We can do hard things: Insights into the CVI parent journey

During the 38th Annual Perkins Early Connections Conference, Rachel shared a vulnerable speech about parenting a child with CVI that included insights from the CVI community about the barriers they face and keeps us going.

Raising a child with CVI and other needs continues to show us that we can do hard things. As parents of children with disabilities, 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.

In her speech, Rachel shared responses from the CVI Now parent community that provides some insight into the collective journey of families raising a child with CVI, with a visual impairment, with complex needs.

What was the moment you realized that you were going to have to do a lot of hard things raising your child, that this was going to be a tough lifelong journey?

For many, this realization came with an initial diagnosis or even unfolded over a series of multiple diagnoses. For one family, a diagnosis of epilepsy was followed by one for CVI and the need for a wheelchair. For another parent, this moment came with MRI results showing brain damage, followed a month later by a CP diagnosis and then a CVI diagnosis.

“It was on that day that I realized my child has a lifelong disability that will forever impact everything she does in her daily life – and it was going to be a constant struggle and fight for her to access the world around her. Until then, I had been prepared to deal with medical scares and motor delays…but the CVI diagnosis changed everything about her access to the world, education, and future employment.”—Stephanie, CVI parent

For another contingent of parents, the realization came with a big event or a series of events. A big seizure at 2 years old, rushing their 3-month-old to the hospital after a major cardiac event, watching their child go through several brain surgeries all before the age of three, or after a traumatic brain injury before the age of 6 months.

And yet for another group, the realization came during otherwise mundane moments. One family’s outing to a busy restaurant sent their one-year-old with CVI into a sensory meltdown, complete with screaming and hyperventilating, leaving the parents exhausted and heartbroken at the understanding that their lives as parents would not, and could not, be normal.

These moments are part of the permanent layer of grief underlying everything else we are working through with our kids.

“My grief is about loss. For me, it was the loss of the popular narrative of motherhood. The loss of predictable expectations, predictable milestones, and predictable aspirations for my child. And the loss of a life for Henry without the extra challenges presented by disability. Life will be harder for Henry. Unfairly, he will have to negotiate a world not designed for his needs and gifts. Unfairly, he lives in a society that is not accessible.” —Rachel, CVI Parent

Right now, what is the hardest thing about being a CVI parent?

Overwhelmingly, parents responded with the constant need to advocate, learn, be the expert, and teach others about CVI due to the lack of understanding and awareness of CVI. To guide and support the very system that is supposed to be guiding and supporting us.

“I feel like I am the only one that can help my kid navigate and interpret her world in an understandable way because I’m the one who has figured out CVI and did all the learning.” —CVI parent

Throughout this prolonged period of intense personal pressure to take care of our children and carve out a future that has no place reserved for them, many parents feel unsupported by their educational systems.

“The lack of support and direction is very difficult for me. I often feel like I am the most knowledgeable regarding CVI when meeting with professionals, so I am frequently frustrated. I am constantly searching for information on how to help my son. I worry that if I were not so involved, he would not make progress.” —Barbara, CVI parent

The grim irony is that the IEP process itself, intended to ensure adequate care and education for our children, often creates another layer of trauma for parents of children with disabilities. Our children’s needs are, in fact, human needs.

The constant advocacy with school teams in order for their child to have access to an appropriate and meaningful education is a ubiquitous experience among CVI families.

One parent noted: “I feel ashamed that I don’t have all the fight in me that my child needs.” This one hit me deep. The spiral into guilt and shame is real. The fight is so hard. And it does not have to be this way.
Another CVI parent stated, “Plain and simple. Access to any kind of appropriate help in our state.”

Beyond the burden of intense care and relentless advocacy, CVI parents face the uncertainty of our childrens’ future. Parents have shared so many concerns and worries with me about the pitfalls, setbacks, and hurdles that await their children. They ruminate on keeping their child safe and helping them to navigate the world as they grow up.

“The lack of support and understanding of CVI out in the world makes planning transition as my son approaches adulthood an overwhelming prospect. Once again, I realize it is on me to forge ahead, cut new paths and create opportunities for him.” —Delia, CVI Parent

“Concerns with safety, the frustration with not knowing what he sees, how best to help him, the gap widening between him and his peers, and how this affects him socially and academically, the future, and on and on. There’s so much! It becomes exhausting to think about it all!!” —Angela, CVI Parent

It’s not okay that it’s this hard. We need to do better. We need system-wide change.

What gives you hope and what keeps you going?

Hope is found in our kids. In their progress, in meeting those inchstones. Witnessing their happiness and when they learn something new. Our kids are uniquely incredible. They have developed so many compensatory skills to exist and thrive in this world.

“What gives me hope is my daughter’s determination and persistence! She never gives up and she doesn’t feel sorry for herself….so I take my cues from her: no room for pity parties and stay the course. That’s our warrior’s motto! At 17, she continues to find ways to adapt and it lights my soul on fire to keep going with her!” —Candace, CVI Parent

Hope is found in more CVI awareness and commitment to learning about CVI. A parent wrote: “When a provider, therapist, educator, or administrator makes a genuine, educated investment in our daughter’s success.”

Another parent said: “There is SO much more visibility around CVI than there was when my son was diagnosed just 2.5 years ago! That gives me hope. I really believe that CVI will, someday, be well understood, and we will not have to fight so hard for our kids to be supported.”

Hope is found in research and innovation.

“Hope comes from knowing that the brain is like the ocean, we have only discovered and understood a small part of it- which means there is still a lot left to explore: in how the brain works, how neuroplasticity works, and how our kids’ vision works… The speed of technology is making the world so much more accessible to our children allowing them to reach their full potential.” —Gunjan, CVI Parent

Hope is found in the stories of other CVI families. A parent wrote: “CVI groups such as CVI Now give me hope. As I read other parents’ stories of their child’s challenges and successes, it offers connection with others in similar life experiences, empathy, hope, joy, and perseverance to lead this charge together to ensure our kids have access, opportunity, and resources to meet their full potential.”

What do you do to take care of yourself so you can show up for your child with CVI?

When flight attendants give the in-case-of-emergency speech prior to take-off, they instruct you to always put on your own oxygen mask before attending to your child’s mask. This can be broad advice for life.

“Taking care of my own medical needs, exercise, sleep, nutrition, meditation, music, reading for pleasure, and nurturing my friendships and relationships. It takes a ton of energy (mental, physical, emotional, social, spiritual) to parent, so I have learned that I need an extra-large “oxygen mask” that I must wear first to be able to care best for my child.” —Stephanie, CVI Parent

What is your oxygen mask? What do you do to take care of yourself, really take care of yourself, so you can show up for your child?

Rachel shares: I strive to love wholeheartedly and accept Henry for all that he is. I try to give him full multisensory experiences, to be vulnerable in the world, to try new things, even if we are only at a new place for 5 minutes. The brain is ever-changing in response to interactions, experiences, and the demands of the environment. I want him to live fully so he can continue to make progress.

Right now, we are in a big moment for the CVI community. We’re on a precipice of change. There is more awareness of CVI in the medical and educational communities. Even though that change has yet to manifest for many CVI families across the country. We are seeing more CVI research. And the collective voice of CVI families continues to grow.

Every child with CVI has the right to an early diagnosis, effective vision services, and access to appropriate educational programs. Every child with CVI has the right to access opportunities, again and again, that will empower them to reach their full potential. We must support individuals with CVI both holistically and as unique individuals, and build a world where they can shine and live their best lives.

And to do that… we have to keep doing hard things.

Read the full transcript of Rachel’s Keynote Address.