For years when the boys were little, Christmas didn’t really mean anything to them.
I have read a few blogs this week about how this makes the parents feel. As a young child with three siblings I loved Christmas. As a teenager, I no longer did due to our parents divorcing and arguments about who you would spend Christmas with. Choosing to spend Christmas with one parent meant rejecting the other in that parent’s eyes. Eventually as a young adult I did my own thing at Christmas with displaced friends.
So, I longed to have a family and recreate that special Christmas atmosphere again with my own children. I have collected Christmas decorations for over 30 years now . I used to design and print my own cards using my calligraphy skills as I did classes for many years, I even sold them at one point. All the trimmings of Christmas still meant a lot to me whatever the family circumstances were.
My twins were finally diagnosed at just three with autism. I say finally because they had never spoken and only the fact that they had glue ear had kept the diagnosis at bay.
Christmas with them for many years wasn’t really Christmas as I had imagined it. They didn’t understand what was going on, they certainly didn’t understand presents. How could you be given a wrapped present and not want to tear the paper off? And if someone did help you to tear the paper and you had a new toy in front of you, why weren’t you excited to play with it? So presents were received like a lead balloon; they didn’t want them. They had very limited playskills so toys were of little interest.
As for Christmas lunch – they were still eating pureed food at the age of 3. Crackers? they were just frightening things that made you jump when cracked. Father Christmas? How do you explain him to a child with no language? Why would you want to ‘talk’ to a strange man with a big white beard, quite a scary concept and as for standing in a queue to see him…
I know for many families with children with autism, this is the reality every year.
We now have four boys, all with autism and things have improved hugely since those days due to their acquisition of language which meant we could explain concepts such as Father Christmas. In fact, it saddened me hugely only last year to have to explain to my boys at the age of 16 the reality of the Santa myth as they were being teased at school for still believing. I have reassured them that stockings will still appear on the ends of their beds if they will ever get to sleep.
They still don’t really like presents. They can’t bear the mystery, the anxiety of not knowing what is in them. It’s not that they are impatient to know, it’s the anxiety that it might be something they don’t want or like. They write elaborate Christmas lists with precise instructions of exactly what they want. They need to know everything in advance. Occasionally I try to buy them something they haven’t asked for to help them with the concept that surprises can actually be nice. if I get it wrong, then woe betide and a child saying ‘sorry Mum’ , ‘it’s not exactly, precisely what I wanted’.
These days, they all eat normally after years of restricted diets and they love a roast dinner and as many crackers as I can buy. We now do Christmas on our own as a family and keep it as a day for the boys to spend how they want. We learnt years ago that other adults expect children to stick to their adult plans for the day and this just doesn’t work for us
We have our own special Christmas routines now. We go to see the Snowman on the Saturday afternoon before Christmas, it will be our 15th time this year. I first chose it as you need no language to follow the story and I used to put the video on for weeks ahead of the show so they were familiarised with the story. We are slowly introducing new shows to the boys but the Snowman remains a permanent fixture.
We have a party now each year for all our helpers, tutors, carers and anyone who is involved with the boys and shows them love and support. This is often one of the best nights of the year, to be surrounded by all those who truly care for them.
These days, finally, Christmas is as wonderful as I had always dreamed it would be.