“Just wanted to share a few thoughts about establishing new routines for people with PMLD. I heard the suggestion that people would be able to cope better with the current crisis if they were able to establish new routines for themselves rather than getting up each morning and wondering what they were going to do each day. I think it was suggested that people needed routines and purpose to help them keep mental and physical health. People with PMLD are of course no different in that sense. I had been thinking that with no easy way to explain to people with PMLD the upheaval of their existing routines, and that they might be sensing tension emanating from the people who support them, it might help to gradually establish new daily routines. With this in mind, me and Jason’s dad decided to try to have a new daily timetable for Jason so that he can once more develop a sense of anticipation for things he enjoys, and have things to look forward to. This is not easy within the strict confines that we currently find ourselves in, however we decided Jason’s dad would take Jason out for a walk (even in rain, with protective clothing) each day when he gets home from work to get him some exercise and fresh air. I can already see that Jason starts to look a bit more animated when his dad arrives home, and he starts to smile as soon as he gets his coat on. Our original plan was that when the weather was bad, we would take Jason for a drive, but now that we’re only to leave the house for essential travel, that’s been ruled out.

We’re lucky that we have a garden space that allows us to socially distance from neighbours, and of course Jason loves his swing. Last Sunday, I painted (in the garden) a bench seat that we had kept in our upstairs (junk) room. It’s now a new seat in the garden. I had been thinking about how I could make our garden a more appealing environment, and wondered if I could involve Jason in making some garden bunting out of recycled plastic or old material that I could string along our fence? Trying to find things to do for Jason in the mornings is quite hard. Yesterday I amused him with my artwork cutting out a little sunflower from sticky coloured plastic and sticking it on the bedroom mirror. Jason’s not so much a hands on artist – he seems to enjoy artwork as a spectator, especially when the ‘artist’ chats and sings silly songs as the artwork evolves! I’ve seen Jason looking at the little sunflower on the mirror and smiling as if he is remembering the process of how it got there. I’m now thinking of taping sheets of paper together, blu-tac-ing them to the walls and doing some big drawings to amuse him. I’ll also give him a soft pen so he can add his own design. It could go disastrously wrong – but I’ll try anything to keep him (us) amused!”