Raising a child with CVI can be challenging, frustrating, and emotional—just like parenting itself. In your child’s earliest years, Early Intervention will support your family with services and supports at home. The cornerstone of EI is an Individual Family Service Plan (IFSP), which is a legal document that outlines your child’s EI services and goals.
EI refers to services for babies and toddlers, birth to age 3, with developmental delays and disabilities, including CVI. For kids with CVI, these services might include occupational therapy, orientation and mobility consultation, physical therapy, and speech-language therapy. In many cases, a Teacher of the Visually Impaired (TVI) will lead your EI team.
Don’t be daunted: EI services are free and available in every state. Often, a healthcare provider will offer you an EI referral with a CVI diagnosis. You can also call your state’s EI coordinator directly to request an evaluation.
EI is important because it reaches kids when they’re still developing—brains are especially plastic when children are young, especially under 5. For some, CVI can improve over time. What’s more, for many kids with CVI, it’s possible to build sensory skills (auditory, kinesthetic, tactile, visual) to support their access to learning. In many cases, your child’s brain can develop new connections to overcome initial injury or deficit and improve function due to neuroplasticity. This means that, as your child is exposed to perceivable and meaningful visual information, they can develop new brain connections to improve function. The sooner this happens, the better!
The IFSP outlines your child’s services based on whole-child assessments that look at various developmental domains. If vision is a concern, an EI TVI will complete a comprehensive vision assessment. Remember: You have a voice! You’re an important part of the EI team, which is why ISFP is a “family” plan. This written document contains information on your child’s present level of development in all areas, goals for your child and family, and the services your child and family will receive to help achieve those goals.
For kids with CVI, those services often include:
These services typically take place in your home, where your child will feel comfortable and where activities and interaction work alongside natural routines.
Elise Darrow is a TVI at Colorado’s Anchor Center for Blind Children. She frequently assesses babies with CVI for EI. Here’s what to keep in mind when formulating your child’s IFSP.
Interventions are a positive thing! Yes, the world of CVI and EI might seem scary at first. It’s pretty weird to have someone in your home at first. It’s daunting to put together a service plan for a little baby. But it’s all for good: “What I like to talk parents through is: Yes. Your child has CVI. But the good news is, with interventions, we can work at making their usable vision better. And, [for some], it can get functionally better. Your child has some vision, and we can work on helping them use it in a way that works best for them,” she says.
Your family has a major say in the plan. Remember: A good IFSP plan is family-led.
“Your coordinator will ask: ‘What’s most needed for your family?’ You’re the ones living day-to-day in the house. Based on that, we determine your team and how frequently they’ll visit,” Darrow says. IFSPs aren’t one-size-fits-all; they should be tailored to your child. Every child with CVI is unique.
Don’t ignore vision and building compensatory skills when designing your IFSP. Your child might have other diagnoses and medical complexities in conjunction with CVI; remember, it’s important not to neglect vision, even if your child has other challenges. At Perkins, we believe that kids can learn to see with the right access to early intervention, trained teachers, and education–and you can help! Follow the behavior of your child: If they’re visually attending to objects, movement, or light, build on that. Or, if they’re actively using tactile exploration to learn about their world, foster more of that exploration. Our sensory systems are deeply interconnected. Finding all access points for learning will help build those foundational concepts that support future growth.
A recent study shows that play and active exploration of objects (in babies without visual impairment) can support visual skill development. So it’s even more important that children with CVI have opportunities for using a range of sensory channels to access their learning and, for some, help build visual skills.
“It’s huge for a CVI family to advocate for vision services from a TVI so that it doesn’t get lost in translation or put to the wayside until later. Vision and compensatory skill development are so crucial when kids are younger,” Darrow says.
Push your team to consider this, too. Self-advocacy is important, and your EI team expects it. When possible, draw connections between vision services and other skills.
“Take fine motor development: If you want your child to look at something and then grasp something with their hands, suggest working on vision and fine motor together so that they know what they’re looking at and are motivated to reach for something,” she says.
Your child will have benchmarks, with the goal of “graduating” on to school. The IFSP is written with specific goals in mind. Your team can offer input on those goals, but you should ultimately decide what feels reasonable and important for your child and your family.
EI runs through age 3. Eventually, the hope is that your child will transition to an Individualized Education Program (IEP) plan, a framework for special education services in a public school. And, while public school might seem unthinkable right now, Darrow says it’s often the best thing for a child with CVI thanks to—you guessed it—neuroplasticity.
“In school, not only are kids receiving education and therapy services, but they’re also being exposed to other kids and adults, so they’re developing their social interaction skills, making them stronger and more confident. Being exposed to those different things earlier on in life will help with their neuroplasticity,” she says.
Find more resources and helpful information on the CVI Now Early Intervention Series home page.