The Sycamore Trust’s Emma Gadbury looks back on a difficult 12 months.
One of the greatest strengths of the Sycamore Trust UK as an organisation is the staff and the relationship they have with Autism. Many of Trust’s staff are either on the spectrum or have a close family member who is autistic, giving us an unique insight into the issues faced by families with autistic members. One such person is Emma Gadbury, who runs the Girls Group and assists on a number of other projects. Emma is on the spectrum and has written a very powerful piece on how she’s been affected by the disruption caused by coronavirus.
My year in lockdown
The year of 2020 was a bit of a shock for me as I spent 90% of my year stuck inside the family home. It was like being a teenager again, when I was terrified of the outdoors, except this time the outside was a new scary world different with an invisible new force that had everyone terrified. This new world was a lot to take in with restrictions on who we could see and where we could go and new rules which were confusing, even to people without autism.
To begin with, we were convinced it was a bad flu but people started dying and the lockdown began. Although we were told it was a temporary measure it still worried me. I was worried about staying indoors and what that would do to my mental health. Would I end up that teenager scared to leave her room again?
For the first few weeks I didn’t leave the house. I disinfected all the shopping and deliveries that entered the house. I washed my hands constantly as suggested by the government. I also worried about the other people panic buying toilet paper and essentials such as pasta, hand soap and tinned goods.
By June, we’d slipped into our new routine. Mum worked from home, while dad and I watched tv or I did a craft activity. When lockdown began, my sister moved out and she was not allowed to come see us which meant we missed her a lot. We also missed our summer holiday due to flight restrictions, which pleased me because I was too scared to go.
At the end of July restrictions were lifted and we were finally allowed to see our family again and go back to work. This seemed like such a relief but also scary because after so long indoors the outside felt alien and it wasn’t the same as the world we knew before COVID-19. Now we were encouraged to wear masks while in shops and keep our distance from others. There were so many new rules, and everyone had their own idea what they all meant. Being Autistic and Asthmatic I could have been exempted from mask wearing but I’m too scared to go into public without my mask or my hand gel.
We had just begun to get used to this new world when we went into lockdown again in November as the NHS was becoming overwhelmed with the amount of people needing treatment. During the build up to Christmas everyone was hopeful that we’d get to reunite the family on the day. Unfortunately, we received the news we all dreaded which was a huge disappointment and our Christmas of 14 became Christmas of five people.
January began with more restrictions and rules. My dad returned to work, mum worked from home. Unfortunately, in January my dad caught COVID-19 from a colleague. At this point my mum and I were tested, and we were both negative. When this happened, I felt unsafe and unsure, and my asthma flared up due to the stress. I was terrified for my dad and what would happen if we all caught it. What made this time even scarier was that my mums aunt had been admitted to hospital with COVID-19, and she sadly passed away.
My dad spent a week in his bedroom alone with mum taking him food and drink and checking on him. A week later mum tested positive. At this point I was safer isolating in my room. I cleaned everything before I touched it and wore a mask if I left my room. About five days later I started showing symptoms so re-tested. I had to wait six days for the result, by which time I was in Queen’s hospital in A&E with breathing difficulties due to a COVID-19 related chest infection. This was the single scariest thing I have ever experienced. I had to ride alone in the ambulance and was in a cubical alone. I was given antibiotics, a nebulizer, steroids and fluids. The NHS staff were amazing and took care of me really well and let me go home with the instructions to rest and take the medication they gave me. I was grateful to get home and so were my parents as they had to wait at home for news.
The recovery period was hard. We’re now in April 2021, two full months after having COVID-19 and I’m still having issues. My lungs are still weak and so is my body. My sense of taste and smell have altered and left me unable to eat certain foods I use to enjoy. My hands constantly shake and it has affected my pain levels from a previous condition. I struggle to focus and my head feels like its filled with cotton wool and a light switch has been switched off. My parents are also still affected. Going into a third lockdown made me feel relief that someone was seeing what was happening to the rising numbers again. This time I understood why the lockdown was necessary and that no one should go though this horrible virus.
Having the virus changed my view on it and showed me how dangerous this was. This time when people broke the rules I was angry because they could be putting others at risk, vulnerable people, even their own family members. When I was offered the COVID-19 vaccine I happily accepted. Having the vaccine felt like one step closer to this horrible chapter closing. Having the vaccine done was so easy and surprised me how well the centre was set out. Everything was cleaned between people, temperatures were taken on entry. Each little check point flowed so fast and easy, giving information on which one I was getting and potential side effects. I had the Oxford jab and I barely felt it. I did have a few side effects – I felt flu-like the next day but within 24 hours this was gone. The jab site on my arm did hurt for a few days but was only a mild discomfort.
My year with COVID-19 was a roller-coaster of rules and emotions. Hopes of lockdown easing but fears for my loved ones with the virus on the loose. It feels like a war that is very real, but we can’t see the enemy. This year has been spent trying to be rational and not be scared. Its been hard finding the balance between wanting to scrub my hands every 5 minutes and living life. The constant rule changes and the different interpretations have been very confusing, and I am very grateful to have had my family around me during this period, and I’m grateful for technology to keep in touch with those I couldn’t physically see. This year has made me see what is important in my life which is my family and friends. I am very grateful to have survived this year in lockdown and can’t wait to get back to the new version of normal outside the house and getting back to work.
For more news about our Girls Project, click here; http://www.sycamoretrust.org.uk/latest/article/Great-start-to-2020%21