Thursday, December 30, 2010

Against the Current

It was Christmastime. Our son's worker, Sarah had flown back to visit her mother’s family for the holidays. Our children had received their first gift from the daycare: they were both sick. What started off as nothing more than a cold quickly turned into flu like symptoms and soon I was feeling poorly too. Neither of them could go to daycare because of fevers and home therapy came to a screeching halt as well. I was not in a holiday frame of mind. There was decorating to do, a tree to put up, baking, present wrapping, meal planning and so much more. All those jobs fell to me since my husband was still working long hours which now included office parties. I was jealous of his social life and secretly resented all the work I had to do, especially now that the kids weren’t feeling well.

Christmas had always been special to me. I grew up in a small town where everybody went to the firehouse on Christmas Eve to await Santa's arrival on the fire truck. When the man in red showed up the children got bags of candy and then he made house calls to those less fortunate. I remember those cellophane bags of Ganong candy and the half-frozen cans of soda pop... and the thrill of Santa greeting me by name as he handed out the treats, inquiring whether I had been a good girl. As a university student I spent that time socializing with my friends whom I hadn't seen for months. My family and I would attend the candlelight service at our church, always culminating in the last hymn being sung A cappella as each congregant lit their candle, a glowing extension of the Advent candles. It was awe inspiring to see the church softly illuminated as our voices sang out the last stanza of Silent Night. Afterwards my family would go home and open one present while enjoying some of my mother's Christmas baking and a glass of eggnog. As a teenager I would go to my best friend’s house for a party and then join her for midnight mass before returning to my own home. Even as a young adult I would find it hard to get to sleep that night, so full of excitement for the next morning. We would get up early, open our stockings then enjoy a special breakfast while perusing the big gifts. We spent the afternoon playing with our new toys and modelling our new clothes as my mother would work away in the kitchen preparing a turkey feast. Christmas evening I would go sliding or in later years, snowmobiling and hang out with my friends. It was the best day of the year. To this day when I smell new plastic (as in Barbie doll paraphernalia) I am reminded of those happy Christmas memories.

When I had my own kids I had visions of having similar Christmas eves and mornings but the Norman Rockwell scene was not to be. I had to put all their presents in gift bags with one layer of tissue paper because they didn't understand the concept of presents so wouldn't bother to open them. I couldn't leave any toy in its original packaging since it would take too long to access and undoubtedly result in a meltdown. There was no point in doing stockings at all since they didn't like toothbrushes or candy or trinkets, much less ones that had been wrapped up in layers of paper. They didn't have a clue who Santa Claus was. They went to bed that Christmas Eve like any other night; with difficulty. We hadn't hung our stockings or left out cookies. Our son had balked at the new, unfamiliar Christmas pyjamas I had bought until I finally gave in and let him choose a familiar pair.

There were certain traditions we had established that I clung to. I always made seafood chowder and tourtiere on Christmas Eve. Living on the coast, it is relatively easy to get fresh seafood and both my husband and I enjoyed the luxury. Tourtiere is a type of meat pie, popular in the French culture of our province. I hadn't grown up eating it but had adopted it as one of the new traditions of my married life. When our son was just a few weeks old, we had had our first Christmas in our own home. I had made chowder and tourtiere that Christmas Eve and we had enjoyed it with a glass of wine. That year had been our last joyous Christmas. We talked about how our son would be a year old the next year and capable of ripping open his presents, how in future years we would have excited children thundering down the stairs on Christmas morning to see what goodies Santa had bestowed. We had promised each other to always have the same special meal on Christmas Eve. We had started a new tradition, one that was our very own. We had maintained that tradition in the ensuing years but really not much else. We would go for a drive to look at Christmas lights but the kids would cry and whine (or worse) as we drove. We couldn’t play Christmas music because it made our son scream. There was no possibility of baking cookies or reading 'Twas the Night before Christmas’ or decorating the tree as a family. Our children would not sit to hear a story and they had no interest in cookies or ornaments. I had to buy non-breakable decorations because our son would take the shiny bulbs and throw them on the floor, thinking they were bouncy balls. Our daughter tried to eat the garland.

It was our first Christmas in our new house. I should have taken joy in decorating it but instead I found it drudgery. Who was I doing it for? The kids couldn't have been more oblivious. I had put up the outside lights one afternoon in early December while Sarah was working with our son in the family room. As I puttered in the garage I could hear his screams through the door. Things weren't going well. My son seemed to have little tolerance for our demands on his time, no matter how enticing the reinforcers. My daughter seemed more distracted than usual, trying to wander off in the middle of therapy time. My children's short comings were underscored by the daycare activities. While my daughter’s classmates were making Christmas ornaments she kept trying to eat the glue and sparkles. When my son's class decorated Christmas cookies, he threw his on the floor, afraid we might make him eat it.

I would walk by the line of excited children in the mall, waiting to take their photo with Santa and know that my children would not be doing the same. We rarely took their photos because they wouldn't look at the camera. I already had too many pictures of their profiles and tops of their heads. I had no idea what they wanted for Christmas but neither did they. I had bought videos, figurines, touch ‘n feel books, wooden inset puzzles and spin toys: basically all reinforcers for therapy or movies to entertain them when I needed to do other things. It was difficult to muster enthusiasm for Christmas shopping when I already spent so much time sourcing out new therapy supplies. It just didn't seem to be special.

I managed to get most of the chores done by Christmas Eve, except for one: I needed to put all their presents in the gift bags and under the tree. After the kids were in bed we had unexpected visitors: our second worker and her husband had stopped in to drop off presents for our kids. Her husband's children were spending Christmas Eve with their mother so they had nothing to do. I invited them to stay for our late feast. They stayed far too long, choosing to polish off two bottles of wine instead of leaving at a respectable hour. By the time they left it was almost midnight and I hadn't yet brought the presents up from the basement. I hadn’t wanted to do this chore in front of our guests. Our worker’s husband had typical children and I was embarrassed with the quality of presents I had bought our children. I hadn’t wanted to explain about the gift wrapping either.

We were both tired and didn’t speak as we cleaned up the kitchen. My husband turned on the television and slumped down on the love seat. I sat down on the sofa for a moment's break before getting to the business of creating some Christmas magic. My husband was grumpy. He didn't like this worker and thought her husband was an idiot. The man had spent time complaining about how greedy his children were with their Christmas lists. My husband had not enjoyed the evening and neither had I. We argued over whose fault it was. I blamed him for all the work I had to do. He blamed me for not appreciating all the work he did. After hurling insults and threats at each other for over an hour, I told him I was cancelling Christmas and went to bed. Apparently he agreed because when I woke up the next morning there were no presents under the tree. He had left them all in the basement and had slept on the sofa. The children didn't notice. For this one moment I was thankful they were autistic. The children got up, drank their bottles and started watching videos like it was any other day. They had absolutely no concept of the holiday. Our families did though so before our parents called we opened their presents so we could pretend we had had our Christmas morning. They asked if the kids were excited so we lied and said they were. We told them what we thought they wanted to hear. We pretended we were happy. It would become a pattern with our families. Our parents didn't really want to hear the bad stuff anyway and they were far enough away that we could fake it most of the time. At least they all sounded like they were enjoying that day so why spoil their fun with talk of our reality? I remember standing in the livingroom window, looking down the street at our neighbours’ houses thinking about all the joy and excitement that was going on in their homes. I felt an overwhelming sense of loss and exhaustion. I was depressed, asking myself "Is this as good as it's going to get?"

I wish I could have envisioned then what I know now: In a few years I would be standing at a Christmas Eve church service with my children and as the congregation sang ‘Silent Night’ my son would lean towards me so I could light my candle, his eyes glistening with the magic of the moment. We would take a drive to see the spectacular illuminations around our neighbourhood and then go home to decorate cookies for Santa, the children licking the excess icing off their fingers and laughing about the mess. We would hang our stockings and our son would write a note to Santa, equal parts flattery and repentance. We would put out carrots for the reindeer. The children would dress in matching Christmas pyjamas and open their presents from their grandparents. They would be hard to put to bed, only because they were too excited to sleep. My husband and I would sit in the family room watching Christmas specials and eating seafood chowder and tourtiere while waiting for the right time to bring all the presents up from the basement. These presents would be wrapped in bright paper with lots of tape and bows. The next morning the kids would rip them open with shrieks of joy and wild abandon. It would be loud and chaotic and joyous and perfect. This was as good as it would get!

I didn’t know the future so I went about that Christmas day in a state of quiet desperation. By evening my husband and I had made our peace and put the last 24 hours on rewind. I had spent some time in the basement wrapping up the presents so everything was ready for that night. We pretended it was still Christmas Eve and we vowed never to disclose our Christmas charade. It would be years before we told anyone, too ashamed to admit to our failings as partners and parents. The next morning went as we expected. Our children rose at their usual early hour with us prodding them toward the presents, feigning enthusiasm and opening each bag for them. I had purchased four large Teletubbies with squeeze-activated noises. Our son liked them and spent much of the day standing on one or the other to make the noises. His fine motor strength was not good enough for the squeeze method. Our daughter had been equally interested in the Teletubbies but she liked to lie on top of them. We had given her a child-sized bean bag chair and she spent part of the day lying underneath it, silently watching the new Teletubbies Christmas video. Neither of them would eat Christmas dinner so we had ours after they were in bed. I had made our traditional crown roast with all the trimmings. The children had eaten arrowroot cookies, cheerios, cheese, milk and some pasta. We reheated our meals in the microwave after they were in bed. It hadn't been much of a celebration but I was glad to be done with it, even if it had taken an extra day to do it.

With Sarah away, the second worker came to the house for a few days between Christmas and New Year's to help out. I was no longer sick but the children still weren't themselves so they were more uncooperative than usual. My husband had returned to work. I spent a lot of time thinking about the current state of therapy. Things seemed to be at a standstill, no matter how hard we were working. It was as if we were rowing against a strong current because no matter how hard we tried we didn't seem to be making progress. We needed to be gaining ground, not just maintaining our current position. I thought I needed to make some changes.

When Sarah returned we had a long talk. She was frustrated with the lack of progress she was seeing in the programming and the lack of clear instruction I had given her. She spoke about being physically and mentally exhausted at day’s end. She truly was trying her best. I was concerned that she lacked the confidence to take initiative on her own. She was so young and inexperienced. She had not yet had the benefit of education, both in life and university. My expectations of her were just too high. We agreed to part company. I promised her that should she continue on her quest for more knowledge and experience that our paths would cross again in the future. We were both better prepared the second time around.