Chronicles of Autism: Its F*&king Christmas!

How many times do you think a 6-year-old can say the F’word in a single hour, day or week?? Well, I can tell you it’s a gazillion.? And the reason I can tell you this fact is because sometime in the last few weeks I have moved from just plain old Grandma which I liked very much to f*&king Grandma. I like this a lot less, not least because there is absolutely no limit to the number of times this gets said in an hour, a day or a week.?

Christmas can be a really challenging time for an autistic child.? I know this from personal experience. ?Two years ago, I arranged an assortment of Christmas treats for my grandson, resulting in the spectacularly noisy ousting of Santa Claus from his own grotto as we - and poor Santa and his Elves - endured a meltdown of astronomical proportions. I will never forget the sight of Santa stood outside in the cold, in the star lit grounds of a well known North East Heritage spot whilst we managed the meltdown from the cosy space he'd expected to sit!

Two years on it’s a story for our family scrap book that we can smile about now, but it was also an early and important lesson in how to care for a child with autism.?? So, this year we did something different.? We booked his favourite holiday activity, a caravan park with a hot tub, a swimming pool and an amusement arcade and set off for three days of fun not far from the Humber, not a Santa or an elf in sight. ??

Now, three days doesn’t sound very long until you do the math and realise its 72 hours, or 4320 minutes or 259200 seconds – then it seems longer.? When you add in to this a six-year-old boy with an uncontrollable urge to swear at you every second he is awake you can appreciate this is a lot of swearing!?

It’s clear for whatever reason, the phrase "F*&king Grandma" has now become an uncontrollable verbal tick for him. He says it even when he’s happy or excited, when he’s giving or receiving love, when he's playing, and even when he's singing he'll find a way to weave it happily in to his verse so there’s very often no malice in it – although that does come occasionally and when it does it’s brutal for us both.??

Now, I know he is not in control of this and so I’ve made gargantuan effort to let this go over my head, to remain an oasis of calm, understanding and consistent in my determination not to respond. My success has come at a cost because after 3 days of it (which is 72 hours or 4320 minutes or 259200 seconds) I can tell you I have developed my own uncontrollable tick in the form of a nervous twitch under my eye!

This is ridiculous I know, its only a word, and if he was shouting anything else a gazillion times a day I probably wouldn't have the same response. He is not in control of it so I'm not sure why I am letting this get through my armour but I am. I can't explain it, I will need to work it through so I can do better. But that's a blog for another day. ?

But what I do know right now is that every cloud has a silver lining.? Hull, which was the UK’s City for Culture in 2017, is indeed just that – a City of Culture, creativity and kindness.? Everyone we came in to contact with from the swimming pool attendant through to the waiters and the people wandering around the City Centre received my noisy and cursing grandson with nothing but kindness and understanding. ?

Not a single head turned in disgust, there was no tutting, no pointing, no turning the other way. We received only genuine attempts to accommodate him, to make him comfortable and to help us enjoy our time out and about.? ??I guess after centuries of welcoming sailors from across the globe they’ve probably seen and heard it all!

Before I close, I should tell you I’m not the only person to receive this change of name and status, Santa is also in the firing line. So for us Christmas must be about something different, we have to stay away from the jolly man in the red suit and abandon the traditions we enjoyed with our own children to create something very different and we're still working out what that's going to be, taking the joy where and when we can.?

Here's how you can help .....

If you’ve taken the time to read this, I’d like to thank you and to ask you simply to consider how you can adjust your expectations to help a person with autism get through the festive period and find their own way to joy.? It won’t be the same as yours, but with a slight adjustment from you it could be just as wonderful.? Here are some ideas for you to consider. You an also visit https://www.autism.org.uk/advice-and-guidance/topics/leisure/christmas/tips