So I’ve been thinking about the C word recently. Christmas (what did you think I meant?). I’ve always done my shopping earlier than others, but since kiddo came along I’ve started even earlier as I never know when a particularly tough phase of behaviour may begin, leaving any free timeI have at the mercy of autism and it’s consequences. So shopping starts in September so I can enjoy it, and it remains a pleasure and not a chore.

I’ve always loved Christmas. As a child I was swept away by the twinkly lights, engulfed by the carols and the Christmas Story at Church. There was something different about the way I breathed in the air, as though it had sparkles in it, and I would glow from head to toe. I had a willingness to help out with mundane jobs that as a child I would never consider at any other time of year. There were always three things I remember the most when preparing for Christmas at home. They all involved my Mum who was the epitome of Christmas in my eyes. I remember the big Christmas shop I always used to do with her (online shopping wasn’t really a thing in those days). Putting up the tree she had so painstakingly chosen with the same friend of hers every year (they would spend all day travelling around the county looking at trees and nearly almost certainly buy the very first one they saw). And finally, decorating our Christmas grotto hallway. It was the most beautiful sea of fairy lights you have ever seen. Our thumbs were always red raw and bleeding by the time we had finished pushing in all the tacks. We used to lie on the floor and stare up into the endless sky of multi coloured stars that we had created in our home. Such beautiful memories.

But why am I telling you this? Five and a half years ago my Mum lost her battle to cancer. As you can imagine it was a really hard time. Christmas was the hardest. Still is to be honest. I vowed I would continue with our beautiful traditions, for I too wanted to enjoy those moments with my own child. And so came the year when kiddo was finally old enough to help me decorate at the age of 2. And it couldn’t have gone more wrong.

You see, children with autism and sensory processing disorder can’t process intense light or sound. What is Christmas filled with? Intense light and sound. And so the Christmas before last we learnt the hard way, and our new Christmas traditions began.

This particular year I had decided to recreate the scene in the film Elf, you know the one where he decorates the department store? Our hallway was filled with sparkly white lights and paper snowflakes. But the kiddo wouldn’t go near it. He didn’t once stop and stare, his movements through the hallway were swift and fleeting. Oh well, I thought, he’s only two, he just hasn’t noticed. 

I continued on with decorating the rest of the house. Tinsel, lights, the works. I brought kiddo down from his night of slumber the morning after, filled with excitement for the look on his face. But it wasn’t the look I was expecting to see.

A panic started to swirl in his eyes. He looked around and I physically watched him shrink into a tiny ball. The last thing I remember was seeing his back as he ran to his room screaming. He wouldn’t come out. It was then it hit me. I hadn’t created a marvellous wonderland for my child, I had created a living hell. A hell his eyes nor his ears could tolerate. He was terrified. 

I calmed him in his room and brought his breakfast to him in bed. Then I sat on his floor and cried. I have never felt disappointment like I did that day. I wasn’t going to be able to carry on my mum’s legacy. My house wouldn’t be one she was proud of, and it wouldn’t remind me of those childhood years of excitement. My own child didn’t want those years for himself. All I had now was a bank of beautiful memories which still come to the surface every year. 

As I took down the decorations at the start of December, I wiped my tears away. I realised they were not for my son that day. They were for me. This parenting journey had certainly not been what I had expected, but every child loves Christmas? Don’t they?

I took everything down except the tree and put them away. As I pottered around, the kiddo asked to come downstairs. “Ok”, I said, “but the tree is still up”. I carried him in my arms, ready to protect him from the pain that the Christmas Tree could project (seems like a crazy sentence doesn’t it?). But it didn’t happen. In fact, the opposite happened. Kiddo totally fell in love with this tree! It would seem that with all the other excess decoration tamed and put away, kiddo was completely enraptured by this tree! So much so, that we even have a picture of him and I placing an angel on the top. Of course nowadays it’s a star, because he can spot a shape anywhere…

This year we will have the most beautiful tree that kiddo and I will decorate together. And those are the memories I will make. The lights will not be turned on until kiddo goes to bed, and there i will sit next to our tree, with a cuppa and smile remembering all the festive times I was so lucky to have with my own mum.

As a family we have now found the right level for our Christmas. But I know that families find it so so hard to help other extended family members understand why their children can’t cope in busy households, with lights, noise, music, people, movement…

If you have someone with autism in your family, please, consider what is right for them and not what is right for you. Don’t make the same mistake I did. Children (and adults) with autism want to enjoy Christmas as much as you do, so don’t make it impossible for them to do so.

One last thing… if you think you understand how hard and challenging it is to take a child with autism shopping on an average day if the year, please spare a thought for them at Christmas.

Almost every single store has extra lights, sounds and decorations. It’s sensory overload wherever you go. If you see someone struggling, remember not to judge. The same as for those who are grieving, those with autism and SPD are often in more pain at Christmas than you could imagine. For Christmas is not “the most wonderful time of the year” for everyone. For some it is truly a painful experience. So let’s do what we can to help them find their Christmas joy.

It’s already September… best get cracking 😉

Thanks for reading,

Danielle