Everyday Advocacy (Our Story + Tips)

I created Everyday CVI to share the ways our family embeds CVI strategies into our everyday life, so most of what I write will focus on tangible items and how we have used them specifically. However, I have found my free time tied up lately as I have been taking care of some other “everyday CVI” work that all CVI parents need to address on an ongoing basis. I’ve been in the trenches of CVI advocacy.

It recently dawned on me that the practical ways in which I have been advocating for my daughter to receive appropriate vision services is very much a part of our “everyday” with CVI…so why not write some of it down to share with others? As always, I cannot promise that anything I share here will be relevant or helpful to any reader’s specific situation, but at the very least I hope that sharing our story’s recent progress will serve to inspire other parents to NEVER STOP SEEKING THE APPROPRIATE RESOURCES AND/OR ACCOMMODATIONS YOUR CHILD WITH CORTICAL VISUAL IMPAIRMENT NEEDS.

Let’s start at the beginning, shall we? I’ll do my best to summarize our CVI advocacy journey thus far with a few practical suggestions thrown in the mix.

My daughter, Rosalie, was diagnosed with Cortical Visual Impairment (CVI) by a pediatric ophthalmologist in May 2018. Thankfully, her diagnosis was straightforward. Rosalie was born with hydrocephalus, a brain condition in which an excess of cerebral spinal fluid (CSF) builds up in the brain’s cavities (called ventricles), potentially placing harmful pressure on the brain. Because 1 in 3 children born with hydrocephalus also have vision problems (increased CSF pressure can damage the optic nerves, occipital lobe, and basically any part of the brain in a case as severe as Rosalie’s), it is best practice for the specialists involved to automatically arrange a visit to the ophthalmologist. We went to the eye center at our daughter’s hospital where she sees all her specialists, so they had easy access to her abundant MRI records. Her eyes are perfectly healthy, yet she displayed many characteristics of CVI, which makes sense with her medical history.

My new favorite t-shirt. Get yours here!

In short: the eye doctor gave us a diagnosis, briefly explained a little of what CVI is, and (the part that TOO many specialists get wrong!) accurately informed me that because it is neurological, it can improve with proper interventions that help the brain “learn to see.” She added “legally blind” to Rosalie’s list of diagnoses, explaining that it would give us access to our state’s vision services. She sent a referral to the agency so they would contact us.

We were (thankfully) given scientifically accurate information and properly connected to the appropriate state agency, which I quickly learned is (unfortunately) rarely the case for the vast majority of CVI parents…! Still, no matter how good your specialists are I would say my #1 Advocacy Tip is this: do your research!

I left the eye doctor armed with some essential knowledge to parenting a child with CVI – yet I would consider that information the bare minimum! Because of the doctor’s words combined with hours of research I did, I was able to immediately begin embedding CVI strategies into Rosalie’s routine, knowing that it could be weeks before the state agency called me.

While I was waiting for the vision services agency to process the referral and set us up with a teacher for the visually impaired (TVI), I took it upon myself to directly contact them and speak with their intake coordinator. I asked her all kinds of questions about their TVI qualifications, confirmed that there was only one Perkins-Roman CVI Endorsee in the agency (not in our part of the state), and took copious notes about the local vision impairment (VI) community and resources. I spoke with her for 45 minutes and she was a wealth of knowledge, y’all. Which brings me to my #2 Advocacy Tip: don’t be afraid to reach out; there are no rules saying you have to wait to be given information – just go out and find it yourself if necessary!

And my #3 Advocacy Tip: ask questions to anyone that might have some knowledge you don’t – even if you’re not sure what that knowledge may be! There are countless times throughout the past year I have said, “I’m not sure what questions I should ask. What do you think I should know?” If you keep asking everyone all the time, eventually you will learn something that might be relevant to you.

Because I had confirmed that the state agency would not be conducting a CVI Range Score to assess Rosalie’s vision, my husband and I sought out the other Perkins-Roman CVI Endorsee in our state and paid to have her assess our daughter. We felt that it was imperative to gather as much accurate information specific to Rosalie ASAP, so we could use that knowledge ourselves and share it with all her early intervention therapists.

I met our state-assigned TVI, she performed their functional vision assessment (completely inappropriate for a child with CVI, but they have their protocols….), and based on that she offered us vision services once a month, maybe twice. Meanwhile, the Perkins-Roman CVI Endorsee had stressed the importance of weekly services if possible, so that’s what I asked for – to no avail.

Before we began services with the TVI we had a sit-down with my early intervention services coordinator to discuss everything – because I would not readily agree to once/month vision services. In that meeting I advocated for everything I could think of to make sure Rosalie received appropriate services – from asking if the endorsed CVI professional in another part of the state would drive to us, if they would contract in the local (private) endorsed CVI professional that performed Rosalie’s CVI Range Score, what the TVI’s experience was with CVI, what kinds of specific CVI trainings she had received and would be receiving, if she would be willing to take some online CVI courses from Perkins School for the Blind, to asking if she had plans to get endorsed in CVI. She claimed to have so much “training” about CVI, but clearly stated she could not perform a CVI Range Score and that she would not be comfortable doing that – which prompted me to ask at what point would she be capable of performing the ONE appropriate vision assessment for my daughter. I was not at all “aggressive,” but I clearly stated my concerns and pretty much forced the TVI to admit what she could (and could not) do for my child so we were all on the same page.

In the end the best I was given was two sessions a month, but it was becoming clear that anything more from the TVI would probably not be too helpful since I was already doing much of what a TVI would advise us to do.

Fast forward a few months, and I was feeling like our sessions were pretty much a waste of time – except for the resources the TVI would bring us (like a light box – hooray!). So, I spoke with my services coordinator and asked AGAIN if we could have a different TVI with more CVI experience. We hashed out a game plan of first asking for someone new, decreasing services to once a month if the agency kept the current TVI on our case, but putting it on record that if there is any way in the future to ever have someone endorsed in CVI (or simply with a lot of CVI experience) assigned to Rosalie that I was asking for it.

Now, here’s where it gets REALLY interesting.

A few days later our TVI came for Rosalie’s vision session. She had spoken with my services coordinator and her supervisor, so she was all caught up. She explained that her supervisor was not going to reassign her at that time (and offered to let me read her supervisor’s reasoning for that decision), but she began listing things they suddenly COULD offer Rosalie: the Perkins-Roman CVI Endorsee within the agency could travel to perform Rosalie’s future CVI Range Scores (and could even come out and shadow our TVI’s next session/provide tips/meet Rosalie) and she stated that the TVIs in the state agency would “all be getting endorsed,” but only two at a time – and she gave me the names of the two currently working on the endorsement. Plus, she would be watching a recording of an online Perkins School for the Blind course on CVI over Thanksgiving break. AND she had read through Rosalie’s second/updated CVI Range Score (that we again paid out-of-pocket for by an endorsed private professional) and clearly stated one specific thing that it made her realize she had been approaching incorrectly with Rosalie – and that she would work on changing her approach accordingly.

My other new favorite tee! #advocatelikeamother

So…all of a sudden things went from a whole bunch of “no”s and “we can’t offer that”s to “here’s what we can do” that would actually be appropriate for your daughter(!!!).

Now, I’m not claiming that I single-handedly brought about this kind of change within a state-run government agency within a few months. Some of these things were probably being worked on behind the scenes for months before I came on the scene, but most of them would never have been offered to me if I had not asked – twice. 

I’m happy to say that we are moving in the right direction – but I’m also sure that I will have to keep touching base with the powers that be to ensure my daughter is being offered the most appropriate services they can provide as the landscape of the VI world and their agency continue evolving to (slowly) better accommodate our CVI kiddos.

The bottom line with CVI is that, as a neurological-based vision impairment, our children can and should be continually moving forward. But, we cannot do that as efficiently without the proper resources and strategies in place – and, unfortunately, as parents WE are typically the ones that have to seek these things out for ourselves.

I like to think that I saw a 180 degree change in my state agency’s approach in only a few months because there are several CVI parents that have advocated before me (at some point someone will be the proverbial straw that breaks the camel’s back, right?). And I hope that by advocating for Rosalie it will pave the way for future CVI parents in my area to not have to push so hard to get appropriate services. I envision a future in which CVI parents no longer have to FIGHT for a diagnosis, qualified professionals, or appropriate services – because the medical and educational communities will finally be wholly on board and equipped to work with our kids, helping them successfully harness neuroplasticity and gain as much visual access to the world as possible.

We will only get there if each one of us does what we can to advocate and raise awareness wherever and whenever possible. After all…

advocacy thread

…one parent can be written off as “a fruitcake.” But there is POWER in numbers. Please keep advocating for your CVI warriors! I promise to do the same.

If you’re interested in joining a collective advocacy movement around CVI, please check out the Start Seeing CVI Advocacy group on Facebook.

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