Christmas reimagined

Difficult days with our autistic son made me hate the festive season... until we found a better way for our family to enjoy Christmas

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As a parent, there’s a romantic notion that once your children are three or four, Christmas will become magic for the adults again. It’s a societal ideal that makes you believe some sort of festive dust will settle over the household and bring back the magic of Santa as you experience Christmas through your child’s eyes.

But that doesn’t always quite happen. 

My brilliant son, Sidney, four, is autistic. He has sensory as well as fairly complex speech and language challenges - something that was initially flagged as a simple ‘delay’ by his nursery.

Now, he’s very verbal, and hearing Sidney express himself is a joy. Nevertheless, there are certain elements of basic understanding that Sid still can’t grasp in full. Sometimes he lacks a deeper understanding of what is being said, echoing or repeating what others say. But, he’s getting there day by day. He’s a star.

Growing fast: Sidney happy at home. Photo: Dan Hughes

Growing fast: Sidney happy at home. Photo: Dan Hughes

The early festive seasons

Sidney’s challenges were flagged to his mum Lynsey and me when he was around two years old, shortly after Christmas in 2018. That particular Christmas had passed by without incident. I hadn’t expected Sid to understand about Father Christmas, or really get excited by all the festive bells and whistles at that age. Those first couple of Christmases with Sidney had been wonderful for Lynsey and me - a low key affair filled with food, cuddles and naps.

Looking back, I now realise that while Sidney did his best to cope, the sensory stimulation was without a doubt too much for him, even at that young age.

At that point, I had been largely in the dark about autism, and hadn’t yet learned Sidney’s tells - the clues that might have given us a steer on when he was overstimulated or struggling to cope.

Now, I know when Sid posts things (putting toys and objects in pots, cups, vases or behind furniture), it’s his way of telling us he is overstimulated or anxious. During his second Christmas, Sid spent large portions of Christmas Eve, Christmas Day, and Boxing Day posting. The noise, lights, presents and continual flow of people had been too much for him.

Toddler Sidney at Christmas time. He struggled to cope. Photo: Dan Hughes

Toddler Sidney at Christmas time. He struggled to cope. Photo: Dan Hughes

The following Christmas, Sidney was teething and had a bad cold. Coupled with too many twinkly lights, the festive events had left him in a terrible state. He sobbed all of Christmas Eve, right through to the morning, trying to sleep as we comforted and settled him again and again. It was exhausting for us all.

On Christmas Day, we kept everything quiet and calm, ensuring Sid got the mental and physical rest he needed. We spent the rest of the festive period in recovery mode. At that point, we were quite certain that Sidney's challenges ran deeper than a developmental 'delay'.

The following Christmas, Sidney displayed a tenuous grasp of Father Christmas, the festivities and presents. It started off as an exciting time, and overall, it was a fairly smooth affair. We had learned to strip our plans back a lot but there were a few meltdowns and lots of stimming - repetitive, self-stimulatory activities like flapping hands or running backwards and forwards in the same pattern for a long period, for example. It was likely a sign that Sidney was still having trouble coping. I felt like I had let him down once more.

Dan and Lynsey with Sidney on a trip to Santa’s Grotto. Photo: Dan Hughes.

Dan and Lynsey with Sidney on a trip to Santa’s Grotto. Photo: Dan Hughes.

Never again

Last year, we made sure to keep our plans to a minimum and didn’t place any pressure on the day itself with packed itineraries, several house visits, and too many over-stimulating colours, lights, and activities.

At first, to our pleasant surprise, Sid showed enthusiasm for the festive period, asking, ‘is Santa coming?’ and wanted to decorate the tree. 

I thought we’d finally have the enjoyable and magical Christmas we’d hoped our son would one day experience, so we took Sid, to Alton Towers for ‘Santa’s Sleepover’. 

We counted down the week to prepare Sid for the overnight stay away from our home and took some of his most treasured comforts along. We were more excited than merry elves under the mistletoe.

As soon as we got to the hotel, things began going sideways. Sidney spotted the waterpark we were booked in for the following morning, but wanted to take the plunge there and then. He began taking off his clothes and when I gently stopped him, he began to meltdown in the middle of the hotel reception, an event only intensified by the flurry of lights and activity that surrounded us.

Sidney at Alton Towers. Photo: Dan Hughes

Sidney at Alton Towers. Photo: Dan Hughes

The problem wasn’t Sidney, but that our itinerary was rigid and didn’t align with Sidney’s expectations. Given his language challenges, guiding him through the process verbally wasn’t always an option, as was proved in that moment. We felt nothing but empathy for our son, and did our best to go somewhere quiet to reset and start again.

We had a rocky, yet fairly jovial day overall and dinner was great. We decided to swerve the evening entertainment as it would likely be too much for Sid - something we may not have recognised even a year earlier. Only that day, we’d left Santa’s grotto because Sid couldn’t sit through the show - something we’d realised was too much for Sidney during a season that is 'in your face' from start to finish.

That night, coming down from the day’s stimulation proved difficult. Sidney had become over-tired and was upset for hours.

Obligations

Dan and his wife, Lynsey. Photo: Dan Hughes

Dan and his wife, Lynsey. Photo: Dan Hughes

We made Christmas Day as quiet as possible but in the lull before New Year, we’d promised to visit various family members. As an anxious kind of bloke, I often feel like I’m letting people down, so out of duty, I did some of the festive rounds, taking Sidney to the park and on outdoor adventures in between.

But, in honesty, the whole thing was stressful, strained, and disheartening for Lynsey and me. We had gone through the festive motions, doing what might be expected of us as parents of a little boy (the hotel stay, the grotto, visits to family), but had instead merely synthesised the festive experience, rather than enjoying it.

At the end of it all, I realised that I didn’t hate Christmas and couldn’t wait for 2020 to roll around - somewhat ironic now, given the year we’ve all had. 

Never again, I thought. It’s time to start anew.

New beginnings

But after a few weeks, and with the strain of the festive season fading into the background, I realised I didn’t really hate the festive season. In fact, I’d always loved it.

Growing up, we didn’t have much, but my mum always went out of her way to make the day as magical as possible for us. Her effort and the fact that we got to hit pause on our busy lives to eat, drink, laugh and be together was what made it special,  and remains so today with my own little family.

Dan having festive fun with Sidney. Photo: Dan Hughes

Dan having festive fun with Sidney. Photo: Dan Hughes

Knowing what we do now about our boy, this Christmas is going to be different. Now, we have Sidney’s diagnosis and understand how he processes the world a little better. We’ve learned a huge deal about autism and neurodiversity, reading widely, and have really tapped into what makes Sidney feel comfortable - or unhappy - in different situations. 

As I cast my mind back over the past few Christmases, I can now weave together a tapestry of moments where Sid was truly happy. Like when we played human jack in the box in the living room, he gleefully cuddled his life-sized CBeebies heroes, and sat content in the laps of his grandparents.

This year, armed with my newfound knowledge and a better grasp of Sidney’s needs, I’m optimistic that we’re going to have a good one, whatever that may look like in a pandemic. Sidney being cast as Joseph in his first school nativity is a special start to the season.

We will use PECS (visual cue) cards and picture boards, like we do every day now, to show him what is happening, give Sidney plenty of choices based on what he does and doesn’t want to do, keep the decorations in our house to a minimum, be sparing with presents, and will spend some quiet time together between Xmas & New Year - just the three of us. 

If you’ve struggled like we have over the years, I hope this year’s festivities are okay and please know, your Christmas is exactly that - yours. Try not to feel pressured by convention or what other people expect of you - do your thing, at your own pace, prepare as much as possible, and it might just be a Christmas to remember - for all the right reasons.

Dan and Lynsey holding baby Sidney in Christmas jumped. Photo: Dan Hughes

Dan’s tips for a neurodiverse Christmas

*Try not to put your decorations up too early

*A modest tree and a few candles or ornaments around the house will do.

*Prepare your child with laminated storyboards mapping out what’s happening

*Use PECS cards to give your child choices about how they want to spend Christmas

*Don’t feel guilty about saying no to invites and spending time away from family gatherings.

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