At the start of lockdown I noticed a lot of chat about what people were doing ‘to keep busy’. This was a bit of an odd concept to me which many carers will identify with. I had moved back into my parents house to shield my brother Dan. When you live with someone with PMLD (profound and multiple learning disabilities) it is rare to feel like you have nothing to do. With no support workers coming into the house and Dan not going out it was necessary to find focus for our days that were usually filled with walks, bike rides, swimming, trips to town and visits to the zoo, country parks and museums.

Mum and I participated in a drawing challenge with some friends via whatsapp but this didn’t lend itself easily to involving Dan. Most days we would share a photo of Dan relevant to that days theme.

Dan adapted incredibly well to the complete change to his routine. His meals were at the same time and each day was bookended as usual with a bath but our focus became encouraging Dan to do music in the garden or our ‘sensory room’ (a downstairs reception room that I’ve filled with Dan’s stuff) and discouraging him from going to the front door.

The route out of the back of the house isn’t particularly accessible and Dan has never been very inspired by going into the garden. Any family barbeque usually involved Mum having to ferry between the kitchen where Dan was eating supported by Dad and the garden where me and Sam were having ours. I’m so incredibly proud of how Dan has readily accepted the changes and after a couple of weeks instead of directing us to the front door after his morning smoothie he was leading us confidently to the back of the house and out into the garden. My suggestions for purchasing a lovely (EXPENSIVE) outdoor xylophone and hot tub were sadly ignored by our parents but we did manage to convince them into buying a garden sofa so that Dan and I could sit next to each other with his various instruments. After 20+ years gathering dust I got my flute out and began teaching myself how to play it again, Dan loves live music and is not fussy about duff notes luckily!

After we finished the drawing challenge Mum designed a 2 week cooking challenge which was definitely more up Dan’s street! We ate lots of lovely things that we hadn’t tried before and Dan and I excelled with a lovely sensory gluten free lemon meringue pie. It was great to share our offerings each day on the Whatsapp thread and be inspired by our friends and what they were making. It felt good to be connected to others in this way and it was nice that on some of the days the theme had included a different activity for Dan.

We have a ‘chosen family’ called the Copes; Jeanette, Stuart and their children Indigo and Malachi. We have been friends with them since around 1995 and we’re incredibly close. They were in the midst of relocating at the beginning of the pandemic and were actually staying in my house. We had all enjoyed drawing and cooking and so Jeanette and I decided to design a new challenge. The aim was to be more flexible to people’s skills and interests, giving opportunity to try new things but also the space to do something more familiar. With the help of the children we chose themes to explore and Jeanette and I drew the challenge sheet between us.

I’ll share some of the activities we have enjoyed in the upcoming posts. I hit a wall personally towards the end of the challenge and will revisit some of the themes soon. The aim was to give us a positive focus and motivation for each day as lockdown dragged from weeks into months but it was never intended to be a pressure so it can of course be something that you can dip in and out of!