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A Parent’s View: Communicating with my autistic son during Covid-19

Carers Week (7 – 13 June 2021) is an annual campaign to raise awareness and recognise the contribution carers make to families and communities throughout the UK. This week the mother of a service user at Cygnet Hospital Harrow shares her account of how important communication has been to her relationship with her son throughout the lockdowns of the last year.

If there’s one thing I’ll be eternally grateful for, it’s that we encouraged my son to use a mobile phone when he entered the Sixth Form of his special school. Fast forward six years, and he is staying at Cygnet Hospital Harrow – a lovely dedicated setting for those with autism and mental health challenges – and he is able to contact me, anytime he likes. A couple of devices with unlimited calls and SIMS inside them, and he is able to text, browse and chat whilst the spare handset is charging.

My son loves to text family members little quizzes about facts and dates and music. Sometimes he creates a list of facts with deliberate errors and I have to Google carefully to make sure that birthdays are accurate or albums by an artist are in the correct order. He also likes to remind us of babysitters from the past, or TV programmes and it is fun to share memories. He texts multiplication quizzes to my sister and music questions to his dad. Sometimes he asks me to ask one of his carers to fill me in on what he has been doing. He finds it hard, himself, to cast his mind backwards and forwards over the week and to retrieve information rapidly and he likes to focus on his pet interests.

When I contact the hospital it’s amazing how members of staff have details of what he’s been doing at their fingertips – whether it’s which haircut he’s been requesting, or songs he’s been playing and whether he has been singing along to reggae and dancing! I feel a part of his life and I can imagine him doing certain things which makes me feel in touch with him.

I don’t have that sinking feeling that I won’t be able to speak to my son because I can contact the ward phone to speak with the nurses, and between 9am and 5pm, the reception desk at the hospital is able to put calls through. Another option would be to speak with Valma, the hospital social worker, or Lynne, the ward administrator. There is also the dedicated patient phone on the ward, which the staff will assist patients to use to make and receive calls too.

Visiting has been restricted at times of stringent lockdown, but Skype calls and similar technology were used to help us keep in regular contact. When restrictions started to be eased the hospital managers worked hard to make face-to-face visits safe for residents and families. Fortunately, there are various outdoor spaces at the hospital which made social distancing a possibility. The grounds also enable service users to play games like football and badminton. This helps to promote communication and spontaneous conversation for my son and I, as we play, because the activity and the fun of the moment appeal more to my son than having to process language and think about something which isn’t in his mind at that moment.

I’m pleased that my son is managing to hold his own and to communicate with members of staff whom he hasn’t known for that many months, but who have consciously learnt to recognise his communication methods. I know that he will be enjoying the buzz of having other service users around him, fellows who listen to different types of music, and eat different foods, chat about the outside and whom, I am told, are friendly and inclusive towards him. In all honesty, my son’s social experience has sounded preferable to that of his college friends, whose clubs and day centres have been shut due to Covid.

I feel that an opportunity for personal growth is being offered to my son because he is making his own choices about which activities he joins in, and how he shapes his leisure time. At school and college he pretty much had to do timetabled things and at home he might have carried on doing the same sports and past-times he had always liked but which might have become a bit stale for him. At Cygnet, my son will choose whether to join an Occupational Therapy activity or to pass on it, and this is the real start of being an independent adult – even if I wish he’d choose to go on a two mile walk to South Harrow, instead of listening to music!

Because I know I have the facility to communicate with my son, and because I get thoughtful updates from the staff who work with him, I don’t really fear the looming future as much as my friends whose youngsters have autism and who worry that other people won’t be able to understand their child’s communication when they themselves get too old or infirm to care for them full time.

I suppose that what might happen, and the big unknown, has already happened for us and the reality is alright because the staff who work with my son are as lovely, thoughtful and caring as the teaching assistants who worked with him in his special school.

If I keep focused on what is good for my son, then I recognise that it is positive that he says that he is happy and that he likes the hospital and the people there. I clearly wouldn’t have chosen a stay in hospital to be a vehicle for gaining independence, but now that it has happened, I am grateful that my son has had the opportunity to self-advocate and explore who he is independently, and most of all to communicate his sense of self in a way that he chooses.

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