Partners in the Journey_0_0
Training and in-service meetings. They're also especially meaningful to share with families that you work with. The webinar series is just one of the offerings in our professional development program, which includes publications, e-newsletters, webcasts, online and in-person classes, and self-paced study. You can see our entire listings at our website www.perkinelearning.org.
Today's presentation by MaryAnne Roberto and Gunjan Rastogi-Wilson is just one example of the collaborative efforts of educators and families to provide professional development to the field. And I expect the makeup of today's participants reflect that as well. I'm seeing some deafblind resources coming in, people who work in the Early Childhood Education. There's Anita from the Overbrook School. It's nice to see you all here.
Let me just review a couple of things about the technology. We have muted your lines. It helps keep noise levels in control. Shortly, a question and answer space will be provided on your screen. And we encourage you to post your questions as they occur to you during the webinar. We'll address them all at the end during Q&A. And if we do run out of time, I've talked with our presenters about addressing some of those questions offline and will make their answers available on our website.
Today's presentation will make use of several poll questions throughout. If you'd like to participate in the polls, you'll need to stay near your keyboard to respond. And I'll read the choices out as well just to help everybody stay on the same page. We're using this virtual meeting room for audio. So make sure your volume is on and turned up. If you have external speakers or personal headphones, they're going to give you the best audio. Our presenters are sharing one microphone today, so we've been working on making sure that they can be heard clearly. But you may need to adjust your own audio. And sometimes, audio and video are not in sync. This has to do with connectivity, and sometimes it's on your end, on our end, the presenter's end. We just ask you to bear with it. It usually correct itself in a couple of seconds.
I need to acknowledge that today's presentation does use two video clips. And the playback can be sketchy at times. The longer of these two is about five minutes long. It closes the presentation, and it is not audio described. When this presentation and recording are shared on our website, we will provide a descriptive transcript for each of those clips. We found some sound difficulties in our tests, and we determined that this would be the best approach for using these prerecorded clips.
So I just want to make you aware of that. The event is being recorded. It will be available tomorrow on the Perkins website, including the slide presentation that's being shared here today. So thank you. I managed to do that right at the top of the hour.
So let me introduce today's speakers. On your right is MaryAnne Roberto. She's a CTVI, a teacher of the visually impaired. She has earned the Perkins-Roman CVI Range Endorsement. She's a vision consultant with NVisions CVI consulting in Pennsylvania. And on your left, Gunjan Rastogi-Wilson, who is an MS and a nurse practitioner at Tri-County Pediatrics, Elkins Park, Pennsylvania. She is also the mother of three and believes, and I'm quoting you now, Gunjan, "The health of the child is truly determined by the family surrounding him or her." So many thanks to you both for joining us today.
To get us started, let's find out who's here. Can we bring up that first poll question please, Valerie. And we're asking you to describe, which of these choices describes your primary relationship to a child with CVI? And knowing that you may have more than one, would you say you are primarily a parent or grandparent, an education professional, a therapy or service professional, a clinical or medical professional, a paraprofessional, or are you a program administrator? And we'll just let people vote there a little bit. Education professionals are always the largest group, but I'm seeing we have a number of program administrators here as well today and a couple of parents. And about seven therapy or service professionals. So thanks. It always helps to know who's here.
We'll turn the floor back over to you two, and I'll join back in the next time we hit a poll. Welcome to Perkins.
Morning. My name's MaryAnne Roberto. It's an honor to be here this morning, along with my friend, Gunjan Rastogi-Wilson. The presentation this morning is based on the partnership between the teacher of the visually impaired and the family of a child with CVI and the journey that begins with the birth of a baby. Each one of you is also a part of a journey, perhaps many journeys, in partnership with parents, teachers, medical professionals all connected in some way to a child with cortical visual impairment.
When my own journey on the CVI road began more than 25 years ago, I had little knowledge about this mysterious visual impairment. I would go to a family's home basically with empty suitcases. Tucked in the corners of my luggage were compartments of compassion and empathy for the grief this family was experiencing, a great knowledge about ocular visual impairment it was completely useless. And I would leave each home with a heavy heart.
Haunted by my Ineffectiveness, I began to search for information in new research. Each year, the number of children with CVI increased. In 2008, I bought Dr. Roman's book on CVI. I had found a treasure map, and I was ready to finally hit the road. The summer of 2010, I booked the trip of a lifetime to, of all places, Pittsburgh, Pennsylvania. There, I attended a Pennsylvania CVI mentorship program conducted by Dr. Christine Roman-Lantzy. This four week program conducted over the course of two summers, took me hundreds of miles from my home and exactly where I needed to be. I unpacked the bags of information I had about ocular visual impairment and filled new bags with the travel essentials of the CVI guiding principles, characteristics, and then never leave home without it, the CVI Range.
I left Pittsburgh, my bags packed, ready to go. I began to give in-services to local agencies, reached out to the professionals I worked with, and continued to add new information and research to my CVI luggage. I was determined to never again travel in circles as I had done with so many babies in the past, but to drive forward and make a difference.
Gunjan and Jim Rastogi-Wilson have graciously allowed us to share the journey of their son, Krish. I was privileged to partner with Jim and Gunjan as Krish's early intervention vision teacher. Together, as partners, we unpacked the bags of information and research on CVI. We set the GPS, there were bumps along the road, and at times, put the pedal to the metal. We had traffic stops and unexpected detours, but we knew where we were going. And even as the journey continues for Krish, we have certainly enjoyed the ride. The journey begins on April 30, 2012.
I was super excited to be pregnant with twins. I had done fertility treatments with both my pregnancies, so to get two for one was extra special. However, my fertility specialist was a harbinger of things to come. He was not super excited to have me pregnant with twins. I had preeclampsia with my firstborn, and she had been born six weeks early. And we both knew the potential risks of preeclampsia with twins. The truth is that the pregnancy went well until about 22 weeks. One of the babies was not growing as well, and my blood pressures were uncontrolled. So I spent the next four weeks in and out of the hospital, ultimately on bedrest.
I remember the day when the OB and I decided that it was time to deliver the boys. It was a sense of relief. Even though they were going to come out of the womb via c-section at 26 and 1/2 weeks, I felt a sense of peace because I knew that they would be better cared for in a NICU than in my body. What my husband, Jim, who was also an important part of this journey and presentation, remembers most about the birth of the boys, first, is their weight, weighing in at 1 pound 5.8 ounces and 1 pounds 12 ounces. Secondly, the silence after birth. There was no joyous crying of the babies, just the hum, medical equipment, and the frantic scurry of the staff trying to stabilize now three patients in the OR.
I share this piece of the journey with you because at 12:09 AM that day, our lives changed forever. Life as we knew it was over. We were at the start of a long ride, one that we could have never anticipated and, honestly, would never wish for anyone else to have to take.
The NICU stay was 3 and 1/2 months. Rohan, baby A, had a relatively smooth ride through the NICU, while his younger brother, Krish, baby B, met with frequent roadblocks. He had Grade 2 intraventricular hemorrhage, a head ultrasound that was negative for periventricular leukomalacia throughout his NICU stay, H3 retinopathy of prematurity, and periods of hypoxia with prolonged intubation. He took Rohan home at 2 and 1/2 months and realized another factor that created a future of many forks in the road, how to divide our time between three children under three. Oh, yes, did I forget to mention that we had a 2 and 1/2 year old at home? We realized we would be presented with many situations that would require us to choose between the three kids, most often, making the decision that was best for Krish.
Krish came home on oxygen, a pulse ox, and multiple medications and, less than a week later, was hypoxic at home and went back to the hospital. Ultimately, he came home with a diagnoses of severe reflux and BPD and chronic lung disease. Too bad, right? And then finally after four months, we were home as a family, and everyday life, our new normal, began.
I called right away for an evaluation for early intervention, and we started immediately with physical therapy when I first observed the moment. Here I am, at home. We had moved in with my mom. And I noticed that Krish wasn't looking at me. I asked the parents who were listening, do you remember the first moment you realized something wasn't right about your child's vision? In retrospect, it was a pivotal moment. It was a what-went-right moment, too. I, as a parent, noticed something about my child. And my physical therapist listened. She didn't poo-poo me. Physical therapist had recently attended a vision in-service with MaryAnne Roberto on CVI and referred Krish for a vision consult.
Krish was born less than a year after I finished my training. Because he was asleep on my first visit to his home, I had the opportunity to speak to Gunjan about his birth history and her concerns for his vision. Gunjan's answers to my initial question led me ask her the questions on the CVI Range Parent Interview, developed by Dr. Roman. All of Gunjan's answers pointed to the risk of CVI. Krish literally never opened his eyes from our first visit, and I had a plan to begin to conduct to a CVI Range based on the risk factors and his mother's astute information about his visual behaviors.
Over the course of the next few weeks, in between naps, I was able to complete a CVI Range Assessment. Krish score a 1.75 on rating one and a 1.5 on rating two. Under the CVI Guiding Principle of Precision, you were able to determine this precision, how the CVI characteristics were affecting Krish's vision, and we were ready to begin. Krish did not have an official diagnosis at this point. We had no time to waste. Gunjan and Jim were understandably overwhelmed by yet another possible diagnosis for their son. But they were so motivated to help him, they agreed to begin the interventions.
The stages of grief are completely relevant when your child is diagnosed with a disease or problem, especially when you can't picture your child's future potential. We all have dreams for our children. When those dreams are called into question, it is a difficult process to retrain your brain to think in a different way, one that encourages your child to their fullest potential but now on a day-by-day basis. Even though the destination
Why me? I'm going to share my personal feelings on this, ones that I still struggle with today. When my boys were born, I wasn't scared to take care of them. I knew what it meant to be a parent to a micro preemie. You see, I had years of experience as a NICU and PICU nurse. I had trained as a nurse practitioner. I was fully capable of taking care of my children. I knew how to handle Krish's constant reflux or the unique way in which you feed preemies. I could hold a 3 pound baby without flinching to give them a bath in the sink. In fact, I told myself, this must have been fate, maybe God's plan. I told myself that I must have been chosen for this special journey, to be responsible for the care of these little ones. I had to rationalize that this was now my life.
Then came the guilt. Maybe I should have never done fertility treatments. Maybe I was only meant to have one child. Guilt because I can't ever fix my child's vision. Guilt that my other children get less attention. Guilt that I don't work full-time to support my family. Guilt, guilt, guilt. Every parent of a child with special needs has these types of thoughts.
Then came denial. How does this vision teacher know that he has CVI? She's not a doctor. He's a preemie. He'll catch up. I was hearing from all the care team that they had difficulty assessing his vision. So how could MaryAnne tell that he had CVI? How could we add yet another diagnosis on top of his long list of diagnoses? Here we are, simultaneously trying to care for preemies, sleep-deprived, and you want me to spend time throughout the day to stimulate his vision? I'm just trying to keep the kid alive.
Four and 1/2 years ago, when we were first given the information about CVI and Krish's potential diagnosis, there wasn't too much information on the internet, not too many resources. And honestly, how is it possible that I never heard of this? I had been working in pediatrics for years and had never met a child with this diagnosis, although I see now that there were probably many kids and that they were undiagnosed.
Let me tell you that besides not looking at me, Krish at about 6 to 7 months old was not rolling. He would lie like a lump on a log. Yeah, I can say that about my kid. I would swipe my hand in front of his eyes, and he had zero response. No blink reflex, no knowledge. His twin, meanwhile, was rolling, smiling, cooing. It was crushing to my soul to see them living in such different worlds.
When you have three under three, family support is paramount. However, we also struggled with our families to accept the diagnosis. Having a special needs child changes the dynamic in a family. We had to learn to cope as a family. Two lessons I learned from this time, having friends and family and therapists say that everything would be OK was not helpful. Because when you learn your child will most likely never see normally, it's not OK. It's hard. Secondly, not many people will understand your personal journey. I had a relative who compared Krish's visual impairment to her child's scoliosis. No, not the same thing. I had to grow a thicker skin and change my attitude.
Then came acceptance because the interventions were working. Christmas lights, tinfoil, clearance Valentine's Day decorations. Life became therapy, eating, napping, scheduling on a constant repeat. Once you realize that the interventions are working, you want to do them all the time, except that the child has limits, whether they're sleepy, hungry, sick. Typically, Krish's eyes were a blank void. He would go "googly-eyed", as I scientifically termed it, all the time. And I knew he wasn't seeing anything. After we started with the lights and shiny toys, my little lump Krishsy is turning his head, He was having moments when I saw his eyes have awareness.
Once we had a Range score, I knew where to begin to help Krish make progress with his vision. However, a home is not a clinic or a classroom. And a family is not a controlled working curve So the principles of intentionality and reciprocity took on a whole new meaning in Krish's home. The best intentions of a plan or session, they need to be set aside when a baby is sick. [AUDIO OUT] I needed to teach Jim and Gunjan about CVI and how it was affecting Krish's vision. [AUDIO OUT] Each week brought challenges and at the same time both for Krish, for Gunjan and Jim as well. I knew what I knew [AUDIO OUT] that allows me and use every opportunity [AUDIO OUT]
MaryAnne, we're having a really hard time. We're getting a lot of static when you're on the microphone. If you could help us out. The captioning is doing well, but we cut out a lot of what you just said. But we're hoping that it got recorded. Thanks everybody for checking in.
Slowly, intentionally, CVI characteristics were introduced and taught to Jim and Gunjan through real experiences with Krish. For example, when we presented Krish a shiny pie pan with red metallic beads, and for the first time, he showed visual interest, they were hooked. Suddenly, the characteristics of color, movement, and preferred visual field had meaning. Week after week, I watched, not only Krish's cues, but the family's as well, to determine if the methods were working for them. I needed to pay attention to their cues to see if there was too much information given or if more time was Rohan. In order to meet the family where they are, it was important to pay attention to the family as a whole, respect their need for downtime, and to acknowledge the needs of Krish's siblings during our session.
Thanks, MaryAnne, that was much better. I appreciate that. We had another poll. When we first asked at the top whether we had any clinical or medical professionals on the call, at that time, we didn't have any. But we'd like to check in again. If you are a clinician or a medical person, how confident do you feel right now about giving a CVI diagnosis? Would you describe your confidence as highly confident, somewhat confident, not very confident, or not at all confident? So we'd like to hear from some of the medical. So we're seeing some pretty low confidence levels there. And I can tell by your nods and smiles, MaryAnne and Gunjan, that that sort of aligns with what your experiences. I've got one person saying they feel confident. So I think they're not alone there. Thanks, Valerie.
Once we saw that the interventions were working, we knew that we needed a medical diagnosis to assure that Krish would have full access to all the resources he needed and to validate that the interventions we were doing with Krish were working. We had no problem getting services in EI. They did not require a diagnosis for services in our county-- again, a smooth stretch in the road. However, we did not anticipate the roadblocks to getting a diagnosis. This is where the potholes come in. We saw an optometrist at a low vision clinic, and I thought, surely, this doctor is going to give us the diagnosis.
After I saw her use the Teller Acuity Cards, which have a nice movement to them when you are showing them, I realized she was not necessarily experienced in evaluations for CVI, because, of course, he liked looking at the quick movement of those cards. We went to the neuro-opthamologist at one of the best children's hospitals in the country, who agreed it could be CVI, but admitted that he was not well-versed in CVI, and said he primarily deals with brain tumor cells. So CVI really wasn't his sort of thing.
Onto the next stop. The developmental pediatrician diagnosed Krish with global developmental delay and thought that what I perceived as a vision issue was most likely delayed visual maturation-- sound familiar-- which would eventually resolve. She said that she had only seen very multiply impaired kids with CVI, so she didn't believe that Krish could have CVI.
Visits to the developmental peds were so painful for me. We talked about all the things Krish couldn't do in his developmental exam, but I knew he could do some of the tests. But they had not been adapted with CVI techniques. He was behind on his milestones, not talking, he had low muscle tone, and it was plain depressing to go to those appointments.
They attributed his delayed milestones to him being a preemie, but I knew it was more than that. He didn't roll over until after 12 months. He sat up at 18 months. He walked at 22 months. She was a great pediatrician for his medical issues, but didn't understand CVI as it presents today.
We'd followed with the ophthalmologist for ROP since birth and from the NICU. And I'm excited to say it was she who actually listened to me. She was very receptive to the CVI information that Marianne and I shared with her. She was happy to give us the documentation to support Krish's diagnosis.
The appointments that I had previously mentioned occurred over a span of seven months. We had to work hard to get this diagnosis, and were educated in how to navigate the health care system. And we had Marianne. And not having a formal diagnosis did not stop us from continuing to do CVI-based visual interventions all this time.
But imagine the other families who go through this process-- those without a medical education. How can anyone expect them to persist through multiple care providers over multiple visits to get this diagnosis? We are fortunate to live in the same state as Dr. Roman.
We made the trip to Pediatric VIEW Program for the first time when Krish was about 15 months old. I remember being so nervous to meet Dr. Roman and Dr. Lantzy, but it was such a relief to finally talk to care providers who did not challenge this strange group of visual symptoms that I had observed in Krish.
Krish transitioned from phase one to phase two within the first two years of his life. Actually, I remember when we went to Pittsburgh after Krish's second birthday as a follow up at the Pediatric VIEW, and Dr. Roman asked me why I had brought Krish to the clinic at all. On first glance, she couldn't see his CVI attributes.
And she didn't realize that in one year, he had gone from phase one to phase two, and that this was the same child she'd seen the previous year. After observing Krish, she apologized profusely about asking us why we were there. You see, that's the thing. That's always been the thing about Krish.
As he got older, you could see the obvious lack of muscle tone, the lack of speech, quick fatigue, the fact that he couldn't keep up with his peers. But you really couldn't see that he couldn't see-- that is, until you evaluated him properly. He was so good at accommodating, so good at memorizing, so good at looking you in the eyes, that you didn't always see his alternating eso- and exotropia, or his eyes drift to the lights, or his delayed visual response, or the way he could shake his head when he looked at something novel.
After our second meeting at Pediatric VIEW, phase two and the second and third year of Krish's life are a blur of therapies. PT, OT, feeding, vision, orientations and mobility, speech. He did better at all therapies when we used vision and CVI techniques as a guide.
In phase one, we had a light box and red and gold shiny materials. It was easy to find the materials at the dollar store. The biggest issue in phase one was that Krish physically did not have stamina or musculature to support his head and his body. And his sessions were influenced by the severity of his reflux, his failure to thrive-- since he had no reserve in his body-- and his constant state of sleeping.
So while I had his twin crawling around at 12 months, Krish was still trying to roll over. We got him to do it by using aluminum foil, Christmas lights, flashlights, Elmo, the same set of metallic beads that we initially used to motivate him. But now we use those same items to get him to move his body through space.
We used to work so hard to get him to smile. He would laugh at times when we said silly things or made silly noises. But as soon as we stopped, his face would go blank. I don't know if you've ever seen a child with CVI do this, but it is absolutely heartbreaking to see your child with a blank look on their face and not be able to take in the world around them.
We got the typical comments from people when we went out because you always get stopped when you have twins. People would comment about how he must be tired because he didn't respond to their exaggerated smiley faces. But I knew it was because he couldn't see them. As he got older, I would purposely hide or change aisles in a grocery store-- I know it sounds mean-- just to see if he could find me or recognize me. And he couldn't at first.
But then he would remember what color shirt I was wearing. So we were recently at Disney World, and he grabbed the hand of another woman with the same colored shirt and realized it wasn't me when she started talking. The look of fear on his face was so sad. The trick he had always used to find me-- the accommodation, the color of my shirt-- didn't work.
The first time Jim and I went to the Pediatric Critical Visual Impairment Society Conference two years ago, when we returned, we went to pick up the kids at their grandparents' home. Krish was being held by his mom mom. He was about three years old, and he was held in his grandmother's arms.
I walked towards him, and he didn't recognize me. He didn't look at my face. He didn't reach out for me as young kids do. I still remember that moment when my own child didn't recognize me. Because here I was in a place he did not expect me, in a place that he had not see me for the past four days, and he was tired from following a different routine than typical.
As Gunjan said, Krish moved quickly from phase one, where the environment needed to be strictly controlled. Jim and Gunjan had arranged an area in their living room where they kept the curtains closed from the sun. And often, Gunjan's mom or Jim would have the other two kids so that we could work quietly with light box-- with the light box and flashlights.
I encouraged them to play with Krish at night, perhaps when the other kids went to bed and the rooms were naturally darker. Each week I would arrive, the box of toys for Krish would grow. And when I say toys, picture a box of slinky's mylar wrapping paper, red objects, pie pans, lighted balls, et cetera.
Gunjan and Jim learned quickly that Krish responded well to red, shiny, and lighted objects. They worked diligently with him in phase one to build his visual skills. And build them he did.
Soon, we were able to watch Krish respond visually in less controlled environments and to more varied materials. Phase two had arrived. The goal in phase two is for the child to use vision for function. A little one's function is all about movement, turning, reaching, crawling, climbing. All of these skills were difficult for Krish because his visual access was impaired, and his physical state of low muscle tone was also a contributing factor.
Once he began to consistently respond visually, we took those same slinky's, beads, pie pans, we connected them to movement activities like rolling, reaching, and crawling. Collaboration with Krish's team was an essential piece in his progress. During collaboration sessions, the motor therapist would often ask me, what do you want him to do? And I would shake my head and counter, no. What do you want him to do?
I already knew that I wanted Krish to use his vision for function in the motor challenge ahead Krish had already shown us that he was responsive to visual information and that his responses were predictable and meaningful. Perhaps the PT was working on rolling from his back to his belly, which was quite a difficult thing for Krish.
So even though Krish was in early phase two and he was responding in less controlled environments, I knew that this motor task would make Krish slide back on the range into phase one. So we turned the lights down, darkened the windows, and used the familiar preferred toys with lighted components.
Lo and behold, with time built in for latency, continuous responses to Krish's cues, he began to turn over. We built the same routines into crawling, and eventually walking, climbing, jumping, and every other motor activity.
Krish was fortunate to have strong members of his EI team who were all willing to learn about his vision and implement CVI strategies into their own sessions. This education, collaboration, and willingness to learn new strategies allowed Krish to have visual access to his world throughout his functional routines.
As Krish neared phase three, we began to search out information on phase three strategies to attempt to keep up with Krish's increased skills. He was the first of all of my "babies" to near phase three. So I had homework to do.
Conferences in Maryland, Pediatric Cortical Visual Impairment Conference in Omaha, symposiums in Washington were the classrooms where we learned the latest ideas and strategies. Facebook groups and resources available through the internet fueled us with new ideas to plan for Krish's needs. We began to concentrate heavily on salient features and comparative language.
Gunjan and Jim learned a new way to help Krish make sense of the objects he saw. They would say to him, Krish, here's your cup. Your cup has a closed top and a straw, and it has a picture of Mickey Mouse on it. Remember, Mickey Mouse has two round ears on the top of his head and big yellow shoes.
As Krish began to learn comparative language, they would add something like, Rohan's cup is a lot like yours, except he has a picture of Pluto, the yellow dog. This use of salient feature language is awkward. And when I explained it to them, both Gunjan and Jim were understandably skeptical. It's hard and tedious, especially when you have busy days with three children.
But week after week. I coached them, and encouraged them, and watched and master the salient feature language that helped Krish to move solidly into phase three. Krish himself showed us the proof of the value of practicing salient feature language one day, close to his birthday, when he and I were sorting animal figures.
He correctly identified a giraffe for me, and I showed him a cheetah figure that had colors very similar to the giraffe. "What is this," I asked him. Krish held the cheetah figure in his hand and looked at it for a minute or two. This is a giraffe, he said. I was silent and waited. He began to talk it through out loud.
"I think it's a giraffe. It looks like a giraffe. It's brown like a giraffe." At that point, I took the giraffe from the table and showed it to Krish. "Let's look at the giraffe. The giraffe has a long neck and four long legs. It has spots on its body. Let's look at that other animal."
With the two animals side by side, I pointed out that the second animal had spots that were a lot like the giraffe's spots, but that the second animal had a shorter body and a small neck. Krish thought for a minute and shook his head. "That's not a giraffe. It doesn't have a long neck," he said.
That was a moment I will forever treasure, and I pack it snugly into my experience with children with CVI. Through his language, Krish helped me to understand the real challenges our kids face with such a simple play activity. Krish was highly motivated by what his siblings were doing.
While he loved to talk about the shows they were watching, he couldn't see them. We were able to use an iPad to help Krish to watch the shows [AUDIO OUT] stopping the movement, talk about the characters, teach him the salient features of the characters, and build meaning into a motivational activity.
One of my most exciting moments in Krish's development was when he learned to watch TV-- that's right, watch TV. As a mom of three young kids, I depended on the TV at times to watch-- to keep the kids busy so I could get stuff done, as many parents do. He finally started watching Mickey Mouse Clubhouse around age 2 and 1/2.
At first, it was the bright colors and upbeat music that caught his attention. Then it was watching the same episode multiple times. It was amazing. As Krish went in to phase three, we found success with the iPad. We began using the iPad in phase one. But by phase three, we could motivate him to use his vision longer for a-- vision for a longer period of time.
He was very motivated by seeing characters from TV shows and pictures of his family and friends that were familiar to him. So we also used a black felt board. We put black and white pictures of Paw Patrol characters on it. He's so familiar with the salient features of these characters that we could use them for secondary purposes so that he would have to follow directions like, "Show me one like--" or, "How are these two pictures the same?"
The truth is that he has demonstrated good visual memory, which has helped him to do well with the novelty characteristic. Once we teach him the salient features of a picture, he can almost always recall it when used for a different activity.
We'd started with literacy activities very early, relative to other preschools because he is motivated by words and letters. We would take Paw Patrol Valentine cards and write family members' names or characters' names on them. And then he would have to sort them into different mailboxes using categories like long words versus short words, or words with letters that go below the line verses above the the.
When we looked at books with pictures of animals, he would orient himself to the illustration by asking where the eyes of the animals are. Once he could find the eyes, he could often deduce the animal that was in the illustration. However, I would still say that illustrations are very difficult overall.
One of the issues we had in early phase three was that he would learn the lessons so quickly and memorize them that it was difficult to tell when he was actually using his vision or if he had memorized the picture, like the complexity cards.
The iPad is now part of his curriculum. We use apps like TinyTap and Bitsboard to keep up with teaching new pictures, concepts, and literacy. It is actually easier to prep for his learning in phase three than trying to create make-shift [INAUDIBLE] activities like phase one.
In terms of orientation and mobility, Krish started with a pre-need at about 22 months. But he didn't have the physical endurance to use it for long. We started with his rolling tip cane around 2 and 1/2 years old. And he still had difficulty with endurance while holding the cane with his arm. But what was really cool was that immediately when placed in his hands, he knew what to do with it.
It suited him so well because it gave him confidence to navigate. Playgrounds were often a struggle. The shadows that the equipment casts and the way the light shines through the mesh metal material makes depth perception difficult. He will stick his foot out in front of him to tap the space where the shadow is to tell whether there is a step.
When he is going under an opening or an overhang, he will overcompensate by ducking his head really low because he has difficulty with body awareness in space.
Great. Thank you. So at this point in our story, we hear Krish has made some amazing advancements. He's learning a lot of concepts. He's learning how to recognize things. And he's getting ready for school. So let me ask a question of the parents who are on the line today.
If your child has CVI, how satisfied are you with your child's education program specific to her or his CVI? The choices are, again, highly satisfied, somewhat satisfied, satisfied, not very, or not at all. Again, it's an anonymous poll. We're interested in hearing from you about-- at wherever your child is in their program.
So again, we're seeing some pretty less than satisfied responses. A couple of people saying not very, and one not at all. And again, I think this is a familiar term we hear. And so at this point in the story, we're going to talk a little bit about the education plan that's-- was put in place and is being worked with Krish and his family.
And I'd ask you both, again, just try to lean right into that microphone if you can. We're getting-- some of it's the connection. It's sort of fading in and out. So thanks. Thanks, Marianne.
Marianne started preparing me for the dreaded transition to age three to five-- known as the intermediate unit-- where we are. No parent should ever have to fight for an appropriately trained teacher to teach their child. When the team came to my house to evaluate Krish near age three, the vision teacher had not interviewed me or Marianne prior to her coming.
She did not perform a range. She did not actually evaluate the child-- evaluate my child with a valid CVI assessment tool, which I knew to be Dr. Roman's scale. Most members of the evaluating team did not understand how far Krish had come.
They assumed that he had always seen as well as he was seeing at the moment that they evaluated him. They also assumed that the vision teacher present at the eval would lead the evaluation and educate them on CVI. She didn't. So I had to fight for a teacher trained in CVI.
We refused to sign the IEP for months. We hired an advocate who used the language and termed that the teacher or consultant should be a CVI specialist. This was before the Perkins Roman endorsement had been rolled out. I asked for a resume with the teacher's CVI experience but was told that isn't my place to see that information and that all the teachers are certified.
Yes, they're certified as vision teachers who have had very little formal training in CVI. We needed serious roadside assistance for this fight. But we won, and we were able to get a CVI train teacher hired as well as have Dr. Roman as our CVI specialist for a period of time. I encourage every parent and every team member to stay strong in their determination for appropriate services and to create a strong CVI IEP.
Krish had never had formal head imaging since the NICU. As he approached the age of 4, we noticed that he was still behind in his gross and fine motor skills and continued to be delayed in developmental milestones. He couldn't jump or pedal a bike, among other skills. And he should have been caught up age-wise from his history as a preemie.
Amazingly, we had never seen a neurologist, which, in retrospect, doesn't make sense since CVI is a of disorder of the brain. But we went to the neurologist. He diagnosed Krish with hypotonic cerebral palsy. And we also had a brain MRI that came back with a result that reported multiple abnormalities, including PVO.
For a short time, our car ride came to a screeching halt. I mean, we push Krish hard. I mean, we are really tough on him to work hard. And when I realized that he is very successful despite what his brain MRI shows, it made my heart ache for my child who soldiers on every day, struggling to keep up with his brother and sister.
It was another moment of validation and helped provide evidence to the nonbelievers-- to the ones who say he seems normal. As Krish's mom, I know he sees as well as he does because we have six hours of therapy a week that utilize CVI techniques. Because it is a daily part of our lives.
It took me a while, but I visually describe every new place we are going. I try to anticipate what might be difficult for Krish to process. I mentally prepare him for things or people that might be there. For example, Krish hates babies and dogs. He's a very social boy, but forget about it when it comes to babies or dogs.
They're so cute, I tell him. But when he's near a baby, he cannot bring himself to look at the baby. He'll come over to me, stay near me without ever looking at the baby. Some think it's cute and that he's pretending to play shy, and he just wants to stay with his mommy. But I know it's because both babies and dogs are unpredictable. You don't know what they're going to do.
Krish continues to make progress-- from the tiny and quite compromised little baby to a fun-loving and mischievous preschooler. About 2 and 1/2 years from diagnosis, Krish was in phase three. With the progress he has made with his vision, it is sometimes difficult to determine how his vision is affected.
The characteristics of complexity and novelty are ongoing challenges and are addressed on a regular basis by his current teacher and his parents. The principals of CVI continue to be followed throughout his routines at home and in his school. Krish is taught salient features of objects and pictures and is continuing to develop his ability for comparative thought.
He works hard at using his vision every day and continues to have issues with visual fatigue. When I began working with Krish almost five years ago, I was highly aware of the CVI guiding principles of expectation of change. Each step along the way, I expected Krish to change, to improve, and to make progress.
With each and every child we work with, we hope that they achieve their own unique potential, whatever that potential may be. Krish just so happened to exceed even my high expectations for him.
Our struggles in phase three include navigating new spaces that have an element of either too many people or a noisy atmosphere. For example, we were at an engagement party that was both noisy and full of people. And Krish was quick to hold on to his dad's hand, put his head down, and follow without looking, unable to process what was in his environment.
He's quick to fatigue, either when using his vision well, or when sensory-overwhelmed, or when doing a physically taxing activity. Doing 40 minutes of on-task literacy activities on the iPad will result in him lying down for an hour afterwards and spacing out.
He continues to exhibit difficulty with faces. Recently, he told me that, "Sometimes the faces look squabbly," which is one of the first times he has been able to verbalize what he is seeing or not seeing. Krish still has sensory breakdowns, meltdowns, periods when he's either hungry or tired, and therefore doesn't use his vision well. But in general, they're less frequent.
I'm really concerned about how he will do socially as he gets older. How do you make and keep friends when you can't see their faces? I consider our family blessed because he has two very caring siblings who don't seem the least bit fazed by his meltdowns or the need to move a little bit slower pace. Krish is often not aware of what is going on around him unless he is concentrating or directed to pay attention specifically.
So he loves to wear pink. Pink is his favorite color. It's his preferred color. Pink socks, pink Minnie Mouse dress. He is just happy when things are pink. I struggle with keeping Rohan and Krish together for their education. I question whether I'm holding Rohan back from being the best he can be because I spend so much time trying to help Krish be the best he can be.
I'm unsure about how we will utilize technology for literacy and writing, especially since he has a weak grip and tires with physical exertion so quickly. And I struggle with how to adapt materials in a typical classroom. All of the things I'm concerned about for the future are ongoing issues of complexity. We can show the playground video now.
Great. So while Valerie is bringing that up, remember, this video is not audio described. But you will see some of the behaviors that Gunjan had described earlier in her presentation about how he reacts in unfamiliar space. There is some captioning for Krish's speech since it's a little difficult to hear.
Go on this bridge?
Yes.
Go on this bridge?
Yes. Why can't you go with another kid?
But I'm--
It looks like a little kid. Go ahead. You want to try?
But I'm going to wait until that girl's off.
Why can't you go-- Krish, why don't you go with another kid?
Because a big kid might shake it.
It's her turn. Why do you ask?
Walking.
She looks like a little kid. Go ahead. You want to try?
Whoa.
You're doing a good job, Krish. Krish, why don't you-- why don't you ask for a turn, Krish?
On a brighter note, for all that worrying, Krish is a thriving five-year-old with a natural curiosity, a smile that tugs at your heart, he loves to dance and feels the music in his body, which in turn helps him move his face. And he wants to be a singing chef when he grows up.
So I'm proud of him because at the start of this journey, I wasn't sure that he would sing or dance or that he would shape our family in such a way.
We'd like to hear from the educators now-- those of you who are our classroom teachers, TVIs, teachers of the hard of hearing, paraprofessionals. We're presenting a group of-- a selection of items on the screen. I'm going to read through them. We're asking you to pick three.
For the educators, three things that would help you the most in your work with children with CVI right now are-- understanding the basics of CVI, training or practice in the CVI range, some educational strategies and resources, the CVI range endorsement, a network of professionals with CVI experience that you can turn to, mentorship from a CVI specialist, do you need information for your CVI families, or information that you can share with your supervisor or district leadership?
If you had to choose just three of those, which will be the most powerful for you? And I could see a lot of people are changing votes as they select. So I'm going to give them a chance to do that. Right now, training and practice in the range is leading the pack. But shortly after that, educational resources and strategies.
Were seeing a lot of movement between a network of professionals with CVI experience. We know many of you are working in pretty isolated areas and often working with the first child with CVI that you've ever worked with. And that network might be helpful for you.
So just again, I'm going to take these in the order. If you could all stop voting. OK. Training and practice in the CVI range, followed by a tie between educational resources and strategies and a network of professionals. For this particular group, those are the three things that could help the most. This is good information for us to have too. Thanks.
So just to let you know what worked, we had a professional and a supportive team. Our team-- our EI team and now our IU team is willing to collaborate. I had access to a trained TVI who was skilled in CVI strategies. I had access to Dr. Roman for a diagnosis and ongoing evaluations and support. I was able to take time off from work to concentrate on Krish and Rohan.
I have a husband who helps me work as a team, and I have a supportive ophthalmologist. I'm sharing our story today so that you can see evidence that when all lights are green and all systems go, children the CVI can thrive and improve their vision.
The thing we found that worked on Krish's CVI journey-- the things we found-- were local trainings for service coordinators, evaluation teams, teachers, and therapists that raised awareness of the risk factors for CVI and provided Krish's physical therapist knowledge of the possible risks and the incentive to refer him for services.
In addition, a supportive and collaborative team who quickly learned and integrated Krish's strategies in their session increased the opportunities for Krish to learn to use his vision throughout the day. The CVI mentorship program through Dr. Christine Roman-Lantzy in Pittsburgh empowered me to recognize risk factors for CVI and to implement strategies as I help the family to pursue the diagnosis of CVI.
While the suitcases I carry on my journey do not have a medical degree inside of them to allow me to diagnose a child with CVI, my bags are well-packed with the essentials-- to allow the child to begin to respond to the world using his vision. My own continued training in CVI kept me up to date on the latest research and strategies for working with children in phase three and was crucial in allowing me to support Krish and his family through the transition process.
Krish's CVI journey would not have been as successful if it were not for his parents' unconditional commitment to do whatever he needed to help him to develop. And the number one reason for success is Krish.
We can show the video now.
[MUSIC PLAYING - LUMINEERS, "HO HEY"] 2, 3. I belong with you, you belong with me, you're my sweetheart. I belong with you, you belong with me, you're my sweet. Ho! Hey! Come on, fellas. Ho! Hey! Ho! I don't think you're right for him. Hey! Look at what it might have been if you--
Ho!
--took a bus to China Town. Hey! I'd be standing on Canal Ho! And Bowery. Hey! Ho! She'd be standing next to me. Hey! I belong with you, you belong with me, you're my sweetheart. I belong with you, you belong with me, you're my sweetheart.
Love. We need it now. Let's hope for some. 'Cause oh, we're bleeding out. I belong with you, you belong with me, you're my sweetheart. I belong with you.
[MUSIC PLAYING - JUSTIN TIMBERLAKE, "CAN'T STOP THE FEELING!"] I got this feeling inside my bones. It goes electric, wavey when I turn it on. All through my city, all through my home, we're flying up no ceiling, when we in the zone. I got that sunshine in my pocket, got that good soul in my feet. I feel that hot blood in my body when it drops. Ooh! I can't take my eyes up off it, moving so phenomenally.
So don't stop. Under the lights when everything goes, nowhere to hide when I'm getting you close. When we move, well, you already know. It's just electric. Nothing I can see but you when you dance, dance, dance. A feeling good, good creeping up on you, so just dance, dance, dance, come on.
All those things I shouldn't do, but you dance, dance, dance. Ain't nobody leaving soon, so keep dancing. So just dance, dance, dance. I can't stop the feeling. So just dance, dance, dance.
[MUSIC PLAYING - BRUNO MARS, "24K MAGIC"] Players, put your pinky rings up to the moon. Girls, what y'all trying to do? 24 karat magic in the air. Head to toe so player, look out. Pop, pop, it's show time. Show time. Show time. Show time. Guess who's back again. Oh, they don't know? Go on, tell 'em. Oh, they don't know? Go on, tell 'em. I bet they know as soon as we walk in. Showin' up.
I'm wearing Cuban links. Yeah. Designer minks. Yeah. Ingelwood's finest shoes. Whoop whoop. Don't look too hard, might hurt yourself. Known to give the color red the blues. I'm a dangerous man with some money in my pocket. Keep up. So many pretty girls around me and they waking up the rocket. Keep up. Why you mad? Fix ya face. Ain't my fault that y'all be jocking. Keep up.
Players only. Come on. Put your pinky rings up to the moon. Girls, what y'all trying to do? 24 karat magic in the air.
[MUSIC PLAYING - YLVIS, "THE FOX"] What the fox say? Hatee, hatee, hatee, ho. Hatee, hatee, hatee, ho. Hatee, hatee, hatee ho. What the fox say? Joff, tchoff, tchoffo--
So I think we had one last question for the group. Do you believe that children with CVI can improve their use of vision? Yes or no. It's a remarkable story. It's an incredible story. We do have time for a couple of questions. And one has been posted for you, Marianne, which is, how often are you able to see your students with CVI, and what is your caseload size?
Well, typically, when I was seeing Krish, I was in early intervention in our county. For sure, the babies, infants with CVI would need to be seen weekly. That was my case load. I had a very flexible ability to do that with a lot of support. Often, it may increase if the more support [AUDIO OUT] team. Presently, I am doing consulting, more specifically, with CVI.
So yeah. The amount of time that is needed for those-- for the babies or the students is determined by your IEP goals, or ISFP goals, which is the emphasis on having a strong CVI IEP to give the correct help-- the appropriate amount of services for the student.
Thanks. Ellen comments, you know, so often, people forget to do the parent interview portion of the range. And they miss a lot of great information. And just seeing the-- Krish's progression, and so much of that last video, where, you know, he's at home. He's interacting with his friends and his siblings and his parents. And so, you know, you've got to get that feedback from the parents about what takes place in these other environments.
While people are posting a few more question-- and we just are at the top of the hour, and we're going to-- our capture's going to sign off with us shortly. But we do have time for a couple more. Mario asks, where is-- where can you say you've had the best training in CVI?
Me? Obviously me.
I need you to lean way forward, Marianne.
OK.
Thanks.
My-- I would say that the best training for me has been whatever my next training is, honestly.
That's great.
I do not-- especially with a phase three, the new information that's out there now with phase three, it's never over. The difference-- every time I am able to be at a conference or symposium with Dr. Roman or able to chat with other people in-- for instance, a Pediatric Cortical Visual Impairment Society-- in a meeting that we have every year in Omaha.
I have never left one of those interactions, conferences, et cetera, without learning something. And I think it's really important for professionals to know that because you cannot say that you are skilled and not understand that you still have more to learn.
Well said. I think that's a great comment to close on. We're seeing a lot of people saying thank you in the Q&A box. And we do thank you both. We saw this presentation at the Omaha conference. And it was so powerful and just a great example of how collaboration can work that we asked Gunjan and Marianne to repeat it for us.
If you do want to continue sending in questions for the next few minutes, we will follow up offline with that. We're not going to be able to get to them all today. Let me again thank you both and all of you for participating, on behalf of our team here, including Valerie Welland, who runs the console, Dr. Mary Zatta, who runs the program, and we thank you so much. We'll see you guys next month. Take care.
Thank you.