We all look forward to our children becoming old enough to enjoy Christmas. As a baby, Chris’ reaction seemed pretty typical. Like many babies, he was more interested in the wrapping paper than the presents. He was just there, a happy little thing, blending in with the festivities.
Even at age 3, despite his delayed development, he was quite content. With hindsight, I think we were already managing his complex needs; we just didn’t know it yet.
By age 4, autism was starting to make a significant mark on our world and the lack of language comprehension and sensory difficulties made Christmas a confusing and stressful time. Little things like a visit from an excited auntie on Christmas Eve, laden down with presents, were enough to send Chris into full blown meltdown. And we hadn’t yet learned the strategies to help him, and us, cope.
A lot has changed since then. Diagnosis came when he was 5 and we then moved him to a specialist school. He thrived in that environment and we were able to access training and support, giving us a greater understanding of autism and crucially, strategies for Christmas and other key times of the year.
We use a schedule from the beginning of December, so he can see how many more days he has left at school, when term ends, when the big day is happening and when it’s time to go back to school.
In previous years, even the use of an Advent Calendar was too much for him, as he would try to eat all the chocolates in one go. But now, it’s more meaningful to him, he cheerfully searches for the right number and eats one chocolate. For those 24 days, it’s much easier to get him out of bed in the mornings too!
Like many children with autism, anxiety is a big issue for Chris, so we’re careful to build up to Christmas in a way that’s fun, but gentle. For example, we don’t take him to the official opening of the Christmas lights as the crowds and waiting around are too much for him to handle. Instead, we take him out for drives past the town lights and seek out the houses that have become famous locally for their extravagant displays. This way, he can enjoy the lights from the security of the car, and the benefit for us is that we don’t get freezing cold!
We also include him in putting up the tree and decorations. Preparing them overnight and shouting “surprise” in the morning probably wouldn’t get the reaction we’d hope for, so we do it together.
People often comment to us how well he copes in social situations over Christmas. What they don’t see is the fallout after. The following day, he will often be emotional, and stimming such as loud echolalia and shouting will increase. We also notice that his spatial awareness will be off, resulting in him being more clumsy and accident prone. So we spread out trips out and get-togethers with friends so that there’s a day or two between for him to relax and rebalance.
When we’re with friends and family, we watch closely for signs that he’s starting to struggle. Earlier in the year, a well-meaning relative at a barbecue told me that he was keeping watch at the window while the other children had a pillow fight. She thought he was having a great time, but he wasn’t having fun, he was afraid because he was anxious about the possibility of thunder and lightning. He’d had a phobia about it for 3 months, constantly looking out the window to check the weather.
These are the kinds of misunderstandings that occur regularly; things are often very different to how they look. But that’s okay, it’s up to us to be vigilant and step in if we need to. His coping mechanisms have increased massively over time and it’s wonderful to see him having fun and enjoying the company of others.
We can all get a bit emotional at Christmas, and for someone with autism that sense of feeling overwhelmed is heightened. But it’s just part of living with autism, and while we can take steps to reduce the possibility of a meltdown, we can’t control everything around us. So we accept that, at some point during the holidays, he will have a reaction.
If he has a meltdown at home, we can give him space and ride it out. Sometimes, a lie-down in the front room with the lights low is enough to bring him out of it. If we’re out, it may be a case of coming home early or finding a quiet space for him to calm down.
I’ve recently attended training about Zones of Regulation and helping Chris manage his emotions when out and about, so we will be trying out some new strategies this year, which may help him cope better out in the community. Every year, we notice changes and development in the way that he reacts and deals with Christmas, so our strategies are likely to change as time goes by.
Sometimes we have to make difficult decisions and choices about what to do and when. This means occasionally turning down an invite, if there are too many activities happening in a short space of time. Over time, we’ve learned to make decisions and own them. We accept that we don’t get it 100% right all the time and that we don’t please everyone, but that’s okay. We’re at peace with that.
We take the view that there are 12 days of Christmas, so there’s plenty of time to see everyone. It doesn’t all have to happen on one day.
We know we’re lucky that Chris engages with Christmas, and enjoys opening his presents on the big day. It’s taken us a few years to get to that point, but it’s lovely to see him anticipate a visit from Santa and get into the spirit. Sometimes he will open the presents and not play with them for several days. The year he wanted a bowling set, he played with it all day and then put it away in a cupboard for several months.
We go with the flow, because we don’t need him to do Christmas in a particular way. If he doesn’t want to wear a party hat or tuck into a full roast dinner, that’s fine. If he needs to take time out and get space in his room, no problem. We just want him to feel happy, safe and loved. He’s not responsible for our happiness; we’re responsible for his. And that means accepting and allowing him to be who he is, on Christmas Day and every other day.
Our Christmas may not be perfect in the traditional sense, but it’s full of acceptance, understanding and kindness. If you ask me, that’s as close to perfect as it gets.
Alison is a parent of two boys, Freelance Copywriter and novice Labrador owner.