Growing up, I loved the hustle and bustle of the holidays. I remember begging my mom to go to the crowded mall where I’d sit on Santa’s lap and make a mental list of all the goodies I hoped to receive that year.
I used to stay up late on Christmas Eve, baking cookies and searching the skyline for a sled. I used to open presents at a warped speed and eat warm coffee cakes twisted into the shape of snowmen.
Christmas for me was controlled chaos, and I loved it.
And as equally as I loved the presents, I loved the people. I always imagined one day I’d have a house full of hustle too. Then I had two children with autism.
There are some really incredible gifts that come when you parent children with special needs, but unscheduled, unplanned, sensory-overload chaos is not one of them. For the past six years, our Christmases have been quiet. The holiday season, life, looks a lot different from what was in my head.
But the miracle of special needs is this: when you trade expectation for appreciation, incredible beauty awaits. So here are some things to remember, should your holiday as a special needs caregiver not feel merry and bright:
Christmas Miracles Can Happen Anywhere
The first four Christmases of my son’s life, he hid in the bedroom. Not a single present unwrapped. Last year, he opened his first gift and spent all day playing with it.
During the month of December, I used to have to put sunglasses on my daughter at night in order to keep the Christmas lights out of her eyes. This year? She helped me decorate our tree, twinkling, bright fluorescent bulbs and all.
Our milestones may take longer, or look different, but they are there. There’s no greater gift than hope and no greater present than progress.
Family visits may cause incredible stress for children on the spectrum (or other special needs). Of course, they love their grandparents, but even happy change is change, and new bodies within the home can shift the dynamic and increase anxiety.
We’ve learned to set clear goals for our loved ones who come to visit. Expectations on time, the volume of their voice, activities anticipated, and how much sugar they can offer to the kids. Making Christmas lists to give to our family of sensory or age-appropriate toys also guarantees everyone feels good about the gifting and the getting.
And of course, we also keep in mind that no one understands our children fully unless they live with them, so grace is served right along with the ham.
Use Social Stories for School Closures
As a kid, I used to countdown the days until Christmas break! But my children thrive in school. It’s a safe place full of routine and consistency. It’s something controlled.
Again, even fun change, like spending the day sledding, can be a hard change to handle. Social stories with visuals are great for explaining why we’re taking a break from school, and calendars counting the days until we return are even better.
It’s Possible to Feel Unhappy Even on the Holiest of Days
The holiday season is indeed magical — but marital problems, mental health issues, children breaking down, bankruptcy, miscarriage, family discord — they don’t disappear because it’s December 25th. Just remember that social media is a highlight reel, not real life (especially during the holiday season). And just like autism can’t be seen in a picture, other people are fighting invisible battles too.
You are never alone.