Everybody Has a Story: Waiting for a simple Christmas wish

Christmas with our 33 year-old, six-foot, 270-pound son is a special time for us. Christmas is one day that breaks up his expected daily routine, but it’s challenging too because, well, it breaks up his expected daily routine. He can be laughing and smiling one moment then pushing, grabbing and screaming the next. Medication helps, but we’re never sure which way William will go on Christmas.

I believe William senses Christmas is a special time. For one thing, it’s quieter. We sleep later and so does he. Usually, each morning he comes to our bedroom door to begin his routine: get Dad and Mom up, change his diaper, take a bath, get him dressed, microwave a red-hot beef burrito, get a drink. Then it’s “Go … car now, car now!” We do a little shopping at Winco or Costco. This sequence has been our daily, isolated life for many years now. In between this, my wife and I have managed a marriage for 35 years and raised two other wonderful children.

But on Christmas morning I tell him, “No, not yet, Mom gets to relax and so does Dad.” Eventually I go into the kitchen to see if he got into food we forgot to lock away. I put his suspenders and orange reflective jacket on him, then take an early drive to Battle Ground Lake Park for a “calm down” walk, or to any McDonald’s that’s open.

He has no clue what Christmas is, but I do tell him the story from time to time. He’ll cock his head on his pillow, roll his eyes to the ceiling, listen for a while, then say: “Stuffing.” His favorite part of Christmas is eating stuffing with turkey and gravy, sweet potatoes and rolls. He’s never asked us a question in his life, and certainly not “Who’s Jesus?” or “Who’s Mary?” Still, I tell him something about this day and why it’s special.

He loves the Christmas scenes, tree lights, decorations, shows, music and commercials, and he turns up the volume on his radio headphones. We are grateful this gives us some reprieve. He watches George C. Scott’s “A Christmas Carol” every year. He laughs at Scrooge and repeats all day Tiny Tim’s “And God bless us all … everyone.”

We give him the same gifts over again: a box of chocolate, beef jerky, cookies. He’s easy to please. I tried toys and games when he was younger, but he just looks at them, smells them, puts them down and walks away. My wife rarely Christmas shops because she is so occupied with his care. Being retired now, I can help more.

William can’t read, write, count, answer a phone, play games, shave, dress himself, cross at a stoplight, take his own bath, wash, use the “potty” without help, or tell you if he is in pain or who he is. He wants things “now!” such as “burrito now!” and has no sense of time and distance. He wears a bracelet with his name and our telephone number if he wanders away. We change him daily: diapers, shirts, pants, bedding, blankets. We can spend over eight hours daily doing his laundry alone. Christmas doesn’t change this.

But Christmas day is more stressful because we invite friends and family over for dinner, as one of our few socials with others. My wife gets frantic because the mess builds and there’s dinner to prepare. When they come over, our guests help us, but we are in our mid-60s and it gets more tiring each Christmas.

William hasn’t changed since he was a toddler. He refuses to do anything new, which is frustrating. After all, isn’t Christmas the hope of rebirth? Yet we know there are many families in Clark County with similar adult children who have much greater challenges than us. How they manage I can’t imagine.

There’s a lot of talk in the media about the autism spectrum. It seems more inclusive to us now. But the ones being interviewed, on TV, in the movies, the Dustin Hoffman savants counting cards — they are on the upper rungs of this ladder. William’s near the bottom. He’ll repeat what you say, but he doesn’t know what words mean. He’ll say “no” when he means “yes.” It’s a struggle to figure out what he needs, even with pictures.

When guests arrive for dinner, we put out snacks. We give William a little bowl to eat from, or he would eat it all. My wife devotes time to cooking and then to serving and cutting William’s food. Our guests are used to being second fiddle to William. We are certainly blessed by his presence and by our family and friends who care about him. But he is not usually interested in opening presents or saying anything to his siblings or guests.

As dinner begins, we hold hands with William, and I say grace. After dinner, he paces with his bowl, may sing cute versions of Christmas tunes, take a bath again and goes to bed. When I finally tuck him in, I may find him laughing and smiling with his headphones on. He wiggles his feet and grips his blanket. After brushing his teeth, giving a kiss and turning off the light, I say into his ear: “Merry Christmas, William, and have a good night!”

He looks straight ahead and says in perfect echolalia: “Merry Christmas, William, and have a good night!”

I walk down the stairs to our guests, wishing and wondering if one of these Christmases he will ever reply, with fullness of heart: “Thanks, Dad, I had a wonderful time … and a Merry Christmas to you too.”

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