It was so good to hear. The children were sitting round the table roaring with laughter. Joe was literally holding his sides. Somehow the conversation had come round to my serious gap in general knowledge that coincides with the four years after Joe’s birth and the reason for it being linked with Joe’s seeming inability to sleep or ever be still (the first time Joe slept through the night, he was fourteen months old – I know because I have the date in my diary with exclamation marks and it coincided with him taking his first steps). We were not laughing at Joe, but with him, at some of the antics he would get up to and the absolute logic he applied to life from birth onwards. This particular burst of laughter was due to the fact that it had been necessary to construct a temporary day bed on the floor for him when he was little because he had point blank refused to countenance a day time nap in his cot. He could use signs before he could talk, and apparently that cot was used after a bath and bedtime stories, absolutely not just for naps! It was the same rigid logic that caused dismay and distress when Christmas trees appeared in houses and shops – trees do not belong inside, and they don’t have lights.
Since medieval times, advent has been associated in a positive way with the anticipation of Christmas. Not so in our house. Regardless of how you choose to think of Christmas, in the society Joe lives in, Christmas challenges his autism. Routines disappear, people dress up in strange costumes, surprises are sprung, odd traditions appear that make no sense, crowds gather, excitement and volumes rise. Lights flash in town streets, in shops, and outside Joe’s bedroom window. People do things that are out of character, jingly music is played loudly in public places and demands are placed on Joe that would not be asked of him at any other time of year. By the time we staggered through the door at the end of the last day of school, we would be exhausted, ready to abandon Christmas – and although I myself find Christmas overwhelming in its commercialisation, there are parts of it that are meaningful to me, traditions that I do wish to uphold, and cancelling Christmas was a depressing, last resort. For us therefore, advent has always been one massive exercise in stress management, an experience widely shared by other families coping with autism.
As the years have gone on, things have improved. We no longer have to worry about the Christmas tree or homemade advent calendar being torn down (we could have chosen not to put them up, but that didn’t seem fair on the other children). We have learned to carefully plan, subdue, keep to a minimum any disruption; this year’s restriction on socialising will not affect our Christmas Day at all as it has been self-imposed on our family for years to keep stress levels as low as possible. Over time, Christmas for our family has taken on a routine of its own which, while we are restricted by it in one way, means that Joe knows what to expect, so is calmer. We succeed quite well with it these days. It helps that Joe has moved on too. He still fills the house with a head splitting level of noise, but he is now expressing excitement which is a relatively new thing. For me, seeing him excited is still a lovely novelty – he is a seven year old in a sixteen year old’s body. Until recently, he has not had the capacity to get excited, his anxiety meaning that he would lose the ability to cope before he reached anything that another person would recognise as excitement. (He used to flap his hands and whistle, but unless you knew him, you would not know he was excited. When I saw these signs, I knew that he was reaching his limit, that he wouldn’t be able to hold it together much longer – I would be on high alert.) With Joe’s ability to self-regulate improving and with all the adaptations we have put into place, we are now much better prepared for the Christmas season.
Advent begins today. In order that Christmas does not arrive abruptly in the house, our tradition is to create four different Christmas scenes over advent, a small piece at a time, using children’s figure toys (robustness is still a necessary feature) so that by the time Christmas comes we can just add the tree and that’s the house decorated. I have relinquished my role in tree decorating so Joe can organise it, making it easier for him to cope with the intrusion of an evergreen into our back room. And this year, we have one extra little plan. We had hoped to have it sorted this weekend, until a completely flat car battery stopped us making it to the wood, but we’ve a native Scots pine sapling which we intend to plant near camp; at the moment there is no evergreen pine in the wood at all. Hopefully, for years to come this new tree will be the outdoor Christmas tree Joe has always thought best. We are so hoping for a peaceful Christmas season, as are many, I think, this year. I am particularly looking forward to a quiet trip to the wood to plant our little tree with the hope of more tranquil times ahead.