“So happy” Bettina quietly says this as she gives me eye contact from across our dinner table. Nobody can tell Bettina how she feels, she either feels it or she doesn’t, so when she says she is so happy it means everything to her family.
“So happy” despite so many restrictions placed on her life now.
When I originally wrote my blog post: ‘Being Bettina’s Dad – This too, shall pass’ it was the weekend before the Prime Minister’s broadcast. Before the lockdown, we could still go to the beach and Bettina was still working at her Garden Centre and with the animals etc, supported by Personal Assistant/Job Coach. Her week has changed significantly and will do so for the foreseeable future. I therefore thought it would be timely to share an update on my original post:
Last night, after wishing Bettina a good night, I whispered at her bedroom door “Go for a walk tomorrow” and Bettina whispered back “Oh yes, go for a walk good fun”.
Our walk together will double as her daily fitness session and, if necessary, shop for ‘essential items’ for her family. During our walk we will take pictures together and post them on Instagram as part of her ‘What Bettina saw on her daily walk’ series. We have done this each day, usually early in the morning when there are not many people around. If you would like to see her pictures they are on my Instagram. We are both enjoying a heightened appreciation of nature with the reduction in traffic and pollution. I can see Bettina enjoying the bird song that could easily be missed pre-covid19.
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.
Confidence, security and familiarity are especially important to Bettina during this difficult period. As a family we need to continue 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 continue to support Bettina through this difficult period. Some of these tips, I imagine, will resonate with you.
Five things we are doing to maintain a semblance of normality for Bettina:
- We 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 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 to key words and repeat them. Bettina’s anxiety levels rise when she detects a different tone in our conversation. This can happen if we discuss Covid19 news, so we must save this for another time when Bettina is doing stuff elsewhere in the home.
- Laugh a lot. Ok, so 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 – we have already started!
- 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 and Bettina’s, 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. If as a family, we get through Covid19 healthy and safe there will be many things we will show gratitude for in years to come:
- That we were together as a family – we feel incredibly grateful that both our daughters still live at home.
- We had more time to talk and enjoy each other’s company
- Bettina has had so much input from each of us we can visibly see her progress with her communication and contribution to the way our family runs
- We found new and innovative ways to fill our days and evenings
- We appreciated our back garden more than ever before.
“We were together. I forget the rest.” —Walt Whitman
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’ Even though I run most days I am grateful for ‘Blue Harbour’ trousers from M&S more than ever!
- Work and Education : As Bettina is unable to access or participate in her usual weekly schedule, B’s family will need to rally around her to keep her occupied and fulfilled until the restrictions are lifted. So, her new timetable consists of helping with light chores, completing puzzles, board games, jigsaws, reading, and her ‘wordsearch’ books which she is passionate about.
- 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. We also give Bettina space to be on her own. Her privacy and time to think is important to her and which we all respect.
- Treats: Bettina loves chocolate (we all do!). On the return journey of our walk, Bettina and I split a bar of chocolate (which she has chosen).
- Get Plenty of Sleep. Lights out at 10pm – we start early in the Raw household, as we embrace each day together. Our family are all up and busy from 7am and this hasn’t changed with the lockdown. We all have stuff to do.
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. So far each of us have managed to complete a daily fitness session of some kind. Joyce is a keen gardener which is good for all round fitness. Bettina and I like to watch Joyce gardening, which is good for our mindfulness!
- We plan our week ahead especially for Bettina – it is her anchor and safety net. (Bettina has a calendar and a programme on her bedroom notice board). Since the new restrictions Joyce has posted two new notices: her new programme and what facilities are still open to her (and what has closed). It is important to Bettina she knows what is coming next so there are no surprises.
- 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. ‘Look Smart – Feel Smart’ are watch words.
- We will keep a Sense of Perspective. We will not lose sight that this too shall pass:
As a parent and a husband, I truly believe I will be judged both by my family and by myself on how I responded to this event and how I supported my family every day. So, for Bettina and our family I will ensure I am in my growth zone:
Because what is Courage without Fear? From my blog post, What is courage without fear?: “Bettina teaches her family and friends so much about life and what is courage without fear is a good example for me. I personally do not worry about feeling fear but what worries me is how I will perform and respond to fear on each occasion (will I let people down?). Bettina can often be frightened, but this does not stop her from living her courageous life.”
Source: Steve Raw www.leadershipintheraw.org
“You may not control all the events that happen to you, but you can decide not to be reduced by them.” —Maya Angelou
Inspiring as always Steve. Love to all & keep safe xx
Thanks so much Sue. Best Wishes Steve