Lots of us are all sharing this ‘new way’ of living, thanks to COVID-19. The bond of all #inittogether has almost overnight delivered the world many had hoped and campaigned for in different times: social cohesion, care and generous community awareness. Love and thanks emanating out!

Living under lock-down took a lot of adjusting for all of us, but in some homes there are ‘hidden carers’ who may not immediately spring to mind for the Thursday night clap, but they are the hardworking, committed and probably exhausted parents of children with disabilities. It makes their experience look a little different when imagining how they are surviving this time together when unable to access support from the wider world, their friends and family.

Our column this week is given over to an account written in the early days of lockdown compiled over five days by one parent. Thanks to Cherry Trees remaining open since the get-go of COVID-19 for short respite breaks, we’ve been able to help care for Alex for a few hours giving his mum and sister a break too. Alex’s disabilities include autism, severe learning difficulties and no understanding of danger, with a lot of care befalling his mum. Her account is honest.

Thursday – collected Alex from his school, (he has one of the few allocated places because he is defined as a vulnerable child). I couldn’t get him out of the car for an hour. When we got inside he kept trying to help himself to his favourite food – cocktail sausages. I had to lock the fridge. After tea, he then asked for oats and water to eat/play with, constantly asking for food. It’s been an entire day of him grabbing my arm when he wants my attention. I can usually cope with this for a certain amount of time but he is grabbing that part he bit two days earlier breaking the skin through my clothes, so I am really struggling with it today.

Friday – He is in one of *those* moods. Before school he had been picking at the hole he had previously punched in his bedroom wall, and now I can see the bricks. When I told him he couldn’t have more cocktail sausages, there was a moment when I thought he was going to launch at me. I was cooking porridge on the hob at the time so that could have been extremely dangerous. He was happy after school, helped by Daddy taking him on an NHS delivery to Brighton – Alex loves driving.

Saturday – a calm day. Wanting lots of stuff but calm.

Sunday – the hour changed and Alex woke extra early as well, so effectively we got up at 5am. Constantly on the go and demanding. When his Dad turned up, I needed to go back to bed. With ear plugs I managed to get some sleep but Alex was pinching and hitting because I wasn’t there. A lovely moment came in the evening when he asked to stroke the cat and give him treats. Usually, he ignores the cat, or is a bit wary.

Monday – At 12:20 the phone rings, his school let me know he has coughed twice and is happily blowing raspberries and not understanding social distancing, this means the staff are on the receiving end of the raspberries and school need us to remove him. For fourteen days. My immediate reaction is to burst into tears, there are so many emotions. Fear – how are we going to cope with him at home for all that time (the same reaction I had when his school initially closed ahead of the nationwide announcement). Sadness for his younger sister who gets ignored so much of the time when he is around. We were attempting to catch up on some of her schoolwork when the call came and I seriously worry that she will fall far behind because I cannot give her the time she needs. …… thank goodness I have Cherry Trees helping us with a few hours care across some of the week days and a place Alex really enjoys.

Cherry Trees is working to stay open every day with increased working methods, measures and safeguards put in place to ensure all the staff and visiting children are as safe as possible during COVID-19 to ensure we can help families like Alex’s. With the backing of our local authority to remain open and a daily review of the latest government advisories and guidance scrutinised by our most senior staff we are working safely and with good reason. If you want to see more about our work at this time or even make a donation please see our £10,000 a week COVID-19 Lifeline Appeal – at https://www.cherrytrees.org.uk/fundraisers/donate-to-cherry-trees-covid19-appeal