As part of Scope's Won't Be Forgotten campaign, Shaun reveals what life has been like for his family at home during lockdown.
It was just before lockdown was announced, the virus rampant in Europe and spreading alarmingly in London, grandparents shielding, society shutting down, fear and tension unbearable, that Joey ran in to the bedroom to talk to us.
Using a mixture of pointing at photos, her own-brand Makaton, a lot of frustrated shrieking and angry arm pinching she was telling us that she wanted to go on holiday, to Spain, on an aeroplane, with Grandad, as soon as possible. We thought: “This is going to be a long summer …”
As for everyone, it has been a very long summer. For Joey the first manifestation was that all her normal routine, very important to her, had gone. Not just no mention on the calendar of going on holiday with Grandad. No school. No after-school club where she loved sitting in the sensory room looking at the X projected on the floor. No swimming pools. No playgrounds. No one coming to see her at all. Just day after day after day spent with her tedious parents.
She became very frustrated – but explaining Covid-19 and a global lockdown is hard enough to adults, let alone a learning disabled 13-year-old girl. Eventually we decided to tell her that a tiny little monster was on the loose and we all had to play a game and hide until the monster ran away. To be honest, it’s about as cogent as anything Boris came out with.
The conversation became even more complicated when Joey started coughing persistently. As Sarah works in a hospital we needed to try to test Joey for Covid-19. Everyone agreed that a home visit from a nurse would be less distressing for Joey than taking her to the hospital. However, when lovely Sherill, in full PPE with face visor walked in holding a swab, the fun of the little monster story seemed to completely unravel. She got the swab (it was negative) but afterwards … it’s the first time Joey’s ever managed to look at me with “daggers”.
Like millions of other parents, we had jobs to do, Sarah still had to go in to work. We have another child to home-school. And Sarah had a period of total self-isolation in the bedroom right at the beginning of lockdown before testing was available (Joey spent the week trying desperately to get into the room of sudden unspeakable mystery).
But Joey needs full time supervision and it became a struggle to keep her engaged. Ipads and DVDs increasingly became child-minders and Joey got bored. Really bored. New behaviours have manifested which, as she’s 13, may have happened anyway. But we wonder if lockdown contributed. She’s become more consciously violent, including towards herself. More throwing things around rooms, more hitting, pinching, biting and, worryingly, head-banging.
And the triggers seem to be increasingly inconsequential – a tiny collision into a sofa, a momentary inability to find a toy she wants. We can’t but think the extreme boredom, or possibly just lack of regular distraction, has played its part.
Our experiences must be typical of all families reading this, and a lot easier I’m sure than many. Things improved when we were able to get her back into school for three days a week, and her after-school club brought in social distancing measures to enable her to go back in once a week. We’re extremely grateful to everyone who has helped Joey, and us, through this disorientating time.
We’ve put a possible trip, to Spain, in an aeroplane, with Grandad, on the calendar for October. Fingers crossed.
There She Goes is currently showing on Thursdays at 9.30pm on BBC Two. The whole series is also available to view on BBC iPlayer.
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