Think of Early intervention (EI) as a key that can unlock a kingdom of knowledge. It helps ensure that your child will receive appropriate educational programming, and it places your child on the path to accessible learning.
“CVI is a brain-based visual impairment. With Early Intervention, babies can progress rapidly because their brains are developing rapidly,” says Peggy Palmer, a longtime TVI at Connecticut’s Bureau of Education and Services. “The more you can do today to help your child engage meaningfully in their environment, the more opportunities to build visual and sensory skills. Brain plasticity is on our side.”
Remember: With EI, kids with CVI can learn to access their world–and it’s important to make sure that your EI team understands CVI. (This resource will help them, too!) Read on to understand how EI works and how to collaborate with your team from a CVI perspective.
What’s EI?
EI describes the free services and supports for babies and toddlers with developmental delays and disabilities. These services support physical, cognitive, social-emotional, and self-help skills, ranging from physical and cognitive skills to social, emotional, and self-help strategies. They usually happen in your child’s natural environment, where they feel most comfortable, at home.
EI strategies can support your child in improving:
- Fine and gross motor skills
- Sensory stimulation
- Cognitive development
- Social-emotional development and communication
- Compensatory skills, such as touch and hearing
EI is so important because it targets kids when they’re still developing—brains are especially plastic when kids are young, especially under 5. The sooner you begin intervention, the sooner you can help your child to learn.
Tips for Working With Providers
EI is fantastic, but it can be overwhelming, too! It’s hard to welcome new providers into your home. You might feel protective, overwhelmed, or unsure of how to communicate your child’s needs. You might be grappling with the emotional ripples of a CVI diagnosis. Take heart: There are a few manageable, simple steps you can take to set the stage for effective EI intervention.
Step One: Mindset
Begin with realistic expectations. You know your child best, and you’re in charge. Some kids with CVI struggle with basic health needs, such as breathing or feeding. Others walk and talk. Be honest with your EI providers about your child’s capacity. “Some families are in survival mode, and getting a child to use their vision isn’t the top priority. Don’t be afraid to let it take a backseat,” Palmer says. Unrealistic expectations aren’t fair to your child—or to you. Make a list of your child’s strengths and opportunities for growth, and be explicit with your EI team about what those are. A good EI provider will meet you where you are. No two kids with CVI are alike.
More isn’t always better. As a parent, you want to obtain maximum services for your child to solve a problem or fix a situation. That instinct is totally natural. But sometimes, it’s good to start slow to go fast. “This is counterintuitive for many people. Parents feel as if they’re helping their kids by ‘bombarding’ them—but a child might retreat farther into their shell,” Palmer says. Start simply and small, watching for signs of fatigue and overstimulation. A simplified learning environment with one or two objectives per session is best.
Treat your providers as a team. Therapists, social workers, mobility consultants, TVIs: It’s a lot! EI providers might have distinct specialties, but it’s useful to treat them as a whole, leveraging their strengths on behalf of your child. “When teams are fragmented, you can’t get as much done as when you work together. Find a team that can work together,” Palmer says. To that end: Set regular times for all-provider meetings, cc the whole team on emails, and operate with the knowledge that everyone is working together on behalf of your child. More on that below!
Step Two: Logistics
Create a home file. Maintain a personal family file of your child’s medical history and diagnosis, medical reports, assessments, and an action plan that lists your family’s goals and strategies for EI. Use whatever organizational system works for you.
Collaborate online. Picture a simple, shareable spreadsheet with each provider’s name, contact information, and role. You can attach a diary or notebook listing your child’s pertinent medical information, likes and dislikes, progress updates from each EI session, archived emails, and anything else you want everyone on your team to know.
It’s freeing to have all the information that lives in your head written down elsewhere—and it helps to ensure that your team is on the same page. Lastly, the benefit is mental: It’s a tangible reminder that you have a support system working toward concrete goals. This shared forum could live on Google, Dropbox, or wherever else you feel comfortable updating confidential information.
Create a family questionnaire. You don’t want to have to repeat yourself to every EI provider. Instead, proactively share a document with your child’s name, birthday, visual diagnosis and other diagnoses, siblings and parents’ names, medications, surgeries, likes and dislikes, goals, and concerns. For more on this, we recommend Babies With CVI: Nurturing Visual Abilities and Development in Early Childhood by Anne McComiskey.
Download a sample family questionnaire from Babies with CVI by Anne McComiskey.
Step Three: Suggestions for EI Providers
Ask your TVI to complete a Functional Vision Assessment. Your child’s TVI should complete a comprehensive functional vision assessment (FVA) and write up a detailed report of the findings, which is essential when refining development goals and the interventions needed to attain them. An FVA is an evaluation of your child’s capacity to use vision in various settings and tasks. It should include: evaluation of your child’s current vision, areas of difficulty, body positions or objects that seem to improve vision, and environmental factors that improve or detract from your child’s vision. Babies might get squirmy during the assessment! Make sure it’s done when your baby is well-rested, in a familiar environment, and has time to warm up to the TVI. It might take two or three sessions to get it all done.
When possible, ask your team to embed vision into every activity. If your child is healthy and medically stable, it’s important to make vision an integral part of EI activities, not an isolated one.
“One of the big mistakes people make is: ‘Let’s do vision time!’ Palmer warns. “Your child might be getting visual input from the second they open their eyes until they close them. But it’s the job of EI to make that visual input meaningful. ”
In other words: Explain to your EI provider that you want visual skills embedded into every intervention, unless you notice that your child gets fatigued.
You can redirect the intervention at any time. Using vision can be a hard task, so interventions should also include multisensory access, engaging with items or the activity using touch, listening to sounds and language, or moving around, when vision needs to take a break.
Follow your child’s interests. It helps to share your child’s interests with your providers. Maybe your toddler loves playing with beads. Maybe they love touching scarves. Be explicit with your providers about where your child’s interests lie, and update your EI providers at each new session. Follow your child’s lead. Consistent interventions that dovetail with a child’s natural play routine are more effective than introducing new materials.
Download the Intervention Readiness Chart from the book Babies with CVI by Anne McComiskey.
Maximize Home Intervention Visits
EI time is precious. Here’s how to make the most of your visits.
- Feed and diaper your baby ahead of time.
- Put your baby down for a nap prior to a visit. Participating in massage and exercise play can also help your baby get ready for a visit.
- Keep interruptions to a minimum. Visits are intended to share information, and interruptions can negatively affect available teaching opportunities.
- Reduce or eliminate background noise in your home. These can distract your baby, and parents and teachers.
After the visit, your teacher should explain the interventions conducted, so you’ll know how to conduct them at home. Ask your teacher to post a visit review sheet on the refrigerator so that all family members remember to reinforce activities through daily home routines.
Used with permission of Anne McComiskey; excerpted from Babies With CVI.
Find more resources and helpful information on the CVI Now Early Intervention Series home page.
