Category: Uncategorized

Introductory CVI Reading (For Parents or Professionals)

So, someone you know has received a diagnosis of Cortical Visual Impairment (CVI). Or perhaps you suspect a CVI diagnosis, despite medical and/or educational professionals refusing to put a name to the condition…. But what is CVI? And how can you learn about it?

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I wish I could say that the pediatric ophthalmologist sent me home with some medical literature to read through on the day she diagnosed my daughter with CVI. She didn’t.

I wish I could say I was given a pamphlet or card with a list of resources that would teach the basics of what I needed to know. But I wasn’t.

Unlike every other time my daughter has been given a new medical diagnosis, I was sent home empty-handed. No written medical information, no leaflets, no book or website recommendations. Nothing but a diagnosis – and instructions to wait for the state agency to call about setting up vision services once they received the doctor’s referral.

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“Rosalie, Small but Mighty” (Interview on Kaleidoscope: The Cortical Visual Impairment Podcast)

Do you know Parent CVI Advocate Jessica Marquardt? If not, you should! In 2018 she launched Kaleidoscope: The Cortical Visual Impairment Podcast, where she discusses the growing public health crisis within the world of vision impairments (spoiler alert: it’s CVI!), sharing stories of neuroplasticity and visual perception.

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Jessica launched this much-needed podcast the same month my daughter, Rosalie, was diagnosed with CVI – so listening to Kaleidoscope has been an integral part of my journey as a CVI parent. I have eagerly devoured each new episode, taking heart that I am not alone and gaining insight, tips, and inspiration from others directly impacted by CVI. When Jessica asked if I would sit for an interview I felt honored and, of course, said yes!

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Celebrations and CVI Strategies

We recently celebrated a big milestone in our daughter’s life: she has been surgery-free for an entire year!!! Because Rosalie has a brain condition called hydrocephalus, she had surgery to place a piece of hardware called a shunt (which manages the condition) at two days old. Unfortunately, shunts are notorious for having complications; 40% of shunts fail within a year, 50% fail within two years, and 80% fail within ten years. Rosalie’s first shunt developed an infection and her second malfunctioned. They say the “third time’s the charm,” and we are so happy that this 3rd shunt has lasted an entire YEAR without complications!

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This 1-year “Shuntiversary” called for a celebration – but those of you that have children with Cortical Visual Impairment (CVI) know that parties come with some challenges.

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14 More Gifts for a Child with CVI

In recent weeks I have shared my daughter’s 10 Favorite Light-Up Toys and some holiday activity, gift, and dollar store ideas for children with Cortical Visual Impairment (CVI). But, I feel compelled to build on these posts and share some wonderful new items because my daughter, Rosalie, just received several Christmas gifts that I have been able to seamlessly incorporate into her everyday life with CVI – in play time (the best therapy!), bath and dressing routines, scheduled therapies, and when we are on-the-go (car rides, stroller rides, medical appointments, etc.).

I hope this list of 14 “CVI-friendly” gifts sparks some ideas for those of you seeking holiday, birthday, or “just because” gifts for your loved one(s) with CVI.

FYI: Rosalie is currently in Phase II CVI, is 15 months old, and is not fully mobile (but can roll/do tummy time and is working so hard on sitting independently and the pre-crawling “quad” pose). Some of these items may be more appropriate if any of these things are also true of your child with CVI, but some can be used by a child of any ability in any of the 3 Phases of CVI. Without further ado, here are 14 fantastic gifts my daughter received for Christmas.

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10 Favorite Light-Up Toys

One of the ten characteristic visual behaviors of Cortical Visual Impairment (CVI) is “light-gazing and nonpurposeful gazing.” Practically speaking, this translates at the most basic level to “attention to light.” My daughter, Rosalie, is at a point on the CVI Range where she does not need light (or low lighting) to visually attend to things, but lights can still be hugely beneficial for her visual attention. So, today I’m sharing some of her tried-and-true favorite light-up toys!

Because the multi-sensory input of lights AND music playing at the same time can be too complex for some children with CVI to process visually, I’ve broken down the list into the categories of “musical” and “non-musical” for easier reference. Fair warning, though: Rosalie LOVES music (it’s one of her favorite things), so this list is heavy on the musical light-up toys. And speaking personally, I cannot handle toys that make a bunch of obnoxious sound (Goodness knows my 3 kids make enough noise on their own!), so almost every musical toy we have plays classical music – because that is one thing I can handle (and even enjoy) listening to over and over and over and over….

MUSICAL LIGHT-UP TOYS

1. Baby Einstein Glow and Discover Light Bar Toy

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