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Autism Awareness Week - A year like no other

This is the first in a series of blogs and stories celebrating World Autism Awareness Week.

Luke lives in Cornwall with three other gentlemen supported by Brandon. In this blog, Luke’s mum, Jenni, reflects on the past year and the many changes and challenges brought about by COVID-19.

A strange year

Luke gets creativePerhaps one of his art pieces could be submitted to Grayson Perry’s Art Club on TV? Well, it’s a thought! This was the latest idea in a year of suggestions that have been bouncing back and forth from here in Wadebridge, to Luke’s home in Par.

What a strange year it’s been for everyone – ups and downs galore, trying to solve the rollercoaster of life’s current situations.

How would Luke manage?

Difficult for all but what of Luke and his buddies? Four guys sharing a home, all in need of varying degrees of specialist individual support. Luke has no verbal communication and autism, so there had to be new routines – no journeys out for shopping and visiting, only a walk permitted within a certain distance from home and only for an hour. No family members to visit. Support staff having to wear personal protective equipment (PPE) and regularly wash their hands. Luke reads much from facial expressions as well as listening to conversation, so how was he going to manage and find a way around all this?

A moment's hesitation

Manage he did, but only with the amazing support and organisational skills put in place by Karen (team leader), and her team. Thankfully, spring and summer were on the way. Luke and his housemates have a lovely garden where everyone has always enjoyed being outdoors whenever possible. With routines in place and feeling so secure in his surroundings, Luke adapted well to everyone wearing a mask and learnt, like us all, to read eye expression and body language.

Luke playing a game in the gardenA moment’s hesitation, however, came when I was allowed to visit in the garden. When I arrived, all were occupied outside; listening to music, watching bubbles, and Luke was playing with a giant Connect game. He saw me and looked very puzzled – a stranger but a familiar voice, and long hair (usually very short). Just for a moment I lowered my mask. Luke’s face lit up and he beamed from ear to ear… all was well.

In the early lockdown days Luke was unwell and sadly COVID-19 testing was in its early stage when it seemed to take ages to get a result. Luke had wonderful care and was isolated in the lounge for several days. The one thing that really upset him was that he couldn’t make his own morning coffee – such is the routine that keeps Luke and his autism on an even keel. The organisation taken to make sure everyone was kept safe was amazing, and thankfully the test came back negative.

Staying connected

Spring turned to summer which fortunately, brought great weather. Lockdown was still in place for some of this time, so sadly I wasn’t able to be with Luke. We stayed connected and I was kept up to date on the constant range of fun and creative activities his support team had arranged. This included the Mad Hatters Tea Party, a garden competition, Easter crafts, St. George’s Day activities, ‘Star of the Week’, and ‘Being Mindful’.

Garden wonderlandThroughout all these amazing ‘happenings’, the guys were learning so many new skills and were involved in many new experiences. One of the many highlights was to have a jacuzzi in the garden – how wonderful and what a special treat for these guys.

When I was able to visit, the garden had been transformed with a new flowerbed bursting with colour and a vegetable patch with a variety of fresh vegetables. At one point I was sent a photo of Luke painting a wooden trellis – so homely and involved with what he was doing, yet another new skill learned. Luke has taken it all in his stride and his life has become even more enriched.

Beyond his own boundary

The third lockdown has been more challenging, not only for Luke I’m sure, but sadly for all of us in some way. Luke does get bored occasionally – one day he just stood in the doorway and wouldn’t budge. Karen, who knows his every movement, realised he just wanted to go out, he had just had enough.

Walking outside was permitted, and on returning home he was his usual relaxed self. What was remarkable about this was that Luke had made his own decision and he was not going to be fobbed off. He had overcome his autism and gone beyond his own boundary. This was also evident recently with his artwork.

Luke adores leaves and had brought some back to use in a nature project, sticking them to a board and painting them. He had for a little while, always wanted company whilst being creative, but this time he was happy to sit surrounded by glue, leaves, and paint. Amazingly, he did not want anyone with him, so happy to take the lids off pots himself and apply glue to whatever was needed. Once again, he had overcome his reticence, and his autism.

I am sure that the occasional bout of frustration is helping Luke to take tentative steps outside his autism, knowing that those around him will still be there to support him, and that he can still trust his surroundings even out of his comfort zone.

So, Luke, shall we submit your latest nature piece to Grayson Perry’s Art Club? The answer a resounding ‘Yes!’. Luke, I am so very proud of you for all you have adapted to and overcome during this time, and I can’t wait to see you and that special beam of delight.

More information

Find out more about Autism Awareness Week and how to get involved on the National Autistic Society website.