Early Intervention (EI) can be a wonderfully supportive framework for the littlest kids with CVI. But, as we all know, so much of life with CVI happens in the smallest moments, when providers aren’t around: making dinner, playing, relaxing, and trying to find some downtime.
It can be overwhelming—really overwhelming!—to navigate life with a baby or toddler with CVI. While you might usually feel like you’re in survival mode, it’s important to find moments of joy—and you can, even if it sometimes feels impossible. It’s also helpful to remember that you are strong, and you’re empowered, too, even when things feel so chaotic and new.
Take it from these two CVI moms and professionals in the field who offered their strategies for organizing your home, keeping your emotional strength, and reaching out when you need it as you begin Early Intervention.
Burju Sari is a TVI and CVI Coordinator at the CVI Center at Perkins School for the Blind and mom to Omer, 12. Lacey Smith is a TVI and CVI Coordinator at the CVI Center at Perkins School for the Blind and mom to Savannah, 10. Here are their tips.
10 tips for navigating Early Intervention
- Let your TVI know how you learn best. Some people prefer to learn by talking and asking questions. Others learn by doing or watching. Over time, Sari found her voice when communicating with her TVI and explicitly asked her TVI for specific strategies and feedback to use for Omer. “A lot of providers like to give you ‘homework’. It’s OK to say ‘no,’ as this is a new and overwhelming experience,” Smith says. Don’t be afraid to ask your TVI to communicate with or teach you in the way that matches with your style. CVI learning is not one-size-fits-all.
- CVI fatigue is real–and very normal! When Sari was beginning her CVI journey, she began to feel “numb” as she navigated providers, EI information, and protocols as she struggled to make sense of Omer’s complex needs. Omer was also diagnosed with cerebral palsy, and wading through so many medical providers was simply overwhelming. “I was numb, angry, and upset. In the beginning. I really didn’t want to accept help. It felt like we had too many people [working with us] already,” she says. This is a very natural feeling, especially because CVI co-occurs with so many other conditions. Sari felt reassured once she began working with a TVI through EI, because this person understood all of the myriad symptoms and challenges that come with CVI. You’ll get there, too. (And remember: This exhaustion can happen for your child, too! “I remember Savannah sleeping through many of her Early Intervention sessions. CVI is fatiguing,” Smith says.)
- It’s OK to make mistakes. Obviously, your TVI can’t be with you 24 hours a day. It’s natural to feel nervous or afraid of “failing” once your TVI leaves. “Never be scared of making mistakes. I was really scared of making mistakes because I was trying to be perfect. My TVI said: “You will learn from your mistakes. Don’t be afraid to make a mistake, because that’s how you learn,” Sari says. Remember: This isn’t a class, and you don’t need an A. It’s real life!
- When it comes to toys and furniture, let your baby take the lead. Sari and Smith both say: Trial and error is OK! Follow your child’s lead. One baby might love solid-colored blankets. Another might adore bright lights. Let your child’s interests dictate your shopping cart. “Savannah was really attracted to light, so we bought her a glittering disco ball,” Smith says. Maybe not your classic childhood toy, but that’s totally OK.
- Know that you’re not alone (even when it feels like it). Resources such as CVI Now offer strategies, advocacy, and meaningful emotional support for CVI families. Social media can be a helpful resource, too. CVI Now Parents is a prominent Facebook group where families swap tips, strategies, and emotional support. Infant-toddler groups for children with disabilities can also provide reassurance and community. “Savannah was the first child that I knew with a visual impairment. She was also the first child I knew with multiple disabilities. Once we became involved with the Infant Toddler Program at Perkins, my world opened up,” Smith says. That said, it’s important to recognize that every family’s journey is unique. Just because a strategy or group worked for one family doesn’t mean it’s right for you, or that you’ve fallen short. “Every experience is different, and it’s OK to think outside the box to find what works for you,” Sari says. “Flexible thinking is important.”
- Acknowledge that it may be hard to trust new providers at first. “As I prepared to leave Savannah in her first Infant Toddler playgroup, I expressed my concern to the social worker and told her I would be more comfortable staying with Savannah and not attending the parent group. However, I ended up just checking in on Savannah and being ‘brave’ like her,” Smith remembers. If you’ve already been navigating a medical maze, you might feel even more nervous. For example, Sari had a difficult birth experience with Omer. Naturally, she felt nervous trusting other providers to come to her home, although she came to rely on her EI team, in particular her TVI. “I think trust is a very real concern among parents of kids with disabilities, and we need to talk about it,” Sari says. Be compassionate and forgiving with yourself, recognizing that a relationship with your EI team, and ultimately a school team, will take time. For instance, “As Savannah transitioned to school, I went with her for the first three days to help others get to know her and understand her,” Smith says.
- Remember: You’re in charge. Throughout your CVI journey, you’ll discover the importance of self-advocacy, and this is the beginning. “You’re driving the bus,” Sari says. Not every EI provider will be a fit—and it’s legitimate to ask for a replacement if you feel uncomfortable, pushed into treatments you feel uncertain about, or unable to speak your mind. Smith remembers a pivotal conversation with one provider who insisted that Savannah was resistant to touch, which she knew wasn’t the case. “But the provider had only spent 30 minutes with her. I respectfully told her: ‘No, she’s not.’” You know your child best; even a well-meaning provider can be off the mark. Speak up when you need to. It’s expected! Smith often searches social media using hashtags such as #CVI to find parents posting about their experiences outside of designated message boards. “You can find so many strong, powerful parents this way,” Smith says. “They know what their kids deserve.” Draw inspiration from them!
- Hold on to hope. Sari drew strength from assurances from her TVI that Omer’s CVI could improve, and she remembered that reassurance during difficult times. Smith drew strength from infant-toddler support groups, where she learned to tune out prying questions or discussions that she just wasn’t ready to have yet. “I was reminded that I didn’t need to please anyone else—that this was my journey,” she says. Find your mantra, your phrase, your hope, and repeat it when life feels overwhelming. If there is one thing that I have learned, it’s to never give up. Keep fighting for your child and always be hopeful,” Smith says.
- Let your EI team help you plan ahead for school. We understand: It might be impossible even to contemplate your baby or toddler heading off to school once they graduate from EI. Happily, your EI team should help you plan for this big transition well in advance, and “having your ducks in a row,” as Smith puts it, will go a long way toward easing your mind. Smith made a “pro” and “con” list when considering various school placements. What works for you? Do you thrive on list-making? Calendaring? Journaling? Find your organizational sweet spot and work with your team to map out the weeks, months, or even years ahead. That’s why they’re there.
- Last but definitely not least: Do the “everyday” parenting stuff! Your CVI journey is unique. Most parents don’t have a child with CVI, which is why support groups are so helpful for camaraderie. That said, you’re still a parent with the same needs as non-CVI moms and dads. Sari wishes she made more time to go to the playground with Omer. She was nervous because of the noise. “But I could have found a quieter playground or a quieter time. But I avoided it altogether—which I regret so much now, because I forgot to be a mom, talking with other parents and connecting with them,” she says. “I put myself in a box.” Don’t put yourself in a box: Get out there! Your family deserves it, and play-based activities and natural routines are so important.
Ready for more resources?
Find more resources and helpful information on the CVI Now Early Intervention Series home page.