Tips and Considerations to help your child with CVI this Fourth of July
Holidays and celebrations can be an exciting time for family and friends to come together. When your child has CVI, additional thought might need to go into attending such events. While the flashes of light in the dark sky might be engaging for some, the celebration as a whole may be overwhelming. Novel environments, unfamiliar faces, complex sensory environments, too much movement, these and many others may cause your child with CVI to visually shut down or have a CVI meltdown. With the Fourth of July around the corner, the following information can help your child with CVI have an enjoyable and comfortable celebration.
Where are you celebrating?
Are you staying home, visiting a friend, or camping? Even if you are going to a familiar place on the Fourth of July, for example an Aunt and Uncle’s home, things may look different. When we visit unfamiliar places for our celebrations, or familiar places that now look different, the novelty can become overwhelming for some children with CVI. To help your child, bring some favorite toys along, particularly items that are very familiar to your child. The items you bring should be something your child can easily access regardless of additional sensory input, given that your Fourth of July Celebration may be louder than your child is used to.
What will your child do to communicate their wants and needs?
Your child may have several forms of expressive and receptive communication strategies. Bring any communication devices with you to ensure your child has a way to participate throughout the day! By bringing potential augmentative communication devices, your child will have the opportunity to have more communication partners and increase social engagement during your celebration. Further, those that are familiar with your child’s body based communication should watch for these signals. Your child may be using this most commonly used form of communication to express their wants and needs, but not all communication partners will be familiar with what your child is trying to express. Children will rely on those familiar to them to help ensure their wants and needs are met.
What will happen when you get there?
Talk through what to expect prior to going to your Fourth of July celebration. First we will eat, then we will play, next we will watch fireworks, making even a generic plan can help your child feel less overwhelmed. Use the receptive communication mode that works best for your child. If your child responds to visual aids, you can create a teaching story about the day with symbols, objects, or photographic images. If your child prefers to listen without visual aids, this is okay too. Prompt as you tell them what will happen next. Whatever method you choose to use, simply talking to your child about what to expect will help them understand the day as it unfolds.
Who might be there?
If your child is able to view some faces, preview the familiar individuals they might be able to recognize when they attend the celebration. Are faces still too complex for your child? What modality do they use to compensate for their vision? If they listen for the person, preview voice recordings of the known individuals who will be at the celebration. Use what is already familiar to your child about those individuals.
What can be ahead of time to prepare your child?
Will it be inside or outside? What kinds of decorations might we see? What will we do there? What visuals would be valuable for your child to participate in those activities? In addition to previewing people at the celebration, take pictures ahead of time if possible or even visit the location if you aren’t traveling too far. You can reduce the visual clutter from those photographs using resources like remove.bg, powerpoint, or an eraser app on your phone/tablet.
If you do not have the ability to preview pictures ahead of time, utilize a backlit device while at the celebration. If it would be helpful to your child, take pictures of important visuals and landmarks upon arrival. Take your time to introduce these visual inputs to your child using the visual accommodations that work best to your child’s needs
Another great example of previewing the expectations with your child is to hold a small cookout similar to your expected celebration the week before the real thing. This can be great practice for the Fourth and help familiarize your child with some of the sensory experiences to expect during the celebration.
How does the sensory environment impact your child?
Whether it is the fireworks at night or just the chatter of so many people, be aware of the sensory environments and its impact on your child. You could block excess noise, by providing your child with swimmers ear plugs or noise cancelling headphones. If your child is overwhelmed by the extra sensory inputs at your fourth of July celebration, these might help minimize the intensity of these sounds. Note that not every person with CVI dislikes the sounds of fireworks, but plan for the most difficult scenario if you are unsure how your child might respond.
Remember sensory input can be more than what your child hears. Your celebration may present your child with new sights, sounds, smells, tastes and textures. It may help if he/she is provided with familiar food and drink.
Additionally, consider how often they are being touched. Is your child receptive to hugs from friends and family? What smells are in the air? In addition to the smells of foods, does anyone have a strong cologne that could impact your child? Is there a campfire lit? If the situation becomes too intense – during fireworks, for example – he/she may need to leave. Coordinate an escape route and make plans for possible contingencies.
When we add these elements of visual complexity we will often increase our child’s time for latency. Sometimes timing is out of our control when we attend a celebration. If this is the case, if we are not able to provide our child an environment that is realistically accessible using their vision, we might need to consider providing our child with more auditory and tactile access than we do in their normal routine.
Give yourself and your child a break.
Celebrations need to be enjoyable as much as possible. Upon arrival, take a moment to consider a safe place where your family can have a moment together with less sensory inputs. Prior to your Fourth of July event, talk to your child about how they can request a break. You may also want to discuss with those closest to you how often a break might be needed. Remind each other, it is okay to slow down and take a break if it is needed. Watch for your child’s signs that they need a break.
Additionally, upon arrival, you could set up this space with a blanket in the grass, somewhere your child can be most comfortably positioned as well. This special place can be used for breaks and restoring your child’s need to feel safe. Many of the previously mentioned suggestions such as bringing a highly preferred toy or previewing images, would be great to do in this safe place.
Help your friends and family see your child for the beautiful human they are! Those who do not spend time with you on a regular basis might not have any clue why you have to do all that you do. Sometimes our closest friends and family can be unsure how to interact with us or our child. Take the time to educate a family member or two. Help them learn about your child’s favorite things to do, what is your child good at. As a caregiver for this child, take a few moments to brag about your child’s victories and celebrate them with those closest to you!
Last but certainly not least, trust yourself. If you are taking the time to participate in online research about this child, they are clearly important to you. You are doing a good job. Keep up the great work. Most important of all is for this child to feel loved and safe. If you are meeting those needs, you have created the most successful experience regardless of what you and your family do this Fourth of July.
Stay safe, and have fun!