As the UK celebrates Autism Awareness Week, we’ve been reflecting on the challenges of the past year and the impact this has had on the people we support with Autism. We know that the response of our services has been excellent; they adapted quickly and continue to come up with creative ways of keeping the people we support busy. To get more of an insight into this, we wanted to talk to some family members to see what they had to say about the support they have received.
Jackie Cheeseman, mother to Euan, said:
“The first lockdown of the pandemic occurred on the 23rd March 2020, the day our son, Euan, returned to Hollyrood after his weekend with his family. We had waved him off saying “See you Friday Euan!” never thinking how long it would be until we saw him again. He had never been away from us for more than three weeks.
Living in London, we were hit hard in the early months of the pandemic. We had some consolation that at least our vulnerable son who has severe autism, learning difficulties and who can find the world a very distressing place, was out of the greatest danger but how would he cope? As it happened, he did, beyond our wildest imaginings.
Euan took to Whatsapp having always rejected phone calls, Skype etc. Staff would phone in once or twice a week and we could see and talk to him, with his brother and sister joining from their respective homes. We sang, read stories and it was comforting to all of us. We got regular updates from staff including photos which meant the world.
Euan has an extremely active timetable usually that takes him out and about in the community with lots of exercise. He is a “doing person” and the restrictions curtailed his on-site therapies and activities like the gym, swimming, horse-riding etc. But the grounds of Hollyrood proved vital – staff took him on running circuits, they got out the big paddling pool, he rode trikes and had access to the onsite gym and the sensory room. Then there was his new Smart TV which afforded him YouTube videos including yoga, keep fit and music. Staff proved incredibly resourceful and Euan coped. They have now even organized Euan having “Alexa” and for someone who finds communication very difficult, he is tentatively making his choices vocally.
Staff supported him through a significant change in his anti-seizure medication as he also has uncontrolled epilepsy. He got new glasses, dental treatment and had his annual health check in 2020. We know this sort of medical treatment was denied to so many like Euan nationally. Hollyrood staff also arranged for the first vaccinations for coronavirus in January 2021. The relief was indescribable given what was happening elsewhere as Jo Wiley highlighted.
When restrictions eased, Hollyrood management worked creatively to establish physical contact in whatever way worked safely for the people they support and their families. For us and many like us, meeting behind a Perspex barrier was never going to work and would be something alien to Euan. Instead we had socially distanced local walks and, if allowed by the rules, Euan would come to the family home like he always has. But they were fleeting opportunities and we were totally reliant on Hollyrood.
Families like ours could feel very isolated during the pandemic. The media rarely mentioned younger people receiving support in residential care or supported living. We felt totally excluded from consideration by those setting the rules nationally but fortunately, as our loved ones live at Hollyrood, a bond has developed among the families and we have our own little community. It meant we could encourage each other, share news and hopes throughout the year.
Ultimately, this is a story of the resilience of our adult children, their faith and trust in those supporting them, the extraordinary dedication of staff at Hollyrood who kept them all safe, well and happy despite the huge challenges faced and a home that works in partnership with families. As parents, we had the knowledge that Euan was safe, protected but still enjoying his life his way. It has been a very tough year due to the separation but we couldn’t have wished for a better set of staff to be there for him in a setting that proved invaluable".
Family member Michelle Varian, mother to Timothy said:
“Hollyrood has done a fantastic job at keeping the residents safe from coronavirus along with being creative and therefore keeping the residents occupied and content in difficult times. Staff ensured that residents were engaged in a host of innovative projects to keep them amused over the period. For example, when weekly visits for a lunch outing were no longer allowed, the home ensured that takeaways were arranged so that residents did not lose out on their much-loved treat.
It is a testament to the hard work by the staff and management that to date there has not been an outbreak of Covid 19 within the home. We are all deeply grateful for this.”
Ivan Machado, Assistant Manager, tells us more:
"I am very proud of our team and how dedicated everybody has been during this pandemic; to have some continuation of great care for people that lack the capacity to fully understand the significant changes to their lives.
“We set up a sensory room full of sensorial lighting, waterbed and relaxation music. We wanted the people we support to have an area they could unwind and relax. This area has been extremely successful, and has offered a calming environment, as well as helping with a decrease in behaviours that challenge.
“The room includes a MOBII sensory table, which was purchased to support everyone with alternative internal entertainment. This offers a range of entertainment, such as games, colour painting, ball popping, own and family picture painting, relaxation music with family photographs (this part is a favourite for some of the people that weren’t able to see their family during lockdowns). It also helped with a trip down memory lane as families provided us with many photographs to add to the device.
During lockdown the people we support really missed going to the cinema so the staff created a cinema room to offer a “cinema like experience”, as well as anaromatherapy and music therapy room.
People used to attend these activities externally and really enjoyed them, so we wanted them to still benefit from those activities onsite. We have seen a decrease in challenging behaviours for many of the people we support and I really believe that offering these alternatives at Hollyrood, has contributed to this decrease".
To see more about the impact our staff are having on the people we support, take a look at our social media pages.