The Christmas before my son was diagnosed with autism, back in 2010, was pretty tricky. I remember at least one spectacular meltdown in front of a shocked visitor! At that point a full diagnosis was still six months away. We didn’t know for sure why he was behaving the way he did, and that uncertainty only added to the strain.
He spent a lot of time involved in solitary play, twiddling objects – straws were a favourite and he had a whole bank of them lined up. If someone he didn’t know well came to the house, he would turn his back on them and twiddle furiously, humming as if to drown them out. Even then, he was showing some signs of interest in Christmas – he liked to look at the lights outside people’s houses – but insisted on stopping at each drainhole we passed in the street and getting down on the ground to look at it.
He was three years old and, though we didn’t know this, he was anaemic. Once that was spotted and he was given an iron supplement, things began to improve. We also learned more about autism and how to support him, and over time, he has developed and changed, and has coped with situations that would once have seemed like impossible challenges.
I’m pleased to say that this year we had a really good Christmas (bar one or two glitches!) We now have a much better idea of how to help prepare him for new experiences by using social stories, and his language skills are much better and he’s more settled. We can still get caught out and there will always be setbacks, but it’s a lot easier than it was.
Getting through the Christmas show
Back in 2010, one of the experiences that made it most obvious that Tom was different to other children in his peer group was the Christmas show. You get used to your own child, but when you see him or her with others, the differences become very obvious.
I still find the Christmas show nerve-racking – I know it’s very weird and intense for Tom, and you can’t really prepare for the strangeness of standing up on a stage in front of a hall packed with expectant parents. But at the same time I want him to be part of it and enjoy it, if possible. And he does! He is at a mainstream school, and the staff have always been brilliant at managing him in this unusual, high-pressure situation.
Last year he came on at the end of the show and said ‘Thank you for coming’. This year he made it all the way through, sitting with the other children when he wasn’t on stage and playing on the ipad with the sound turned down. When it was his turn to go up and do a song and dance, one of his friends took him by the hand to guide him up there.
He was very clear that he wanted to take part, and we have a lovely picture of him beaming in his costume. It’s all practice – next time it will be even easier!
Easy like Christmas morning
We always spend Christmas at home, and make sure there are intervals between visiting and having visitors. We have to try and keep it relaxed for everybody, because if we get stressed so does Tom. He has always loved Christmas lights, but this year he got into carols and Christmas songs in a big way – plus light-up Christmas toys. And he now eats the chocolates in his advent calendar! He passed on most of Christmas dinner, but was very happy with some of the little sausages and mash. And this year he helped unwrap his own presents! He got some practical things, like clothes, and lots of sensory toys, including playbeads, which are a bit like playdough, and toys that make sounds, like his megaphone toy.
He also went to his Christmas school disco for the first time, which was an absolute triumph – brilliant! He got a best dancer certificate! The lights were very intense for him, I could tell, but it was great to see him grooving! And attempting to learn the moves to ‘I am the music man…’
We had some other firsts over Christmas too. It hasn’t seemed like the right time to try these things till now – but I think Tom was ready and we were too.
- Autism-friendly cinema screening of Frozen at the Odeon in Oxford – the first time all four of us have been to the cinema together, ever.
- We met Santa on the Cholsey and Wallingford railway – the Bunkline. Brilliant, very mellow.
- We went to a relaxed performance of Father Christmas and the Icicle Bicicyle at the Oxford Playhouse. They sent us a social story all about it in advance, so he knew what it was going to look like, and he got the chance to sing Jingle Bells! I have never seen him so engaged in any performance. He was a bit skittish and got up and ran round once or twice, but they were very good and just calmly reminded him to sit down. It was a really magical experience for both of us.
- Tom also went to his holiday club at Kingfisher School in Abingdon, which was then run by the Guideposts Trust and ran lots of different activities and had great facilities, like the ball pool.
And he signed his name on his thank you letters! We did have one really bad day after Christmas when it all went pear-shaped and he got very upset and scratched his face. But there was a lot more good than bad.
There are various charities that offer support to families over the Christmas period and all year round:
- Ambitious about Autism – the charity’s online community Talk about Autism has put together some great tips on coping with Christmas
- The National Autistic Society
- Autism Family Support – sends out mailings about what’s going on in Oxfordshire
I also hear good things about Oasis and parent support groups such as Shift. Another great charity is Cerebra.
When we put our tree up, Tom said our living room had turned into a Christmas living room – but he also understood when Christmas was finished. He’s still singing the songs though. And we are already looking forward to next Christmas!