My husband and I are standing at the kitchen counter with our son and daughter, singing a song in front of the Chanukah lights we have just lit. I look proudly at my beautiful kids, their faces glowing. When they were little, I could have never imagined a scene like this. For years, Max had trouble focusing on activities. He couldn’t sing. He didn’t understand what a holiday was. And now: He’s truly participating. He’s singing in his own way. He has just said “Happy Chanukah!” to us. In fact, the other day at a holiday party he met Santa and told him, “Merry Christmas!” (or as he says it, “errry is-mas!”) and then added, for good measure, “Ho ho ho!”
For families, holidays are often centered around family traditions and typical seasonal activities. But for families of kids with special needs, this time of year is about letting go of holiday fantasies and the way you want things to happen — and finding new ways to celebrate.
Changing my idea of what a holiday should look like started when Max was two years old. He has cerebral palsy, and has challenges manipulating his fingers and hands (CP messes with your muscles). We were at a Thanksgiving dinner, and the other tots were happily munching away on slices of turkey. Only Max couldn’t hold a piece of turkey or feed himself. Besides, he had chewing issues, so he couldn’t even eat a slice of turkey — it was a choking hazard. I watched the other kids. My husband noticed my sad look and knew exactly what I was thinking. “OK, we’re going to make Thanksgiving Mush!” he announced. He plopped some stuffing onto a plate and shredded bits of turkey into it, along with a bit of cranberry sauce. Then he fed it to Max, who loved it. Thanksgiving Mush became our new Thanksgiving tradition.
This is a key part of special needs parenting: rethinking, re-imagining, and redirecting. It’s tossing your ideas of what things “should” be like and embracing a new normal. Yet no matter how well you navigate the other days of the year, holidays can prove especially tricky and disheartening. You want your child to enjoy, like the other kids do. You want to do family things together, like other families do — and like you did when you were growing up. Only it’s not meant to be, and you have to make peace in your heart with that.
Holiday gift-giving posed another challenge. Age ranges on toy product packaging were meaningless, because developmentally Max was on his own track. I still vividly recall the Chanukah when he was four and being so excited to get him a classic Fisher Price See ‘N Say Farmer Says—you know, you spin the arrow to a picture of some cute animal and pull down a lever to make the sound. It was my favorite toy as a tot. Only as it turned out, Max couldn’t pull the lever. Once again, a lesson learned: I had to stop trying to impose my idea of fun on him, and figure out ways to enable him to have his kind of fun. We have since learned to check in with his teacher and physical and occupational therapists for toy ideas.
Over the years, I stopped feeling badly when Max refused to join in a family holiday dinner because the din was too loud for him and his sensory issues, even with noise-blocking headphones on. He didn’t consider sitting in the living room “missing out” — he was content to be somewhere quiet, watching TV, and that was OK. I devised ways to include him in holiday activities. When I made potato pancakes for Chanukah, a traditional food, we’d put some Play-doh around the handle of the whisk so it would be easier for him to grasp and then with my hand over his, we’d stir the batter. If we were going to see a festive display, like the Holiday Train Show at some local museum, we’d show up as soon as the doors opened before the crowds descended — or we’d be prepared to just leave, as often happened, because it was sensory overload.
Come the holiday time, it’s hard not to think about the ghosts of holidays past and what we’ve been through with Max. But what’s spirit-boosting is how far he has come, especially this past year. This year, he sat through Thanksgiving dinner for the first time (and enjoyed his Thanksgiving Mush, as usual). At the party the other weekend where he was hanging with Santa, he downed a whole lot of baked ziti, danced to the music, and generally had a great time. It was his idea to head to our local zoo one night to check out the holiday lights display.
Tonight, though, the scene in our kitchen is flooring me. The holiday of Chanukah celebrates a miracle that happened when oil for a holy candelabra (aka a menorah) that was only supposed to last for one day lasted for eight. Yet right here, in our very own kitchen, another Chanukah miracle has taken place. And now, I will have a happy new memory of the holiday, along with all those other ones.
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