It starts like an ordinary Christmas, only a little colder. This is the second Christmas in our new city, and after years enjoying each other’s company, we are ready to become parents. And so our journey begins in late January, to the tune of Stevie Wonder on the radio, we realise our lives are about to change, we just don’t know the finer details.
This is a much warmer kind of Christmas. We are sitting in a massive room at a restaurant in my hometown in Spain, celebrating my grandmother’s 100th birthday. She is in a frail state and we all suspect this will be the last birthday, as it indeed turns out to be. Everybody is here for her.
In my arms, dressed in pink and wrapped in a cute blanket, is our three-month-old parcel of joy. All my cousins and their spouses take turns to come over, meet her and congratulate us. This is one of the defining moments of my life. I enjoy feeling enveloped in that warmth and being safe in the knowledge that, when my arms get tired, someone will be there to support us.
This Christmas we are back to our Northern city, with a short trip to the South East to spend time with the grandparents. This is the last Christmas without autism at the forefront of our minds. We are planning our holiday to the USA in February and caught up with a thousand other trivial things in daily life. Not sensory processing disorder. Not developmental difficulties. Not severe language disorder. Not statement or EHCP.
We are first time parents and we don’t know otherwise. Not yet. But we will soon realise that our placid daughter, who didn’t sit unaided or roll over when she was supposed to, who is not yet walking unaided and who loves to spin the pushchair wheels, is on a different trajectory.
It’s been six months since we moved to a large commuting town in the South East. Since the summer, my daughter goes part-time to a nursery. Hanging out in the playground with other mums, we’ve had niggling worries about her development. She doesn’t talk, point, wave goodbye. We think the nursery may be beneficial for her development, even if later we realise how she struggles with busy environments.
This Christmas we go to my daughter’s nursery get together, which includes a visit from Father Christmas. Aged two and a quarter, my girl is the only child not scared of the man in red. She seems to exist in the periphery of that experience, and when all the other children cluster and wait for a story, she stands outside the circle, with her back to them, twisting her hands.
I had known since I first googled ‘loss of language skills.’ It has been several months since she attempted to fill in the gaps in a song. I had felt woefully unprepared, believing that I wasn’t a strong person. But life makes you strong when you need to be.
This Christmas we also win the first prize at the nursery’s raffle. It is the first prize I win in 25 years, but I am not happy. A question will haunt me for the next year: Why is this happening? It will be a long time till I am in a position to move from the why to the what next.
We have moved again, to my adoptive hometown, the university city where we first met, more than 10 years ago. Renting is so expensive that we are crammed in a tiny flat. But there is a large park nearby, which my daughter loves.
This Christmas, my daughter is quite excited about the tree decorations, giving our tree a unique look, as all decorations below her height are thoroughly taken down, played with and left elsewhere. So the tree looks like it’s been decorated by someone with an alternative aesthetic sense. Which, in a way, it has.
When we go to Spain she plays for hours with my parents’ nativity scene, which is kind of sensory heaven for her. Tiny ducks, rugged logs and a palm tree are her favourite, as she rearranges the same scene that they had seen every year since 1966.
This Christmas we take part in an autism playdate outing with a number of other parents, meeting Thomas the tank engine and Father Christmas at a train station. My girl looks confused when we get there, then excited by the sight of Thomas approaching into the distance (despite not having watched the TV series for over a year.)
This Christmas I also realise for the first time that when my girl is relaxed, she will eat a better and more varied diet (I am not kidding you, I had failed to make that connection before.) She has been going to see a dietician because of restricted textures in her diet. This Christmas, on a day when I didn’t even ask her to, she tries a prawn filo parcel and I nearly fall off my chair. I keep that knowledge in my head and make sure that when she is happy, I can take the opportunity and offer other foods. I do not know this yet, but as she gets older, things get a bit easier. She is not exactly adventurous, but at home and at school she will every now and again realise if you dare and try something else, the result can be rewarding.
This is a Christmas of firsts. My girl has been going to a specialist base in primary school for three months now. We are feeling reasonably upbeat and confident at having the skills to face our challenges, one by one, safe in the strength of our love and many great moments together.
So we go for the first time to a relaxed cinema screening. My heart is beating fast when I notice that the volume is too loud and I kindly request it be turned down. When the film starts, with its tale of sisters, frozen landscapes and multiple songs, my girl is transfixed, eating her biscuit and excitedly stimming. For months afterwards, she will attempt to sing ‘Let it go’. Weeks later, we go to the first panto, Aladdin – not a relaxed performance. Although we only make it through half of the session, she is super excited and I feel so proud of the way she copes with a whole new experience.
Our friend visits us from abroad. She hasn’t seen my daughter for nearly two years and with the geographical distance comes a fresh appreciation of everything we have achieved in this time. Together, we sit at my daughter’s school hall, eagerly awaiting her first school performance, fighting back the tears. It is a bittersweet moment. She is happy, loves her dress, her necklace. But she cannot yet dance and doesn’t really understand the concept of a school play.
The rest of this Christmas is quiet and somewhat lonely. We keep bumping into people we know, but we are not visiting any family or friends. Eating out at a busy restaurant on Christmas Day would not work for us, so instead we go for a very early hot chocolate and follow that with a walk across the park. And that adapting the rules, even if it means re-shaping our expectations of Christmas and of life, is working. Sometimes I will find it tough because I am human, but while I acknowledge these feelings, it’s about what works for our little girl.
We have moved, yet again, to a house in a nearby market town. The extra space includes a small enclosed garden, much needed for my daughter’s sensory needs, room for a small indoor trampoline and enough storage space that means she can run around and play in a more spacious environment.
This year I have started preparing for Christmas by sewing the Velcro on to a sensory-rich felt Christmas tree. My daughter will love to pull the decorations off it because it works on the same principle as her PECS choice board.
We have also recently started using ear defenders, which will provide my girl with an opportunity to self-regulate, avoiding sensory overload when out and about in busy spaces. I used to hate the idea of ear defenders, but I think used with care they are going to be a useful tool that will aid her participation in society.
This year I have learnt that if I don’t have a little time for myself every now and again, things get out of proportion and hills turn into mountains. With no respite, this is likely to mean spending time away from my husband too, but it’s a sacrifice worth making. After a couple of hours, the person who comes back is refreshed and ready for more. Our strength is the foundation of our children’s wellbeing, so I will plan to have some me time this Christmas.
I have more realistic expectations of Christmas. We will probably spend a lot of time on our own, because dealing with my girl’s sensory seeking behaviour or potty training phase is difficult for others. My girl will be somewhat excited opening her presents, but she’ll be more excited about the wrapping paper and her £1 Frozen sunglasses than anything else. The drawing on her Christmas card will still look more like lines and scribbles than anything else. And she will be one of the children who goes to bed on December 24 not thinking about the presents to be opened the morning after. But as the journey goes on, through good days and some bad days, I find that I can live this life and be happy.
And I hope you have a happy Christmas, too.
Eva is a communications professional. Originally from Spain, she is proud mum to a daughter with a diagnosis of autism. In her free time (whenever that happens!), she enjoys reading and writing on her blog.