Preparation is the key, right? For most what does this mean? Buying presents early, getting the food shop done before the 24th and making sure you have enough wrapping paper so there are no last ditch attempts at midnight Christmas eve? Preparations in our house were a bit different. They involved priming The Monster about Santa, talking about the big fella for weeks in advance. Putting up the decs late for damage limitation and keeping things really simple. This year I wanted him to “get it” a bit more. It was his fourth Christmas and other children his age were so excited. I Learnt a lot, thankfully, just before the festive period about how this time of year could be terrifying for people with autism and sensory processing disorder and reeled in my perhaps selfish desire to want to go all guns blazing before it was too late. Let’s look at some of the features that make a Christmas and un-pick them from an autistic, or our monster’s point of view:
Santa: a larger than life guy who dresses in bright red, breaks into your house and delivers presents to children who are on the good / nice list.
He’s sounding pretty terrifying already and I don’t need to see facial features to help determine someone’s emotions. I can hear in his voice that he is jolly. I can’t see his mouth nor his eyes and most of his cheeks are covered by a huge thick beard. I’m not deterred because aside from his face which I mostly rely upon to read emotions, his other body language tells me this man is safe. For any child, autistic or not Santa can be pretty terrifying! I suddenly thought that being autistic must be like walking around in a world full of Santa’s, people unable to read emotions using the facial features that we rely upon daily to know if someone is happy / sad etc.
We take The Monster to the same department store each year to visit Santa and this year was the best yet. He walked in, looked stunned that the guy out of his books and on the TV was sat there, snatched his present off him, played with the camera and equipment and then tried to gatecrash other kids visit. No tears but will need to work on better manners for next year!
Christmas tree: A huge (normally) green spiky tree that goes in the house, often in a space where something else normally goes. Covered in an array of coloured baubles, tinsel and lights.
Pretty huh!? How about completely overwhelming for folk that have sensory processing issues. I don’t think The Monster was upset by the tree but rather intrigued. He wanted to touch it and pull at it, making a beeline for particular decorations and lights. I’d been forwarned by nursery about how he “helped” put the tree up and I had been witness to him “helping” when collecting him. Hence our tree going up late. Ours survived but Nanny’s tree was victim to a fall at the hands of The Monster. Order and routine is a large part of many autistic peoples lives and having a tree pop up for a couple of weeks can be super disruptive.
Presents: products of all shapes and sizes, disguised by being wrapped in brightly covered crinkly paper. Mostly full of welcome surprises – but not always.
The Monster has never been one to rip into presents. In fact this year is the first time he has ever opened presents by himself (with a bit of encouragement). In The Monster’s case the act of opening a present isn’t to be rushed. In previous years he has had unopened presents as late as June (before you assume, he is not a spoilt child with loads of presents!). I was keen that any presents he had this year were opened on his terms, when he was ready to. It took about a week, opening a couple a day but they are all done!
I’ve heard about people buying the most inappropriate gifts for autistic children and fortunately we struck gold this year. The most thoughtful gift winner goes to my parents who got him a box of sensory based toys and included things like a harmonica, chatter teeth, oil filled egg timers, a sensory light that flashes all different colours, a maracca amongst other goodies. All relatively cheap but involved a lot of thought. You have to pick your moment to get the best out of him with it all but it provides a lot of sensory stimulation and learning and will work wonders for our 1:1 time. I would urge anyone that is buying for an autistic child to find out what their interests are etc, the monster has been given many gifts in the past that he simply won’t benefit from as he is either not there developmentally or he doesn’t have concentration for. Some old presents also haven’t stood the test of time because The Monster is so heavy handed. Because of his SPD he doesn’t always understand the art of being gentle etc and having to throw away a favourite car because it’s wheels have fallen off isn’t cool. I imagine this will get harder as he gets older and more attachments are formed.
People: crowded spaces, family, friends and more visits to people than would ordinarily be achieved in 6 months crammed into a 6 day period.
It’s Christmas and everyone wants a slice of the action with The Monster (totally understandable, he is awesome after all). I was super proud of how well he adjusted to being in up to four different peoples home in a day. Different trees, lights and presents in all places and a different set of rules in each house! It’s OK to play pretend phones in one house but this can’t be replicated in everyone’s – taking off with the cordless phone of an 83 year old is not the done thing! It’s OK to change the channel of the TV at one house but don’t expect the same appreciation if you try turning over at someone else’s whilst mid-programe. It’s quite a mixed set of instructions that if you think about could be confusing.
I find it stressful taking The Monster around visiting people. He is difficult to manage and not everybody “gets” him. He is a live wire and if you expect a relaxed visit where he will sit down for even 30 seconds you are mistaken. Instead he will rip through your house like a whirlwind, eat all your chocolates (and anything else he can get his hands on), pull your beloved cats tails, put finger marks over your TV and windows, post anything that will fit through the letterbox, and he will even pull the blinds out of the window if you get him excited enough! I leave visits feeling drained and stressed 99% of the time. The Monster generally leaves feeling wired. Something we have to deal with in the days and weeks that unfold as he processes everything, generally in the middle of the night.
Sleep: A period of rest and a time to recover from the day.
I know, I know. I always bang on about sleep! Maybe if I was getting some I wouldn’t need to! I fully expected The Monster to regress over the festive period. Taking into account all of the above then it is understandable and true to form he didn’t disappoint. In hindsight we should’ve contacted his paediatrician prior to the holidays to get some melatonin but stupidly we didn’t. As a consequence he would wake for hours at a time during the night. One night he got up for the day at 2am…..2am!! no further sleep required! There was a time not all that long ago that I would be going to bed at that time! At 34 weeks pregnant talk about less than ideal and there was no escaping it since he was in the same room as us. The one and only benefit of 5 nights with hours upon hours of broken sleep was that one day he had exhausted himself so much that he slept for 14 hours, that is an insane amount of sleep for him and rather gutting for me, my unborn child had other ideas about me following suit! Now, 4 days into the New Year, we are slowly getting back on track. Still the wake ups but less frequent and for less time.
So, how was our Christmas taking all of the above into account, plus the extra calories, extra travel, extra daddy time (he wangled 17 days off!) and extra Monster time (no nursery)? Well, I couldn’t be prouder of my boy who on the surface of everything appeared to take everything in his stride. He conformed to everything thrown at him and could almost be mistaken for a neurotypical child…in a hyperactive, non-verbal, crazy kind of way!
Things did take it’s toll though through ways he can’t control and by means which I am still learning about. Part of his persona is his need for sensory feedback, he seeks this from a lot of things, for example he craves rough play because he likes the feeling from it, he shouts in an environment that echoes because of the noise he hears back and to put it bluntly is heavy handed because he doesn’t know what pressure to use on things. He flaps his arms, spins and scrunches his eyes closed whilst shaking his head or walking because he enjoys the feeling known as feedback that it gives him.
Over Christmas his arm flapping became excessive, when excited he flapped his arm like a chicken flapping it’s wing, he walked on his tiptoes enough others to notice (one of the classic signs of autism) and the thing that I found most distressing was his middle of the night routine of pulling his duvet over his head and entire body, not leaving so much as a toe uncovered. He would wriggle and writhe under the covers desperate for some relief or release of something, I don’t know what but whatever it was it wasn’t working. He did this for hours at a time and nothing we did could comfort him. We tried deep pressure, huge hugs and wrapping ourselves around him to give him the feedback he needed but it didn’t work. We were helpless, the duvet was helpless, everything was helpless and it made me sad. Moving into this year, I am going to do all I can to understand him more, to understand others more and to understand the fascination that is autism and sensory processing disorder. The more I Learn the more intrigued I am, I hope through our journey you learn something too, or perhaps you can share your experiences. Buckle up, come along and enjoy the ride!