‘Tis the season for happy and jolly. Or at least those are the expectations of the holiday season. For families living with mental illness, this is not always the most wonderful time of the year. The holiday season can be very challenging, emotional, and an isolating time for families.
We typically ring in the holiday season with at least one trip to the psychiatric hospital, this year was no different. The heightened anxiety and change in mood usually begin with the talk of Halloween and we don’t level out until mid January at the earliest. We often say that if we could have looked into the future we would have converted to Buddhism prior to starting our family.
Living with autism and having a sensory system on hyper alert. Lights! Smells! Sounds!
This time of year brings three changes in decorations – Halloween, Thanksgiving, and Christmas. The stores are lit with colorful and blinking lights. The smells are different with the trees, wreaths, and mulling spices. Santa is everywhere and the Salvation Army are ringing their bells. And on top of everything else, it gets darker earlier. The energy level is high and routines change. Sensory overload!
Being prone to anxiety and being a perfectionist. Naughty or Nice?
Remember, Santa’s making a list… checking it twice! Gonna find out who’s naughty and nice! He sees you when you’re sleeping. He knows when you’re awake. He knows if you’ve been bad or good. So be good for goodness sake! For a kid like Ben, this innocent story creates tremendous anxiety, can be defeating, and triggers self-deprecating thoughts. Being a very literal kid who remembers every outburst, this fun tale is a nightmare!
And then there is Christmas Eve and this jolly man sneaking into your home sometime during the night. For years, Ben did not sleep on Christmas Eve, not even for an hour. Which meant we did not sleep either. The insomnia was not a result of excitement, instead, due to the thought of a stranger coming into the house. Needless to say, Christmas Day was met with a tired and cranky household complete with sleeping the afternoon away while grandparents entertained themselves.
Having OCD tendencies, Ben’s Christmas list routine started in September. Ninety two lists is our record!
Ben would write out his Christmas list every night before going to bed. He would fold the list, a total of two folds, and put it under his pillow. The next night he would repeat the process. Come mid to late October, Ben would start worrying about whether or not he was on the nice list and getting his most desired toy. By November the worrying would lead to sleepless nights. The sleepless nights would trigger anger and irritability. The anger and irritability resulted in restraints at school and lost privileges at home. Come late November or early December, mania would kick in resulting in a trip to the psychiatric hospital for a medication adjustment. A vicious, yet predictable cycle.
On a funny note (funny now anyway), one Christmas season Ben really wanted an authentic Star Wars costume costing over $2,000. He was obsessing over this one of a kind costume. We suggested alternative costumes within Santa’s price range. One morning I woke up, checked my email, and there was a charge for $2,400 from Museum Replica!! After confronting Ben, he calmly said with pride … “Mom, I found your credit card and ordered the costume and guess what? I was able to sleep the rest of the night. Isn’t that great?”
Back to imagining the clash between the holiday season and a mood disorder.
Prior to Christmas we experience more manic behavior due to the change in routine, sensory overload, anxiety, and obsessive thoughts. Disregulation at it’s finest. After Christmas and leading up to New Year’s Day, Ben experiences depression and has talked about not wanting to live. He replays the previous year in his head and can only see the outbursts, family vacations cut short, and all that he was not able to participate in. It is very hard for him to appreciate all the successes and fun we had. It is a difficult time for our family.
Progress, Hope, and New Traditions
Out of survival, Ben challenged us to think differently about the holidays. When he was 9 years-old he asked if we could stay at a hotel close to home on Christmas Eve. He thought that if he was at a hotel, he would sleep through the night while Santa did his thing at home. Our new family tradition is swimming in the hotel pool, eating chinese food in the room while watching the movie ELF, winding down with the yule log on the iPad, and having a great night sleep. Christmas morning we check out of the hotel and drive the three miles home to enjoy the day.
Ben’s brilliant idea led to a family brainstorming session around all the holidays. What could we do differently to minimize the anxiety and increase the fun. For Christmas …
- As a family we plan out Christmas Eve and Christmas day ; Ben types the schedule
- We stay at a hotel Christmas Eve
- We do not have any out-of-town family visit over the holiday in order to keep the house calm and predictable (this was a tough one)
- On Christmas day we take planned sensory breaks in the morning and afternoon
- Instead of a formal dinner with lots of preparation, we have a fire outside, make pizzas, and have s’mores for dessert
- We end the night with a family movie
Ben has taught me to let go of traditions and expectations and to live in the moment. I no longer dread the holidays. Although I wish we could have friends and family fill our home, I am grateful for sleep, excitement on Christmas morning, and quiet family moments throughout the day. The best gifts of all!