So, it’s December. And we all know what that means. It’s the build up to the most exciting time of the year! Right?
I’ve always loved Christmas – like, I’m a seriously MASSIVE fan. My childhood Christmases were magical. Full of family traditions and excitement. I was very lucky.
My Granny was the best at Christmas. Everything was done properly. From making the Christmas cake mixture weeks in advance and everybody stirring it on ‘Stir-up Sunday’, to gifting us all the most beautiful advent calendars (traditional of course – not plastic and full of chocolate!). She always had a real ‘Yule log’ – especially selected and saved to burn only on Christmas Day; and her homemade Christmas pudding was always filled with carefully wrapped silver coins. I literally have no idea how she did it and executed it all so magically.
My adult (and parenting) reality is quite different to this. Living far away from family means that Christmas is very rarely spent in our own home. It usually involves a long journey, a shift in environment, different personnel and dramatic changes to routine. If we want to spend Christmas with family, which we inevitably do, then all of that stuff, one way or another, is unavoidable.
Unfortunately, for Martha, that means that whilst she enjoys the festivities and gets excited in the same way other children do, the situation can quickly become overwhelming and there’s too much going on for her to be able to cope with. There are also issues around shared parenting of course. It’s one Christmas with me and the next with her Dad. Alternate Christmases with each parent have taken a bit (read – a lot) of getting used to for all of us.
The build up to Christmas throughout December can be pretty fraught to say the least. Managing Martha’s expectations is no mean feat. If you don’t like change much, then December must be a pretty challenging month to contend with. Decorations appear everywhere, and furniture gets moved about to accommodate them. Routine changes to accommodate extra activities such as rehearsals, carol concerts, school plays and other such festive events. People want you to wear Christmas jumpers (which are mostly itchy and uncomfortable) And so it goes on ….
I’ll never forget a couple of years ago, having spent the best part of 2 hours getting Martha ready for bed and settling her to sleep one night in December, only for her to be abruptly woken at 8pm by the dulcet tones of Shakin’ Stevens belting on loud speakers outside the house, followed closely by a banging on the front door by people with collection buckets as the annual Round Table Charity Santa and his sleigh came by. Martha leapt out of bed with both horror and excitement and of course wanted to dash outside to see Santa. The dismay on my face as I waved goodbye to the last two hours (and inevitably the next two hours) of my evening, knowing we’d have to start the bedtime routine from scratch again once Santa had moved on.
To add to all of this, Martha sleeps naked. Her sensory issues mean that she prefers to wear as little as possible most of the time and bedtime is one time of the day that I choose not to battle with her over this. After all, when you’re in bed, you should be at your most comfortable and relaxed, shouldn’t you?
So off she raced towards the front door, closely followed by me (in my own pyjamas, having just showered and got ready to settle down for the evening) holding a dressing gown to cover her up (it was also December = freeeeeezing … but Martha doesn’t really feel the cold either – another story!). This was an unsuccessful mission, as she made it out of the house before I did and proceeded to approach Santa, naked, screaming, shouting (and probably swearing). I just about managed to get her dressing gown around her before she reached the big man, but let’s not pretend that I’d managed to tie it up properly or that all the neighbours and various members of the round table hadn’t already had a glimpse of Martha in all her unbridled glory. Not that she gave a shit of course, because she didn’t. She didn’t even register that it mattered.
Martha still doesn’t grasp the inappropriateness of being naked around other people (at 10 yrs old now, we’re really having to teach her about the boundaries of acceptability and appropriateness and talk to her about why it’s not ok to answer the door with no clothes on or to wave at the binmen as they come by wearing nothing but your birthday suit!)
Anyway, back to the point in hand, and all of the aforementioned factors make it really difficult to make any two Christmases exactly the same. There’s just no feasible way for us to repeat exact routines and traditions from one year to the next.
I listened to a talk before Christmas by a guy called Ronnie Pinder, an autistic adult and self-confessed lover of Christmas. While many people with autism say they hate Christmas (often mainly because of all the changes it brings) Ronnie loves it. But the reason he loves it and can cope with those changes (aside from the obvious fun and festivities), is because Christmas is done exactly the same in his house each year.
To a T.
He watches the same films on the same dates each year, he puts up exactly the same Christmas tree on the same day every year (his tree came from Woolworths!) and follows exactly the same family traditions every. single. year. If all of these things happen as they should and nothing changes, then Ronnie’s Christmas is perfect and he’s able to enjoy it to the full. Changes to this quite rigid schedule, are another matter!
I tried to take some learning from this to help make things easier for Martha this Christmas time and whilst there are lots of things I can do to ensure many traditions are the same each year, making Christmas EXACTLY the same is an impossible feat for us.
I’ve instead come to the conclusion, that the key to as smooth a Christmas as possible for our family, has to lie in the expectations we have of it in advance. We almost have to ‘re-learn’ Christmas all over again. Whilst I can remember and relive all the wonderful memories I have of Christmas as a child, wonderfully executed by my brilliant Granny, along with my parents of course, I have to park that idealism when it comes to what our own family Christmas might be like.
That’s not always easy. Parking even just your own expectations, traditions and excitement can be difficult (especially for the big kids among us!), but when you have others to consider, such as siblings, partners and wider family, then sometimes it means helping them to park or manage their expectations too – or if necessary, making the choice to remove yourself from other people and their expectations altogether. Sad as that may seem, it may make for an easier and more joyful Christmas all round (depending on your circumstances.)
One such expectation is when it comes to the buying and giving of gifts. We’re not always clear on what Martha really wants and sometimes just have to use our judgement – which isn’t always correct.
Martha also cannot pretend to like something or feign interest in something she finds dull; like new clothes or underwear. It doesn’t mean I don’t give her those things, (after all she still needs them like everyone else), but I, and anyone else who gives Martha a gift, simply has to remove their own expectations about how she might react, which may not always be with delight and joy. It may even be the opposite. So be prepared to be told your gift is shit or boring or f****ing stupid.
I can be sorry on her behalf, but she won’t be. She’ll just tell it like it is.
We all have this vision, for example, don’t we (?) of Christmas morning running downstairs to tear open all the presents at once; excitement and delight at each one. Everyone joyful and happy at what they’ve opened and excited with anticipation of what may lie inside the brightly decorated wrapping paper of the next?
This just isn’t always the case for us. Don’t get me wrong, we do have elements of all that and many moments of happiness and delight; more so perhaps as Martha is getting older and beginning to really understand the concept of Christmas; but we also have a heightened sense of anticipation in a fearful way: What’s inside? What if i don’t like it? Frustration at not being able to open something quickly enough.
As Martha is getting older she’s learning to feign excitement too. She’s always mimicked others. So, for example, she might squeal and jump up and down because she’s seen others doing that, or because she thinks that’s what she’s supposed to do in that moment – not always because it’s her genuine response. Learning to fathom when that is the case and when it’s not can be tricky. We can literally be on a knife’s edge of her pretending to enjoy a situation (when she’s really not) and on those occasions things can very quickly turn sour.
Something we have learned is, that it’s just too much for Martha to open all her presents at once. It simply leads to overwhelm and doesn’t give her brain time to catch up with what she has opened and what she might like to spend more time looking at or playing with. Sometimes, if people give her a gift before Christmas, we just let her open it. It helps minimise the anxiety of anticipation and spreads out the enjoyment over a longer period of time, rather than being all at once; potentially resulting in stress and overwhelm. We spread out the opening of gifts over a number of days, rather than everything on one day. What does it matter?
Geoff Evans, an independent Autism consultant and trainer who has worked with autistic people and their families for more than thirty six years, made some really good suggestions about how to manage expectations and behaviours around Christmas, during a recent presentation about autism and festivities.
In order to appease anxiety around expectation in a gift, for example, he suggests that for some autistic people, they may prefer gifts to be wrapped in cellophane (or similar) so they can see exactly what they’re getting while still being able to partake in the joy of unwrapping it. Or you could stick a picture of what’s inside on the outside, removing any uncertainty. Geoff also advocates asking the autistic person what they specifically want and getting them to show you a picture (or the actual thing) and getting them EXACTLY that and nothing else. No surprises please! Their expectation may be of a very specific colour-way for example and even if you get them exactly what they want BUT it happens to be a different shade, colour or size then you should prepare yourself for a negative reaction.
Another tricky thing to manage around Christmas time is control. Especially when it comes to food. Martha doesn’t have any control when it comes to food and eating, so if she sees something she likes and wants to eat, then she will (much like her mother!). Geoff suggests hiding as much away as possible and not leaving it on display. Huge spreads of food will result in a person taking large quantities of food or continuously grazing and snacking. Sometimes, it’s too complicated to understand why there are three packets of my favourite crisps on the side but I’m not allowed to open them until a specific day or time. It’s often easier said than done, but removing temptation as much as possible is the only way forward to avoid hours of nagging, begging and whinging or a worse alternative, an autistic child throwing up from over-eating (I appreciate that any child throwing up from over-eating is never pleasant but there are further complications that come with a sick autistic child which I won’t get into now.)
In conclusion, a lot of what we know, understand and have come to expect from our experiences of both parenting and of traditions, simply has to be re-learned as the parent of a child with autism. As someone with quite ingrained ideas about how things should be (both when it comes to tradition AND parenting) I continue to find this a difficult adaptation. However, I do feel as though I’m getting better at it all the time. With time and experience, comes knowledge and strength. No-one else knows your own child like you do and there are very few instincts more powerful than the parental instincts of needing to protect your own child and wanting them to be happy.
So, I’m learning to park my own expectations, understanding the need to sometimes manage those of others around me and to accept our own reality. And rather than feeling sorry for myself that things haven’t quite gone as I’d hoped – I may even try to embrace our new traditions from time to time!