There’s the invitation. Your child’s classroom buddy is having a party. You know what this means: Balloons! Music! Children swirling! Sugar rush! It’s every kid’s dream, right?
For our kids with CVI, we know it’s a little more complicated than that. When you see a party invitation, you may be pleased that your child has social opportunities and friendships. But you also know that the experience will most likely involve:
Parties are by definition groups of people who gather to socialize and have fun. They tend to be lively and bustling. They may be full of people you know – or don’t. People with CVI may not be able to access or enjoy a party environment due to specific visual behaviors, for example:
If the event is being held in a public space and you can squeeze in a pre-party trip, do it! If your child is able to interpret 2D, you may go solo and take photos to share with your child on a tablet, giving her a virtual tour of the space and expected activities. Or if the event will be in someone’s home, ask the parents to snap a few photos for you and provide a rundown of the party agenda. If the activity is new to your child, you’ll want to spend time describing it, trying it out, or reading a book about it before you go.
If you’re like me, you want to know who’s going to be at a party before you arrive. It can be comforting to know that there will be a familiar face, and it reduces the chance of forgetting someone’s name.
Now imagine walking into the party and not being able to recognize anyone’s face. You’re looking for a particular friend, but there’s no way you can find her in that crowd. And the cacophony of voices will make it extremely difficult to pick hers out in the din. That’s what our children experience every day.
It is helpful to talk to your child about who will be at the party in the days leading up to it. If your child is young, you’re probably staying for the event and can facilitate introductions, sort of like this:
“Hi, I’m Grace’s mom. What’s your name?”
“So nice to meet you! Grace, aren’t you glad to see Emma?”
For older kids, it gets trickier. Some ideas:
Before it’s too crowded, take your child on a tour of the venue. Familiarity is comforting. And an opportunity to explore with fewer noises and swirling bodies gives your child an advantage.
Some children will find the sensory inputs of a full-length party confounding. Consider his favorite aspects of a party, and arrive just in time for that experience.
Parent perspective: “My son has two expectations for birthday parties (from experience): pizza and cake. If that is not happening soon after we get to the party, he gets agitated because he’s holding on to the memory to support his access. I usually call and ask when they plan to do the cake during the party, and I make sure to arrive around 15 minutes before. This means that we miss part of the party, but more than 45 minutes of party sensory inputs send him into meltdown mode.”
Just like the candles on a birthday cake, children with CVI can experience a meltdown.
Parent perspective: “Parties were always a disaster for my daughter, she was so overwhelmed. I learned to scope out a quiet place away from everyone where she could go for a break.”
A more seasoned parent once told me that the most annoying person on an airplane is not the wailing child – it’s the parent making a big deal about it! Remember: There’s no need to be embarrassed or apologize. CVI meltdowns are just a consequence of raising our children in a world that is not built for their needs.
We once held a ballet-themed birthday party in our home. Fifteen second graders, arts and crafts, The Nutcracker soundtrack – get the picture? Grace quickly became frustrated by the noise and her rambunctious friends, who wanted to run, not craft. Yes, she had a CVI meltdown. But after all the kids went home, we had the opportunity to discuss what the party felt like to her and what could have made it better. Now I know that it helps to pay attention to her triggers and identify a quiet space to get away from the sensory overload.
Of course, your host is going to commemorate their child’s milestone with photos. And this may upset your child. Many children with visual impairments have photophobia, or are sensitive about not knowing where to look and when to smile for the camera. You may choose to speak to the birthday kid’s parent about this or empower your child to politely decline.
It’s OK to make a quick exit. You may notice your child showing signs of visual fatigue or that a meltdown is imminent. The science shows that there is a neurological and physiological underpinning to this – people with CVI have difficulty processing multiple things at once. A birthday party – with all its novel and complex input – will be demanding for your child. The exertion may mean you have to cut the party short.
Give your child advance notice that the party is coming to an end. For sighted peers, they can observe all those visual cues that others are leaving or notice activities winding down. Sometimes a reminder that we have to say goodbye in 15 minutes will be helpful. Sometimes it won’t! For some kids with CVI, time is too abstract. Tell them the tasks they will do to prepare to leave. “We will leave very soon. You will play your game for a few minutes. I will come over to get you. We will say goodbye to ____, put on shoes and jacket, and go to the car.”
Parent perspective: “My son loves parties. He’s highly social. We just need some extra verbal cues on what he should be doing to help him avoid confusion. Leaving is the tough part for us, which usually results in a meltdown when the party is over.”
The COVID-19 pandemic taught us many new ways to do things. Last year, we permitted my daughter to have one friend over for her birthday. And the response was positive! A one-to-one interaction is calmer and less tiring.
Parent perspective: “For my son’s parties, we have fewer kids or kids he is most familiar with in familiar environments.”
Hosting at home, favorite park, museum or restaurant may be comforting to your child. He or she will feel more confident about navigating the venue – saving up the visual, physical and mental energy to experience the celebration.
Parent perspective: “We have the same party every year. It’s always at our house, we rent a water slide, serve food, sing Happy Birthday and eat cake, then presents if she wants to open them. Having it in at our home and keeping the sequence of events the same helps her handle the chaos of the day.”
The advantage of hosting your own party is that you know exactly what to expect and can design a more accessible environment. Plan for simplicity and have a discussion with your child about the party: The order of activities, who is coming, what it will look like and more.
Parent perspective: “I do a theme with solid plates, napkins, and table coverings. My son previews everything before anyone comes.”
Yes, it seems counterintuitive – but more isn’t always better! A floor cluttered with opened gifts and discarded wrapping paper may be immediately overwhelming to your child. Additionally, children with CVI prefer to look at things they have seen before. Family and friends may be surprised when their gifts are disregarded or completely ignored. Re-introduce the gift in a quiet, non-complex setting. Describe it carefully, and give your child time to explore it. In time, it may become a treasured item!
Parent perspective: “Depending on how he feels, we open a few gifts – never more than one or two. Too many gifts and he loses interest.”
Consider your child’s happy place. What does she enjoy most? It may be possible to plan an experience instead of a party. Yes, this will still take preparation on your part. You may need to call ahead to the venue to learn about its accessibility, preview the experience with your child, and build your resolve to leave when you see signs of fatigue – even if you expected to stay longer.
Parent perspective: “We focus on experiences more than new items: A special train ride to get ice cream, a bus ride to get his favorite kind of dumplings, looking at the washers and dryers at The Home Depot, or a walk to the bakery.”
This year, Grace turned 10. Instead of a party, she decided to have a quiet meal with her grandparents at home and to take a trip to the aquarium with her sister and one friend. We arranged for a tour guide who provided a rich description of the displays and a multisensory experience, through animal sounds, touch exhibits and backlit tanks. She may never request a party again!
It’s my sincere hope that our children will continue to foster friendships that give them the chance to celebrate with others. And when they do, we’ll feel empowered to prepare them for the experience.
Looking for a great gift for a child with CVI? This holiday guide covers selecting the right gift and considerations for how to introduce it to your child – which is relevant for birthdays, too.
Learn more about social considerations for individuals with CVI:
Jessica Marquardt is a CVI mom to Grace, the creator of Kaleidoscope: The CVI Podcast, and works in marketing and communications for a major software company. Jessica is a fierce CVI advocate, a life-long learner of CVI and the brain, and undeniably knows that storytelling has the power to change the world for individuals with CVI.