Treading Water

We, like many others, had made plans but they all fell away once Covid 19 hit. One Monday in March 2020, Joshua went off to school as normal. Little did we know that it would be his last ever school day. That day news broke of a potentially deadly virus and as Joshua’s parents, we made the difficult decision to keep our vulnerable son at home. He could not tolerate wearing a mask and would not understand social distancing, he always invades personal space. We simply could not risk him becoming infected and having to go to hospital alone and we were unsure how the infection could impact on his volatile epilepsy. So Joshua stayed at home in order to protect him in the best way that we knew how. since he began school my priorities have always been to keep him safe and happy and home represented the best chance of that, so even when he was offered a partial return to school in June 2020, we turned it down. He should have finished his school career in July 2020, but sadly it ended abruptly in March 2020.

This was not the only change that Joshua faced : Yorkshire Grandma, who had known and cared for him all of his life, disappeared too. She was classified as clinically vulnerable and so she left her home that same week in March to move in with her daughter, so she too disappeared overnight, without the opportunity to say goodbye to him, and she later decided to stay there permanently. For several years, Joshua had gone to respite one weekend in every four and this worked very well for us all. The last time that he had access to respite was in February 2020. But with lockdown it closed and even now is unable to offer us any respite as they have, in common with many social care providers, a staffing crisis. So all of the outlets that Joshua had, which gave him access to people other than his parents, closed off without warning.

Over the last two years we have been incredibly fortunate that Joshua has an accepting and adaptable personality. This trait has ensured that we have survived the last two years together without any real trauma. While I am sure that Joshua misses Yorkshire Grandma and the staff and his fellow pupils at school on some level, he has certainly not pined for any of them. Fortunately Joshua has always been a real home boy and a Mummy’s boy too, so this has helped him to adapt to the new reclusive world that he found himself thrust into.

Being at home together, we now move at a much slower pace than we used to. Joshua appears to relish his lazy mornings of sleeping in , listening to his favourite music then taking a relaxing bath. We aim to go out most afternoons : during lockdown that tended to involve simply driving around to be reminded of the outside world or walking the dogs up our lane. We had to improvise and during the first year, we put up a tent which we would visit in the afternoons to read, snack and throw the ball for the dogs. The weather finally destroyed our beloved tent so last birthday Joshua was treated to a wooden pod, as a more permanent, weather-proof structure where we can while away the hours enjoying those same simple pleasures. To Joshua’s delight , hospitality opened up and he was able to return to his beloved cafes , so there was a destination for his previously aimless drives. He spends more time smiling and giving a thumbs up to staff and fellow customers than he does eating or drinking, but it clearly makes him happy and he has lost time to make up.

If Joshua has been confused by the last two years, he has rarely let it show. He has looked bewildered on very cold days, when we have huddled outside to be able to meet up with family and friends or have sat at an outside table at a cafe rather than being warm and dry indoors. He initially complained when we sat in the car to eat his McDonalds Happy Meal, with him pulling at his seatbelt indicating that he wanted to get out of the car and go inside but after a few trips, he adapted to the new rules and accepted it was a fair price to pay for his burger and chips. I would love to know what he thinks has really been going on.

But I am pleased to report, despite our silence here, that we have survived the various lockdowns and have managed to avoid the virus too. I have never spent so long with our son, not even when he was a new baby. He has become my shadow and my new job as full-time carer. As the covid situation improves, we will aim to get back on track with our future plans, albeit cautiously, as like many families, the last two years has felt as though we have been treading water.

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