Lemon Squeezey

My name is Nicola and I’m a fixoholic. I don’t mean that I like to tend to leaky taps or spend my time super-gluing old toys back together (that’s what my Dad is for) but rather people, and their broken situations.

Sawyer is now six and a half years old, and dealing with his sensory issues and meltdowns only becomes more composite as time goes on. As a serial fixer, it can be difficult to understand why suddenly and without warning, techniques we’ve been using successfully for weeks and months suddenly don’t do the trick anymore. Autism – how can you be so fickle? How can the symptoms you provoke demand such routine and stability, when the treatment you require is so changeable and complex?

When I started writing this blog, I wanted to tell my story out of frustration for the common misconceptions I’d been facing for so long. But as I continued to write I realised it seemed to be helping people along the way, which, as a serial fixer continues to appeal to me and encourages me to keep on writing, even when sometimes I don’t feel I have anything worth saying. I guess I hadn’t anticipated that my words would help not only other Autism Warriors (PLEASE remind never to be that twee ever again), but also my own family. I never stopped to think about how difficult other people close to Sawyer must have found his diagnosis and all the unknowing that came along with it. It was actually the response from my own flesh and blood that was incredible to me because I realised then how fixated I had been for so long, and how I had expected people to understand Sawyer, without ever explaining what exactly had been going on.

My name is Nicola and I’m a fixoholic. I like to fix people and their broken situations, and for those reasons, I never like anyone to see the times when I feel broken myself. I have fought hard and I have done well; I am proud of the way I fight for my son, but with autism, every day doesn’t just get better. Some days get worse and some days get a LOT worse before suddenly things seem to click in to place again. And then click out of place just as quickly. The hardest part of being an autism mum is reaching a point where you think to yourself I JUST DON’T WANT TO DO THIS ANYMORE, but you know that giving up isn’t an option, and that a rest will probably never come.

I end most of my blogs with a sincere air of confidence and determination, which I hope each time will inspire others to gather their own confidence for whatever issue they are currently facing. But you know what? My blog endings don’t always reflect the endings of day-to-day life. Many of my days end with a defeated face-rub, a headache, exhaustion, and almost always wine. But feeling exhausted is okay. Being a warrior (damn it) isn’t always about gun blazing and anger-wielding. It is about sometimes feeling beaten, tired, achy and sad, yet still getting up and getting the fuck on with it.

You aren’t on your own. And neither am I.

Sense of Impending Weirdness

I suppose the most frightening part of having an autistic child is not knowing what they will be like when they are fully grown.

Sawyer is an extremely loving and kind-hearted boy. He is well liked by his peers, despite not having formed any close relationships with anyone in particular, and as well as that he seems to be a bit of a favourite with the grown-ups. I think the latter is largely due to his unusual enunciation, and his way of expressing approval that you don’t usually hear from children. Sawyer didn’t form meaningful sentences until well after he started school, but before that he had coined phrases by way of echolalia – meaningless repetition of words and phrases. Two and a half years on, the echolalia that used to feel sad and empty now partners with his vast vocabulary and those traits merge to form the most delicious outbursts of love, agreement, disgust and happiness. It is amazing that the very things that make dealing with autism tricky, can later become part of making it a joy to behold.

Recently I sat down with Sawyer’s teacher and we discussed how he was getting on in school both academically and socially. She is completely accepting of Sawyer and his condition (always a relief) and tries lots of tactics and methods to encourage him to engage in all aspects of school life. We started speaking about a plan of action for the coming few months and one of the issues I raised was that at a certain point, not too far from now, I want to explain to Sawyer that he has autism. While he is so young, his peers aren’t noticing the unusual traits that Sawyer has in both his speech and behaviour. At the moment it goes relatively unnoticed that he is the only child in the class who has to run back to say goodbye to his teachers, give them a hug, kiss them on their stomachs, and tell them with a tone of devastation, that he ‘will miss them SO much’. But those children wont not notice forever. And I need to prepare him for that.

As well as Sawyer being made aware that he has autism, I am adamant that his classmates should be a part of the process. As they grow older together, these children will need to learn to have patience with Sawyer, understanding that although he sometimes acts a strange way, there are reasons behind it, and things they can do to help. I don’t mean for a second that the children should be told to pander to Sawyer’s every whim, I simply mean that they should be given the opportunity to understand autism, and be educated on what it means to feel the way Sawyer feels each day. With that in mind, I will start the process of involving his younger sister at the same time. Sawyer gets a pass when he goes in to sensory overload – but she wont. We have to be aware that she has grown up every single day with Sawyer by her side, and I don’t want her to suffer long-term repercussions because she believes it to be the norm. I sound like I know it all, don’t I? I don’t. I don’t know yet quite how to implement any of this, and how it will work – but I know for definite that it’s the next learning curve we need to take – educating children (including my own) so that they have the opportunity to be compassionate, and grow in to compassionate adults.

My husband and I recently sat down to watch a programme called The Undateables – a documentary series about disability and dating. Many of the ‘undateables’ had psychological disorders such as Tourette’s Syndrome, OCDs and Autism, and although the title gives a negative view from the outset, I hope made an audience realise the difficulties some people face in situations that others take for granted. It was the first time I’d considered what Sawyer might be like as an adult. Would he have the same issues that so many of these people were having? Will he be difficult to date because he can’t sit still long enough to get through 3 courses, or because he can’t look anybody in the eye? I realise more and more even as I type, that I will need to look at Sawyer’s gorgeous childish traits and think to myself – I need to help him to change that, and show him how to act in a more appropriate way. As he gets older, I need to open my eyes just a bit, and start to think of positive ways to help him integrate in to society, thinking not only about how he acts now as a child in year two, but how the way he acts might stay with him through to teenage years and beyond. Again, I don’t yet know how I will achieve any of this whilst also allowing him to maintain the parts of him that make him so… Sawyer. But we will get there.

Jumping back to my discussion with Sawyer’s teacher – she paused as she drew near to the end of our discussion. “It makes sense that his peers should recognise that Sawyer isn’t just….” And without hesitation, I helped her with a word she didn’t feel she was allowed to say. Weird. At first she looked mortified (people generally do) but after a short time looking at the seriousness on my face she seemed to realise that I hadn’t said it to be flippant or disrespectful, but that I don’t see it as a bad word at all. My baby boy is brilliant. He is hilariously, quickly, erratically, ever so slightly weird. Thinking about it,  I’ve always found it interesting how words can carry such different connotations for different people. I remember once having an argument with my 6th Form Head of Year after he overheard me using a swear word as an adjective. ‘Why do you find it so offensive? It’s only a word, I don’t understand how anybody at all could ever get pissed off at a tiny little word’. I was 18 years old and I still mean it, only now that word (f**ky) has changed to ‘weird’.

I just do not know what Sawyer will be like as an adult. I don’t mind him being weird. In fact, I quite like it. But what I have an obligation to do is ensure that I teach him enough of ‘normal’ and ‘socially acceptable’ to keep him safe and allow him to live an enjoyable life as he gets older. I want to make sure he has the tools to form a close relationship with somebody, if that’s what he wants. I want to make sure he understands friendships so he never ends up alone. I want him to have all the opportunities other people have, and since at the moment his main ambition is to work at our local Aldi, I’m quite excited about the employee discount.

My Sawyer doesn’t act the same way or do the same things as most of his peers. He doesn’t like birthday parties, he doesn’t like roast dinners, he doesn’t want to go to the park, and he definitely doesn’t like it during the summer when he has to wear short sleeves instead of long. But most joyously, he has no inhibitions. And when I stop to think about it, I guess maybe it’s all because he’s never slowed down enough to pay attention. Sawyer has always been running too fast for society to catch him up and mould him, prod him, and squeeze him in to something he was never meant to be.

And you know what? Thank fuck for that.