My experience as a student living with CVI who uses AAC

LJ” leads a powerful and informative presentation about his experience as a middle school student living with CVI who uses AAC, and how he accesses his learning in a general education setting.

Lewis “LJ” Seiff presented to our CVI community about his experience as a middle school student living with CVI who uses AAC. LJ described his personal educational journey with CVI and how he accesses his learning in a general education setting. During this interactive presentation, LJ asked the audience how to make inaccessible learning activities accessible for students with CVI, and he provided examples of accommodations and tools that allow him to engage in his learning activities. 

We have so much to learn from people with CVI—it is how we are going help move the field forward and improve outcomes for people with CVI. 

LJ shared, “My mission has become to increase awareness about students like me and to use my own experience to provide educators and parents with strategies to help their students. I want to improve academic accessibility for other students like me and provide educators, families, and students with the tools to help their students. My hope is that my presentation will help to provide tips and tricks for other students who are living with CVI.”

Below are excerpts from LJ’s informative and powerful presentation.

LJ’s journey: “Understanding my disabilities has not been a simple process for me.”

My own personal education journey has not been easy. I was born with cerebral palsy, a disability resulting from damage to the brain before, during, or shortly after birth. Because it is difficult for my brain to send signals to the rest of my body, processes like muscular coordination and speech are affected. This is why I use my Alternative Augmentative Communication, or AAC, device to communicate. 

I was also diagnosed with Cerebral/Cortical Visual Impairment which had a huge impact on how I was able to interact with my AAC device and the rest of the world around me. However, my CVI diagnosis did not come until I was eight. 

When asked about my early childhood, my mom said, “LJ’s first strabismus surgery was when he was one year old. I trusted our eye doctor and took his word as the ultimate diagnosis. We knew LJ had uphill challenges because we could see his eyes floating up. We could see his eyes crossing. Later, we thought by changing his eyeglass prescription, we were helping fix the problem. The real regret we have is that we did not know LJ was visually impaired. We would have approached so many things very differently and surely could have helped make his visual and educational journey easier.”

Understanding my disabilities has not been a simple process for me—where I go to the doctor and I leave with a report in hand that tells me what the issue is and the next step. My family and I have had to keep fighting for me. 

We have had to hire educational consultants. We have changed doctors because most doctors are not informed enough to screen for CVI. My first doctor never even made mention of my condition. Not once. As I’ve gotten older and learned to advocate for myself, I still run into many issues. 

What access looks like for LJ

As I’ve gotten older, my schoolwork has become more complex. I have had to work tirelessly with my parents and teachers to modify my schoolwork so I’m able to access the material. It felt like so much effort back when I was first learning. It seemed like there was a disconnect in what I could do and what people assumed I could do. Maximizing accessibility for me comes with understanding all of the different parts of who I am. I am a student. I have CP, which affects my fine and gross motor movements. I have CVI and I use AAC. 

But the early focus was on me using AAC versus learning to read and write. I wonder if it would have been different if there had been a Teacher of the Visually Impaired (TVI) in my life earlier on. I do want participants to know that once I got my diagnosis, school paired me with a TVI, who started helping my team better help me. 

I receive a variety of services to help me, including vision services, speech-language therapy, and occupational therapy. I’m thankful for all the assistance I have had and continue to have on my educational journey. And now I want to help others. I am so, so thankful to CVI Now for sharing other people’s voices and their stories. I am also thankful to all the researchers out there that are working to expand awareness and continue to improve their understanding of CVI. 

It seemed like there was a disconnect in what I could do and what people assumed I could do. Maximizing accessibility for me comes with understanding all of the different parts of who I am.

LJ Seiff

LJ describes his fatigue

The most important consideration is helping educators, therapists, and families use applications and modifications to ensure less fatigue for people like me. That will, in turn, ensure optimal life functioning and outcome because we will conserve our energy for the really tough days. 

Some days I feel great, but other days I am left feeling fatigued, and doing work is difficult. For example, driving myself up in a wheelchair where I have to get into the van can be tricky some days and it seems to come out of the blue. On other days, easy peasy. And even with that said, I can get super tired one day in the morning if I had a science lab earlier that morning. Other times, my fatigue might be toward the end of the day. So, it is not predictable. 

LJ talks about his CVI 

Whether you’re a teacher, aide, or family member of a student with CVI, a key takeaway is this—“with CVI, the brain has difficulty converting the raw data from the eye into a reliable, meaningful image of the world that can be interpreted and acted upon” (Matt Tietjen). I think this really connects. It tells educators we need many different ways to give our students all of the information and details they need. We see the world differently than you do. Creativity and flexibility is key when helping students with CVI. 

There are many different ways that CVI may present in children and many different strategies that can assist them. For me, many different colors on the page can be distracting. I can see material best when the background is black and the text is white. Large font is best for me, and it helps when boxes are outlined in yellow so I can clearly distinguish them from other objects and text on the slide. 

Other characteristics of my CVI include how I can quickly look at familiar objects and recognize them, but when I’m being introduced to a new item or if I’m feeling fatigued, I will oftentimes stare at that object longer. 

Placement and distance of objects are also key for me. I do best when objects are held at the midline of my vision versus in my peripheral. I also struggle when objects are too far away unless it’s a face that I’m familiar with. I can spot Mom and Dad anytime, anywhere. I am able to look at and recognize objects that are used in my everyday routine. 

If a new object is being shown to me, having a plain or black background really helps me to focus solely on that object versus many colors or patterns that may be in the background. And it helps if I am in a fully supported position in my wheelchair versus slouching. 

My biggest challenge comes when there is a lot of complex visual information, auditory information, or both. Math and science classes in particular prove challenging as there are many diagrams, charts, and other visual aids that can contain a lot of information and are often color-coded in a way that is visually hard for me to understand. 

LJ’s strong advocacy for accessible educational materials

The National Center on Accessible Educational Materials writes that “Educational materials and technologies are accessible to people with disabilities if they are able to acquire the same information, engage in the same interactions, and enjoy the same services as people who do not have disabilities in equally integrated and equally effective manner, with substantially equivalent ease of use.” 

Let me say that again. “With substantially equivalent ease of use.” For me, this entails tools, resources, and devices being modified with high contrast, vivid, highly saturated colors. It also means decluttering information presented to me. We all know those math problems that have a large number of simultaneous visual information that make education accessible for all. 

From my personal experience, CVI is so complex and so deep that my teachers should think about adapting my work just as if they were Brailling for a blind person. I have a Teacher for the Visually Impaired (TVI). Having a good relationship with the TVI so you can tell them when something is not right or not working. This allows for materials to be adjusted as needed. It is so individualized. 

I don’t have a math or reading disability, I have a physical and visual disability. 

LJ Seiff

LJ on Universal Design for Learning (UDL) and how this approach supports his access

UDL is a framework to improve and optimize teaching and learning for all people based on scientific insights into how humans learn.  It was developed by CAST, a non-profit educational research and development organization. Let’s use the framework to make class materials more accessible. 

There are three key principles of universal design of learning—providing multiple means of engagement, multiple means of representation, and multiple means of action and expression. 

Provide multiple means of engagement. Teachers should ask themselves, how are they giving their students autonomy? Is their learning relevant to students’ needs and wants? Is my classroom inclusive for all students? 

Teachers can survey students about what activities they enjoy and what their strengths are. Choice menus can be used and learning goals should be stated in a way that is clear, but also relevant to the students and their lives outside the classroom. 

Multiple means of representation. Teachers should consider how they display information, particularly visual-heavy subjects like math and science. Teachers should be really mindful if this material is easily accessed by all or if modifications are needed. 

A quick way to improve accessibility is to make sure students have the ability to adjust font size and background colors. Editable PDFs are your friend. Teachers can also give other options for engaging with texts like allowing partner reading or listening to audiobooks. 

The person with CVI can stop, rewind, restart, review as needed, or they may need audio, video, or written reminders. This way, students with CVI can still access the material without becoming quickly fatigued. 

Ensure accessibility when it comes to determining how much a student has learned. As a teacher, can you be more flexible with timing and pacing and allow students to show their knowledge in different ways? Do students have access to assistive technology? 

Providing checklists and calendars to help students manage subgoals is a great way to help students with CVI plan ahead so they can stay on track for meeting the learning goal. Allowing students to have access to common assistive technology and giving them the opportunity to demonstrate their knowledge in a variety of ways are a few strategies teachers can use to help their students. 

Remember, if you take away anything from my presentation, it is this—accessibility for all is key.

Examples of services, strategies, and accommodations LJ uses in school

Not one single resource or adaptation is best for all students with CVI. We’re all unique, so as I have said before, creativity and flexibility are key. 

Check out LJ’s resource library with the tools and resources he uses to access his learning.

Families, guardians, students, you must ask for what you need, and be brave to speak up. Ask and ask again. Remember, this fighting helps you learn. It would be a much more perfect world if schools handed out the things we need like candy. If you don’t fight, you will not get the tools and resources to best help your students. You will find tools that will help you best learn. 

LJ Seiff

Also, try to find the community that is like you. What I mean is, for students to find community outside of school and for the family to find community. This is so important so you know that you are not alone. 

Are you a provider working with students with CVI? Earn continuing education credits for LJ’s webinar.

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