heart becomes a little more tender. Your sense of humor may become a bit darker. Your patience for other people's drama becomes a lot less, or maybe a little less. Your appreciation for simple moments of joy and beauty that occur every day with your kid will become fuller.
For me, with Eliza, a smile or a laugh became like Olympic gold medals that I would cherish. Like the first time she used her right arm when we were told she'd never used them. Or when she was 18 months old and she looked at me in the eye for the first time. Now, she didn't do it again for nearly a year, but I had my moment.
So you will develop coping skills, and you have to learn to laugh. You just have to. The world is not a gentle place sometimes, and we are hyper vigilant parents. And people do say things sometimes, don't they?
So I call this lemonade. You know the old saying, when life hands you lemons, you make lemonade. When you are the parent of a child with special needs, it seems like there are always people who want to give you plenty of lemons. They may not realize it, but they do. They want to make your-- maybe they don't realize it, but they make you think that your life is nothing but lemons.
But they don't know that. So I've collected a whole list of quotes that people have said to me over the years, like the lady that I was having lunch with once. And she looked straight at Eliza. And she sighed, and she said, you know, I don't know what I would do if my children hadn't been healthy, if I hadn't been blessed with six healthy children and 10 healthy grandchildren. How do you respond to that?
So I have collected a whole list of quotes like this. And it's my lemonade list. And it's as though every time someone says something outrageous or insensitive about your child or you, that they don't realize they're saying possibly, it's like they're handing you a giant lemon. And you have to transform it into something you can live with.
So I put it on the list. Now I have somewhere to put these words instead of carrying them with me or on my heart, because to be clear, when someone says these things to you, those words are not yours and they do not represent you or your child. We put them on the list and then they no longer have power over us. Anyway, that's how I feel. Got to have coping skills. You have to.
And then there's these quotes. These are great, aren't they? "Everything happens for a reason." I know many parents of kids with special needs who have told me personally that if they ever hear that phrase again, they will not be responsible for their actions. And "God doesn't give you more than you can handle." How many times have we heard that?
And then my pat response is, God has seriously overestimated my abilities. And slight confession-- OK, sometimes when someone says something that's really, really outrageous, I prefer to imagine throwing a lemon at these people and then asking them, if everything happens for a reason, then why did I just throw fruit at you? You have to develop coping skills. I haven't slept, like five years.
OK, so we're parents of children with special needs and we are becoming the parent of a child with CVI. There is so much more information about CVI out there online. You can do a quick search and you'll have way more information than I can provide.
So a quick definition. If you're watching this webinar, you already know what it is. CVI is a visual impairment due to damage in the visual cortex of the brain. Many children with CVI have more than one diagnosis. We get diagnoses.
Our kids have some of the most complicated diagnoses. And when there is more than one, it is hard to prioritize. Surely, health has to come first. The child has to be healthy. You have to be healthy. Everybody has to be healthy to thrive and learn.
I think after that, her vision, her ability to take information in needs to be addressed. Because our children are sometimes some of the most complicated cases, you get to learn about experts you didn't even know existed. Yeah, you may have heard about neurology and ophthalmology, but did you know there were pediatric ophthalmologists? Or did you know there were pediatric neuro-ophthalmologists?
These are things that we learn. Our children are often some of the most complicated cases that doctors, teachers, and therapists will see. So we learn about experts we didn't even know existed. It's a perk.
So you'll see, the more we learn about CVI-- and this is a quote that came directly from the American Printing House for the Blind, which is a great resource for information-- "the more complicated the conversation becomes." And boy, the word complicated, that is my least favorite word. I've heard it so many times when I'm talking about diagnosis with the Eliza, talking about trying to explain CVI to people who should understand it, but don't, to my own people in my family, trying to explain, well, it's complicated. You hear that a lot.
Is it frustrating? Yes. But we as parents don't have the luxury of waiting until things get less complicated. Our kids are here now. They need to be taught now. And in terms of this picture, just to let you know, I often feel this way when talking to doctors, or seeking out therapies, or trying to explain CVI to someone who's never heard of it before. You may have similar feelings.
There are going to be common challenges for CVI parents. I found this information from Dr. Gordon Dutton and Dr. Amanda Lueck really, really helpful. I started going to conferences and workshops over the years to learn more about CVI. And I would speak to parents.
And I just naturally assumed that all the kids were sort of like Eliza, that they were going to be nonverbal and significantly delayed. And then I started talking to the parents. And I found out that a lot of times, the kids were verbal, or they were highly verbal. And these parents were facing different educational challenges than I was.
And I went away thinking, oh, this is a lot more complicated than I thought it was. It's sort of a spectrum. So they talk about the three groups of children with CVI. Children with profound visual impairment and multiple disabilities, children with CVI and functional vision and cognitive challenges, and children with CVI and functional vision who work at or near the expected academic level.
That was really new information for me, and it helped me realize what we're talking about. This is a spectrum. It's all under the umbrella of CVI, but it's a spectrum from mild to severe. And this is good information for parents to have when you're getting started.
Some other common challenges-- I see this a lot on Facebook pages. Getting the diagnosis. In some places, there seem to be pediatric ophthalmologists who don't want to give a CVI diagnosis. I don't understand that. I'd be interested to know why.
Sometimes they will fall back on delayed visual maturation. That's what we got. And so when I asked the doctor-- Eliza was 4 and he diagnosed. He said, she's fine, delayed visual maturation. I asked about CVI. And he said, don't buy trouble. I have no idea what that means.
So you might not get a diagnosis. It might be a good idea to start looking for pediatric neuro-ophthalmologists. If you can't find somebody who seems to understand CVI, start looking for these doctors. They are the experts in the field.
And they are kind of hard to find. That's not to say that there aren't wonderful pediatric ophthalmologists. I'm just saying, just know that there are pediatric neuro-ophthalmologists and they would really be able to help you with a CVI diagnosis.
Here's the deal. You'll go-- even if you get your diagnosis, what may very well happen, and did happen for us, is that you will hear them say some of my least favorite phrases. The doctors may tell you, there's nothing you can do. It may improve, it may not. Come back in a year. My least favorite-- wait and see.
If I can do one thing today and get the doctors to stop saying, wait and see, about children with CVI, I will feel like I got something done today. The prescription for CVI in an infant or a toddler is specialized early intervention provided by someone who has extensive training in the unique learning needs of children with CVI. And time is of the essence here. We're talking about the first three years when brain development is at its peak.
You've got your full potential for learning. So many synapses are firing, connections are being made. First three years, you can't have a doctor saying, eh, there's nothing you can do. See you in a year. That's not how it works.
So if they say, wait and see, you say, no. I need to be referred to early intervention in my state. I need specialized early intervention. If he says, there's nothing I can do, you say, no, nothing you can do. You can't prescribe glasses or surgery, but you can refer me to early intervention in my state.
Come back in six months-- sure, after I've received specialized, early intervention for six months. It may improve, it may not. No! I think research is showing us now that the prescription for CVI-- and if you get that prescription filled-- being that it's education, specialized early intervention, that the child's vision does improve. It can improve. It does improve.
Research is proving us out on that. Come back in a year-- sure, after a year of specialized early intervention. I know that I'm saying this over and over again, but it drives me nuts to see comments on Facebook pages and hear that people are still hearing this from doctors. They must understand that even if they can't fix it-- and they don't need to know about early intervention, how to do it, they just need to know to refer it through the system.
You should have a state early intervention program in every one of your states. There should be specialized early intervention in every one of those states. And the doctors should be able to say, you know what, you need to go talk to your EI people. That would make me happy.
We are CVI parents. We are our own best resources. You know that a worried parent does better research than the FBI. And it's absolutely true. Our children share a diagnosis.
I think that we can move forward. We know that it's complicated. All kids with CVI have complex medical needs and multiple diagnoses. I think all-- most of them. I probably shouldn't say all.
CVI looks different in each child, and our children share a diagnosis. But we as parents have a lot in common. And I think that's where we can move forward. We all want the best start medically, educationally, and socially for our children.
We all may face the same challenges within the medical community and the educational community, no matter where we live. We all want our children to achieve their full potentials. And we should get discounts for life on colored duct tape, flashlights, black fabric, and mylar pompoms. It's worth a shot.
Also, parents, you still-- I don't care how many experts in white coats talk to you on a regular basis, you are still the expert on your child. You see already that a CVI diagnosis doesn't mean the same thing for every child. We can view it as a spectrum from mild to severe.
And experts in the field continue to do research, and that's great, and they're going to publish new articles and books. It's evolving. That's wonderful. There will be much more information to come.
But for now, we as parents, we're here now. Our children are here now in this moment. And we have the big picture in mind. We have to take the diagnoses, the medical jargon, and the available research and put them together to make a new normal in our lives. We have to figure out how to make our lives work.
We have to figure out how to reach our children. We have to lay a solid foundation of learning. So looking at birth to 3, we're talking about early intervention. I suspect if you're watching this webinar, you already know what it is.
It's the services-- the education and support to young children who are deemed to have established conditions, and support and services for their families. It covers many areas of development, physical development, cognitive development, communication, socio-emotional, and adaptive development. And a lot of folks don't know about early intervention until someone in their family needs it. Some of the therapies offered include developmental therapy, occupational, physical therapy, speech therapy.
And here's the thing that it took a while for me to dawn on. It's for the parents too. I know that seems obvious, but for a while it took a long-- it took a while for me to see that these lovely ladies-- because they were mostly ladies who came into my house-- were teaching me about Eliza as much as they were helping her develop. Addressing all of her physical, developmental, and health needs was simply more than I could do. It was more than one person could or should have to do.
Early intervention is wonderful because it's in the home environment. Home is the child's first learning environment and parents are a child's first teachers. It's a huge learning curve. When there are so many challenges to a child's development and you're trying to run a house, it can be really stressful.
It's stressful for you, it's stressful for the child. And stress impedes learning. So the more help we can get, the more supported we are, the less stress there will be for the child, the less stress there is for us. And everybody is going to learn in a more successful way. I know I needed all the help I could get.
So early intervention is really important. And this is the law that's behind it. And this is-- if you have a child with special needs, you're going to get really comfortable with this law. It's the Individuals with Disabilities Education Act. This is the law that was written to provide services to children with special needs.
The part we're going to refer to today is Part C. The Part C language-- this is really important too. I keep saying that, but it is. When you start to advocate for the services in your state, really get to know this language.
Congress established Part C because of "an urgent and substantial need to enhance the development of infants and toddlers with disabilities; to reduce educational costs by minimizing the need for special education through early intervention; to minimize the likelihood of institutionalization and maximize independent living; and to enhance the capacity of families to meet their child's needs." With all the diagnoses we have, our children fit right here. So these services should be available in every state.
And I also put in bold, "in order for a state to participate in the program, it must assure that early intervention will be available to every eligible child and family." Those are key points. And we'll talk about them in just a second, after we talk about why it's so important for kids with CVI.
So we talked about the first three years, the first five years. As much as 85% of brain development happens before the age of 5. It's a critical time for learning. And if you are a sighted person, or you're a sighted child, as much as 80% of all learning occurs through the visual system. You're going to take it in through your eyes.
So if you are a child and you have vision loss, you are going to be at risk for overall delays in every area of development. So children with severe vision loss need specialized early intervention. It helps them learn to use the vision they have, and it helps them learn to use their other senses to understand the world. So key point here is that these kids don't have access to something called incidental learning.
And this is a really good thing for parents to understand, because when you start to advocate and when you start to ask your providers about how much they know or don't know about children with vision loss, if you can explain to them what incidental learning is, they're going to start to understand why it is that you're pushing so hard, and why it is that the services need to be specialized. So from the moment you open your eyes in the morning until you go to bed at night, you are constantly taking in information without even trying.
Incidental learning is the information you receive with your eyes without even thinking about it. And I know a really wonderful teacher of the visually impaired. Her name is Annie Hughes. And she tells people the blue bowl story. And this is attached to this webinar, but I'm going to read it quickly.
So you have two babies in high chairs in the kitchen. One has normal vision and one is blind. And dad comes in and he says, honey, I rented a movie. I want to make some popcorn. Where's the blue bowl?
And the mom says, oh, it's on top of the refrigerator. So the dad goes over to the refrigerator. He reaches up on top and he gets the blue bowl and he brings it down, goes to the microwave, and he makes some popcorn. So in that whole experience, couple second experience, the child with vision has received several incidental lessons.
The word "refrigerator" was connected with the object. That big shiny metal box has a label now. It's the refrigerator. The child is starting to get the concept about what it means to be up top. She saw dad reach his arm up on top.
The child is beginning to understand that what daddy brought down from the top of the refrigerator looks like her cereal bowl. It's bigger, but it has that scooped out part. So you're thinking, oh, that must be what makes a thing a bowl is that scooped out part, that it holds something. And when dad brought the bowl down, it was blue. And maybe the child has a blue ball, so she got information about the color blue. So those are four lessons, incidental lessons, she got in just hearing and seeing.
What did the child without vision get? That child heard the same words, but it wasn't connected to any kind of meaning. Sometimes this is called empty language. This story illustrates how important it is for children who are blind or who have low vision to have real experiences with real objects so the language they hear isn't empty language, but is tied to meaning.
So if we as parents can understand this, then we can tell this story, or we can print out these handouts and we can hand it to our caregivers and our therapists and our teachers and say, I need you to understand what incidental learning is, because this is how my child is going to need to be taught. She doesn't have incidental learning. We have to figure out a way to keep her from having empty language experiences over and over again. That's not how she's going to learn.
So the reality of the situation-- on paper, it looks as though IDEA Part C mandates services for children with CVI, as well as blindness and severe vision loss, because these diagnoses clearly fall under the wording that we talked about straight out of IDEA. It's an urgent and substantial need. We need to enhance the development of children who have these diagnoses. We need to maximize their independent living skills. We need to reduce educational costs. We need to enhance the capacity of families to meet their child's needs.
It's a no-brainer. But in reality, in America, you get services through the luck of the zip code. There's actually a couple of problems. The first one is the luck of the zip code. In some states, if an agency is providing specialized early intervention for visually impaired infants and toddlers, the services are not ongoing or frequent enough.
Some states get away with that. They say they're compliant by offering one visit from a teacher of the visually impaired to a family once a year. One visit, once a year. Imagine having a child with cerebral palsy who only got to see a physical therapist once a year. How much progress do you think that child would make?
It's not enough. In some states, no state agency or school is providing specialized early intervention. Nobody's asking for it, nobody's fussing about it, so they're just not offering it. And in some states, if you live outside of an agency service area, your child will not receive services unless you really start to advocate for it.
Another part of the reality of the situation-- there is a national shortage of providers. There's a national shortage of teachers of the visually impaired. In some places, early interventionists, pediatric therapists in all categories. And on top of that, there is a shortage of teachers and providers trained to work with children with CVI. There's just not enough of them.
So if you are getting some services, it's really important that you start to ask, what kind of training do you have with CVI? Just attending one conference, or a weekend conference, or one workshop is not enough. We're talking about extensive training, because this is a complicated vision loss. Again, we've seen it's a spectrum. There's so much more information than we as parents can pick up. We need our teachers to understand it and we need our providers to understand it.
So here's what I suggest. We have to have a plan. We have to come together as a community. And here's sort of an idea for an action plan. If you like it, that's great. If not, we can work on something else.
But you have to start to advocate. If your child is supposed to get early intervention, I would ask the system, I would ask your case manager if they provide frequent, ongoing, and specialized early intervention from a teacher of the visually impaired. Those are key words so I put them in red-- frequent, ongoing, and specialized. One visit once a year doesn't cut it. And don't take that as a response.
If the answer is yes, why yes we do, then I say great. And I'd love to know where that is. If the answer is no, you might think about reaching out to the DeafBlind Project in your state. Every state has one. And the Deafblind community has been really welcoming in the CVI community. And perhaps some of their providers might be able to help you with CVI.
Also, I would ask that every provider that your child has has a CVI endorsement. Perkins has started recently providing a CVI endorsement. And I think you should really look into that. Just me.
I think we are also going to need to develop a community. I suggest you check out the Pediatric CVI Society. They're looking for members. We want to build this group up and become a voice that has an agenda to help improve services for children with CVI across the board. They have an annual conference, and there's the information about that.
Also, on social media, CVI parents are awesome. Parents are-- they're amazing. If you look, there are blogs, there are Facebook pages. Apparently there are Pinterest boards, but I'm not on Pinterest so I don't know.
And also, education. Tell your pediatric ophthalmologist that your child needs to be referred to the early intervention system. And tell your early intervention providers that they need to be trained. Not just one weekend workshop. They need to be trained in working with kids with CVI. They need to get an endorsement.
So it's a lot. It's a lot to take in. I'm sorry. I feel like I've just told you a whole lot of problems, but I think if we don't identify the problem, then we can't move forward in having a solution. So now let's identify the problem. I think we did. We've got to move forward. We've got to start doing this stuff.
So to paraphrase Justin Dart, who is a disability rights advocate, he said, get into politics as if your life depended on it. It does. I'd like to say, advocate as if your child's quality of life depended on it, because it does. So thank you very much for humoring me and for listening to me. I hope this was helpful. And I will turn it over to Robin.
Thank you, Rebecca. I'm right here with you. Thank you very much. I want to invite people to enter questions in the Q&A box that appears on your screen. And while people take some time to do that, I just wanted to thank you again for sharing that information, Rebecca, and remind everyone that the presentation will be available on our website, as well as the recording of this presentation.
So, Rebecca, I guess I should also say as people are putting in their questions, I'm going to do my best to try to protect everybody's privacy. I know that some of you have real specific questions about your individual situation, which Rebecca is not at all qualified to address. So what I will try to do is find the nugget of the question and ask that. So if I don't ask it exactly as written, I hope that you'll understand why.
We have a question from a grandparent who has a-- yeah. I'm sorry, I was just misreading what it says. So the grandchild has CVI. And-- just a second. I'm sorry. A question just came over that. And the grandparent is asking what she can do to help her son, to support her son and understand that he needs to embrace that child and his visual impairment in the ways that you have discussed.
Great. So I think it would be good to understand, and I'm sure you do understand, that he's probably grieving. And there's-- maybe there's a lot going on with him. And that would be part of that difficulty.
And maybe approaching him with the idea that-- the incidental learning information that we provided. There's also-- there's a letter at the end of this webinar that we're sending-- you can send to a doctor if you want to if you're not getting a diagnosis. And just start to show him that yes, this is really-- if the child has that diagnosis, that it is overwhelming, that it is challenging, but that we are starting to figure out ways to solve the problem for people.
So he might be completely overwhelmed and not know even where to begin. So if he understands that typically sighted kids learn with incidental learning and his child is not going to learn that way, so we have to get people who are specialized. And that maybe you could say, I will help you find experts, or I will help you find the people who at least we can start this conversation with.
Does that make any sense at all? I think empathizing with him, asking him what he wants for his child, believing that the child can learn. If it doesn't start with us, it's not going to happen. So we have to have hope. We have to regain our hope if we've lost it. And if you believe he can do it, he can do it.
Thank you. Rebecca, remind us again how old Eliza was when you received her CVI diagnosis.
Six months old. We got a diagnosis of delayed visual maturation at four months, because she wasn't tracking anything. And I knew a little bit about CVI, but he wouldn't even go there. So we went to a pediatric neuro-ophthalmologist. We got the diagnosis of CVI at six months. And he said, it might get better, it might not. Go home, wait and see, see in a year.
That's similar to a question that's being asked, particularly about doctors who maybe have conflicting responses or conflicting diagnoses, including a doctor who may suggest autism is in play. Did you have that experience where you had doctors kind of maybe even arguing over you with each other?
Wow, that's an excellent question. And I still haven't put my finger on that yet, because I wanted this just to focus on birth to 3. Eliza did get a diagnosis of autism when she was about 4 or 5 years old. But the CVI came first.
And those are behaviors that are very similar. And I think Dr. Roman talks about that quite a bit. And I think there's really good work coming out of the Texas School for the Blind, if I'm right about that. I can't comment on that, but that is really fascinating stuff.
I think the folks who want to diagnose autism really need to take a look at CVI. They really need to take a look at the child's background. Were their neurological insults when they were born? Was the child premature? Was there a stroke? You know, all the stuff that can happen that can lead to CVI. And really take that into account when you're also looking at this diagnosis.
That doesn't mean that they can't co-exist, but I really think the folks who diagnose autism really need to understand what CVI is before they make those diagnoses.
Great. Jessica asks, does your daughter have a CVI-endorsed TVI now, and how did you facilitate that?
We were going to get into that in a later webinar.
And we will. But if you want to give a brief answer.
So there's a reason I talk so fast and that I seem to be very passionate about it, because every school system we've had to go to, I've had to start explaining that TVI is a thing. It's important. And it affects how she takes in the world.
So currently, we are working with Fairfax County. Dr. David is actually listening in. And they've been really receptive to us bringing in CVI accommodations. So we're working on it. It's a work in progress.
Good. We have another teacher who comments, said that as a TVI, she has always felt-- these are her words-- inadequately qualified for working with a child with CVI. And notes that your presentation's inspired her to do some more research and to learn more about it. So she's just giving you some thanks for that.
And is Eliza in an inclusive school? Is she in a mainstream situation?
She is in a classroom in a public school. And we're working on giving her opportunities to be included with other folks. And I am working with a private CVI guru who is helping me at home and in school-- Dr. Sandy Newcomb, Dr. Sandra Newcomb. She works with Dr. Christine Roman-Lantzy.
Thank you.
So we're working on developing stuff here and then trying to get that information out to other parents, because we would like to see-- I don't want another parent to feel as alone and as frustrated as I have felt. So we're going to see what happens with that.
Just a little input, again, from the participants. Terry points out, in your point about CVI and autism, that Dr. Gordon Dutton talks about that in his book, as well. So if anyone is interested in reading more about that CVI and autism link, you can look to his work.
And another question about some of Eliza's physical challenges. You mentioned that she has challenges with her right arm. And the participant is just curious if that tends to go with CVI. She says-- I need to scroll down just here a little bit-- that her own son has a weak, sort of a weak side, and what the relationship is there. A weaker, less coordinated side is what she says.
Yeah, so that's going to be-- that will depend on the amount of if there's damage in the brain, or if there is-- so I can't speak to that, I can speak to Eliza. She was born with an underdeveloped brain. So she has a situation called ventriculomegaly, the ventricles are bigger than they should be. The walls of the brain are a little thinner than they should be.
And pachygyria, which is that the little symmetrical bumps on the brain are not symmetrical. So that means it takes her a lot longer to learn things. There is a certain level of cerebral palsy. When she was smaller, we didn't know-- her arms and legs were completely rigid, so we didn't know if she was going to walk. We didn't know if she was ever going to use her arms and legs.
So I do remember that day when we were sitting on the couch when her little right arm shot out and she started scratching the red couch. Could have sung opera at that time, because that came out of nowhere. It's the little things like that where you start to realize, OK, we've been told she's not going to jack, and then she just started doing things.
So what else did they get wrong? So I'm sorry, that's tangential. But that is our [INAUDIBLE].
No, that's a good story. Is Eliza verbal?
She's not ver-- well, she's loud. [INAUDIBLE]. Since we have been working with CVI-endorsed experts, and we've also started working with some ABA folks, we have gotten more communication out of her than we have gotten in 10 years. So in the past six months, she started to sign for more. We are we're working with-- and what you call them-- an AAC device, trying to [INAUDIBLE] pecks that she can use.
With her, it's auditory scanning. So sometimes it's less about what she can see, because CVI. But she's can scan-- she can anything. If she wants to change music, she'll do that in a heartbeat. So I think that's kind of the key.
For me, it's fascinating to figure out. Because I had given up hope that maybe this kid could not communicate. It's been a great six months. [INAUDIBLE]. I just don't know how to get to her. And we're slowly but surely learning how to get there and seeing that she can communicate. And it is a wonderful experience. And that's why I want parents not to give up. Just because they don't know how to reach them doesn't mean they can't be reached. We just have to figure out how to do it.
Very well said. Are you able to speak to any of the other kinds of tests that can be done? This is pretty medical talk, but I don't know in your own experience what experience you guys have done with MRIs or EEGs.
We've had them. We've had bunches. What [INAUDIBLE] she was diagnosed. I mean, I'm not being-- I do. It sounds like I'm flip and I'm not. It's like when you go through it and you come out the other side and you're just kind of numb to it all.
We've had numerous MRIs. When she was 4, she started having seizures. So now we have seizure disorder. I didn't mention those diagnoses because I was focusing on birth to 3. It's a long, bumpy road. So we did have MRIs. We had EEGs.
And guess what, the EEGs said that her brain functioning was a little abnormal. Well, I could have told them that myself. We've had sleep test upon sleep test upon sleep test. Yes. I mean, it kind of goes with the-- I'm not making light of it. I'm just-- you have to cope with it.
When your child has a sleep test and they put all that stuff on them, and they look like a World War I veteran or in-trench warfare, you kind of have to laugh at it, because otherwise, it can be quite horrible. So yes, she's had all of those. They come back abnormal. And we go off and we figure out how to get through the day.
So perhaps you will be able to get into that in a later webinar. Phuong we had one last poll I wanted to bring up. This might be a good transitional place. There's a couple more questions I want to get to, but since you mentioned this, in our planning for what is the next stage of these conversations, we're asking on screen for you to pick from this list of six the three things that you feel like could help your child, or if you are a teacher help your practice with a child, the most right now.
And if you could pick the top three out of an official diagnosis of CVI; an assessment on the CVI range, which we didn't talk about too much today, but we certainly can in later sessions; a CVI specialist on your team, which is what we've been talking about just now; a network of parents to talk with; or information that you can take to your ophthalmologist; or information that you can take to your school district.
Out of those six, if you were to pick the top three. And this might help us determine what our next sessions are. There's a lot of voting going on, and we'll be able to save this, Rebecca, so we'll know precisely what the counts were. But right now, information for our school district has been staying steady at about 56% of the vote.
A CVI specialist on my child's team is at 65.6%. And just getting a couple more votes just now is an assessment on the CVI range. 18 votes at 54 and 1/2%. So an assessment, a specialist, and information for my school district. All three real education-focused needs are coming up at the top.
Now, closely behind that is a network of parents. And you've provided some great resources for people to go and check out, depending on what your preferred method of networking is. If you like social media and you want to get into some of these groups and discussion boards, there's a lot of them out there. If you're more face-to-face, you might consider a couple of the conference in Omaha, if you're able to get to that that Rebecca mentioned.
And then I should also mention that here on the Perkins campus in Watertown on April 7th, we have our third annual CVI Symposium. This is a 9:00 to 4:30 workshop, so call it all-day workshop that is a rare opportunity to listen to top experts in the field discussing their current research and practice related to brain-based visual impairments. If you are able to get here at all for that, there are still a few seats available as of this morning.
We'll provide a link in your thank you email after this event. You can also visit our website. And you want to search for the phrase "Third Annual CVI" or "CVI Symposium" and make sure you're looking at the April, 2017. For our professionals who are online with us, you can earn 6.5 credits, PDPs or continuing ed credits for attending that. So that's also a bonus for you.
I wanted to point out a couple of questions that came in in the end, and we're almost at the top of the hour. Julie is asking if the symposium is held annually. Yes, it has been. And so this is the third one.
I want to thank Scott for mentioning, and I'll tell you, I did not plant this, but Scott posts, Perkins offers a three credit graduate level class in CVI for TVIs. He writes, the class is offered twice a year. It's actually offered four times a year. It is instructed by Christine Roman. It was designed by her.
And Scott writes, I can't speak to it. I'm scheduled to take the course in April. And that his district-- I'm having a hard time bringing the question up, but it seems like he's getting district support, which is fantastic.
I'm sorry, can I say something real fast?
Yeah, go ahead. Please do.
That'll [INAUDIBLE] with the parents. I mean, that's fantastic. And if we can push that as parents, if parents ask for it, then the school systems have to respond. So if you start to say, I have to have a CVI-endorsed teacher, and you don't take no for an answer, you'll be surprised at what might happen with that, especially if we all push together.
I think we mentioned, there is a letter attached on the download files for the folks. You said that they'll need an official CVI diagnosis. We've put together a letter that you might be able to print out. And it's a good starter letter to take to your doctor to explain to them that this is the situation that I need you to look at and take seriously.
Thank you for mentioning that. It is available on the screen right now in the download files. And it will be available on the webinar page with the recording. And it's a great template that you can just fill in the specific information about your situation.
It is a minute after the hour, and I know people need to drop off. I wanted to close with one comment that's been posted in the Q&A. And it was posted early on and I saved it for the end.
"My daughter is not 3 yet, but I feel like you could have been describing her and our whole diagnosis experience to date when you described your daughter." And she goes on to say that the suggestions that you've made have really been extremely helpful. And so I wanted to let all of you parents here, and as Rebecca said, you are not alone. And the more you can talk to each other, the better.
I'm afraid we have to close it here. I want to just-- I also want to acknowledge my partner, Phuong who runs the console for these webinars. He's been with us from the beginning. Today is his last appearance in that capacity. He's moving on to a new stage in his professional life.
And I wanted to publicly thank him today on behalf of the eLearning team. You don't notice what he does because he does it so well. So thank you, and thank all of you for joining us this afternoon. And we'll see you next time.
Thank you so much.
Bye.