Unfair Dismissal

 

This afternoon I was stood in the kitchen buttering rolls, when I asked my youngest, Piper, to lay a blanket out on the floor ready for their ‘picnic’. She was tired and hungry, so when the familiar whinge reply came back at me I rolled my eyes and buttered on regardless. But as I heard her get up from the settee to fetch the blanket, the whinge turned in to the sound of genuine devastation. “Why do you always ask me and not Sawyer? I want to watch my telly as well.” she sobbed as she straightened the blanket out on the floor.

The words came out of her mouth and made a beeline for my heart. She was right. I do always ask her to do things instead of asking Sawyer. If I’m in the bath and I forget my hair wrap, I call her to fetch it for me. If I’m making dinner and my phone beeps in the other room, I ask her to bring it to me. And when we’re running late for school because Sawyer has left his bag in the other room, it’s her I ask to retrieve it. Why? Because it’s easier. For me. I’m ashamed to admit that to myself, and even more so typing it out in black and white for everyone to see – but I’ll never figure out how to change my behaviour unless I first accept wholeheartedly that I’ve been fucking up. And so, I got down on the kitchen floor and I apologised profusely to my 4-year-old daughter.

By the time Piper was born, we already had a pretty good idea that Sawyer was autistic, yet strangely it had never occurred to me that any subsequent children might be too. I don’t know if that is because the section of my brain labelled ‘Autism’ was already at capacity, or whether denial was preventing me from thinking that far ahead, in case the world (or at the very least my sanity) imploded. Unlike her older brother, Piper was a fairly textbook toddler. When she started to cruise the furniture I didn’t feel the urge to throw myself off of the nearest cliff, and when she started to walk I didn’t cry as I chased after her behind tobacco counters and restaurant kitchens. She just walked . I suppose by the time it occurred to me that our future children might also have autism, it was already clear that Piper did not. We often joke that if Piper had been our first child it would have been much easier to describe what was different about Sawyer. And it would have almost certainly  given the situation more gravitas when we took it to the NHS (doctors are allergic to first-time parents. Symptoms include eyebrow arching and head tilting – fascinating stuff).

As Piper started to get older we were able to do all the things I felt I had missed out on with her brother. We walked by the road holding hands, we sang songs complete with corresponding actions, and we laughed at jokes. Although she was the youngest of two, she quickly established herself as ‘mini mother’ to Sawyer, opening bottles and containers for him, helping when he spilled a drink and trying to teach him to skip and whistle. I don’t know when or how it happened, but I suppose I lost grasp of how little she was. To me, Piper was a prodigy. The frame of reference I had for her was derived from raising my wonderful and kind-hearted, very loving, very autistic, son. When she was smaller she took great delight in being ‘grown-up’ enough to help me around the house, which I just was not used to. But as every mum knows, the days their children ask to help with the housework do not last long – otherwise living with teenagers wouldn’t be quite so difficult, now would it? But as the novelty wore off for Piper, the expectation level remained the same for me. Although I never expected her to boil her own potatoes or go out and sweep chimneys for pocket money, I was giving her lots of tiny, unnoticed and simple tasks, which just was not fair – since her brother was almost never asked to do the same.

Piper gave me a big hug on the kitchen floor and as all small children do, forgave me without reservation. I explained why I had been wrong, and promised her that I would make sure I share out the chores equally from now on. She ran off happily to her programmes and as I plated up their food I berated myself for my short-sightedness. I have spent time researching the issues that siblings of autistic children face, and I pride myself on being aware of the extra sense of responsibility they might feel as they get older. I take the time to explain Sawyer’s behaviour to her, and we have good, healthy conversations about that. I try to make time to spend just with her, so she never feels overshadowed, and I consider myself to be fairly tuned in to the issues and problems each of my children face every day. But it turns out that my 4-year-old daughter is more intuitive than I am. As we sat down on the picnic blanket, Sawyer straightened out his corner and Piper remarked what a good job he had done all by himself. And again,  she was right. Sawyer is perfectly capable of laying out a picnic blanket. It might have taken a little longer for him, but he could do it. And so today I owe both my children an apology. By constantly giving the small tasks to Piper instead of Sawyer, not only have I burdened my daughter, I have been taking away my son’s opportunities to learn. Instead of allowing him to try and fail, and spill and break, I have held him back just ever so slightly, but in hundreds of tiny, unnoticed fragments.

Today my 4-year-old daughter showed me how wrong I have been, and how I can help her grow up alongside her autistic older brother. I have been wrong about many things today, but one thing is for absolute certain.

That girl is a fucking prodigy.

Letting Go

One of the most difficult parts of being Sawyer’s Mummy has been trying to find a balance between ensuring his safety and ensuring that my own anxieties never stop him from living as normal a life as possible.

Until Sawyer turned 5, whenever we went out walking we largely confined him to a buggy board attached to his sister’s pushchair, because he was still too erratic to trust alongside busy roads. As he got older I was acutely aware that the buggy, along with its board, wouldn’t be with us forever, and that we would need to find alternative ways to keep him safe. Of course his peers had been walking (even cycling – the horror!) alongside their parents for years by this time, and I knew I could not keep him strapped to me forever.

On the way back from the park one day, I had Sawyer step off the board so I could get the buggy up a high curb. I waited until he was up on the far side of the path before negotiating the buggy (complete with small child, shopping bags, snacks and other general mum paraphernalia) up the curb. 2.5 seconds later I turned my head to the empty space where Sawyer had been, catching  only a glimpse of his bright blue coat out of the corner of my eye. I can only describe the feeling as horror, as I watched a car approach and swerve, narrowly missing my baby boy as I stepped out and yanked him back to safety. I loathed myself. And even more than I loathed myself, if at all possible, I loathed autism. Being a mum of two young children is bloody hard work – yet even the bits that should have been simple were a fucking nightmare. In true ‘me’ style, I waited until I was safely home before I went to the bathroom and burst in to tears.

Autism and anxiety often seem to go hand it hand, and although I wouldn’t say it is one of our biggest issues with Sawyer, it certainly plays its part. Sawyer finds it difficult to understand figures of speech, and for a long time that was a source of his anxiety. I’ll never forget for example, one Sunday afternoon in our local pub when my sister was asking Sawyer not to drink all of his juice in one go. She smiled as she said to him innocently, ‘Don’t drink it all in one go Sawyer, you’ll go bang!’ Not one of us could have imagined the reaction she would receive. He took it so literally that he genuinely thought if he drank his drink too quickly, he was going to explode. I actually laughed while typing that, but Sawyer certainly didn’t find it funny at the time, and nor did his poor old auntie, who undoubtedly wished she could wind back the clock and say something much, much plainer. With hindsight, in another situation he may not have reacted that way to those words at all. We were in the pub with some friends he did not know too well. It was a hot day in summer and he had been running around outside with unfamiliar sounds and smells. If we’d been at home in the kitchen, would he still have taken that harmless phrase so literally? Would he have even noticed? It’s impossible to tell. But what I do know is that it scarred his auntie for life.

I’d never really thought about my own anxieties surrounding autism until a few years ago, when one of my oldest friends decided to send her son to a childminder instead of preschool. We had boys of the same age and I remember thinking how homely his childcare seemed, and how lovely it was that he was considered part of a family – a home away from home. They often went out to toddler groups and soft-play sessions, and I was happy they had found a childcare scenario that worked well for them. Yet in the back of my mind all the time was a niggling anxiety, knowing that I could never give the same to Sawyer. You see, when I dropped him off at preschool, I needed to know he was staying in the same place. Soft-play sounded wonderful, but I didn’t feel I could trust anyone else to take my son out in to the world without me. How could I go to work and not know his movements at every moment? What if they underestimated how reckless he could be and before they knew it he was gone? And there lies a perfect example of autism and anxiety going hand in hand – only the autism was in Sawyer’s hand, and the anxiety was in mine. Fast forward several years and I rediscovered that familiar sick feeling in my stomach when Sawyer was due to go on his first school trip. The school were informed and prepared for him, he was excited and ready to join in, yet I was an anxious mess. So what did I do? I told him how excited I was, and I masked the fuck out of however nervous I  was feeling. Or at least I hope I did.

Letting go of Sawyer has not been easy, and I don’t think for a moment that I’ve relinquished my anxieties surrounding him and his autism completely. I’m not so naïve to think that I can tidy my anxieties away and live freely forever because, okay, I’m not autistic – but I am human. Autistic or not, we all have our own vices, sadness, problems, issues and anxieties that we’re trying to battle and beat.  I still feel that underlying sense of panic whenever he goes on a school trip, but you know what? I don’t want him to fear the unknown any more than autism already demands of him. I want to make sure that I don’t allow my insecurities to become tangled up in his own and make his life even harder to lead than it already is, and might be.

I feared I would lose my first born that day he ran out in to that road. And although it amounts to one of the worst days of my life so far, I have found solace in what came after. Realisation. I realised that I wouldn’t and couldn’t have done anything differently that day, and that I had put every reasonable thing in place to ensure the safety of us all. And it happened anyway. And from that I realised that I simply cannot control everything. My son deserves a chance to experience the same opportunities as his friends, without me intervening for the sake of myself. I of course make reasonable suggestions to his teachers if I feel it is necessary, but after that I kiss him at the door, wave goodbye and go about my day. Easy? No. Anxious? Maybe.

But that’s my own cross to bear.