CVI learning guide

Advocacy & Support

Welcome to the CVI Advocacy and Support learning guide! These are curated resources from our larger pool of CVI content to empower all forms of CVI advocacy and find personalized support. You’ll learn why early intervention is critical and how intervention can start at home with DIY projects. Next, approach the IEP armed with information, and find community through one of the largest online collections of stories from individuals with CVI and their families.

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Early intervention
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IEP guide
Find support
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CVI Stories
CVI at home

Early intervention series

EI and why it’s so important

EI is designed for babies and toddlers with developmental delays and disabilities, including CVI. It offers young children and their families free services, ranging from physical and cognitive skill development to social, emotional, and self-help strategies.
At Perkins, we often talk about neuroplasticity. When the brain is young, it’s even more malleable, which is why EI is so important. With EI, babies and toddlers can work on:

Jeremiah looks at a photo/tangible tile that represents himself and holds his palm against the tactile element.
  • Cognitive development
  • Compensatory skills, such as touch and hearing
  • Fine and gross motor skills
  • Sensory stimulation
  • Social-emotional development and communication

Our EI series speaks to your whole experience as a new CVI parent.

It offers practical knowledge, science-backed information, and emotional insight like how to advocate for your child, how to build compensatory and visual skills, how to navigate the emotions of disability parenting, and how to bridge the gap between EI and school.

Explore our series on Early Intervention
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Individualized Education Program guide

IEPs

We know that IEPs can be overwhelming and stressful. That’s why we wrote this guide.

Go to the CVI Now IEP Guide
Back-to-school advocacy kit

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Parents hold the power! If you’re uncomfortable with an IEP, don’t [fully consent to it]. Your child has a legal right to services. Don’t feel pressured

Gunjan, mom to Krish, 9

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Find support

We get it and we’ve got you.

You shouldn’t have to do this alone — and you don’t have to. 

At CVI Now, we’re always learning from individuals with CVI, their parents and caregivers, educators who are helping their students find success, along with medical professionals and researchers. Wherever you are in your journey, whether you’re looking for advice that’s customized for your child’s unique experience with CVI, resources that will help you understand CVI better and educate others, a place to vent about the hard stuff that comes with disability parenting, or helpful ideas for supporting your child at home — you can find support here.

Sign up for 1:1 CVI Parent Support
Join our CVI Now Parents Group
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CVI Stories

The CVI community has a lot to say. At CVI Now, we believe people with CVI and center their lived experiences. As the collective voice of individuals with CVI and CVI families continues to grow, our community builds CVI awareness among families, educators, providers and lawmakers.

Our stories are powerful. Our stories create awareness. Our stories change how the world sees CVI.

Molly, a young woman wearing her hair in a ponytail, stands between her parents. - all three smiling.
Story
How to navigate university with CVI
Lyla kisses the chubby cheek of her son, Logan.
Story
Logan’s journey with infantile spasms and CVI
A young adult with brown hair, Molly, sits in front of a bright green wall. With a concentrated look on her face, she plays drums.
Story
How Molly found her rhythm and confidence with CVI and self-advocacy
Explore all CVI Stories
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CVI at home

CVI manifests differently in everyone who has it. That means we need to think creatively to optimize the environment in order to meet the unique needs of a family member with CVI so that they feel safe, independent, and included in daily life.

We’ve gathered some common best practices and ideas that work for students and their families. Start exploring strategies and projects:

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Previously: Medical & Research

Learn about the NIH’s CVI initiative and the brain’s visual system, plus explore our CVI research library, interviews with leading CVI researchers and clinicians, and get involved in CVI research studies.

Medical & Research
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Join our community

Keep up to date with all that’s happening in the CVI community: current research, CVI Now resources and stories, and upcoming events. Subscribe to our monthly newsletter, and find our groups for individuals with CVI and their caregivers and for educators.