Jo shares her experiences of lockdown with son, Dennis.
'It been very worrying for me as a parent/carer during this pandemic period. Every morning and night I said my prayers, “Lord my God please protect me from the virus.” This was really crucial as I was aware that had anything happens to me it would have been impossible to care for my son who has a genetic condition, Fragile X Syndrome with ADHD. Dennis prefers to be called 'Coach Deno' due to his qualified status as L1 in coaching in Football and on his way to gain L2.
The first few week were very traumatic as Dennis’ routine was upset, he was furious when he heard the news and Mr Johnson warning/advising people to stay home this meant that all of Dennis' activity would come to a standstill. Initially, he would say: "I am safe, nothing will happen to me, I am the FA Coach Deno, fear me!”. However, when the cinema, bowling and all the leisure activities were advised to close down due to the pandemic , he realised the significance and stayed home. When he did go out he covered and protected himself with the gloves and scarf. Prior to that, we did not have any mask, gloves or hand sanitizers due to the disappearance of these items from every big shop, corner shop and supermarket, before we realised the important of Personal Protective Equipment (PPE). Dennis got anxious. He wanted me to go shopping everywhere for PPE. It was also the holy weeks of Lent, too difficult to attend the live stream mass on my laptop or mention the holy days during these weeks. His anxiety manifested itself by damaging the holy book, the altar, as well as other items.
"I wondered, what was the best way of distracting him?"
I decided to let him go shopping within walking distance for mask, gloves, small perishable food items. This meant he was able to see his surroundings, the reaction of the commuters, public transport, the meaning of social distance. It also meant giving him the bank card for payment as cash was no longer accepted at the counter. I thought back to the time when Dennis was in possession of his own bank card used it everywhere spending all his money. My fear disappeared when I saw that he was sensible and understood the importance of using the card safely as a payment mode. During these shopping sprees he misplaced the card, which had never happened before. He was very disappointed and blamed himself for not being responsible in keeping the card safe.
We developed a new daily routine which incorporated his shopping schedule, exercise (walking and cycling), and gardening, to enjoy the warm weather, baking cakes, preparing salads, and warming up food for lunch and supper. His motto was “No washing please!". Dennis also enjoyed playing board and card games and watching his DVDs, admin work (shredding and scanning documents).
As he took interest in these activities he started watching and picking up lock down videos on YouTube and TikTok, his visual strength was astonishing evidence of tremendous progress over the years. He also managed to find the conspiracy behind the £20 note on YouTube and identified the symbols that linked to the pandemic verbally to me after viewing. He kept the £20 notes safely locked into a picture frame so that no one could touch it and prevent the further spread of the virus. Recently Deno panicked when he noticed the same note being dispensed from the ATM.
He started searching baking recipes too and we had to go shopping for baking ingredients which disappeared from all the stores. It was a nightmare to make Dennis understand people panic buying, all he wanted was to just buy the things he needed.
As a result of all of this, I was way behind with my own work. I was wrong to think that lock down and my isolation were helpful for my safety and I would peacefully work from home, as it was very difficult to balance the work and the support that I had to prioritise for my son's needs.
He finds it hard to see myself or others on webinars and working on laptop, as he wishes he was doing some sort of webinar/conference online in football. I prayed for an email from FA to come along! Happily, he received an email to book for a webinar and he is looking forward it, he has warned every one including family in India, "Do not to disturb me on Friday, I am in Conference, do not come to the room."
Dennis' cousin brother Jack has provided immense support to Dennis through this time. In addition, we have been able to keep in touch with family in India, thanks to modern technology. Dennis has been able to speak to his Grandma and, via his uncles on WhatsApp video, Dennis has been able to witness the lockdown experience back home in India.
I end this experience journey with the question, ”What will happen, when I am no longer here? What else is in store for future years ahead?"
Thank you Jo and Dennis for sharing your story from lockdown. If you have a story which you would like to share, please contact info@fragilex.org.uk.
