Videos by Mia Giantonio and article by Jessica Marquardt
Mia, a recent high school graduate who has CVI, is an excellent student with a supportive team. During her high school career, she had full access to her education and the many activities that make high school memorable. “My favorite subjects in school are math, Latin, and anatomy,” she says. “I’m an assistant manager for the basketball and volleyball teams and a member of the State Advisory Council for Special Education and the National Honor Society. I received high honors in every semester in high school. So far, I have received the National Latin Exam and state Latin Exam award. I have also received a Rotary Leadership Award.”
Notably, Mia envisioned, pitched, and secured funding for a healing garden at her high school, inspired by a rooftop garden she enjoyed during a lengthy hospital stay. She worked with the administration to budget, make a plan with a landscaper, and purchase plants and gardening materials. Now, all students can use the garden as a haven to regroup and reflect.
“A few years ago my proposal for the Voice for Change state grant contest was voted to be the winner by all BCHS students and staff,” says Mia. “My proposal was a healing garden. The inspiration for this project came to me from my experience when I was at Boston Children’s Hospital for a major spinal surgery… Due to the lingering pandemic rules still in place, I was not allowed to have visitors, which made it very lonely. Boston Children’s offers a gorgeous rooftop garden available only to patients and families recovering in the hospital… I thought it would be a great idea if we had something like this close to home… With the healing garden, I was able to take something that helped me and share it with others.”
Much like a garden, an accessible school day takes cultivation and care. If you plant a seed and walk away, you may be disappointed with the results. Instead, you must gather resources and plan to return regularly to nurture that seedling as it grows.
Mia and her team understand the care and tending required to ensure an accessible, well-rounded education. While every student with CVI requires a different set of accommodations for an accessible school day, there is a throughline. Mia explains, “Despite the different accommodations for different people, we need to know that these things need time and planning to be successful.”
Mia explains, “Here’s what it takes to create an accessible day for students with CVI. You need a team that understands CVI in general and wants to keep learning. The team members that listen to you and based on your needs, someone to adapt work, general teachers who are committed to sending work to be adapted in a timely manner. They should not wait until the last minute. A team that is willing to collaborate with the students and their families to make sure they are comfortable with what the student is being provided and that what the team is doing will work best for the student.”
Matt Tietjen, Mia’s TVI, agrees that understanding CVI is the first step. “CVI is very complex, and it presents differently from ocular visual impairments. If a school team doesn’t understand CVI and the way CVI is impacting a student, they’re not going to realize why they need to do certain accommodations or modifications.”
For example, Mia shares that noise, crowds, and visually complicated materials impact her school day and how certain accommodations help.
Tietjen recommends that the student’s team take classes, read books, and internalize blog posts written by people with CVI. He says we’ll never be finished learning about CVI because there’s always more research coming out and “no amount of hours in a class or hours in a series of workshops is going to add up to even one hour of living with CVI. And so it’s important to always look at our students and their families as the experts on their own CVI and how it impacts them.”
Mia shares, “Having a team that strongly understands my CVI helped me because I was really struggling in the beginning. No one really understood my disability and it made my mom really upset because she knew that I desperately needed help. Over the past few years, after learning my accommodations, I now know what I need.”
The team members recognize that their success stems from having time to plan, well-mapped roles, and open, frequent communication. Mia’s team consists of many partners, each with defined expectations. They include:
For example, Mia’s team has assigned two paraprofessionals to adapt her work and take turns supporting her during class. One of them has been with her since 5th grade and the number of hours dedicated to adapting materials has grown with the complexity of Mia’s coursework.
“She started this in 5th grade, working four hours a week adapting materials for me, but now she spends 25 hours a week adapting materials,” Mia recalls. The paraprofessionals also:
The case manager and administration say the team’s strong relationships and open communication are crucial to cultivating an accessible school day for Mia, as well. “A lot of my role is collaboration, communication, and coordination to make sure that the services are provided and the IEP is followed,” says the team case manager. She adds that Mia’s teachers “provide biweekly updates about what’s happening in the classroom – tests and quizzes and projects – anything coming up in the next two weeks” and that the related service providers also “provide biweekly updates of what they’ve worked on in the last two weeks.”
She says, “Communication, making sure everyone is on the same page, making sure we’re sharing information with each other, I think that’s one of the keys to our success here, for sure.”
Tietjen emphasizes the importance of consistent partnering with the student and family as a gateway to self-advocacy. “When you partner with a student and family, a byproduct of that collaboration is the development of the student’s self-awareness about their CVI and educational needs.
“And in doing that, the student is learning more about how to articulate their experience to others and, as the TVIs, we’re learning more about how CVI impacts them at the same time,” says Tietjen. “That type of collaboration and believing the student, believing the family, is going to be what moves our field forward.”
Meet regularly. Mia’s team works on a consistent, recurring schedule to stay ahead of her school needs. As the case manager mentioned, they meet bi-weekly (every two weeks) to discuss upcoming assignments, what needs to be modified, what visual accommodations will be necessary, and how to implement them. The team has agreed on how far in advance the paraprofessionals need to receive materials from the subject matter teachers and has ensured the paraprofessionals have sufficient time in the week to make those modifications. The TVI and related service providers use these bi-weekly updates to summarize Mia’s progress.
Everyone should have a defined role and set of tasks. In Mia’s case, she has:
Every team should make arrangements for regular CVI training. The team will want to think through the following:
Know that the organization system will change over time and document it. It’s important to outline how the team collaboration will take place and “how that looks will change over time,” says Tietjen. “That’s a good thing. We want to always document that to make sure everyone is on the same page about what system the team is using.”
In chemistry class, Mia works on balancing chemical equations. Side by side with her TVI, the two collaborate to lay out the equation and color code it so that it is visually accessible and she can solve the problem.
Mia asked for an IEP goal to practice making her own adaptations. In this video, she is learning to color code a chart.
Mia and a paraprofessional collaborate to adapt a short story by Ernest Hemingway. They discuss the appropriate text specifications (font type, size, weight, spacing) and build a color-coded key to track character dialogue.
Mia’s mom says she knew early on that their family would have to advocate. When Mia reached school age, she did everything she could to be sure the school understood that their family expected an accessible day – from the playground to class activities and all the corners of the building too. Mia was entitled to full access to her school and education just like every other student.
Mia’s mom recalls that “Not everyone knew the answers right away, it’s not an easy journey. But finding those that were willing to work together was key.”
She gives the following advice to fellow CVI parents. “You don’t have to learn everything at the same time. Like raising children when they’re little, they’re going to have different needs than when they are older. The same is going to happen with your child with CVI. There will be ebbs and flows in the advocacy process.”
These days, Mia is a reflection of the advocate her mother has been for many years. “My mom was the main advocate for my accommodations, now I’ve taken this role. Woohoo!” Mia exclaims. My team collaborates with me to see what I think about things, for instance, if I want some of my assignments online or on paper, if something is big enough, etc. When I was in high school I started to practice adaptations myself. This year I wanted to have some IEP goals based on learning how to adapt my own work, knowing that I won’t always have paraprofessionals that will adapt my work for me, especially in college. I’m even learning how to color code my own table.”
The fruits of this team’s labor are evident in Mia’s many successes and ability to advocate for herself. With CVI understanding, ongoing collaboration, and a solid plan, any team can cultivate an accessible school day for students.
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