The holidays are filled with cheery music, jingling bells, pretty lights, sugary delights….unless you live with ASD. In our home, we did prep work. Front-loading it is often called.
“In 1 week we are going to get our tree”
“In 3 sleeps the family will be here….2 sleeps….1….”
We read stories or watch videos about the holidays, to familiarize and basically warn them of the impending doom…
Each year we pick out our tree, we put it up and the lights go on. My oldest loves to help with the decorating, he loves the lights, the star on top of our tree.
My youngest…sure he loves the lights. He pulls them off he wants them so much. He loves to UN-decorate the tree. Especially the baubles…I mean, shiny balls…what isn’t their to love about them? He loved the star my oldest picked out so much, that he pulled the entire 7 foot tree down several times last year to get to it. Because everything must be inspected thoroughly. Then enjoyed at eye level and zoomed back and forth for affect, for the sensation of it all. And a scene…a family tradition…forget it. He would climb right in or throw the structures and trees.
This year we did things differently. We put up one decoration a day. A wreath, then the tree (we invested in an artificial pre-lit tree this year). Each day we had him put one or two ornaments on the tree himself, and watch each family member do the same. Within a week our tree was decorated. We dug out the star, but plugged it into the wall in the hall rather than put it on top of the tree. This was what saved the tree from being pulled down this year. Fortunately, my oldest was happy to create his very own star with paper and scissors (and tongue sticking out of a silly face of course). NO baubles, too tempting. I even got a train that goes around the tree trunk in the middle of the tree to make it more accommodating to my youngest’s interests as well as set up our Polar Express train beneath the tree. He was doing so well, I managed to buy some cotton and make a little scene with some bottle brush trees and characters from the Polar Express movie I bought on Amazon.com. Unbelievably he only tried to climb into the scene once! He never pulled the tree over to get to the star, and the fuzzy, plush ornaments I bought all stayed on the tree after we all hung them. Miracle!!!
Christmas morning was a big worry for me, each year has presented a new problem or difficult experience for one or the other kiddo. They either did not want to open the gifts, or if they opened them would not play with them for weeks or months or ever as they were too foreign. We still have baby toys kicking around as it’s difficult for them to transition to other toys. This year was different. This year, my dad played his Santa role and they BOTH loved it! My youngest now call’s him “Santa Poppa” and was completely enchanted by his suit and real beard. Last year he fled the room and would not go near him while in the suit. They BOTH opened their gifts, both enjoyed every new toy and continue to….They ripped the packaging open!!! It was messy and lovely. It was a real Christmas. There were no meltdowns, one minor mis-understanding later in the day as they got tired and run down, but it was very minor and over quickly. Christmas Day was magical. We listened to holiday music, lounged in our jammies, ate left over turkey from the dinner the night before, the kids did not, but they ate their usual. They played together and independently.
For two days after…I called it the Christmas Hangover. They. Were. A. Mess. As if all the wonder and magic left that night they went to bed and the next day they woke and literally, for two days they suffered with meltdowns and exhaustion. I did not care though…we made it through Christmas Day perfectly. It felt almost “normal” and as if the ASD took a holiday for a day…we had the magic I have so longed for and tried to create each year for them but failed to do so without overwhelming them.
We put up less and got more. We gave less and received more gratitude. We expected nothing and got it all. Who knows how next year will go, I have learned that each year is different and unpredictable for both kids. But at least I know now, that ultimately it will be OK. They have felt the magic and love and wonder I wanted them to experience. They get it now, why it is such a special time of year, such a special event. Maybe not in the same way others do…but deep down it is there. Now that it has happened once…I know it can and will happen again. It gave me hope and I have not had that kind of hope in a long while.
(Hardly do I feel “hopeless” but rather, uncertain. It is the unknown that is feared most.) I am so grateful that this holiday I saw a glimpse of what may be. It is enough to keep me going. To keep the fight strong and the support and therapies coming…because they can have it all…they will have it all. In their own way perhaps, but definitely, it is there now. Hope.
autstanding 