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!
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.
Naturally, we felt like hosting a HUGE bash with all our friends that have been there to support us throughout all of Rosalie’s medical emergencies and new diagnoses – but we didn’t. Why? Well, we wanted this celebration to be something Rosalie could enjoy.
We wanted to take her CVI into consideration and design a day of celebrating that would not overwhelm or visually fatigue her.
Note: We COULD have invited a large amount of guests (and perhaps we will in future years!), but that would have required different strategies that we just didn’t have the energy or desire to implement with Rosalie’s current age, developmental needs, and where she is at on the CVI Range.
Here’s how we did it, using the Ten Characteristics of CVI as guiding principles:
Taking into consideration the CVI characteristic of novelty, we decided to celebrate at home. Rosalie is only 16 months old and is not yet fully mobile, which means being at home is automatically more comfortable than going somewhere in public, allowing her to stretch, roll, or work on therapeutic exercises with her own equipment and favorite items. A low-key event at home offered the greatest comfort and visual familiarity.
2. Time of Day
Taking into consideration the concept of visual fatigue, we wanted to celebrate earlier in the day rather than later. By dinner time Rosalie has had a full day of both free and directed play, as I constantly work on improving her strength, motor skills, and visual functioning. We opted to do our main celebration during the lunch hour, which would naturally be followed by Rosalie’s nap time in case she got worn out.
3. Guest Numbers
Taking into consideration the CVI characteristic of complexity, we ultimately settled on a small, family-only celebration. Yes, it would have been fun to invite a handful of friends, but even a few of our family friends would mean an extra 6 adults and 10+ children. That many guests may be doable in the future, but right now the complexity of visual array, so many different faces, and the sensory environment (do you know how LOUD 10-15 young children can be?!) would have been so complex that there’s no question in my mind Rosalie would have melted down. It wasn’t worth the girl we’re celebrating breaking down in tears and/or needing to have some quiet time in a separate, calm room during a party.
4. Decor, Activities, Food
Again taking into consideration the CVI characteristic of complexity, we opted to keep things very simple. Decorations were minimal, in one room, and we ate a typical lunch with some special cupcakes for dessert. Easy peasy!
Thinking also about the characteristics of color preference and need for movement, the main way I chose to decorate was with a handful of shiny, gold balloons (mylar balloons have reflective surfaces that create the illusion of movement). I made Rosalie a special onesie for the occasion and used pink and gold fabric pens, so everything I chose to decorate with was either bright pink or yellow/gold.
BONUS! Our kids have been enjoying the mylar balloons for days. I gave one to each of Rosalie’s big brothers to play with and cut the strings on the rest, placing them around the ceiling above Rosalie’s toys in the play room. It’s fun to choose decorations that the kids will keep having fun with long after the party. 🙂
The ways in which children with CVI will be able to enjoy celebrations (whether you’re hosting or attending) will vary greatly according to their unique needs. But, we can do our best to try and optimize their participation and enjoyment by approaching any event through the lens of their CVI (and any other relevant medical needs or disabilities).