Raising a child with CVI and other needs continues to show me that I can do hard things (whether I believe I can or not). As parents of children with a different normal, we are thrown into this arena of uncertainty and vulnerability. We are put on a journey that requires a lot of personal growth. And that’s really hard. As I share my CVI journey, I’ll also talk about the specific moments and people that helped me along the way, as well as what I wish I had advocated for, knowing what I know now.
What is your favorite Brene Brown book? Which book would you recommend, reading first?
My first dive into Brene Brown was her TED Talk on the power of vulnerability. I then started listening to her podcast, “Unlocking Us”, on Spotify. She also has a great Netflix special, “The Call to Courage”. Right now I am reading “Daring Greatly”! Her work is making so much meaning out of my life experiences and helping me show up for what matters most.
Rachel, how do you put the feelings of the fear of hurting the person in front of you aside, when advocating for your child?
It’s wild that parents are put in a role to enforce IDEA, that’s how the law was written. It’s not the position I want to be in as a parent. We never wanted this role. We just want our kids to thrive and have access to high-quality education. It’s almost as if we need to figure out how to be courageous leaders for our kids. That’s a tough question and requires us to step outside of our comfort zone and be vulnerable. I’ve learned that advocacy can take the form of collaboration and problem-solving. I try to affirm the value of what a team member brings to the IEP team. I try to share what I’ve discovered at home working with Henry. I try to share my learning journey. For example, I might say, I watched a webinar about CVI and literacy and I was inspired to try x,y,z with Henry. “ Here’s a video of what I tried.” Then I ask questions of the TVI and other team members. “ Tell me about how you approach a story or how you introduce new concepts. Can we revise Henry’s literacy plan to include some of these new approaches and take data on what he does?” I want to invite as many people as I can to the CVI table and I know I won’t do that by being dismissive.
You can talk to whoever you want about your child. You have a right to connect with professionals to gain insight into your child’s needs. If you come from a place of openness and collaboration when talking with your TVI and providing feedback, then you are honoring the situation and meeting them where they are at. All educators and providers working with our kids need to figure out how to be lifelong learners, collaborate, evaluate and adjust based on feedback and data. Your voice and knowledge matter. Your role on the IEP team is important. Happy to talk more about this!
How do I make sure my daughter is truly getting access to her education and not just “generally” receiving accommodations for CVI?
Ask a lot of questions, go observe, or send an advocate to observe. In the IEP, make sure accommodations and adaptations are individualized and rooted in assessment data. Make sure present level data includes all the conditions during the task (materials, presentation, and environmental accommodations) and goals are built off of this baseline data. Ask your child’s team about the data collection for each goal and objective, and specifically the accommodations and adaptations in place while collecting data on a specific skill or concept your child is working on.
Supports are so much more than just putting up a black trifold. What materials are used to present new concepts? What are the instructional approaches and delivery methods matched to your child’s needs? What is the totality of the environment like? Does the team know what your child’s reliable responses are? How are print and 2D materials presented and adapted? What multisensory approach is in place? What are the assistive technology tools that meet the needs of your child? Is there a plan for an accessible school day that aims to reduce visual fatigue? Check out the video on this Perkins CVI Now page: Accessible and meaningful learning for students with CVI.