Adapting to life in lockdown
Karin writes about life with her daughter in South Africa in a post originally shared on the Prader-Willi Syndrome Support - South Africa facebook page and reproduced here with permission
People with Prader-Willi syndrome (PWS) have some quite unusual traits one of the main things that has been discussed on PWS forums and Facebook pages since global lockdown is the anxiety they feel when things are uncertain.
I am sharing our experience of PWS during lockdown so far… It has been such a strange time that it is quite difficult to put it into words… I am sure in a few years when Hindsight 2020 becomes a term it will be far easier for us to describe.
People with PWS like a strict routine, Bianca always knows what is happening on each day of the week. She even reminds her teacher of the school timetable and good luck to her if she tries to switch any of it around…. It does come in handy though as she will remind you if you forgot about an activity and let you know the time if you are running late…
So when it was announced by our President that we needed to start social distancing before lockdown I didn’t take Bianca out of school immediately as we had the choice for the last three days before the Easter holidays started. I felt it would be easier to transition into it gently.
Once it was announced we would go into proper lockdown instead of shopping for and hoarding wine (I wish) and toilet paper I headed for the stationery and craft shops to stock up on some cheap activity/sticker books, craft activities, non-edible Easter eggs and a puzzle to keep us entertained. I got the last puzzle in the shop which was a rather strange picture of roosters but beggars can’t be choosers. Bianca like many people with PWS is good at and enjoys doing puzzles, regardless of the picture. For readers abroad all toy and stationery shops are closed for lockdown in SA and the selling of alcohol is not allowed.
She adjusted strangely quite well to being at home. Luckily we had some lovely warm weather and we could still swim in the pool in increasingly more creative ways such as in the blow up boat. We started doing an online PE class as a family to keep her moving as we were not allowed to leave the house for 5 weeks other than to get food. However every day she still asked “mommy what are we going to do today?” The choices were limited and running out fast.
People with PWS need to follow a strict diet so Easter can be a difficult time with all the chocolate eggs. In the past we have slowly but surely avoided social occasions over Easter, which was something we absolutely did not need to worry about this year! Finally a perk to Lockdown. Instead we came up with about 5 different scavenger hunts to keep the day going with mostly non edible Easter eggs and games.
Then thankfully just as my stock of activities was running out and she started rebuilding all her Lego for the second time, online school started… Phew I thought I could rely on her teacher to now keep her entertained for half the day at least…. Or so I thought…. We both had something to learn. Me, a bucket load of patience and both of us how to use Google documents!! Luckily for Bianca’s older brother who gave us a crash course… However it does mean that most of the time I am helping Bianca with her schoolwork and editing documents. I am very grateful that she is diligent and does all the work her teachers ask of her. If I try to get her to do any school-like activities I can forget it but if her teacher asks it is done happily…. Phew… still a good reason to pay the school fees then…
So somehow in amongst all this uncertainty we feel as adults about earning an income, the economy and all the people starving as a result of not being able to work Bianca’s life remains fairly simple if not more simple than before and she is okay with it…. For now anyway… Ask me again when she is redoing all her Lego for the 5th time… and I can’t buy her a new one for her birthday in June as a result of all the toy shops being closed!!