All entries for Tuesday 12 January 2021
January 12, 2021
From 30th March to 3rd July 2020, with the support of his family Finlay kept a daily diary to record his day to day experiences during the first lockdown. The family experimented with the diary format, including a picture diary and some times when everyone in the family recorded three good things and one bad thing about the day. In this blog Nina, Finlay’s mum, offers some reflections on the time they kept the diary and beyond, with some excerpts from the diary. This blog is published with the approval of Finlay and his family.
I think I started the diary to help me cope with the prospect of lockdown. I faced a long period of time caring for Finlay with no college or clubs to go to and no prospect of meeting up with friends or having respite breaks. I felt the need to structure the time, to break it down and make it seem more manageable.
Another aim was to create a routine way of finding out how Finlay was doing; what he was interested in and enjoying and what (if anything) was worrying him. I felt this was important as Finlay has always found it hard to express his more negative feelings and it was a worrying and strange time for everyone. This turned out to be a bit of an own goal because I feature quite highly in his entries about the things he wasn't happy with! But he was upset about small stuff and wasn't worried about the pandemic or bigger issues which was reassuring.
The diary also evolved over time. We did a photo week for something different and weeks where we'd all record things we were happy and unhappy about. This was a great way of communicating how we were all doing and of keeping in touch with our son Tom who had moved out at the start of lock down.
My thoughts having re-read the diary are perhaps rose tinted as we got through that time unscathed.
Lockdown 1 - when we were all at home, only going out once a day to exercise, seems like a simpler time. The ability to follow a set routine and having time to do things slowly really suited Finlay. As the year has progressed and Finlay's college has opened and my work has opened, life has got busier and more complicated. Finlay loves being back at college but has really struggled when his routine has changed often at short notice. There have been 2 occasions where Finlay has had to have a COVID test and stay home until he got the result and he has struggled with this. Recently I have had to self-isolate and I haven't been able to take and collect Finlay from college or take him out at the weekend like I normally would. Finlay has found this really difficult too. At least with Lockdown 1 we knew where we were. Now we have Lockdown 2 and tier 3 restrictions but we are trying to keep schools and colleges going. This has meant lots of changes in routines for Finlay with little warning. Things like this are hard for him to understand and to cope with.
In the diary I can really see that Finlay loves birds and animals and trains. I can see that he enjoys the contact he has with people who weren't living here with us; virtual sessions with his Pathways college course, virtual sessions on the MENCAP Employ Me course that we did and contact from his older brother Tom and his girlfriend Jasmine. I remember that Finlay and I enjoyed spending time together and it has made me reflect that in the future I want to make sure I have time to do things with Finlay. I would like to find more of a balance where I spend less time ferrying him to and from places to do things with other people. We both enjoyed the slower pace of life.
I can see the technology stresses that we had. Learning to use Google Classroom and Google Meets and the struggles that we had when it didn't work. I'm not sure who coped worse with this - me or Finlay! I can see the family tensions in the diary. All of us living and some of us working under one roof for a long period of time - not knowing when nor how it would end. That was difficult at times.
The last thing that stands out to me are the tensions caused when I had to balance looking after Finlay's needs with other demands and my own needs. My Mum and Dad struggled in lockdown and it was hard to support them when Finlay was always with me. I also notice the lack of respite services both then and still now. Finlay normally accesses 3 services for respite and none of them are properly back up and running at this time - for good reason - so we have had very few breaks. I have found this hard especially as the pace of life has picked up. Finlay was really used to going out with other carers and was just getting more confident at his overnight respite and all that progress has been lost and will have to be rebuilt again when the time comes.