Last time out I told you about how, until last year at least, my daughter Robyn totally rejected anything to do with Christmas. From reading this you could be forgiven for thinking that all children with autism hate Christmas, but it isn’t necessarily the case. From what I have read, a loathing of Christmas due to the complete disruption it causes is not uncommon among children with autism, but there is also twinkling lights and excitement to stimulate the senses, and some autistic kids really enjoy this. In our house, there is a 50/50 split in attitude towards Christmas amongst our autistic offspring. Robyn hates it. Liberty absolutely loves it, possibly enough for both of them.
For Libby, Christmas starts as soon as possible. If she gets a sniff of the festive season in October, then she’s all over it; she starts singing Christmas songs and doesn’t stop until about April. She watches The Snowman all year round. We decorate our house (minus the main tree) in early December, and as Libby walks around the place she regards her environment with wondering awe. She can’t resist handling the figures in the Nativity and gazing longingly at the twinkling lights.
But before we get to Christmas Day, we first have to negotiate Christmas Eve. It’s a day where we have to make sure we get out with the girls as we know they’re likely to be mostly cooped up in houses over Christmas and Boxing Day. Of course, the British weather means that outdoor activities are often ruled out so, in their younger years at least, we would take them to one of those indoor play centres that go by the name of something like Wacky Warehouse, Jungle Gym or Chucky Cheese’s – it seems you can call them what you like as long as the phrase uses alliteration.
The problem with these places as a destination for our pre-Christmas workout for the girls is that not many other parents take their kids to them on Christmas Eve. These people are probably too busy with Christmas preparations and know they can get their kids to be good at home by threatening them with letting Father Christmas know they’ve misbehaved. Christmas Eve is never a good day for kids to upset the big fella. But that threat doesn’t really cut much ice in our house. So, because their indoor playhouse business is not very busy and the workers themselves have plenty to do in their own homes, they have a tendency to close early. We were caught out by this one year, as they were already closed when we got there, despite the fact that it was a good couple of hours before the official closing time. This meant that we had to find some other place for the girls to expend some energy on a rainy Christmas Eve; not easily done.
The following year we called ahead to see if they were staying open until the official closing time and they assured us that they were. When we arrived though, they tried to turn us away because they had decided to close early after all. Karen and I are not the kind of people who complain about service in restaurants or shops; we’re just not pushy people. However, we were prepared to make an exception for someone who was about to ruin our Christmas by not allowing the girls to have their last mad run around before the beginning of the festivities. We told them we’d called ahead, we had special needs children who needed to use their facilities and we weren’t going away. They asked if we minded if they clean up and vacuum the place while the kids played. We were more than happy for them to do so as long as they let us in, and this meant that George, Robyn and Liberty had the run of the entire place, and after an hour or so they were thoroughly sweaty and tired. Which is the whole idea.
In our preparations for this Christmas, Liberty has started to do something that reminded me of myself growing up. When I was quite young I liked to go snooping in my parents’ room for Christmas presents that they might have bought for me, although I learned after a while that knowing what presents you were getting made Christmas morning a bit rubbish. In fact, I actively avoid finding any presents in our room these days, and I still hate it if I inadvertently stumble upon something that Karen’s bought me for Christmas, as it has spoilt my surprise. So, this Christmas, Libby has learned to snoop. Karen and I have had to remember to keep our bedroom door locked shut at all times or bad things can happen.
A couple of weeks ago someone left the bedroom door open not long after we’d had a special delivery from Disney.co.uk. The box was a veritable treasure trove of Disney goodies, all of which were for the girls on Christmas morning. Trouble was, once Liberty had seen them there was no way of explaining to her that she wasn’t allowed to have them until Christmas Day – that’s a concept she just can’t understand. She gets impatient waiting for her popcorn to pop in the microwave, so there’s no chance of her getting her head around the idea of waiting three or four weeks for a present she knows is on the other side of the door right now! It was a hellish morning for us as Libby went nuts at least every five minutes to try and get into our bedroom to get her hands on those presents. So, when she was out with her care workers that afternoon, Karen wrapped them up and hid them in the loft. Once we could take Libby into our room and she could no longer see the Disney toys, she was happy to forget about it. The beauty of it is this; on Christmas morning it will be like she’s never seen these presents before, and she’ll gasp in awe in that wonderfully over dramatic way of hers that she copies off the movies she watches.
We eat Christmas dinner at my Mum and Dad’s house, and it’s a big traditional affair. Most of our family that live in this country, probably about 25 of us, gather around a huge table for roast beef (we’ve never understood why the most important meal of the year is celebrated with the cheapest, driest meat there is, so we have our favourite instead) with all the trimmings (not just some of them, all of them). But Karen and I have learned to take necessary precautions if we have any intention of participating in this family celebration. Everybody else in the family may be happy to sit for hours and eat and pull crackers and tell lame jokes and wear paper hats, but the girls aren’t. So Robyn takes to the festive table with an iPad with all her favourite movies on, and Libby has a laptop, both of which have headphones attached. And they don’t eat roast dinners, either. So they have curry instead. We make a big pan of curry on Christmas Eve, taking a couple of dishes to my Mum’s for dinner, and that way they’ve got plenty of their favourite meal for Christmas and Boxing Day, whilst the rest of us are eating rather more traditional fare.
We are getting better every year at doing Christmas with our daughters, because it’s all about handling expectations. We can’t allow ourselves to think we’re allowed to socialise at someone else’s house for hours whilst the girls sit and behave; it’s not going to happen. A number of Christmas Day celebrations in the past have ended prematurely, with me dragging the girls to the car and taking them home where I brood for the rest of the day, wondering why I’m left sitting on my own at home while the rest of the world seems to get to spend quality time with their nearest and dearest.
So, Christmas dinner now starts with a phone call from my mum to let me know exactly when the Christmas dinner is going to land on the table, which is served up with curry and gadgets for the girls. And if I can manage to sit and chat with my family for half an hour after dinner without the girls kicking off completely, I can consider the day a success. As long as expectations about what kind of day we’re going to have are reigned in, I can settle down on Christmas evening and watch Doctor Who with a tin of Quality Street chocolates and a glass of Vimto and ginger ale, perfectly happy with my Christmas, knowing my girls are happy, too.
I love Christmas. Always have. It’s a family time, a spiritual time, a time of peace, a time of love, a time of giving and, let’s be honest, a time of indulgence. It’s different from every other day of the year; we do things that we don’t do at any other time, and this is partly what makes it exciting for children and nostalgic for adults. We add new decorations to our homes, new lighting and new smells from fragrant candles. We eat different food, we move our furniture around and bring trees and shrubberies indoors and put lights on them. When you think of the day itself we do very few of the mundane things we do on other days, and we indulge in ceremonies like the opening of presents and the carving of fabulous food. As the song says, it really is the most wonderful time of the year, precisely because everything is so different. The normal world gets put on hold for a few days whilst we indulge in this festive fantasy.
Now imagine that your ability to deal with the everyday world depends entirely on things being kept the same. Imagine that the world only makes sense when a pattern of order is followed. And then, one day, let’s call it Christmas Day, your whole world gets turned upside down. Everything you expect to happen, doesn’t happen, and everything that happens is not what you expect. How do you deal with that?
I’ll tell you how. You shut yourself away and pretend none of it is happening. You ignore it completely and just try to do what you always do. We have camcorder footage of Christmases gone by, and the reaction of our children couldn’t be more different. A young George, on entering the room on Christmas Day, falls to his knees in awe like the shepherds and wise men in the stable in Bethlehem did 2,000 years ago. Although their awe was due to being in the presence of the Saviour of mankind, rather than just being in the presence of a ruckload of presents. But, you know, he was pretty excited. The video also shows Robyn walking into the room, walking straight past the piles of presents and straight out of the other door, closing it behind her.
In the years that followed we tried really hard to do things for Robyn that we thought she might enjoy so we could get her to stay in the room with us and be a part of our family Christmas morning. One year, we bought her a Disney Princess camp chair with cup holders that held a new cup with a curly straw with a serving of her beloved Pepsi and a packet of her favourite crisps of the time (Nice ‘n’ Spicy Nik-Naks – good choice!). It didn’t work.
Another year we bought an indoor play tent and put all of Robyn’s presents inside in the hope that this would pique her interest, but to no avail. I remember a Christmas morning where I’d bought her Toy Story 1&2 on DVD to get her interested in opening presents. I gave her this gift first and managed to get her sufficiently interested in it to unwrap it, and she was suitably pleased with the contents. So pleased, in fact, that she took it into the next room, put the film in the DVD player, shut the door and refused to come out for several hours until she was entirely convinced that we were done with the whole present unwrapping thing. If any of us entered the room (say, to go through into the kitchen), she would dart to the door to shut it behind us. For Robyn, Christmas had to be kept out at all costs.
After a while we learned not to expect anything but disdain from Robyn on Christmas morning. When we had the extension built it meant an additional Christmas bonus for her. It meant on Christmas morning Robyn could walk past the Christmas presents in the lounge, into the dining room, close the door behind her, then walk into the new playroom and close that door behind her, too. That way she was two whole rooms and two closed doors away from all of that Christmas nonsense.
What we realised in time was that trying to make things ‘special’ for Robyn actually just made things worse. What she was rejecting was the whole ‘differentness’ of the day. Getting her Pepsi and crisps for breakfast and building special tents just made an already different and difficult day even more unusual and distasteful for Robyn. We accepted defeat and resigned ourselves to the fact that Robyn was never going to join in on Christmas morning. We gave up wrapping presents for her; what was the point? She might be interested in the items eventually, but she wasn’t interested in going through the rigmarole of opening complicated wrapping, and she certainly wasn’t interested in them on Christmas morning. Here was yet another special family occasion that had become a casualty of autism in our home.
And then, as if being rewarded by the gods of autism for our willingness to accept Robyn’s fear of Christmas, we were given December 25th 2010. Finally, after years of toil and trial, we were blessed with our very own little Christmas miracle. It seemed as though Robyn could actually deal with Christmas morning if we just left her alone and didn’t try quite so hard. I think it was also possible that, in a weird way, Christmas had become part of a routine for her. Robyn now seemed to accept that, once every 365 days we had this one day that was very different to all the others, and actually, if she could get past the differentness, it turned out to be dead good. If she could turn a blind eye to all the ceremony of the day, her reward was more Disney Princess merchandise than she could shake a rather large stick at. She knew that when we started to put lights, trees and decorations up in the house that we’d soon have that odd day with all the presents. So, last Christmas morning we watched in surprise and wonder as our three children sat together and opened presents. We didn’t know whether to laugh or cry.
So, those of you with non-autistic children, as you watch your children sit together, opening gifts like it’s the most natural thing in the world and taking your generosity for granted , remember to be quietly grateful. Some of us have waited years to see that happen, and some of us have not seen it happen yet. Whether or not we will get a repeat performance this year or not, I do not know. But I do know there is nothing I can do to make it happen either way. As always with autism, acceptance is required to find the peace within. Even at Christmas.