Creating a space for carers to share their voice.

One unpaid carer's blog for Carers Week 2020
I'm writing this insight/little essay into my life for carer's week. My son is severely autistic. Imagine the brain of a 13 month old in the body of a 7 year old. I'm his father and primary carer. My wife and I have a 2 year old daughter too.

Our boy loves to explore the world through mouthing objects, crawling, jumping, running, throwing, ripping and crumbling. Furniture is destroyed daily. We have travel curtains with velcro because he would swing from the curtain pole and try to strangle himself with the blind cord. Walls are painted with easy clean paint, carpets all replaced with waterproof flooring. Cupboards are child locked, all chairs and sofas replaced with bean bags, bed frames gone with only mattresses on the floor. We drink hot drinks from travel cups, only use laptops when he is safely tucked in his safe space because he wrecks screens. Daily we try and think of ways to make the house safe. Anti ligature radiator covers, reinforced toilets, security shutters, cctv, hidden kitchens. When he finally sleeps, we Google and get quotes, email the OT team and beg.

He is non verbal and his verbal skills are those of a 3 month old. He screams a lot, loudly and unnaturally shrill and pulls you to request food, his main and sometimes only motivator. He hits and scratches himself when he's upset or grinds his teeth, not that he has many left. Last week he gritted so hard he hurt his gums and he was spitting blood. He laughs too, which is deep and raucous and one of my favourite sounds to hear.

He is doubly incontinent. He can't wipe himself so poo gets everywhere when he sharts. He wees freely if we don't put him in nappies. We bought special needs suits with a zip at the back so he can't undress himself, but they're hot and uncomfortable for him, especially with his eczema. One of his favourite things is being naked. It's even better for him if he's naked on the fence, terrorising the neighbours by proudly displaying his poopy butt. He has an obsession with kinetic sand and spreads it everywhere. He likes spreading in general. Food, creams, poo, dirt. On ceilings, floors, walls, himself, us. We have to do 3 washes a day to keep up. I think we re-dress him around 40 times a day.

He doesn't sleep much and has no fears other than hand dryers and personal grooming. He broke the window lock on the second storey bedroom the other day and hung on the window, his feet barely touching the outside window sill. The neighbours alerted us just in time, we thought he was just jumping from the radiator to the mattresses on the floor. He is always one unsupervised moment away from death or grievous bodily harm. Every day, from 2-4 am to 7-9 pm. There is no time to pee, eat or drink sometimes. You have to be ready, constantly vigilant.

At night I wake, petrified he has escaped his safe space somehow and climbed through the window. I find the visual baby monitor and suddenly get worried he has stopped breathing. He can't tell you anything so we're always guessing, hoping we can tell from his cries or screams if he is seriously ill. I watch in growing terror until he stirs. The constant adrenaline and sleep deprivation makes me paranoid. My wife hardly sleeps at all.

We have a 2 year old daughter who also has issues. She has limited speech and a crippling phobia of strangers and eye contact. When people talk to her she cries and hyperventilates, until she goes limp and pretends to be asleep. She sleeps for 7 interrupted hours a day, no naps. She sleeps with us because she can't be trusted to be awake alone. She comforts herself by pulling your hair and poking your temples and sides of your eyes. Like her brother, she loves to climb, dangerously high. When she gets upset she falls to the ground, clawing at her eyes, writhing around on any surface, even gravel. There are crash mats and blankets everywhere, artificial grass on the shales outside. She has meltdowns about 20-30 times a day. At least she watches videos, unlike her brother. Peppa Pig in Russian and Polish, weird Asian cartoons where they count floating sumo wrestler's heads and Japanese cat videos. She makes impressive lines of toys, ordered by size.

The support during this pandemic has been a weekly or bi-weekly phone call from the school and early years portage and a single meeting with a house modification worker from the council, two metres apart, in the garden after he climbed the fence in 30 seconds and ran off. We have a bingo card for these calls, tick for 'that sounds very difficult', 'Be more vigilant', 'There is nothing we can do because of the pandemic', 'Have you tried googling ideas?', 'Why don' t sleep in shifts?',' I feel for you! ' 'We' ll call again next week.' It' s so demoralising, but expected. Even before the corona virus there was next to nothing.

The only thing that helped is that my wife got furloughed and didn't have to quit her job to help me look after the kids (yet) . The rise in working tax credits is not making up the amount of money lost from furlough and the increase in food bills though. Carers and the disabled have been purposefully forgotten during this difficult time. As the chancellor is shaking his money tree, not even a pound has been set aside for carers and the disabled. It can only be seen as a spiteful act.

Our world was small before, now it barely exists at all. Mentally and physically we are gone. Some days I feel myself go into auto pilot, a weird dissociative episode where I watch myself do the basic things required to keep everyone alive. Been married almost 9 years but we get to exchange maybe 10 sentences a day if the kids are very challenging. Health neglected, years of sleep deprivation presenting itself in a coffee addiction and an insatiable appetite for empty calories with the weight gain it brings. I have forgotten to socialise. No outside hobbies. I like to read but my kids tear and literally eat books.

I have my own health issues, with a brain tumour and a strong squint. The future is bleak. No idea who will look after the kids if something were to happen. No family support. During every annual MRI I get confronted by my own mortality and I'm only 28. It's all too upsetting to think about.

For carer's week all I wish is that unpaid carers like me and my wife are noticed. No kind words for they are always empty. At this point, the 'heroic efforts of carers are appreciated' sounds more like a snipe. Meaningful actions are needed. Inclusion. Financial support, if not to help us with the massive administrative burden of finding and applying for a patchwork of charities and discounts. Respite. To have people understand how little we are supported and to know how much a fight everything is. I'm cynical though. There have been many carer's weeks, with little or no change.

«Our world was small before, now it barely exists at all. Mentally and physically we are gone. Some days I feel myself go into auto pilot, a weird dissociative episode where I watch myself do the basic things required to keep everyone alive.»
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