As Christmas approaches I can't help but reflect on the years past and how my son Matt has changed in his own way to embrace the spirit of the season. Matt is almost 26 yearsold, so there's plenty to reflect upon. As I thought about all of our unique experiences I wondered, "Do other parents of autistic children have this much fun?"
I use the word "fun" because looking at it from my point of view it would all make such a great movie, a comedy I think, about learning the true meaning of Christmas. Don't get me wrong, there were a few years with too much family drama. Some were budget-breaking extravaganzas, while others were completed on a shoestring financially. Some were tearful - due to overwhelming joy, and others tearful because they were absolutely heart-wrenching. Yet all, every single one, ended with the warmth of a love-filled home, smiles on children'sfaces, full bellies, and plenty of unforgettable (and sometimes pretty hilarious) memories.
We always went on a drive to see Christmas lights and decorations on or near Christmas Eve and we always waited to put the toys and gifts under the tree until after the kids were asleep. This was a challenge as every year for 10 years Matt would camp out in the hallway with his pillow, blanket and fan (he has slept with a humming fan next to his head all his life) to await the arrival of Santa (maybe catch a glimpse) and we had to traverse this blockade without waking him. It was a 2 person job - a team effort - just to get the packages from point A (bedroom closet) to point B (under the tree.) Matt never knew, never awoke even once and it kept the magic of Christmas alive, and the illusion of presents just suddenly appearing under the tree safe for another season.
There was the year of my divorce where I had nothing to give my children, no money to buy gifts and no tree decorated and blinking. Just days before Christmas friends and family got together and delivered a small decorated tree, supplied gifts for my children and took us into their home for a holiday feast. Just days before I had been caught crying by Matt. He responded by crawling into my lap, putting his hand on my face and said "momma" for the very first time. It turned out to be one of the best Christmases ever for me.
There was the first Christmas after autism set in when Matt loved the boxes more than the toys that came in them. There were several where he fought Santa tooth and nail at the Mall, and another where the one toy he wanted was the one toy we searched for in store after store for weeks to no avail and had to leave a note under the tree that promised one would arrive soon. The Christmases after he could write were much better because we encouraged him to write to Santa (you know,that bearded guy he fought tooth and nail just a year before). The letters gave us insight to what he really longed for and sent us on a mission to obtain said items early in the season to make sure a note would not have to go under the tree ever again. Matt asked for a wide variety of items over the years; building blocks and Lego kits, Ninja Turtles, Ghostbusters, Jurassic Park vehicles, Toy Story action figures, Thomas the Train VCR tapes and train accessories, space shuttle models, airplane models, a Big Wheel, a bike, Home Alone tapes and art supplies, books, clothes (as a teenager he became aware of his appearance and actually wanted clothes!), and sports paraphernalia for Virginia Tech. Take a look at that list again - nothing in it says autism . . . nothing.
Church plays and concerts were met with tantrums and meltdowns - Matt hated the loudness of the music and although fascinated by the plays, did not wish to partake as one of the shepherds. Instead, Matt crawled under the pews or walked the periphery or explored any region of the church he could get away with. This meant I was constantly looking for where Matt was while trying to watch our other children perform. And there were times when I had to miss something - a line, a song, a part of my other kid's holiday, to run after or console a weeping Matt. But children of all ages act out at times or are afraid and must be consoled. I would wager that most parents at one time or another miss their other children's stuff too. Autism doesn't cause the problems -childhood does.
And while visiting Santa was traumatic as a small child, he finally did grow a desire to talk to the big guy in the red suit and it evolved almost overnight into a must - do ritual. Did it really matter that he was now 10 - 12 years old and twice the height of the other children in line? Did it matter that he would only stand next to Santa and talk, not sit on his lap? It never fazed Santa, it never fazed Matt and it never fazed us.
Then one year it happened - Matt no longer wanted to see Santa. He had become skeptical of the magic tale and he needed something more. It was finally time. We all know it will happen and we all know we have to eventually break the news to our kids, but how you do it matters - it matters a lot. Breaking the news of the childhood lie wassomething I had thought about for years - literally. When it came time to sit him down I was ready. I told him that little children believe in a Santa Clause because it is magical and fun. I told him that as a child becomes an adult they know something is amiss - this is because they get smarter. I told him that adults are Santa and when they become adults it is their job to keep the magic a secret and be the Santa for others. Matt especially liked this idea. He would be the secret Santa and keep the magic alive - he took this responsibility to heart.
Every year since our talk Matt has been the essence of the Christmas spirit. He hunts for items for each family member and wraps them and puts them under the tree. Matt even buys for himself. He wraps it up and puts a tag on it -to Matt from Santa - and on Christmas morning he opens the gift that he himself wrapped and is wonderfully surprised and excited to find exactly what he wanted. His joy at watching Charlie Brown and Snoopy, the Grinch and Rudolph are contagious as well as his excitement at decorating a tree, stringing lights and wrapping gifts. Matt lights up our home and our hearts. Our other children are all grown up and moved away into their own homes and are creating their own season of magic. Yet even with our children grown and our house mostly empty we still have plenty of the Christmas spirit lighting every dark crack and crevice. Matt reminds us daily that it is love that matters most - not the gifts or twinkling lights or Christmas songs but the deep desire to give the gifts, wanting to display the lights and to sing the songs that makes it all so magical. Autism does not prevent the desire and it does not prevent the love from being felt. Autism is just the surface. What is inside each of us is what matters, autistic or not. For my husband and me, Matt makes Christmas, Christmas.
I know it sounds too warm and fuzzy to some of you. I can assure you it was not always this way. We felt the aloofness of extended family members, the constant veil of stress, and jumped the hurdles that appeared almost daily from out of nowhere. But that was "then". Something changed along the way and it wasn’t just Matt - it was me too. I am now the one who rides the waves of autism with him taking away from each experience the comedic factor and laughing away the conformist part of me that used to think everything had to be just so perfect. I understand now that life really is what we make of it – should Christmas be any different? Enjoy the quirks, survive the stress, and be ready to look back and laugh. Think of the stories you could tell!
Matt just finished wrapping another gift he bought for himself and placing it beneath the tree. I can't wait to see his surprised and joyful expression when he opens that same gift on Christmas morning! It's Christmas - autism style.