I’ll never forget the first time Sawyer dropped a mince pie, picked it up, dropped it, picked it up again and placed it onto Santa’s tray.
By the time his sixth year rolled around I was finally able to tell people that Sawyer was starting to get excited for Christmas. Although it happened far later than most of his peers, eventually Sawyer’s concentration began to improve, his ability to understand instructions developed, and he started to speak in short, sharp sentences. With all of those things came his understanding of Christmas. But autism is a fickle sod. And often as we begin to see developments in one area, further difficulties arise in another.
Back when Sawyer was 2, the holidays (although hard work for both him and us) were cushioned by afternoon naps, and softened by early bed times after tiring days. When he was overwhelmed he could be convinced in to a buggy and taken for a very brisk walk in the cold. He could be given a cup of milk, distracted with chocolate, or thrown up in to the air for giggles. At the time those processes still felt like hell, since everyone else’s angels seemed to be sitting nicely on laps and watching The Muppet’s Christmas Carol, whilst Sawyer was sticking his finger in to the Christmas candle and running headlong in to the patio doors. But we had obvious solutions, and temporary quick fixes. Sawyer never seemed to be in distress back then, he just seemed… well… hyper.
Although Sawyer’s love for Christmas has grown rapidly over the past 2 years, at the same time so have his intense sensory issues. Now 7, we can no longer distract him with a brisk walk, and we certainly can’t throw him up in the air. Finding ways to help him cope with Sensory Processing Disorder is a long, difficult and ever-changing process that we will continue to battle with over the next few years and beyond. High-functioning autism takes away with one hand, gives back with the other, and then kicks the chair clean out from under you.
After a lovely quiet Christmas Day at home, on Boxing Day we packed our bags and were ready to visit family a short drive away. Knowing that Sawyer finds large gatherings difficult, Mum and Dad cleared an entire room in their house for him, so that he had his very own safe space – somewhere for his trains, and somewhere to retreat to if he felt overwhelmed. In that room was a cracked window so he could stay cool, his IPad so he could indulge, snacks to save him from running out of energy, and water to remind him to drink. To our delight when we arrived, Mum and Dad had added a sign to the door that said ‘Sawyer and Thomas’, and within a few moments the room was filled with exactly those things.
I have learned so much over the past few years living with my autistic son. I have learned to plan everything I physically can, and let the rest unfold as it will. During the holidays that means accepting it is okay to do things our way, even if tradition dictates otherwise. Sawyer did not eat roast dinner with us on Boxing Day. Instead, he sat in the room next door, with the lights low, his ear defenders on, eating a meal of his choice (turkey dinosaur in a bun) and watching Thomas tutorials on YouTube. It is something I fight with every day, finding the balance between keeping Sawyer involved in our daily lives, whilst also understanding that being alone is often his happier and safer option. Yes, it makes me a bit sad when he tells me he wants to be by himself instead of joining in with us all, but shouldn’t we all be given the opportunity to feel safe and content during the holidays? Screw the old traditions, we’re starting our own!
I’ve never really bought in to the idea of a fresh start for a new year, but today I’m practically waving £50 notes at it. 2017 was not the easiest year for us. We lost family members, and we mourned the loss of friends. Sawyer’s EHCP process took more of an emotional toll on me than I had expected, and all of this happened alongside the normal busy schedule of working parents with two young children. But today is New Year’s Eve. We survived the year, and we are still strong. Tomorrow will mark a fresh start for our little family.
And thanks to autism I will be able to see in the new year with my restless son snuggled up by my side.
Wishing you all the happiest adventures for 2018.
Happy New Year.