In this post we hear from Anna about the ups and downs she and her son Ben, who lives with learning disabilities, experienced during the first lockdown.
A bit about Ben
Ben’s passion for music and phenomenal music memory are in his DNA! As a universal language, music connects him to anyone, so eclectic is his taste. It can lift his mood, express his feelings and initiate a conversation, even a friendship.
Spread throughout this post are some of the songs Ben listened to throughout lockdown. Click on the links to listen on YouTube. Or, if you have a Spotify account, listen to everything on Ben’s lockdown soundtrack (opens in Spotify).
No man’s land
It’s 16 March 2020 and the Secretary of State for Health and Social Care tells us that all unnecessary social contact should cease. Surrealism and uncertainty set into a virtual no man’s land until a week later we’re told by the Prime Minister that we must stay at home.
My two worst nightmares haunt me – one, my son being seriously ill with the virus, is taken to hospital alone and I’m not allowed to be with him – I stop my thoughts in their tracks. The second – what if he is so confused, bewildered and ‘off the scale’ anxious by the new regime that he needs hospital care. I have been told already that the only in-patient care for people with learning disabilities is 100 miles away – far from family and all that’s familiar – however would he and we cope?
We decide that the only way to protect him and his family from the virus and these two scenarios is for me to move in with him, self isolate and get his Personal Assistants (PAs) to stand down for a while. So the pack of cards of our family’s health and care needs is shuffled with a new priority order emerging, mostly driven by the pandemic.
Simple routines are important in grounding us in the strangeness of the lockdown. Whilst Ben is superficially chuffed to have me staying, the changes to usual routines are beyond the pale. During the first night Ben is up and down constantly – I mean constantly – in a state of bewilderment and heightened anxiety. A relaxed, calm and Ben-friendly ether is going to be essential alongside a simple and straightforward way of explaining what’s happening, what Boris is telling us we have to do, and why his PAs are not working just now.
We live the days and weeks that follow in a topsy turvy, parallel universe that gradually unfolds. In a black and white, slowed down world, we start to notice the seasons, birdsong, the fox coming and going in the garden, some colour, texture, people. We learn new rules of ‘social distancing’ – so hard for someone to whom people are a magnet and a joy, mask wearing and taking our time. Ben finds masks hard – he likes to be able to see people’s eyes and their smiles. Thoughtful PAs get together to produce masks with a picture of Ben’s cat, another with The Cat in the Hat. It puts the fun into something we have to do.
I shield Ben from the details and daily news of Covid and the rising number of deaths. It would be not only harmful but cruel, to add to his already high stress levels. We live in the moment, enjoying the garden, cooking and chilling out with favourite music and TV programmes.
Our daily walks (often disguised as trainspotting expeditions) give us so much more than a bit of exercise. Ben feels secure, walking familiar routes – giving a wide berth to houses with barking dogs, checking out spring flowers blooming, trees coming into leaf, cheery pink cherry blossom, and posing for a photo at landmarks such as the lion statue outside a hotel and outside his friend’s church (the latter sent by WhatsApp to his friend when we get home).
Quickly Ben realises the streets are much quieter than usual, hotels are closed, there are no passengers on the bus. But being a people person, Ben soon starts to give hearty greetings to those he passes whilst social distancing with more or less precision. Asking how they are and expecting a proper answer from people, equally confused as we are! He genuinely brings a smile to people’s faces. People often stop and appreciate a chat. One or two hurry past. Ben is soon on first name terms with the bailiff at the local nature reserve and makes new friends with others who’ve chosen the same walk.
Back home we plant sunflower seeds, distracting us from our uncertainty and giving us hope – looking forward to brighter days.
As time goes by Ben gradually relaxes and instead of our daily walks with just the two of us we are able to see Ben’s PAs on doorstep chats often, with much appreciated gifts of home-cooked meals exchanged for homemade biscuits, CDs to borrow. One PA brings our weekly shopping along with the local gossip – ‘they’re missing you in Lidl, Ben!’. The team spirit is tangible; the chats and banter help us keep going as do skype chats with PAs, friends and family, music bingo on skype with one PA, checking online the progress of another’s van conversion, an offer to do some decorating from another, online singing from Hands and Voices and recommendations for Spotify.
As restrictions are eased Ben is able to meet up with his PAs for walks, bike rides and visits to his allotment. The flexibility of Ben’s family-managed support means that arrangements or changes can be made easily and quickly.
Ben as teacher
Seeing more of my son throughout these last few strange months I have been reminded how much he teaches us all by demonstrating what’s important – such a positive approach to life, his kindness, cheerfulness, thoughtfulness and whole hearted friendliness to other people – despite the many personal challenges he faces.
And I believe he has grown too and now that his PA team are all back with him with the inevitable, essential PPE, he’s more independent at home and even managing to explain things more easily – perhaps because of that slowed down pace of life and all of us remembering to work in ‘Ben time’.
Frequently the PAs tell me that Ben is supporting them – ‘Don’t worry!’ over a minor spillage. Or ‘How are you today, how’s your family?’ ‘I’ll make us a drink’. And therein lies the heart – this is all about relationships, mutual respect, equality, rights, citizenship and a shared purpose between people, their families and PAs who work with them. With the person themselves as the driving force it’s win-win and it’s for all these reasons that Ben and his team are gradually emerging stronger from ten months and counting of very hard times.
Music chosen by Ben; Words by Anna, Ben’s mum
Check back on Wednesday for a follow-up post from Anna, titled ‘Where Are We Now…?’.