While everyone’s holiday traditions differ, the high expectations and level of activity surrounding all holidays and special events can be very stressful, especially if you have a child with a disability or even mild sensory issues. Too often, we set unrealistic expectations for the perfect holiday – think flawless photo, gourmet dinner, beautifully decorated home – trying to live up to something we saw posted on Facebook or Instagram. In the process, we wind up feeling bad because our holiday reality is somewhat different.
It’s key to set aside your previous expectations and focus on what really matters at the holidays – being together with friends and family who accept and love us for who we are. For example, one holiday, our extended family was preparing to enjoy a glossy pumpkin pie so beautiful it was both a dessert and a decorative centerpiece. Instead of asking for a piece, my nonverbal son reached out and raked his fingers across half the pie to get a handful of dessert. After the stunned silence, my family couldn’t help laughing, and we all enjoyed the partially ruined, but wholly delicious pie. Now we have a story we all remember of the year Gavin helped himself to dessert.
The following tips for a joyous – not perfect – holiday will hopefully make things less stressful for all parents, not just those who have children with health conditions or disabilities.
Decorating. One of the first signs that the holidays have arrived may involve traditional decorations – family heirlooms, lights, greenery, and so on. Depending on your situation, modifications due to your child’s allergies, sensitivities, and safety may be important. Instead of a real tree, you may need to select an artificial tree (think of the time you’ll save with a pre-lit version!). Instead of breakable ornaments on the tree, use plastic ones (at least on lower branches), or decorate with homemade, one-time decorations so your tree is unique each year. Consider setting up a train set or special tree in a room where you can close the door or put up a safety gate when you are not able to supervise your child closely. At first, I was sad to think I’d never be able to decorate using the precious (and very breakable) Lenox ornaments from my grandmother, but now my family tradition is to attach them with suction cups high up on windows and mirrors where I can still enjoy them and they won’t be damaged.
Pictures. There are many ways to prepare for a good photo, but even then, remember it may not turn out as you expected – and that’s okay! You’ll have a unique and joyful memory of the experience if you embrace your family’s quirks instead of trying for someone else’s idea of perfect. That being said, if you are waiting to see Santa and snap a picture, here are a few things I’ve learned:
• Have an adult hold your place in line so you don’t overtax the patience of your child and can keep him relaxed during a long wait.
• Volunteer to go last if it’s an event with Santa. You’ll have more time and won’t feel like you are holding up others if your photo takes a little longer to coordinate.
• Make sure your child isn’t too hot or wearing anything itchy. It may even be best to have him wear whatever is most comfortable for as long as possible and then switch to the holiday-specific outfit at the last minute. (Then again, this could be a time to accept that a favorite Spider-Man t-shirt makes your child happy and will create a truly unique and memorable holiday photo.)
• Talk with the photographer to let her know what works to get the best picture of your child. For our family, it’s making silly sounds (a hidden talent of many photographers!); working quickly (the first one or two pictures are usually the best and the more we try, the worse things get); and also accepting that my son may not choose to look at the camera. For us, that’s still a perfectly acceptable and great family photo that makes us happy.
Special Events. Holidays often involve hosting events or going to other people’s homes – maybe even some travel – which requires additional planning and preparation. When you are hosting, there’s more control, since you know what foods are being served, the ingredients of dishes, and how they were prepared. However, you may still have to alert your guests so they don’t thoughtfully bring something to share that could be an issue or lead to an allergic reaction. When visiting, let your host know about any accommodations you need. For some kids, a quiet room to retreat to is essential (did you know that many venues and even theme parks now offer this amenity?).
If you are traveling, make sure to bring the names and numbers for all your child’s doctors, refill all medications in advance of the holidays, and bring at least a few extra days’ supply (always in your carry-on). Also, think about bringing along items that will keep your child comfortable and happy, like noise-cancelling headphones, an iPad, a soft toy, a weighted blanket, snacks, or extra clothes. I travel with a small cutlery set so my son can always have a spoon, which he prefers since it allows him to eat more independently.
Maybe you’ve always had a vision of that perfect holiday. Consider modifying, adjusting, and expanding that vision to be inclusive of the unique needs of your child with a disability and embrace how it can create new holiday traditions and memories for your family. Through it all, remember to ask for and openly receive the help you and your child need; you aren’t in this alone. When you explain to friends, family, neighbors, store clerks, restaurant servers, strangers – and especially, Santa – what you need and why, most people are more than happy to help. Accepting their help with grace allows them to give you a truly meaningful gift, and that makes their holiday (and yours) more joyous.
Photography: Scott Schwartzkopf
