After wishing Bettina, a good night I whisper through her bedroom door “Book Tomorrow” Bettina whispers back “Oh Yes”.
“Book Tomorrow” doubles for a trip with her Dad to Frinton on Sea where we do a series of things together which includes buying as many books as ‘B’ wants from her favourite second-hand book shop.
The UK is a couple of months into COVID 19, the Coronavirus endemic and only at the beginning of restrictions that our population will face over the coming months, if we are to defeat this deadly virus. Going to a deserted beach (it usually is this time of year with or without a virus), Joyce (my wife), Jennifer (her big sister) and me, risk assessed the viability of social distancing for Bettina, to keep her as safe possible. Bettina is a 32-year-old woman who copes with a learning disability (autism and epilepsy) and is considered by the government to be in its vulnerable group. Bettina lives at home with her family.
Going to the beach is one of Bettina’s favourite activities. Bettina loves Frinton and feels part of their local community. It is something Bettina and I have done together for over 25 years and our routine rarely differs, this gives her confidence, security and familiarity, which are all very important to her.
Confidence, security and familiarity are especially imperative to Bettina during this difficult period. As a family we need to find ways to communicate with Bettina to help her understand what is happening around her now. Bettina has complex communication issues and is limited with her verbal communication, finding it difficult to decipher what we are saying to her. Bettina does however have a heightened sense of awareness to sounds, noise and body language – gifts she uses to survive and understand her world.
I would like to share with you how we will support Bettina through this difficult period. Some of these tips, I imagine, will resonate with you.
Five things we will do to maintain a semblance of normality for Bettina:
- Limit how much we tune into the news when Bettina is in our sitting room. I observe Bettina looking at her family when the news reader is talking in a serious and authorative tone. So, we will quickly switch over to either one of Bettina’s programmes or a comedy on TV such as ‘Friends’ or the ‘Big Bang Theory’. When we do this, we can see Bettina visibly relax.
- Careful with our conversations. We are never 100% sure how much Bettina understands, and we often notice her knowing looks (getting her ‘side eye’ at the dinner table) and she will hone in on key words and repeat them. Bettina’s anxiety levels rise when she detects a different tone in our conversation. I must admit this was a bit of a challenge during the General Election.
- Laugh a lot. Ok we do this with or without an emergency. We are blessed that Joyce (the leader of our gang) was a stand-up comedian in her last life. We look for things to laugh at (I am great value for money!). So, in the Raw household there will be much merriment over the coming months.
- I am sure you are aware of the importance of routine for people who cope with autism. With routine, Bettina can predict what is coming next (so there are no surprises). We will keep to our timetable, especially in the mornings and evenings e.g. Bettina and I will sit down and watch YouTube at 6pm every day (work permitting) to check out the latest Disney releases. With routine comes calmness.
- Show Gratitude: We will demonstrate our gratitude (and love) towards each other every day. We are luckier than we think.
Five things we will do for Bettina to maintain her Wellness and her Mental Health
- Eat Heathy: freshly cooked food and eating lots of fruit. Joyce is our ‘star baker’ I recommend her Instagram account to you, for lots of baking ideas: ‘Mamarawskitchen’
- Work: For as long as the Garden Centre is open, Bettina will go with her Personal Assistant (Job Coach) to work there, three days a week. Bettina has no contact with the customers where she works so she can socially distance. The rest of her programme for the week will be more of a challenge as her community facilities have been closed such as the library where she loves to progress her reading. We will support Bettina with alternatives, so she remains focused.
- Mindfulness: Spring is here so there are lots of opportunities for Bettina to go out into the back garden and blow ‘bubbles’ which she loves (our nearest neighbours also find it soothing, hearing Bettina giggle and seeing the bubbles blow into their gardens). Bettina loves being in the moment so we will help her to do that.
- Treats: Bettina loves chocolate (we all do!)
- Get Plenty of Sleep. Lights out at 10pm – we start early in the Raw household, as we embrace each day together.
And as a Family here are Five things, we will do to maintain our Discipline. As a small family unit 100s of miles from our wider families, especially during our time with the Army, discipline is something that has also been important to each of us and as a family never more so than now. Discipline sets you free!
This is what we will do:
- Keep Fit. Although swimming is out for us, we can walk and run, and we will do this as often as possible. Finding special places where we can socially distance so we can get our doses of Vitamin D
- We plan our week ahead especially for Bettina – it is her anchor and safety net. (Bettina has a calendar and a programme on bedroom notice board).
- Be Organised. Don’t leave things to the last minute. We all work to Joyce’s 5-minute call. Joyce calls 5 minutes and we all jump up and do our tasks before we leave our house.
- Take Pride. Just because we are living through a national emergency this will not mean we will drop our standards in both in our appearance and our behaviours
- We will keep a Sense of Perspective. We will not lose sight that this too shall pass:
Bettina and I had the best time in Frinton together, we always do. Just before we made it home, I asked Bettina “Did Bettina have a good time?” Bettina’s immediate response was “Oh Yes” and then repeated what she had done: “books, comics, hot chocolate, cookies, presents for mum, go for a walk, seashells on the beach, lunch, lots of fun with Dad”
Together like Bettina we will face up to adversity.
“It is not enough that we do our best; sometimes we must do what is required.”
Footnote: This blog post was written on Sunday 22nd March 2020. On Monday 23rd March The Prime Minister Boris Johnson addressed the nation on coronavirus. This brings new (and necessary) restrictions and precautions to keep us all safe and well. As a family we fully support this statement. New challenges for us all! but ‘this too shall pass’. Joyce, Jennifer, Bettina and me send our very best wishes to you and your family. Take Care and Stay Safe.