By Bridget Rosebeary
The holidays have always been a time I’ve looked forward to. As a kid there were traditions my family had that I cherished. Picking out our fresh Christmas tree from one of the many tree lots that popped up around town, eating tamales at my grandma’s house on Christmas Eve, and driving around town to take in the best light displays. It always felt like a hopeful time of year, and I loved spending time with family and friends.
When my husband and I found out we were expecting our sweet little boy Grey, I imagined all the wonderful, fun filled traditions we would share and start as a family. I couldn’t wait to bake cookies with him and set them out for Santa or have a huge pile of wrapping paper thrown about on Christmas morning and see the joy and wonder on my little boy’s face when he woke up to see the big guy and his reindeer had come to visit.
As any new parents are when they have their first baby, we had no idea what was coming or what life would really be like with a child much less a child with a rare brain disorder (hypoplasia of the corpus callosum).
Since having Grey we’ve had to learn how to adapt. Toss our expectations to the wayside and lean-in to what our little boy actually needs. Sometimes, that’s a quiet place to open a few presents at a time, or to eat his own familiar meal instead of the family Christmas spread. I can’t lie. It’s hard sometimes to not get to live out my idyllic Hallmark family holiday. And yes, there are times when tears are shed. Knowing you can’t experience the festivities quite like everyone else can be hard and sometimes isolating.
However, here are a few things we try to keep in mind when maneuvering the holidays so we can enjoy them in our own special way:
1. Manage and set expectations (yours and others)
Traditions you’ve always had as a child or family may not look the same. And that’s ok. Sometimes you have to say no to things. It can be helpful to let family and loved ones know what you and your child are comfortable with and explain that things make look a little different than they have in the past or what they’re used to.
I knew I wasn’t going to be an Elf of the Shelf kind of mom, nor would my kid appreciate the tradition. Mostly because my expectation for the little elf dressed in red would be nothing short of a perfectly curated Pinterest board of shenanigans and eye pleasing Instagram feed of images. Something I understood none of us could live up to.
Take an inventory of what traditions you want to form with your family and evaluate how they might work, or not. You might even need to make small modifications to suit your child and their needs. Altering traditions and situations so you and your child can both enjoy them will make for less stress, tears, and frustrations.
Grey has always enjoyed seeing Santa and taking a picture with him but driving through a Christmas light display might as well be torture. Inching forward in a long line, strapped in a car seat with no iPad is not Grey’s idea of a good time. But, getting out and walking around to see the lights can make for a more fun time for everyone. Or forgoing the lights all together and reading a fun Christmas book is right up his alley.
3. Tailor your child’s holiday cuisine to them
Sometimes bringing your child’s own plate of favorite fare can alleviate the stress that can come with family dinners. You may love holiday ham, Christmas lasagna, or Hanukkah matzo ball soup but your ACC’er might just rather have their tongue fall off than have any of those foods come anywhere near their plate or their mouth. If Aunt Ruth brings her famous Jell-O mold and it’s a smash hit with cousin Eddy, that doesn’t mean we’re going to force our child to “take one bite”! Most likely he’s not going to be up for trying it, and who can blame him? It’s probably loud, we’re not somewhere familiar and he’s most likely over-stimulated.
4. Have a quiet place
Sometimes too much noise and unfamiliar people can prove to be overwhelming. Identifying a safe place your child can retreat to when they are overcome with sound and the crowd can help them feel more comfortable. I’ve found it helpful to ask the host if we can arrive a little early before all the other guests arrive so Grey can become more relaxed with the space and see each guest as they come instead of walking into a jam-packed, noisy space of strangers.
5. Keep a familiar favorite on hand
For Grey that may be an iPad or a favorite toy car. It could also mean bringing his blankie if we know we are going to be out late close to his bedtime. We all love the comforts of home and having a few items that are soothing and cozy to your child can help when they aren’t feeling sure.
6. Remember you are not alone
One of the hardest things about being a parent or caregiver to a child with special needs is that it can feel isolating, especially around the holidays. Sometimes we must remind ourselves that we aren’t the only ones that are going through challenges during all the hustle and bustle. I know personally it’s been a huge comfort to connect with other DCC families through Facebook groups, the NODCC, and my local special needs community. I can’t tell you how great it feels to get an encouraging message from a fellow mom, or even an “I’ve been there” text.
Navigating the holidays can be tough. Counting our blessings and adjusting where we need to can make them less so. Trust me, there will be moments when I am covered in ingredients from a holiday baking craft, or swiftly carting my screaming child out of a line or cradling my sweet boy in a quiet room missing out on the adult conversation in the kitchen. Expectations will need managing and adjustments will need to be made and I’ll forget or ignore what I’ve learned and try to drive through the hour-long light display anyway. But I’ll take comfort in knowing I’m not the only one.
Our kids are special, and the holidays can be too if we can remember what is truly important and just say no to the Elf on the Shelf.