Clara and Joshua

Clara

‘I can’t sleep’ came a voice from the other side of the bed.

‘I know darling’ I replied, placing my hand softly on his shoulder. Josh had a big presentation in the morning and had been like this all week. More anxious than usual, restless, and perhaps I was imagining it but quieter in the evenings too.

         Tonight, we had tried everything I could come up with to encourage just one night of undisturbed sleep. I’d made our favourite meatballs (which had required two trips to the shop and an emergency phone call to my sister-in-law for the recipe which I couldn’t find for love nor money) and played Bach while he took a long hot soak in the bath.

         I was exhausted and as I lay in bed watching the lights from the road stripe their way across the ceiling I wondered if I’d get away with going to sleep on the sofa. This was a fantasy rather than a viable option, but my eyelids felt like they were working their way to being inside out if the land of nod didn’t take me soon.

         Izzy was asleep in the next-door room. This was a modern-day miracle and had taken the best part of eight years to achieve. I’d listened to other mums talking at the school gates about how they were adjusting routines and forging a new bedtime normal, and this was the nursery lot! To even contemplate trying to get Iz to leave my bed that young just hadn’t been an option. There was more chance of Strictly Come Dancing abandoning sequins. And when I had talked to other mums of autistic children, I was beyond relieved to find out that we were all on the same page on lots of things, and this had been one of them. Facebook can be good for some things. Parenting advice and the secret life of guinea pigs are constantly top of my feed.

         My mind flitted back to the events of the day. Mum had been found wandering around the village green again, and I knew that she couldn’t go on living alone. She lived too far away for me to be able to pop over though, and my brother who lived closer was in the Middle East closing some business deal or another. The Middle East! Imagine? I can’t. I’d never had a job that involved travel unless you counted a trip to the Co-Op because we had run out of milk again. I worked at a local firm of accountants, or at least I had until I realised that part time work and managing a child with additional needs did not mix.

         The phone on the bedside table lit up the room. I sensed Josh shifting, and quickly snatched the phone up and crept into the bathroom. Since mum had got so much worse the phone calls were constant. But I didn’t feel like I could just turn it off. Not with Joe halfway round the world. Three minutes later, having reassured mum that it was fine to get a drink of water from the bathroom tap instead of the one in the kitchen, I was back under the warm duvet. And to my sheer relief I could hear Josh’s breathing: steady and rhythmic, signalling sleep.

         Obviously, this put the kiss of death on me also falling asleep. I’m just hoping he’ll be OK tomorrow. I’d even offered to go with him and when he had laughed at the suggestion, I said I could just wait outside. He’d made it very clear that this was not how Friday was going to pan out. Even if the presentation was a disaster, he’d rather go it alone. Fine. It wasn’t as if I didn’t have enough to do here. Also, I think I try to cushion him too much from situations that he found difficult, and perhaps that wasn’t doing him any favours.

         It was hard though. Izzy wanted me all the time, and Josh felt pushed out, I know he did. Sometimes he said he felt like the extra spring roll going cold in the aluminium tray when the rest of the takeaway had been wolfed down, saying he wasn’t needed. I’d over ordered again. What did I need him for? At times like that he’d stalk off and often I was so preoccupied with Iz that I couldn’t go to him and explain how much I loved him. This worried me, and I tried extra hard to make him feel like he was special. That I couldn’t be without him, that he was a vital part of this family.

         On so many occasions he’d been my knight in shining armour. Only yesterday he had stopped Izzy trying to trapeze herself across the stairwell using a sleeping bag and a ball of garden string. I’d been trying to secure a bit of freelancing bookkeeping work, but I had been so distracted on the phone to the potential client (eight missed calls from mum in the space of three minutes), that in the end we’d agreed I’d call in on them on Monday. It was the local dry cleaners who also knew of an ironing lady who needed a bit of help. Fancy having an ironing lady! I could easily imagine a mountain of un-ironed clothes that would require ropes and pulleys to get to the top of, because that was what was going on in my utility room right now. But I couldn’t afford to pay someone else to tackle that. I suspected that in the middle of the clothes mountain lurked baby sized clothes from eons ago, and an array of Izzy’s unfinished snacks that she’d hide away for later like a squirrel.

         The only reason I knew I had fallen asleep was because I woke up. Although jolted up would be a better description. Izzy was in the room, sporting a snorkel and swimming goggles and saying she was ready for swimming. Except with the snorkel rammed in her mouth it came out as ‘weggy a skigging’. It wasn’t hard to figure out, especially with the Fisher Price flipper that was being used to force open my eyelids. There was an alarming smear of what I sincerely hoped was marmite down her arm. A bath would be a good idea, I thought, whilst simultaneously thinking that I couldn’t remember the last time I had washed my hair. The aroma indicated sometime last week. Urgh.

         I looked at my phone. Missed calls aplenty, and the cheery information that it was 4.45am. Josh was getting up. ‘I’ll do it’ he said, padding over to the bathroom. I lay in bed listening to the sound of the bath running and Izzy demanding more bubbles. Well, demanding something anyway. Time to get up. It wasn’t fair to leave this to Josh, not today of all days. ‘Your red tie is on the chair in the hallway’ I called to him as he went downstairs to check that the things he had neatly laid out last night for his presentation today had not been sucked into a vortex overnight.

Joshua

My name is Joshua Miles Gatley, and I am ten years old. What? You thought Clara was my wife? You need to pay more attention. Because I want to talk to you.

Today I am presenting the history of the Penny Farthing to the whole school, and I am so nervous. My heart has been going mad, even more than it does when I eat two tubes of fizzy blue pebbles without mum knowing. My tummy has been doing hula dances at the most inconvenient times; I haven’t made any progress on my X Box since last Thursday. I just can’t squidge down the rising panic that threatens to smother me, mostly in the night which is why I can’t sleep.

I suppose worrying about my presentation has made a welcome change from being the guardian of the precipice that my mum seems to be wont to topple over at any given moment. Not that it’s her fault that chaos reigns most of the time. Izzy does a great job of fuelling that fire, but it’s not her fault either. It’s no one’s fault! I want to scream that, but it’s before five am and I’m going to talk to you about it instead.

You might think I sound old for my years. And maybe you’d be right. I’m a junior member of Mensa and I have just won a scholarship to a school that looks just like Hogwarts! I’m excited about this but there’s no way I’m boarding. For a start how could I leave mum and Izzy on their own? But also, the thought of leaving makes me feel sicker than the time mum left a chicken roasting in the oven when we went all camping with Uncle Joe for the weekend, and when we came home the whole house smelt dead.

Mum says we will discuss the boarding situation, and I think that makes her feel better. Like she has some influence. But I’m not going. I’ve researched the journey and checked that they take day pupils, and worked out how much the travel would cost. So far, I have saved up enough to pay for a term’s worth of commuting. But over the summer I will make tons of cash helping at the cricket club, doing some basic coding to help the next-door neighbours with their Computer Science GCSEs, and selling crossword puzzles to the local paper. They used to use my puzzles in the kids’ section, but they got too many complaints that they were too difficult, so now I’m one of the main contributors for the adult games page. The money isn’t amazing, but I can’t go national until I’m eighteen. The local paper overlooks my age and I’m saving them a bomb so everyone’s a winner, right?

Where’s my dad? Most people wonder that, so you’re not alone. You could have just asked me outright though. He left. So not that exciting. It did get more interesting when he ran off with the lady vicar from Brookfield General. He was having treatment for testicular cancer. Reckon he thought he was going to die (he didn’t; they whipped off his ball and said his prognosis was excellent), but somewhere in between all that he found God and the vicar and lost his moral compass and any sense of self-respect. I haven’t spoken to him since he bought me a Tamagotchi for Christmas. There were two main issues with that. Firstly, it was a totally pointless children’s toy, and secondly no one was still collecting them. So, I couldn’t even sell it at school. That was five years ago.

I like history. Last month we went to the Transport Museum, and that’s where I got my inspiration for today’s talk. We went with the school, and at the end we were in the gift shop, and I saw a bicycle bell that the shop lady said was likely to be from a Penny Farthing. I gave her quite a bit of information about misrepresentation of goods and services, then my teacher Mr Arnold came over and put me off my flow. The shop lady had one eyebrow raised at me, but I decided to buy the bell anyway. I’m showing it today after the slideshow that I’ve got, but Mr Arnold says the school doesn’t have the facility for PowerPoint in the assembly hall. It won’t be like that at Hogwarts, I bet you.

I also like my sister Izzy a lot. I know mums probably painted a picture of sibling jealousy, but I really do love her. Maybe I loved her less when she obliterated my entire collection of World War Two model aircraft, but she gets a bit wild sometimes and I’d left my door open. So. But, and this is what I wanted to talk to you about, it can be hard. Really, really hard. You know I mentioned that ever present precipice that mum has got? Well, Iz has one too, apart from she has no sense of fear or danger so keeping her safe can feel like juggling frogs in the rain. Dad was never around by the time Iz started exploring life in every dimension, it’s always been me and mum and sometimes that just feels like not enough staff. Certainly not enough grown ups anyway. But I know how much mum loves me, even though she worries about that. Frankly I think she’d be better off pouring that energy into this bookkeeping show she’s trying to put on. I offered to help her, it is basic double entry stuff, but she said I needed to be a kid and my time for work will come. (I’m not so sure about work as I want to be an inventor. Mum thinks I didn’t watch Oppenheimer but I streamed it for the boys at the cricket club so I watched it secretly with them one afternoon, and that’s what I want to be. An inventor. But with a lot fewer dead people).

Being a big brother is a huge responsibility at the best of times, I am sure you will agree. But being a big brother to someone who sees the world so differently is not only an excellent opportunity into my research paper on neurodiversity, it’s a challenge too. One that I take on gladly, even if I can get a bit anxious sometimes. It’s high octane, high drama, high stakes stuff every day. Most people are just watching Fifteen-to-One at teatime. At our house, it’s a very different kettle of fish.

OK, I must go because Izzy is putting barbecue briquettes into the tumble dryer again, which isn’t in itself a problem but it’s full of clean sheets. Please wish me luck with the presentation, or what’s left of it after the technological elements have been stripped away by my underfunded school who only ever invest in PE equipment. Oh, and I’d never compare myself to a congealing spring roll. Mum has an overactive imagination, and we hardly ever have Chinese. Izzy and I prefer pizza. With extra pepperoni.