Christmas tidings are upon us, and everywhere I look I see holly, lights, and frantic shoppers. Sometimes I see all three of them together, in one frazzled person who is in charge of the decorating. That used to be me. I know underneath the frazzled expression and frustrated eyes, there is a mind filled with images of smiling faces who will be giggling with merriment under the twinkling mistletoe. But the twinkling mistletoe can present a problem if your child has autism.
My late son, Mikey, had an obsession with lights when you was younger. He especially liked the chaser lights, and could watch them for hours. During the month of December, our neighbor’s exterior chasing lights were often the only enticement I could find to coax an anxious Mikey into bed, since he could see their lights through his bedroom window. Mikey’s autism was mild enough that he had language, although he had been delayed in his speech. But once he began talking, he frequently spoke of lights. He also frequently became agitated.
The holidays are tough for kids with autism who easily get over-stimulated. Everyone gets over-stimulated during the holidays, but their anxiety is amplified to extreme degrees. The agitation that a toddler expresses when frustrated is socially acceptable, but when your child is 7 or 8 years old, strangers have little tolerance for outbursts and tantrums, and parents become even more frazzled dealing with ignorant advice and criticism from people, on top of their tantruming autistic child. Holidays can wear on those parents like a scratchy wool Christmas sweater that they’re forced to wear for an entire month. At times, there seems to be no end in sight. The child doesn’t sleep, the tantrums become more frequent, and everyone’s nerves are on edge.
When Mikey was young, I set up a playroom in the basement for him and his sister, Susie, that was devoid of Christmas decorations. I kept Mikey in the basement with me throughout the days when he was out of school. Susie was a sport, and she would stay down in the basement with us and play, even though she was allowed to roam the rest of the festively decorated house at will. Mikey didn’t seem to realize he was being confined, as long as I kept him entertained with spinning tops and coloring utensils. People used to tell me I should just skip the Christmas decorations to spare both Mikey and myself agitation. I refused for two reasons: Susie and Mikey.
Susie was young and loved the holiday spirit spread throughout the house. I always felt she had to take a back seat to Mikey out of necessity so often, I could not imagine denying her the joy she found in the Christmas decorations.
And then there was Mikey. The reason he became over-stimulated was simply because he was overly excited. The sounds I heard when I plugged the tree lights in were delighted screeches from Mikey. He just got so wound up that he couldn’t handle that much excitement. But I refused to deny him the thrill. I just learned to give him the thrill in smaller doses.
I also learned to turn a blind eye to broken lights and decorations. Mikey was fascinated with anything containing lights or movable parts. So I pretended I didn’t notice the Santa music box no longer had a head, or Rudoph’s light-up nose was conspicuously missing. Those little hands couldn’t stay off of anything with a movable mechanism. When the lights from the window disappeared and I saw their plug sticking out of Mikey’s closet, I didn’t ‘notice’ that either as I tucked him into bed.
While autism never killed our holiday joy, suicide almost did. Mikey took his own life four years ago after suffering a delusional episode, not typical of autism or Asperger’s Syndrome (his later diagnosis.) That first holiday without Mikey was horribly painful for us. But we still put up a tree and passed the day in front of movies that Mikey would have enjoyed. And we drove down to the capital to look at the lights.
So while I can look back and remember my own frazzled self during Christmases past, I am thankful I had them. I am thankful I put up the trees and the stockings and the music boxes. Most of all, I am thankful for Susie and Mikey and the love around me. And the lights.
*Diane Bucci is an author, speaker, and private spiritual coach. Her book, The Return of Mikey, won the 2012 Irwin Award for Most Inspirational Book of the Year. Contact Diane at Diane@DianeBucci.com , book’s web site www.ReturnOfMikey.com