The essential self-care guide for CVI parents

Caring for a child with CVI is hard. Here are some ways to take care of yourself, so you can sustain through this tough parenting journey.

A young girl in a wheelchair handing flowers to her Mother

By now, you’re probably used to explaining CVI to friends and family. And we get it: Even well-meaning questions and advice can begin to grate.  It’s stressful enough tending your child’s care, and it’s even tougher to try to manage other people’s reactions and commentary. We can’t control other people’s behavior, but we can control our own reactions.

Here’s some advice:
  1. Practice self-care. Caring for a child with disabilities is tough. Schedule time for yourself—whether it’s exercise, a night out with a spouse or friends, a regular visit with a therapist. When you’re rested and centered, it’s easier to navigate sticky situations. Make sure to build in this personal time daily, even if it’s a ten-minute walk around the block.
  2. Protect your own emotions. Sometimes, advice might come across as critical. People might ask why you aren’t seeing a certain specialist or treat your child’s CVI meltdowns as a discipline issue. Try not to take it personally. Remind yourself that you’re doing the best you can. Unless they have a child with CVI, they can’t fully relate.
  3. Remember that you know your child best. When someone offers well-meaning advice, make sure not to second-guess yourself. A simple “thanks so much” or “oh, that’s interesting!” is all you need to say when someone offers an opinion. You may also find yourself in situations where you have to speak up for your child’s needs (IEP meetings, medical visits). You are the expert on your child. What you have to say is important—your words and questions matter.
  4. Keep a stockpile of quick responses. When you’re on the receiving end of unwanted commentary, have a few ready-made replies set to go: “Thanks, I’ll look into that” or “I’d prefer not to discuss this anymore” are perfectly fine ways to close out a conversation.
  5. Look for commonalities. It’s human nature for people to seek out differences. A fellow parent might comment that your child has trouble stepping or seems unfocused or tentative. Whenever possible, look for similarities: Do both of your children love the same music? Have a passion for Big Bird or Elmo? Emphasize the ways that your kids are similar; reinforce that your child with CVI is also simply a child—not a diagnosis. Focus on what she can do.
  6. Don’t apologize. If your child has a meltdown or needs special attention in a public setting, don’t feel sorry. While it’s essential to set clear boundaries with kids, it’s also crucial to remember that kids with CVI fatigue easily and get overwhelmed. Their reactions have nothing to do with your skills as a parent; it’s a component of their diagnosis. You don’t owe anyone an explanation. And you don’t have to be a lone warrior. Ask for help when you need it, even in the heat of the moment. For one mom’s story, read Our (very public) CVI Meltdown.
  7. Be prepared to repeat information. As you meet new people and as you navigate the gauntlet of medical, therapeutic, and educational providers, you will most likely share your child’s story over and over again. It can be extremely exhausting to recount all that you’ve been through with your child. There will be times when you just want to meet someone who “gets” your kid and “gets” CVI. Find a way to share information in an efficient way that takes up the least amount of your emotional energy.
  8. Remember—you’re a parent and more. You’re a human being, too! Feel empowered to shift the conversation to hobbies, current events, or whatever you want to talk about. Balance is key. Encourage conversation about other things, and stay engaged in your own interests.
  9. Find sustainability. You might feel a sense of urgency when it comes to your child’s vision. Knowing that there is an expectation for functional vision to improve, you don’t want to miss one moment to help your child. You might feel the need to be the OT, PT, SLP, and TVI, especially when the medical and education communities still have a lot of catching up to do. It’s OK to take a step back and simply be a parent. Whenever possible, keep it simple and fun. Don’t exhaust yourself.
  10. Choose one thing you can do today. When life gets overwhelming, start small. Choose one thing you can do today: Maybe it’s calling a friend, reaching out to a support group, or just going for a walk. Whatever you choose, it is nourishing and restorative for you. Even small actions can lead to finding calm and balance throughout the day.

Most of all, remember that you’re only human. You can only do so much. We’ve been there, too, and these situations really do get better and easier. But also know we get that there’s always something next and the uncertainity of a path forward is scary. You’re not alone.

What’s one thing you’ll do today? Share your answer in our CVI Now Facebook group!

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