Many of you will have followed the “Being Bettina’s Mum/Dad” series created by Steve ( www.leadershipintheraw.org ) and myself which centres around our daughter, Bettina, who copes with autism, a learning disability and a complex language disorder. Steve has already written many posts about Bettina on how she has coped with the global pandemic – thanks Covid19, as if we didn’t have enough to do! – and the steps we have taken to help Bettina through it and Bettina’s own personal courage in finding sense and order out of constant change. As parents, we can only imagine the mental strain and utter confusion Bettina has felt and hoped that we have been able to relieve some of her anxiety by the steps we have taken.
However, we are now about to go through a completely different phase – the return to a more “business as usual” state – which will need the same amount of careful handling and communication the onset of Covid19 needed.
Our greatest fear was what would happen if Bettina caught Covid? The media advised that drastic measures would be taken in the event of hospitalisation, including the bar on family members attending the hospital and that patients, including the most vulnerable of our community, would have to face being admitted and treated alone. How would we explain that to Bettina? How would she cope when she cannot always effectively communicate for herself? It was a frightening prospect and, to be honest, I give myself a big pat on the back on how we handled the move towards the first lockdown and (hopefully) preventing our nightmare scenario. My personal guess was that this virus was not about to just blow lightly through the world and die of its own accord. I am not a medical or biological genius, I just have a lot of common sense, and it made sense to me to start protecting my family as early as possible and therefore made the unpopular (initially) decision to insist on the wearing of masks, gloves where needed and hand sanitizer by the handful! Fortunately, Bettina’s wonderful carer/p.a (Donna) had already introduced Bettina to a regular practice of using hand sanitizer as part of their routine. It was difficult at first as no-one else was wearing masks, or gloves, which confused Bettina, but we kept to our decision.
However, with the introduction of a vaccine and the determination of a country ready to get back to living as normally as possible once again, the re-introduction of a normal world into Bettina’s new and accustomed routine will take careful step-by-step handling. We also have to be prepared for restrictions to come back in, which nobody wants of course, and this will greatly affect Bettina, so where do we start and how do we go about it? We will work towards our five point plan:
1. During previous periods of respite from restrictions we have changed Bettina’s visual timetable to suit the order of the day. This time we will not be changing the activities list from “closed” to “open” and will leave it as the depressing read it has become!
2. We will make a new visual timetable for Bettina with each day having two options. One option will be the current activity which has been available for a few weeks (such as her supported employment days) and an additional activity where it has become available but may be temporary. The options will either have a tick or a question mark above them, which is something Bettina has responded to in the past.
3. We will not be going full speed ahead with all of her activities, even if they are available, for a couple of weeks until we are sure they are definitely available. This will help manage Bettina’s expectations and her emotions. As desperate as we are for Bettina to take possession of her life again, we will keep a restrained attitude to freedom. These activities may include going back to reading books in the library; going swimming; lifeskills centre or to the cinema.
4. Irrespective of any decision by the country to ditch the masks, social distancing or regular hand sanitizing (I personally think and hope that hand sanitizer is here to stay!), we will continue to embrace this trinity for some time yet. To be honest, Bettina has become a star when adhering to these three rules and regularly prompts the rest of her family if we lapse at any time!
5. We will co-operate (as a family) on any vaccination programme or booster initiative to keep our family, friends, and community safe. Despite Bettina’s very vocal objection to having a needle stuck in her arm (twice now, thanks Mum!) and the gnawing ache I feel in my stomach when we take her for her jabs (Bettina probably thinks we view her as the family pet needing to visit the vet for shots!) we will cope with the accusatory stare from Bettina; the worried looks from others waiting for their vaccination and medics feeling guilty for upsetting her for however, or as many times as will be needed.
Additionally, we will keep a closer eye on any changes or enhancement in Bettina’s emotional wellbeing which may indicate a need for extra reassurance(s) on what is happening around her. Suddenly having people in closer proximity to her once again will not be easy for Bettina, nor will the noise levels that will accompany re-found freedoms. Eating out will be difficult at first as Bettina has become used to the companionable silence of reduced background noise – I cannot think why I never thought to have piped music in the background during family meals! – and having lunch in the park without menu choices being discussed, or the hustle and bustle of restaurant employees.
As we go back into the real world and reclaim our freedoms, Bettina will most certainly not be the only one to be anxious or confused, but we will tread lightly and, who knows, maybe our five point plan will help someone you know!