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Mary and Nathan grew up outside of Durango, CO, and that’s where they wanted to raise their first child, Leland, who turned three in April. Leland was born with a BRAF gene mutation, and at six months the doctors added optic nerve hypoplasia and CVI to the diagnoses. “Leland had so much going on that when we learned of his vision impairment it was just ‘one more thing’ to add to the list,” said Mary. “Once we started seeing our teacher from A Shared Vision, we started to get more information on his vision diagnosis, and we were filled with hope."
Their teacher taught Mary and Nathan how to modify Leland’s environment, how to read his cues, and how to adapt the “hand under hand” strategy to “hand under foot” because his hands were so sensitive. Their teacher also knew that being outside was important to their family so she helped them set up their stroller so Leland could work on his learning and vision when they’re on walks or just relaxing on their sunny deck.
Living in a rural area with a medically complex child is challenging, but Mary and Nathan found a close community of doctors and providers. “The benefit of being in a small community is that there are resources available, and you don’t just get lost in the system of a bigger city. The pandemic brought so much more access to us with telehealth, which we have been so thankful for!” said Mary.
“Obviously, we didn’t plan on having a kid with such significant needs, but we cannot imagine our life without him now. These kids will teach you more about life and resilience than you know is possible,” said Mary. It also helps to have a good teacher from A Shared Vision “in our corner cheering us on and providing the tools and techniques for success.”
Hattie’s genetic disorder – 1q43q44 deletion syndrome – is so rare there’s little research on it. So, “Hattie was going to write her own story,” says her mom Abby. It’s a story of hope and inclusion, and about her parents Abby and David finding a supportive community.
Besides developmental delays, Hattie has cortical vision impairment. With that diagnosis, “it was a relief to understand Hattie’s vision more and get the help she needed. We got the appropriate therapy, accommodations, glasses, and more,” explains Abby.
She began working with their EI-TVI from A Shared Vision when Hattie was two. “Our teacher always came to our home with tactile books and a flashlight to shine on Hattie’s toys. She taught me how to use a black background on her activity tray and simplify her play space so the toys would stand out. She even connected me with another family, who are now good friends of ours,” explains Abby. “It’s so important for parents to find a community of people that understands what you’re going through,” says Abby. “My community has saved me.”
In 2020 Abby began a new community when she started Harmony Dance Team. “I wanted Hattie to dance with her typical peers, and possibly her sister someday, so Harmony Dance Team was born. Harmony is inclusive to EVERYONE. We are not just your typical dance class. We are a team. We perform around the community and spread awareness of inclusion, unity, and God’s love.” Two teams – for elementary- school and middle- school ages – will be formed this year. For more information contact Abby HERE.
Nothing stops Namni. Not even her visual impairment. When she was diagnosed with optic nerve hypoplasia when she was four months old, her parents Shelly and Kreigh wondered what they did wrong. “Then we realized there was no sense in being sad when she was thriving. She doesn’t let anything stop her from learning,” says Shelly.
Shelly and Kreigh began working with their EI-TVI from A Shared Vision when Namni was six months old. “Our teacher taught us that being hands-on is very important, and every minute counts when your child is learning with a disability," explains Shelly.
Namni’s EI-TVI also taught her how to understand her feelings. Her teacher and another provider created a self-soothing strategy for Namni called “smelling the flower and blowing out the candle” because Namni loves flowers and birthdays. Now when Namni gets angry or frustrated, she’ll say to herself, “Do you want to close your eyes and breathe?”, and she calms down. Because she’s been taught to identify her own feelings, Namni can recognize feelings in other people, too.
Being empathetic will help Namni build new friendships when she starts preschool in her Grand Junction, CO, school district this March. “Namni can’t wait! She has a bright and bubbly personality. She absolutely loves meeting new kids her age, and she is very social,” says Shelly.
Since she was four months old, Shaylee and her younger sister, Cheyenne, have been raised by their grandparents, Kimberly Griffin and William Murray. They are lucky girls!
Shaylee was diagnosed with cortical visual impairment due to a non-accidental head trauma that occurred while she was living with her birth parents. Kimberly is now raising Shaylee as if she were her own child.
She began working with her Early Intervention Teacher of the Visually Impaired from A Shared Vision in 2020. “Our teacher is so awesome. She gave us a light box to use during our telehealth visits, and I tell you, that’s the best thing ever. We put toys on it and Shaylee started grabbing the toys. Her attention was right on it,” explains Kimberly. In the beginning Kimberly would put too many toys on the light box, but her teacher taught Kimberly “how to allow Shaylee to make her own choice.”
Because it’s a brain-based visual impairment, CVI can be an overwhelming diagnosis for many parents. Kimberly became more curious. “You don’t get discouraged if you empower yourself with the knowledge of what CVI is,” explains Kimberly. “It isn’t a terminal illness. It doesn’t mean your child is blind or they’ll never see. Once you’re not afraid of CVI, you can trust the process of your child’s development.”
According to her mom Chloe, “Ella is an amazing girl who lights up the room!” Like many children with a visual impairment, her journey started more darkly. She was born with a RARB gene variance that causes microphthalmia in her left eye, bilateral colobomas, nystagmus, and mild optic nerve hypoplasia. She’s also nearsighted.
They began working with their Early Intervention Teacher of the Visually Impaired from A Shared Vision in the fall of 2020. Although they were specifically looking for an O&M specialist, their teacher became a great resource for so many other things. “She has provided us with strategies to help motivate Ella as well as meet her individual needs,” explains Chloe. “One recent suggestion was using our phones to zoom in on animals at the zoo so Ella could see them better. This was such a helpful tool and one we use now on every visit to the zoo!”
This September, Ella is attending two preschools four half days a week! “Our teacher from A Shared Vision connected us with TVIs from our home district and helped us navigate the process of transitioning from early intervention to school-based programming,” explains Chloe. She also helped them make an “All About Ella” book to share with her teachers. “Our teacher has always encouraged us that we as parents know what is best for Ella. She has sat alongside us as we have advocated for Ella, and I could not be more appreciative. Receiving any diagnosis for your little one can be worrisome and daunting, but having a community of family, friends, and providers has been the biggest blessing," adds Chloe.
When Grayson was two months old, his parents Kelly and ER noticed that his eyes moved back and forth. Two months later they found out he had ocular albinism, which can cause nystagmus and light sensitivity. “We were worried,” explains Kelly. “Was he ever going to ride a bike? Would he see the mountains? You don’t want your child to struggle. Looking at him now, though, he’s doing amazing!” Except for his visual impairment, he acts like a typical little boy who loves going to the park, making art projects, baking cookies, and watching Mickey Mouse videos on the iPad.
The family started working with their EI-TVI from A Shared Vision when he was one. “We learned from our teacher not to treat him differently than any other kid. Just give him the resources to let him grow to the best of his ability," explains Kelly.
When Grayson turns three in July, he will attend preschool in his local school district. Kelly and Grayson met their EI-TVI at the school’s playground to familiarize him with the equipment. “She helped make him aware of all the drop-offs and how to be safe,” explains Kelly. HERE are more parent resources on preparing for preschool.
Grayson has also started wearing glasses. Keeping them on is easy because he has frames in orange, blue, and mint green, and the lenses adjust to the sunlight when he’s playing outside. Once when he took his glasses off, he told Kelly, “I need a break, Mom. I can see with my eyes.” Spoken like a young boy with confidence in his growing abilities!
When Bree got the results of her daughter Solvi’s genetic test after her first seizure, her world collapsed. Solvi was diagnosed with Wolf-Hirschhorn syndrome and CVI. “Everything changed on how I navigated life,” explains Bree. “If Solvi didn’t get the early intervention services as soon as possible, it would set her back even further.”
She began working with her EI-TVI from A Shared Vision because she wasn’t tracking or reaching for objects. “We love our EI-TVI. She taught me how to use vision strategies while we were playing with Solvi. One time she brought a recipe and the ingredients for pumpkin pie play dough. We had a lot of fun making it and then playing with it.”
Solvi’s other “therapist” is her horse, Lucky. Bree has always believed in the healing power of horses. When she learned the hippotherapy programs near her were full, “I decided to help some horses and Solvi at the same time.” She bought two horses that no one wanted anymore. They go to the stable several times a week to ride Lucky. Solvi has her own saddle and wears a helmet. “Horses are magical. Lucky has taught Solvi how to be strong, how to use her balance and engage all her senses. And Lucky makes her laugh!” explains Bree. If other A Shared Vision families are interested in hippotherapy, or would like to meet Lucky, Bree invites them to contact her HERE.
Before Emmitt was born, the doctors discovered he had spina bifida. Although Kaylynne and her husband Eric had time to prepare for his arrival, they never anticipated the degree of his complications. Thankfully, they have family and providers who support them. “It’s a saving grace when you have a medically challenged child,” says Kaylynne.
Their support network includes an EI-TVI from A Shared Vision, whom they began working with in 2019. “Emmitt loses objects in his lower field of vision. Our teacher showed us how to get food or toys to pop on his tray. She gave us a finger flashlight that we shine on his toys so he can track them,” explains Kaylynne. When he would drop toys off his tray or they would roll off, Kaylynne devised a way to keep them attached to the tray with cell phone ring holders and coiled lanyards.
Even during the pandemic when home visits aren’t possible, Emmitt is making huge strides developmentally. “Progress is still possible even though we’re seeing our therapists through telehealth,” says Kaylynne. Emmitt’s “fighter spirit” comes from his parents who are willing to let Emmitt try new things. Whether Emmitt is propelling his Scooot chair, rolling over by himself or saying “cracker” for the first time, “We try hard to not let his diagnosis determine what we think he can do because he always surprises us with what he can actually do,” says Kaylynne.
Havyk is a busy two-and-a-half-year-old. “He’s constantly moving,” explains his dad Justyn. Flipping switches, turning things on and off, opening and closing doors, twisting handles, spinning wheels – anything to keep his hands occupied.
So, his dad researched ideas on Pinterest and made a busy board – a four-foot-tall piece of smooth medium-density fiberboard with all kinds of buttons, latches, doorstops, wheels and locks screwed on to it. These are everyday items found around the house or at the local hardware or dollar store. More busy board ideas are HERE.
Some of the activities are more challenging for Havyk, so he can make his own choices by their level of difficulty. By placing his hand under Havyk’s and guiding him, Justyn can show him how to open a more difficult latch or remind him to use his right hand instead of his left. Playing together with the board – with dad imitating Havyk’s noises or narrating what Havyk is doing —helps Havyk build language skills.
Jackeline Orellana was six months pregnant when she learned during an ultrasound that her baby Jada’s brain was enlarged. When Jada was born the doctors found she had multiple brain deformities, which affected her vision. She started working with her EI-TVI from A Shared Vision when Jada was four months old.
Jackeline understands the challenges of raising a child with developmental delays. She has a 21-year-old sister who has special needs. “I want to be strong like my mom," says Jackeline. To encourage Jackeline, her mom explains, “God knows why things happen. We were chosen to take care of our special needs angels.”
With help from her EI-TVI, Jackeline joined a support group of five mothers who have children with infantile spasms. “It’s hard being a special needs parent because not everyone understands what you’re experiencing,” explains Jackeline. “The support group is really nice. We can ask each other questions. There’s always something new the doctors tell us that we can discuss. And we’ve become friends,” explains Jackeline.
When Bairon was diagnosed with a rare congenital disorder at four months, his mother Monee had to Google the diagnosis to learn his optic nerves were underdeveloped. He was legally blind. “I felt grief for my son. I was grieving for the type of life I thought my son couldn’t have.”
When she got her first phone call from her Early Intervention Teacher of the Visually Impaired (EI-TVI) from A Shared Vision, her outlook changed. “She was the first person to explain to me Bairon’s diagnosis, that there’s no known cause for it, and it’s not my fault. A huge weight was lifted off my shoulders. It allowed me to take the first deep breath since his diagnosis, and to focus on what he CAN do.”
Since that first phone call, her EI-TVI has had regular home visits with Bairon and his mother. Monee has learned from her EI-TVI how to incorporate play into their everyday routines, to foster emergent literacy by singing songs and how to provide a multi-sensory learning experience for Bairon to gain access to the visual world. Bair responds well to music and Monee incorporates songs with repetitive lyrics into everything they do.
Monee also stays in touch with her EI-TVI through telehealth – which is a HIPAA-compliant form of videoconferencing that takes place in the child’s home. “It is the most unobtrusive way to bring a provider into our lives. And you don’t even have to clean your house!” laughs Monee. “Without our TVI, I don’t know where we’d be. She makes life so much better for us.”
Logan and Kara Schneider have been on the fast track ever since their son Kaige was born three and a half months premature with a high probability of CVI. “We started therapies as fast as possible and got as much helpful information as we could,” explains Logan. That includes working with their Early Intervention Teacher of the Visually Impaired from A Shared Vision .
Their EI-TVI taught Logan and Kara to explain out loud everything they were doing with Kaige, where to place objects to get him involved with different toys and how to introduce new textures so he wouldn’t be afraid of them. “She had answers for me, and if she didn’t have answers, she’d find someone who does,” says Logan.
The Schneiders were special guests at A Shared Vision ’s October 26th birthday celebration at the Pepsi Center and attended the Avalanche hockey game afterwards. “Kaige loved the game. He clapped and cheered and yelled ‘slam it in,’ when the Avs had the puck.” Kaige talks about playing hockey someday, and starting with his Avalanche leg braces, he just might get time on the ice!
The Shuberts adopted Will in 2018 after he spent a year with them as foster parents and with another foster family in Grand Junction. The same Early Intervention Teacher of the Visually Impaired from A Shared Vision has been their provider throughout these transitions. Since he was four months old, “she’s been Will’s constant. Not only to support him, but also to support me,” explains Shannan, Will’s mom.
Will has many complex needs, including vision loss due to cortical visual impairment. “He’s been blowing the doctors’ predictions out of the water. The love that Will gets from us and his team, that’s the best medicine there is,” says Shannan.
Now three years old, Will is getting ready for another transition – preschool! He will be attending Fletcher Miller School for children with special needs. To prepare Will for these next steps, the Shuberts take him everywhere they go – church, baseball games, even camping. Except for making adaptations to improve his mobility and give him access to everyday routines, they treat him like a typical child. “He’s just a three- year-old boy with different ways of learning,” says Shannan. “He’s an inspiration for us all.”
When Wyatt was born he didn’t open his eyes. When his mom Julie was told by his eye doctor that Wyatt had a rare genetic condition called coloboma and she could expect her son to see only light and dark shadows, the news was heart-breaking.
She began working with his Early Intervention Teacher of the Visually Impaired from A Shared Vision when Wyatt was three months old. He began to see contrast and movement. Now eighteen months, Wyatt can pick up things that are just a few feet in front of him.
He loves to play with balls and he can even hike a ball between his legs to his dad, a former offensive lineman. “One thing I’ve learned is that each kiddo’s visual impairment is unique and you have to do things that help them thrive; right now Wyatt loves things that have a lot of movement. We’re working on his depth perception by playing with balls.” Wyatt uses a push toy to get used to having something in front of him to orient himself in space and he just got his first pre-cane. As his confidence grows so does his parents’. “We have to be confident for Wyatt. I hope when he sees how I react with people that he’ll react the same way when he’s older,” explains Julie.
Baylee turned two on December 15th. Her parents began working with their Early Intervention Teacher of the Visually Impaired from A Shared Vision almost immediately after she sustained brain injuries during a difficult birth. The development of her vision was affected.
As Baylee got older, it was hard for her mom Dana to watch Baylee struggle with walking, going up and down stairs, or using fine motor skills because she was visually impaired.
“My EI-TVI was always there telling me that Baylee just needed a little extra help and to be patient with her. To not worry about the things we can’t control but to do what we can to help her. My EI-TVI was a good coach.”
Through regular home visits with her EI-TVI, Dana has learned how to involve Baylee in everyday routines. Baylee likes apples. When they go grocery shopping together, Dana and Baylee look for the red apples together because they are brightly colored. “I’ve been letting her help me in the kitchen. I let her watch my husband cook and I explain to her what he’s doing,” says Dana. “Kids with disabilities like a visual impairment can develop so much more than we realize,” says Dana. “They just need patience and time.”