One Christmas stands out in my memory. Dinner at a relative’s was running late, the turkey wasn’t yet done but the house was filled with the sights and smells of Christmas. Our guy was three years old, maybe four. The sparkling tree had these round glass balls that spun when he touched them, he was drawn to them. I couldn’t keep him away. I feared the whole night he would break them. Relatives were full of consternation. Or at least that’s what I felt. There were piles of presents he wasn’t allowed to touch. Everywhere he moved he was met with a ‘no.’ I remember taking him in my arms to the stairs. We sat halfway up, me holding his squirming, screaming body tight, like a pro wrestler. Hoping for that moment’s release of tension that often came after a deep bear hug. I couldn’t have told you then why he was in this state. I just knew I wanted to leave, to take him home. But we didn’t. Couldn’t. Wouldn’t. Even now, a decade later, that Christmas haunts me. It was nobody’s fault but he was miserable. I felt defeated.
Too many other past Christmases flash through my mind. My own trepidation. His distress. I felt unable to understand why these days were not fun and full of the magic I felt at Christmastime as a kid. This was my favourite time of the year. My mother made it all so special. I felt like I was failing as yet another toy was broken in nanoseconds on Christmas morning, as yet another moment spiralled out of control, as yet another Christmas day was endured rather than celebrated.
Don’t get me wrong, we did have moments of wonder. Visiting Father Christmas. Tracking his journey. Hanging stockings. Carrots for the reindeer. Making paper chain decorations.
Putting up decorations could descend into a horribly tense time. Chaos and confusion. Tears. That sinking feeling would start to grow in my stomach and not leave until the decorations were put away. I felt Scrooge-like.
We didn’t know then. We didn’t understand. It was years before our guy had a diagnosis of FASD. I had no clue the very many ways all this was confusing him, causing him to be overloaded with sensory and cognitive input. I didn’t know why this was happening.
Flash forward to this year, Christmas Present. While he was out of the house one morning, I quietly put up only about 1/3 of the decorations we have, focused mostly in just one room. I put lights on the tree but left one box of decorations in the living room, too tired to finish it all. Later, when I wasn’t home, our now 15-1/2 year old son decorated the tree quietly, on his own. My husband said he just started to do it, so he let him get on with it. This never would have been possible before. My heart swelled three times when I saw that tree trimmed. It felt like something major had happened because it had.
This year our son only produced a Christmas list on Christmas Eve for Santa. Luckily Father Christmas had known our youngest had been waiting for a DMX controller for his growing stage light collection. If you’ve never seen one, it is an intimidating looking board with slider controls and buttons to manage different lighting effects. (Last year his main Christmas present was a moving head light, so yes he’d been waiting a year for this.) Father Christmas knew that DMX cables were needed. But things in the North Pole are a bit behind technologically and he didn’t know you also need a terminator to plug into the last light in a chain of lights that allows them to each be controlled independently. So, of course, these lights were not doing what our son had waited a year to be able to make them do. We discovered this before heading to his grandmother’s for Christmas dinner.
We arrived just as dinner was going onto the table. We have agreed this timing over years – so there is no more waiting around for hours, staring at presents. This year our guy didn’t want to sit with us to eat. He had a game to play in the hallway on his own. We occasionally put a little plate of food next to him (that he didn’t touch-he didn’t eat real food for 3 days over Christmas). No one commented. He joined us at the table for Christmas crackers. After the meal, our immediate family of four quickly gave and opened our own presents and left the rest of the extended family to open all of theirs while we were not there. Theirs is a whole-day event. We are only there for a few hours of it. His older brother ‘gets it’ and helped us identify when things were possibly starting to fall apart.
Back home, it became obvious our guy was now stretched to his limit. Even though we’d arrived late and left early, we had stayed too long. He was overtired. Overwrought. He was frustrated he couldn’t make the stage lights work as he wanted. He started swearing, saying they were rubbish and he wanted me to take them out. All of them. And the DMX control board. I started to use my calm voice, telling him he’s ok. But he kept insisting I take the lights and board out. He started to throw things. I stopped talking over him. I listened. I took out all the lights and the treasured DMX control board.
I had realised he didn’t want to break them.
I was so proud of him in that moment.
Once these had been taken from the room and I left him alone, things calmed. In Christmases past this whole scene would have ended with a smashed-up room.
He has learned to tell me what he needs. I have learned to listen. Only perhaps 2 or 3 things had been impulsively thrown. The scene de-escalated quickly. Nothing was broken. In this entire month, it was the closest we had come to those old hard days. And within 10 minutes we came out of it without any major problem. A tech savvy friend came to our aid on Boxing Day, showed him some fundamentals about how the board works, and told us about the missing terminator thingy, which we have ordered and will arrive by New Year’s.
During Christmas Present I have felt more festive than I have in years. Why?
- We have simplified these holidays.
- We have learned to listen to our son as he tells us what he needs. He has been helped over years to identify what he needs.
- We have stopped insisting he sit through long meals full of foods he doesn’t like.
- We have helped extended family understand his brain works differently and over time they too have changed their expectations of how we will participate in the holiday festivities.
- We have come to peace with the fact these holidays are different from what we used to have when we were kids.
- We have opened up and slowly built a wider network of support around us, so we have a core group of friends who ‘get it’. People who can come to our rescue when needed as our friend did on Boxing Day. He knew.
- (We also have taken out full insurance on every electronic item for years now, and that relieves great stress.)
I also feel more optimistic about Christmases Future than I have in a long while.
I wish we could go back in time. I would cuddle that confused and overwhelmed little one. I would take him to someplace quiet. I would have gone home when I knew he needed to leave. I would follow my mamma bear instincts and do so much different, even as we had to also ensure that the day was magical for our elder son. There were ways we could have done things so much better, had we known. But we didn’t know. He was undiagnosed. We thought he ‘had to learn.’ And I’m not saying this Christmas was perfect, I still needed a day basically in bed binge-watching sappy movies to allow myself space to recover. But I did. Because I know what I need now too.
I see in support groups so many parents have struggled and are still struggling this year. I get it. We have been there. There were too many Christmases that ended in tears, shouting, frustration. I am still there in some ways – still hypervigilant and expecting things to explode. But they didn’t this year, not really. And I have great hope for Christmases Future. I see the progress we are all making. Over time huge changes are possible with the right support, the right school, better tools, individualized targeted strategies, with insight that draws us back constantly to the fact that FASD is brain-based and these bewildering behaviours are not intentional. I am so pleased with the great strides we have made as a family. They are hard-earned and deserve to be celebrated.
I am so intensely proud of our son. The tree decorator. The DJ. The light master.
Despite it all, despite all the failings I still feel over Christmases Past, our young son’s continuing belief in the magic of Christmas inspires me to be a better mum, a better person. Progress is possible. And I believe with every ounce of my being that Christmases Future – indeed the entire future – can and will be even brighter.
P.S. – This isn’t all about mums, see also: Father Christmas Finds it Hard (2017)