Balancing home life with a child who has CVI - Rachel Bennett


Balancing home life


Hello, and welcome to Perkins eLearning to go. Each week our hope is to provide you with an inside look at special education topics. In particular, visual impairment. Through a series of interviews with leaders in the field and a fresh look at our webcast series, we know you'll learn something new when you are on the go. Now it's time to sit back, relax, and let's hear what this week's podcast is all about.

Hello, and welcome to Perkins eLearning to go. This is Valerie. Today we have a special guest. Rachel Bennett is a special education teacher and curriculum specialist. She's a Pilates teacher. She is a advocate for special needs education and mom to Henry and Clara. Henry is a vibrant and brilliant child who happens to have CVI. However, his mom is determined to make sure Henry's world is accessible.

Rachel has learned much about CVI on her own and through coursework, and has indeed made Henry's world more accessible. He even loves to do laundry. Rachel is a busy person, and I am grateful she took some time to talk with us about her son and their journey with CVI.

So thank you, Rachel, for joining me today.

Thank you, Valerie.

Excited you're here.

I'm so excited to be here. What a joy. Thanks for having me.

So can you tell us a little bit about yourself?

Sure. So my name is Rachel Bennett. My son Henry, who's 7, he's in first grade. He has CVI And other needs, as well. So I'm a CVI mom. I also used to be a special educator, and I worked as a curriculum specialist in the secondary English office for the largest school district in Maryland. And we recently moved here to the Boston area. So we're very grateful for everything that's happening for Henry and the services you're receiving. It's been a really good move.

Tell us a little bit about-- you mentioned Henry.


Tell us a little bit about your whole family. Is it three of you or--

So four of us. I have my husband Carson. He's a physics teacher. And Clara, she's three years old and amazing and fiercely independent. And a wonderful sister to Henry. It's been amazing to watch them grow together and see how she's become a real resource for him. So I'm just grateful for her in so many ways.

How has Henry's diagnosis affected your family or has it affected your family?

Oh, man. It's been world changing.


Oh my gosh. CVI has really affected our whole world. It's changed my world. And having a child with special needs is all encompassing, and it's really hard. And I really want to make sure that I'm real and honest and open today. It can be-- it is traumatic and stressful and painful. And know that me, and I'm sure other parents of special needs, are processing all of that on a daily basis. And so it's really hard. And so trying to get used to what it's like to raise a child that doesn't fit in society, what it's like to raise a child where the medical community and the educational community just haven't caught up to what they need to do to serve kids with CVI.

And so a little bit about Henry's story. He was born term. No big event or anything. And early on, we noticed he had low muscle tone. Right. They call it floppy baby syndrome. And he was very floppy. He just kind of spread on out. But I also started noticing that his eyes were shaking, and as a new mom, I thought, oh, all eyes must shake, right? The visual system is really hard to develop. Little did I know that's one of the early systems that developed. So I shouldn't be shaking at 4 months old. And that's kind of what got us started on the journey.

We saw an ophthalmologist. He had an MRI. Then we saw a neurologist, neuro-ophthalmologist. We went to NIH. And so, realizing that he wasn't hitting the milestones-- he hated to be on his belly. He wasn't crawling on time. He didn't walk on time-- all of that. But he was also a failure to thrive. And so we were in survival mode for our first years of life. It was really hard for him to eat. And realizing why now, looking back, it's all making sense.

And so once we were able to get him nutrition, we were still trying to figure out why he was such a mystery to so many people, you know? He didn't look down when he walked or crawled. He's never looked at me. He never recognized me when I walked in the room. He was never interested in, really, toys or TV. He just wasn't developing the way that he should be.

And he was hospitalized for a certain point because he was so medically fragile just from a stomach bug. And I remember our doctor came in after we'd been there for a week or so, like, oh, he'll catch up when he's 3. And I go, OK, yeah, he'll catch up. Sure, totally fine. And I just kept believing all these doctors, you know?

Well, you don't know what you don't know.

I don't know. Right, you don't know what you don't know. Exactly. And I've gotten to a point now in my life where I've stopped beating myself up for not figuring it out on my own. And he was about four and and half, nearly five when his teacher kept saying, he's just not using his vision. And we were on the road to diagnosing him to severe ADHD, severe behavioral concerns, because he was really having outward, disruptive, aggressive behaviors.

He was probably frustrated.

Oh, yeah. We know why, right? All response to complexity. I mean, he couldn't-- this whole world is so difficult for him to process. And so eventually, we were at an IEP meeting. And one of the TVIs who assessed him said, you know, he has characteristics of CVI. And I go, well, what's that? How come I haven't heard of this?

This is after three different visits to the National Eye Institute at NIH. This was after three or four different TVIs and after so many doctors. And then, of course, I started reading Dr. Roman's book, Dr. Dutton's book, and realizing he's textbook case, you know? He's not so complicated or mysterious.

That must've been a relief for you though.

It was such a relief.

Because you get something to go on now at least.

Something. It was such a relief. So eventually, I was able to get Henry's entire exome tested, which we were really excited that we were able to do that. And they found a variant in the ASTN1 gene.

What's an exome?

What is that?

Just because I don't know.

So it's-- you test--

It's like a genome?

Yeah, it's like a genome. Yeah, so you test the genes.


That's not a scientific way to say that. But--

It's layman's terms.

In layman's terms, that's how I roll. And so they found this one variant and-- because we worked with geneticists a lot. And people were trying to figure out what was going on. A lot of families try to get answers. And a lot of families with CVI-- they or their kids have a rare genome or rare genetic syndrome.

And so for Henry, they're only found a variant in the ASTN1 gene, which is responsible for sending neurons to their final position during fetal brain development. So something happened with migration where those neurons were unable to get where they needed to go to be able to build connectivity and to build function. So for all those doctors out there listening, we need a little more research on that.

You got to check the 'nomes.

Check the 'nomes, please, ASTN1. But I am learning in my classes, of course, on CVI that I'm taking at UMass Boston. There's a whole myriad of causes for CVI, right? It's the brain. And so much, right, so much can go on with the brain. It's so complex.

And so much is still unknown about the brain.

The more you know, the more you realize you need to know. It's mind boggling, exactly. And it's exciting that we're all still learning, right? There's still a lot to know. You know, we missed a really key period of development in his brain. And now I see that. Using tactile and auditory cues is his primary way to make sense of his world because we didn't know for so long, right? And so of course, he's so smart, he's going to compensate for what he needs to do to be able to survive.

So we're just-- and he also has other ocular issues. He has optic nerve hypoplasia. He has nystagmus, that shaking of the eyes, of course. And I'm grateful that he's in a place where he's getting the services he needs and support he needs and that he has a TVI who's a dream come true and who is going to help us figure him out.

We hear a lot about the TVIs. Are you familiar with [INAUDIBLE]?

Yes, yes.

So she had Ellen Mazel as her TVI, and a huge difference it made for her son.

If we could all have Ellen.


Ellen, go all across the country, please.

Clone her.

We need you.

But to have-- you know, you just need that right person. Just like you found the book, you needed that, right?

Yes, mm-hmm.

Something to go on.


And then it kind of will start falling in place.

Yeah. And I also found the CVI parent community, which has been a lifesaver.

And there's a Facebook group for that too, right?

Yeah, we have a lot of groups. Yeah, there's a Facebook group. We've also-- there's the teleconference call with the New York Lighthouse Guild. That's been amazing. So, it's a weekly call every Tuesday. And so we have guest speakers on. Dr. Roman comes on.

We also have time to just talk with each other. That was amazing, especially that first year, trying to figure out Henry and what I needed to do for him. And we've all just got-- stayed-- we're all really close right now, right? It's your family. And so a lot of us are working on the Pediatric CVI Society.

I was fortunate to create and develop the new PCVIS website with two other parents of children CVI along with a web designer. I want to give a shout-out to these amazing women-- Jessica, who is also the creator of Kaleidoscope, the CVI podcast, and Lynn, who recently created the website, See CVI Speak AAC, along with an online discussion forum with families who have children of CVI who also use AAC devices. So thank you, fabulous women., and it's just getting started. So we're really excited just to be able to-- we wanted to create a website that we all wanted when we found out our kids had CVI, just to place a hub of information, similar-- you know, Perkins is a hub as well. But where you can go and what you need to do as a parent and as a provider to serve our kids.

Well, and to even have the other parents to support you. I mean, they--

You need it.

--probably have already gone through it. Or you have people coming up that you can help. There's nothing-- that would be the best thing.

I know. And you need it, especially families right now are not getting an early diagnosis. They're not getting access to medical and educational services. They're not getting access to providers who know how to teach and serve kids with CVI. And it's completely unacceptable as the leading cause of visual impairment in the developed world. And as Dr. Hoyt said, it's an epidemic, and we need to start treating it as such.

So the parents have really turned to each other to guide and to help. And we're very fortunate that I was able to move my family to a place-- into a school system that can support Henry the way he needs to be supported. But so many families are just fighting massive battles just for people to see their kids for who they are and to serve them appropriately. And I can't imagine-- I mean, we can all imagine the stress and trauma that happens. And it's just-- it doesn't need to be that way.

And power in numbers too.

Power in numbers. And thank you to Perkins for trying to move forward in trying to get CVI-- trying to get the system where it needs to be to serve our kids.

Lots of recognition for it or awareness. Lots of awareness for them.

Yes, exactly.

So in regards to the Facebook groups and your support groups, so what advice would you give new parents who just had their child diagnosed with CVI or has symptoms of CVI but has not had a diagnosis yet?

Yeah, go and learn. At the, we have a website on, did you just get diagnosed, or you're trying to figure out what's happening with your kid's vision. Reading Dr. Roman's book, Dr. Dutton's work, going to the CVI hub at Perkins-- there's so much information.

That's what I'm grateful for. We do have a lot of information on CVI. We definitely need more research. And we need to know more. And we need more research. But we already have a lot of literature information. Thank you, Dr. Roman and Dr. Dutton, and all the wonderful leaders in the field.

So educate yourself. And then try to find a medical provider that can support you. Reach out to parents. Parents often know which ophthalmologists or neuro-ophthalmologists are good to work with in a certain area. Some areas have better medical services than others when it comes to CVI.

But really trust your gut if you're not getting answers to what you're seeing at home, right? That's something that I wish I did. You know, I really wish I trusted my gut after going to the same pediatric ophthalmologist over and over again. I'm telling her that I'm seeing these behaviors, and her saying, he just has serious attention needs.

And I go, OK. Why did I believe her? Why did I believe her when I was seeing someone, I knew my child better? So really trust your gut, and continue to seek out providers who will be able to give you the answers that will help make sense of your child. And then seek out a Perkins-Roman CVI Range-endorsed provider just to be able to start understanding their child's functional vision, right?

The CVI Range is an educational tool that is used to assess how your child uses their vision and the 10 characteristics. And from there, that will hopefully give you a better understanding of the goals to-- the goals for your child and how to adapt materials and adapt the environment and make it so you can make their world accessible.

If the school is not able to adapt or-- at least you're getting something at home until you can convince the school otherwise.

Yeah. Why do we have to do that? Why do we have to give in schools? You know, parents are the experts on the child. Whether they know about CVI or not, it's up to the providers to ask the right questions, to mine the parent's expertise to start figuring out the child. But yes, but unfortunately, parents have to do that. They have to get advocates. They have to get lawyers for the school teams to start seeing their child's CVI.

And I say, if you don't know CVI, you don't know my son. And it's very different from other special needs communities. Like, see my child beyond their diagnosis. But in order to understand my child's unique behaviors and the way my child compensates, you really to understand CVI. You know, of course he's so much more than CVI. He's an amazing, vibrant, wild child who loves buses and dancing and riding trains and doing the laundry. We do two loads of laundry a day. I've never been so on top of my laundry.

That's nice.

Think about it. It's such a multisensory experience, right? He's always loved laundry and unloading and loading the dishwasher. He's my little domestic diva. So as we continue to learn more about how to adapt and accommodate for Henry's CVI, we began to put those adaptations in place at home.

And so I started with eating. For Henry, eating and mealtime is really hard. And I've talked to other parents about this too. Eating is really hard for kids with CVI. There's so much complexity and visual motor demands.

So I started with a black trifold, got these great black silicone placemats to put on the table, and I found a yellow plate. So reducing complexity and using color as an anchor to get him to attend visually. He was able to eat for just a little longer and get more food, get more nutrition, which is always helpful for our kids.

And I was also-- when I put the plate in front of him, I would describe what's on the plate, the salient features of the food, because I'm sure there are many times where he has no idea what's on the plate in front of him. Maybe the food is too close together, or he's never seen that food object before. And so I'm sure he puts food in his mouth, not knowing what it is. And that could completely deter him from the eating process.

So getting eating under control and seeing how those adaptations really help him be calm and eat a little longer was really helpful. And it started to make you realize like, oh, this is really what's going on with him. CVI is one of his primary disabilities. And so from there, I really wanted to start incorporating vision in a meaningful way, right? With kids with CVI, it's not about 30 minutes of vision time. It's really incorporating vision across the day.

So Henry is a Phase II on the CVI Range scale. And from his report, I have lots of rich information of where he is functionally with his vision and how he uses his vision in his unique way. And so, for example, during brushing teeth time, I have a yellow or orange toothbrush. Now he can attend to other colors-- vibrant pink, orange, green, along with yellow.

It's usually in the same cup. So I have him find the toothbrush, turn on the water, put the toothbrush head under the water-- and I haven't yet seen him get the toothbrush head under the water, the flow of water. And those moments just are mind boggling to me. I'm like, wow. How does he get through the day, you know? But it really-- you just-- you learn so much more when you watch our kids.

And I have him find the toothpaste and then help him put the toothpaste on. And so all of this, and all the while, describing salient features of the objects. Walking him through the process, continuing to be that radio parent, describing everything around him. Describing what he hears, what he smells, other people's emotions. But also knowing when to stop talking and when to allow him to use his vision in a reduced complexity environment with little noise and other competing sensory complexities.

What else? So laundry is a super motivating activity, right? So I really get him to use his vision a whole lot. We have this black laundry bin with yellow duct tape around the rim. And I have him go and get the dirty laundry off the floor in his room. He has a lower visual field deficit, so this is not an easy task. But he does it because he's motivated.

We bring the laundry basket downstairs. We then go to find the washer. And there, he opens the top of the washer, and we go through the sequence of events. I'm like, OK, Henry, what's first? And he says we need to put the soap in. And so I have him find the soap container. And he gets it. And it has a bright green top, which is great.

And so I also have him unscrew the top. And he's not able to look and do that fine motor task of unscrewing yet. But so again, it's one of those fascinating moments to see how he has his compensatory skills along with his unique vision. And then I put the soap in, and he dumps the soap into the washer.

And then he reaches out and gets the clothes. And I also, while he does that, I take out a sock or a shirt or two and put it on the floor around the room. So I'm like, Henry, there's some clothes that didn't make it in. Let's go find them. And he just thinks this is part of the process. This isn't just this vision time. And it's, again, helping him use his vision first, right? Vision precedes action to complete a task.

And so that's just an example of how we incorporate vision meaningfully. You know, we're potty training right now. And sometimes, we put a bright pink bowl in the toilet seat, in the toilet, to get him to look down and aim. We also have this light that we found.

But when it comes to his treat, his M&M, I don't just give it to him. I put it on the counter in an array of five or six, so you know it's really motivating. He wants to find that M&M. So let's get him to challenge his visual processing abilities.

And I think all of that will get him to build his functional vision, to use his vision in a meaningful way so he can become more and more independent, right? It's all about independence with our kids.

Have you tried marking things with his favorite color? Or is that too early for him?

Oh, yes. I should have mentioned that. So, absolutely. Going back to the washer and dryer, the on button are both in bright pink duct tape so he can find it. And all those dials are a real complexity of arrays. So he often has a hard time. But I just give him time for him to reach for it and find it.

Yeah, color is really a relative strength for children with CVI, and try to use it really meaningfully. Our entire house isn't yellow, but they're very distinct points where I want him to be able to visually attend to a target.

So on the dishwasher also, we have a bright orange piece of tape on the start button as well. For our stairs, we have some pretty steep stairs in our new place. So I make sure to put yellow tape where I want him to hold on to the railing just to make sure he continues to have that support.

So he has more than one preferred color? Sounds like it's a couple.

So, yellow is his-- it definitely has been his preferred color early on. He always loved these small yellow buses. That was his first toy that he loved. And I never knew why, and now I know. But as he's moving up the CVI Range scale and being able to incorporate functional vision, he's able to attend to some more vibrant colors-- so pink, green, orange. And also, I try to really think of-- but sometimes, yellow doesn't pop against a white background, but pink or green does. So you just try to play around with it.

You have a colorful house. I'm envisioning your house. Very happy.

Yeah. It's really-- if you think about it, it's really not that much. I haven't put anything up on the walls yet, which is probably really good for Henry. And it's also forced me to become a much cleaner person, right? We can't leave things strewn about on the floor because of his lower visual field. And I can tell he's much more irritable and upset when we haven't picked up, you know? So it's just fascinating to watch our kids.

Very creative.

Yes. You have to be very creative.

And he looks at laundry as a game, really, right?

Exactly. What's motivating, and it's a whole process, a whole sequence. And so we're really able to use language like first, then, finally to help him stay organized and to learn sequencing of an event, which then he can apply to sequencing of a story that he reads. So trying to figure out all of these concepts that we can learn with something that's highly motivating that he can apply to something that's more challenging, right?

And he's a kid who doesn't like tabletop activities. He constantly needs to be moving. And a lot of kids with CVI need to move in order to see better. And I believe he's one of those kids. We go to a new place or to a playground, and he'll just run around the periphery for a while, I'm sure just trying to figure out what's going on and where things are. So if I can incorporate gross motor with vision, it's very motivating.

And he's also a kid who his tactile sensory system is still very strong, and I think his primary mode of gaining information to the world because his CVI diagnosis came pretty late. We missed that critical period of visual development. I'm sure that part of his visual cortex was recruited to process sensory and auditory because he has really good hearing. His tactile skills are amazing.

And so I tried to pair 3D with 2D. The jump to 2D is hard with kids with CVI. And so going back to the laundry example, sometimes I'll come and bring the iPad down. And I'll have a reduced-complexity image of the soap container, the exact same soap container, on a black background in a Google Slide and just put it up. And I'll say, Henry, find this.

And so he'll find the soap container. And then he'll be touching it and feeling it. And I'll say, find the cap on the soap container. And then I'll switch to a photo where the cap of the soap container is highlighted in yellow. I'll say find the cap on the picture. And so just trying to bridge that 2D to 3D-- it's a long process. But knowing that, for him, he needs some sensory balance, right? He can't be using his vision all the time or else meltdown mode. So how can we balance the tactile skills that he has with his bridge to building vision?

Wow, smart.

Thanks. I've learned a lot from so many other people, believe me. And his current TVI has taught me a lot about sensory balance. So I'm grateful for her.

That's good though. I'm glad you're incorporating things at home too, because that certainly is helping him.

Yes, yes. And it's just to give those examples of how it doesn't have to be this whole new thing in your world. And when it comes to CVI, just thinking about how you can incorporate what you already do, and how you can become a radio parent, describe what you see, what you hear, and how you can just start getting your kids to think about what they're seeing to help them interpret, compare it, compare something new to what they already know, and just getting them to-- it's both vision and cognition with our kids, right? So how to help them work through that every day.

Now it's something that I've been trying to work through because I want to be all of his therapists at once because I have this huge sense of urgency. And the past few months, I've really tried to take a step back and figure out how can I mainly be his mom but then incorporate his vision use through our daily tasks, right? so he's happy and he stays motivated, and so when he does go to school, he's able to give all of his energy there.

Because it's so incredibly exhausting for him to use his vision, right? It's such an underconnectivity in his visual pathways. And so when he uses his vision, we have to make sure that all the adaptations are in place based on the 10 characteristics. Reduce complexity, reduce noise so he's able to not be visually fatigued. Because when he gets visually fatigued, we go into the meltdown zone. And his meltdowns are pretty epic. And it can lead to days and days of dysregulation.

And when he gets dysregulated, this negative feedback loop started, he doesn't sleep well. And so when he's more tired, it's hard for him just to process the world in general. And then he has more aggressive, disruptive behavior. So it's hard.

It's a circle. It's like a vicious circle.

Yeah, it is. And it's exhausting. But I can imagine how frightening it is for him when he's in that state. So it's really important that both families and providers create a visually accessible day. And this is my shout-out to Matt Tietjen, who is probably one of my most favorite people in the whole entire world. He is a TVI. And he did a podcast here, right?

He did.

On what's the complexity framework. And I took his online course, which was completely life changing for me because it helped me really understand the impact of complexity and how huge it is. And how all the other characteristics really revolve around complexity and understanding how the brain has such a hard time taking in all the fragments of information in a visual world and processing it.

And so, really, that's thinking about-- I always wonder what Henry sees. You know, what is it like for him? Lately, I'm just thinking maybe it's just fragments. And sometimes he can make sense of those fragments, and sometimes he can't. But imagine how maddening it is. Incredibly maddening. And so, where was I going? Matt Tietjen, complexity-- oh, we're in a visually accessible day.

And I try to do that at home on the weekends, like making sure-- you know, maybe there's one big activity where we go out. And we go maybe to a new place with a lot of people. And then after that, it's a very familiar time. We come home. We have lunch. We do laundry-- something that's very familiar and calming for him before we go out and try to do something that might be a little more complex.

And that's really helped me plan his day and help him stay regulated. And it's also helped me talk to his teachers and providers about what it's like to serve him throughout the day and why you might see what seems like an outburst-- him starting to scream and kick-- come out of nowhere.

But let's think about what's been happening for the past two hours of his day. Was it one high-level task that had a lot of complexity? Was he in a noisy classroom for a long time? Were you asking him to do something beyond his visual processing abilities that really completely fatigued him? This is all Matt Tietjen, by the way. He is brilliant. And I'm so grateful that his brain is here in the CVI field. So thank you, Matt.

His class is-- I put together his class for the--


And it's amazing. I was so excited building that class because I don't know a whole lot. I'm not a teacher. And I could understand it, you know? So arming yourself with all that knowledge I'm sure has helped Henry out and his school system too, because you know exactly what to say this is what he needs.

Yeah, I'm able to be a better advocate for him. And that's what you are as a parent. You're constantly the number one advocate for your child with CVI. So many kids with CVI have these 10 characteristics that Dr. Roman has identified. But they also have their unique way of compensating for their vision.

And so a lot of times, you'll see so many commonalities with kids the CVI. You know, with parents, we often talk about, oh, my kid does that. He toe touches when it changes in surface. Or he also has this response to complexity, or when somebody walks into the room.

And these are kids with a whole range of diverse needs. Kids who are not ambulatory, non-verbal, to kids who walk and talk. We see a lot of patterns, common patterns with our kids. But we also see that these characteristics manifest uniquely. And so we really have to understand every kid's unique vision and every kid as an individual, but using the 10 characteristics as the framework to figure out how to adapt and modify and make the world accessible.

So you kind of covered this a little bit, but looking back at your journey, what would you have done differently? And what are you most proud of that you did?

Hm, that's a good question. You know, I was thinking about this question a lot. What would I have done differently? And I try not to live with regrets. But it's kind of a natural thing as humans.

Yeah, of course.

And like I said earlier, I think I would have trusted my gut a little more. But it's hard to know where to turn as a parent when you're not inside the medical world. Even as an educator myself, it's still hard to figure out what he actually needs in the classroom, what he needs at school to be successful.

And I think just keep trying to figure your child out, even if you can't find anybody who'll give you answers that you need. Just keep asking questions. Just keep going. What else would I have done differently? I think I would have forgiven myself earlier. It's taken me a long time to forgive myself for not figuring out Henry.

I think moms are like though, right?

Yeah, we are. We're so-- I mean, our hearts 10 feet away from us when you have kids. You're like, come on back. Come on.

And hindsight's 20/20.


You know, I just would also-- I think every experience is a learning experience. And so I've learned so much from what we've missed. I've learned so much. And I'm grateful for where we are. I'm grateful for the parents who were with me who are really my sisters right now. So just to help go through all of this pain.

And what am I most proud of?


Yeah. What I'm most proud of-- I'm really proud of, first of all, being able to be a witness to Henry's progress. We had a speech therapist a long time ago. When we were really down, we weren't sure what Henry was going to do ever, you know? You just have no idea. And she said, no. You have high expectations, and he's going to meet them. And you just keep going.

And that just totally changed my perspective. You never know, one moment can change everything, right? And so he's met all these expectations. He's always progressed forward. He's such a big talker now. And he continues to amaze me. And just seeing him notice things now in the environment as we're-- we were just walking down a street. And He's like, oh look, there's a bicycle. I'm like, what? You saw that? I'm like, freaking out. And he's like, OK, calm down.

All right, Mom.

All right. But just seeing how his vision is improving and knowing that his vision improves when he's more motivated and more happy and more connected to what he's doing. So I'm really proud of him.

But I'm also really proud of what I've done collaboratively with other CVI parents and other CVI providers. I'm really proud of being able to advocate for CVI on a national level. I'm really proud of what me and two other parents, along with a web designer, created with That was such a wonderful project. I love design and web design, so being able to put that into that project.

And the CVI Symposium, which was in July-- being able to speak there was an incredible life moment. And what I said was the result of what I've learned from so many people. So I hope those represent-- I hope parents out there realize that they heard their voice in there as well. And I'm looking forward to what's happening next.

So how is Henry today? And what's his future look like? Or is that hard to--

You know, that's what keeps us up at night. Like, what does his future look like? Because it's really day by day, week by week, you know? Where will he be in 10 years? Will he graduate high school? I hope so. Will he go to college? I hope so. He loves riding buses. I don't know if he'll ever be able to drive one.


I don't think so. No, he won't, definitely. But will he be able to live on his own? Will he find what truly makes him happy? Maybe he can run his own laundromat. That'd be amazing.

No, I think it's really hard, as parents, to predict the future. And I think that's what's most unsettling. You know, when you have what's, so-called, a neurotypical child, you know, like, OK. They'll be OK. They'll go through school. They'll do this. They'll be able to make their own choices in life, whatever they need to do.

But with our kids, it's the long haul. We're with them for their entire life. And we'll see. But I'm just always going to have hope and love and know that if I continue just to send him my love in life, that it'll work out.

I think if you look back at how far you've come, and I know you have that in the back of your head, like, you should have done something sooner. But look at how he is now. And yes, a lot of that is from him, but it's from you too.

Yeah, thank you.

Because he wouldn't be there if you hadn't done what you did.

Yeah. And I have to give a shout-out to my husband for putting up with my long nights of making materials and researching and doing all those advocacy work. Thank you, Carson. But he's also been a really wonderful partner. I know you need support.

You know the cliche, it takes a village. But it really does. You can't do this on your own. And I realized that I can't do this on my own, or else I'm not going to be able to be there for Henry, you know? I have to find resiliency. I have to find sustainability. I have to be OK with days of just being his mom and cuddling him and not worrying about--

Enjoying life.

Yeah. And you know what? He actually gains the most from those moments. So we need more of those. But Henry-- he's doing great today. We started using the white cane about six months or so. And he's taken to it really fast. And that just shows it's what he needs, right? A lot of-- you know, for kids with CVI, if they take to something new really fast, then you realize it's something that's really helpful for them. So yeah, so he's been amazing with that.

And he gets stronger. He just started aquatic therapy, which is amazing. He is so focused. 45 minutes, and he does everything that the therapist tells him to. The water is an amazing thing.

So if you're walking and just regular movement?

It's aquatic PT. And so they do all kinds of wild exercises. They put leg weights on him. He's in flippers. They have him roll around. They have all these tools to build his core and his coordination. But he really listens. And he's able to coordinate, and he uses his vision. So the water's been really wonderful support for him. I think there's research done that, when you're submerged to a certain level, it increases flow of cerebral spinal fluid.

Really? Interesting.

Check that. I don't know if-- I may be making that up. But I'd look it, but it's working for my kid. And so I'm really grateful that we're finding tasks and activities and therapies that work for him. Because it can be really easy to be like, OK, we got to do school, OT, PT, speech, vision, and then private.

And I've come to a place where I'm doing something that's going to be sustainable for my family, and that's not going to wear him out. And it's not going to cause more meltdowns. So for all the families out there, you do you to make sure that you're happy and sustainable. And just continue to be full of light, because we can do this.

Thank you so much for coming down.

Thank you, Valerie. It's been amazing.

It was really fun.


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