Going to birthday parties is a childhood rite of passage. When you have a kid with cortical visual impairment (CVI), invitations bring a mix of anticipation and dread. Anticipation because you want your child to be included in the first place – just like all the other kids. And dread because celebrations, events, gatherings, parties are a delicate balance for kids with CVI. Birthday parties can involve some of the most challenging characteristics of cortical visual impairment – a party in a new environment (novelty), lots of kids (complexity, difficulty with faces, complexity of array), and energetic little bodies (latency, movement). Add the sounds of a bunch of excited kids and you have one Complex sensory environment. (Roman-Lantzy) Birthdays are a perfect storm for a CVI meltdown.
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At the end of a hectic week, we made it back from a short road trip in time for the birthday party of a boy from school. More than halfway through the school year, this was the first invitation and it was met with a deep sigh of relief and gratitude. Elliott had been in Jasper’s kindergarten class. One week before the party, the mom contacted me. She was aware of Jasper’s challenges and wanted to be mindful of him. The party, with an Olympic games theme, would be chaotic. I told her we could probably catch the last half of the party after our drive back from Portland. We chatted about the plan and games and presents and party favors (“plastic toys with small parts are fine, they just might not be very meaningful to Jasper”). In the midst of a difficult school year, her thoughtfulness about how to include my son was almost too much to bear.
The three hour plus drive home was all about getting my son back in time for the party. With not one minute to spare, we went straight to the toy store to choose a gift, pay and wrap it, and arrived at the party right on time. Our orange car is easy to spot and the birthday boy was waiting at the door to greet Jasper. Four boys, all kids that Jasper knew from school. Four is easily accommodated within Jasper’s complexity of array.
By now, the boys had spent their energy and were focused on Legos, rather than chasing or running or yelling after each other – behaviors that are difficult for Jasper to follow and engage in. Where and how does a boy with CVI enter into a swirling, ever moving, loud mass of kids? How does he make sense of that? The boys were seated on the living room floor among the Legos, mostly arranged in bins according to color. A simple arrangement instead of what could have been visual chaos.
They saved a few games for Jasper, simple games played one at a time and marked with bright colors, easy to follow for my son with CVI. Instructions were supplemented with language from mom.
Calm, low key, all of it was a learning experience, refining how we approach the birthday party. Here are the takeaways:
Resist your urge to always be on time, by arriving late. The kids will have less energy, which means less movement, less noise, a less complex sensory environment over all.
Identify who is at the party. The complexity of array may not always be within your child’s range or your control but you can choose a small number of kids to focus on. For Jasper that means eight max, so four was a very doable number.
Take breaks when your kid needs it, or before he needs it. By prearrangement, have a small quiet area ready someplace where your child can get a visual break.
Talk with the parent or host in advance. If they know your child, chances are she is aware he has challenges. Jasper has a hard time with more than six kids at once so we will focus on the few kids he knows here; Jasper sees differently than you and sometimes does not recognize his friends, so it always helps to say your name. Jasper is afraid of dogs, especially small, yipping, unpredictable, fast moving dogs in his lower visual field (movement, latency, preferred visual fields, Roman). On this point, Jasper has learned to advocate for himself and the first words out of his mouth were, Do you have a dog? I’m afraid of dogs. Turns out, Elliott is allergic to dogs, which was perfect.
By the end of the party, there were no shutdowns, no meltdowns, no “behavior.” Just a group of boys playing together. As we got ready to leave, the mom said to me, “Elliott insisted on inviting Jasper, I told him that Jasper might not know how to play some of the games and Elliott said – ‘Jasper can do anything we can do. And if he doesn’t know how, we’ll teach him.’” All I could do was blink back tears. Why couldn’t everything be this way?
“Jasper can do anything we can do. And if he doesn’t know how, we’ll teach him.” This should be our approach to all kids who have cortical visual impairment.