Happy New Year! It seems like December was twice as long as any other month last year and I am so excited to be in the new year full of hope and possibilities. December felt somewhat like an endurance test for me and had incredible highs and some really worrying lows.
The problem with December for our family is that it is a month of anticipation. For neuro-typical children, this builds excitement but for Autistic children, it can be very frustrating. In our family, the older children are 10 & 8 and are at the maximum Christmas loving stage, meaning it has been all they’ve spoken about since mid-November! Indigo is only 18 months, so while she doesn’t understand Christmas at all, she is overly interested in all the decorations etc and poses a whole new problem. On the other hand, Thurston became very stressed with the constant reminders that he should be excited and “what do you want for Christmas?!” If you imagine having no concept of time, then it must be incredibly daunting. You don’t know why Christmas isn’t right now, or even if it will ever come at all. It’s like the ultimate tease. Of course, school also revolves around the festive season for much of the Winter term which causes everyone to try and jolly him along.
His school were very sweet and gave him the role of Father Christmas in their nativity (named “A Midwife Crisis” all about the midwife shortages, very political!). It was a brilliant move on their part because he wasn’t integral to the play at all and just needed to come onstage at the end to thank everyone for coming and wish them a merry Christmas. So, his participation didn’t affect whether the play ran smoothly or not. I knew that it would never happen, however his 1:1 helper held out a lot of hope for him. On the day, he sat and read a book, joined us in the audience and then lay face-first on the floor!! No one minded one bit, Alex & I were laughing, his helper was so happy that he hadn’t screamed and his headteacher commented how well he had done!
Just before the school broke up for the holidays I attended a THREE HOUR long meeting with 9 professionals to switch Thurston over from the Statement of Special Educational Needs to the new Educational Healthcare Plan. In theory, this plan sounds like a great idea with a much more holistic approach to the child, however, there is a much greater emphasis on costings which I felt extremely uncomfortable with. Alex was unable to come to this meeting so it was my responsibility to be a good advocate for Thurston. I feel like I got a good outcome eventually and there was only one area that I had to push for, which the school are backing me on anyway. However, the professionals did have their own disagreements within the meeting and I found myself listening to 3 groups of people separately arguing about areas in which my child is failing. I think I felt a part of my heart break listening to the costs involved in his care, and whether it was worth spending the money on an area or skill which they felt he wasn’t going to ever achieve or do well in. I understand why they have to do it this way and to be efficient with their time, they need to be frank and honest and they can’t concern themselves with my feelings but it made for some tough home truths for me.
Decorating the house this year has been farcical on a National Lampoon level. Firstly, we decorated the Christmas tree only to have Indigo pull the entire thing over in less than a minute. I decided instantly that I wasn’t willing to redecorate the tree every couple of hours and removed it up to Thurston’s room. In all honesty, I wasn’t surprised and although irritating, it was quite funny. I posted the photo to Facebook in a moment of parenting solidarity and was surprised by the number of people who commented that I was cruel for taking it down, should’ve put a fireguard around it, pinned it to the wall, persevered with teaching Indigo “no”, was ruining Christmas for Louis and Zeke by taking it down. (I’ve come off of Facebook now as it was very unhelpful to me in these type of situations!) It really made me wonder. Why does it matter? It’s just a tree. We have an abundance of garlands, fairy lights, paperchains and we even added a mini potted tree that the baby couldn’t get her grubby mitts on it. So why does it matter to all these people, mostly acquaintances, if I have a big plastic tree to put presents underneath. The way I saw it, I was giving myself one less thing to worry about and it felt great. Also, it didn’t compromise on space in our lounge which is at a premium with 4 children at Christmas
For the fortnight before Christmas day, Thurston was very stressed and easily upset. His violent streak became worse and worse and he would either have screaming outbursts or become very insular, constantly listing things and typing TV channels repeatedly. This is when I find Autism the toughest, when I can’t get through to him. It can feel very isolating. I don’t want anyone to think badly of him, or think he is unkind, so I don’t like to tell people how bad it can get. A few times, I have posted on Instagram about it and deleted the picture because it felt like I was complaining too much, or because I felt jealous that everyone else could just enjoy Christmas with their families. There were 2 instances in December when he became so violent that I had to call my mum for help. At one point he was punching me and I asked him why and he said “because I want to kill you”, which was devastating. I feel so guilty and pathetic for not being able to cope on my own, but both times, it wasn’t safe to leave the other children unattended to help Thurston. The tiniest things can cause huge reactions and my mum mentioned that she needed to ring home because she’d left the oven on which caused Thurston to break down in tears because that is how the Great Fire of London started. Through his tears, he told my mum not to worry because “he was an expert at telling the weather” which caused a tearful Grandma situation. He is just so confused that it’s hard to know what to do to comfort him. Sometimes, unfortunately it is a 2 person job and I need to get a bit better at accepting help.
When Christmas actually rolled around, Thurston took it all in his stride. I think we’ve finally got the hang of how to make it easier on him. I wrap most of his gifts in tissue paper so it is easy to open, he can open presents at his own pace, no rush. He doesn’t have to eat breakfast with us, he ate a plate of bacon and toast in front of Shaun the Sheep. When we are at my parents’ house he can escape to a quiet room whenever he likes. He chose to eat his dinner alone in the lounge which was not a problem, he watched Toy Story and ate roast turkey, but he insisted his Granddad joined him to help him pull his cracker! No one particularly watches him open his presents anymore which is perfect because the pressure is off, there’s plenty of other children around who will give the giddy over excited reactions that we all love! This year, we also spread out all of the full on family gatherings over the whole week which was so much easier on us all. Christmas Eve with a couple of friends and my sister, Christmas Day with my family, Boxing Day was spent at our house with our lovely friends who have 3 children and our on exactly the same wavelength as us with a relaxed parenting approach, it was my favourite Boxing Day ever! We had Alex’s family to us for an afternoon at the weekend. Having it at our house meant that Thurston was much more relaxed and had his own presents and iPad around him. We spent New Year’s day on a trip to Hastings see my best friend and her lovely family, and Thurston did so well with the change of scenery.
I have learned a lot about Christmas this year and I feel really happy with our decision to keep it simple. I am throwing the big plastic tree in the tip and I will be going for another small potted tree next year. I’m going to stick with the plan of having people to come to our house instead of trying to pack up and ferry the children around! Luckily for me, my parents’ house is an easy place to visit. They are incredibly accommodating to Thurston’s needs and have fantastically low expectations which means that any small step he might take is met with huge applause and pride from my whole family! I also ignored the older children’s Christmas list which was basically an X Box and TV for their room, and instead they have enjoyed magic sets, board games, books, electrical circuits and racing cars! That has definitely limited the number of arguments in the house. Thurston is enjoying his new Sylvanian Families Country Starter Home and his Peppa Pig House too!
If you have a child who finds the idea of Christmas stressful or even if you find it stressful yourself, I think it is well worth reflecting on what works for your family and what doesn’t work . There is little point running yourself ragged to make the ‘perfect Christmas’ when all the kids really want are some big shiny boxes on Christmas morning and lots of laughs with their friends and family.