Just Come and See Me

Tuesday 30th March, 2021

By Miri Lawrence

I am writing this blog as we finally have a ‘roadmap’ to lead us out of lockdown. I anticipated the government announcement with only one thing in my mind: ‘when can I see my son?’  Similarly, my immediate response to the first lockdown was despair as I worried about how my son would cope without his regular visits to see his family. He has autism. Josh lives in his own house, with live in carers. He is twenty-eight years old, but has the mental age of a young child. Josh has lived in his house for five years. However, his care team changed a few months before the first lockdown. Prior to that time, he lived at his house but worked on a farm and was part of a farming community. He lost those connections when he returned from hospital and a new team took over his care.

Not long before the first lockdown, Josh was adapting to his new care team. He was traumatised from being in hospital, underweight, very depressed and had lost a lot of his language skills. A fantastic new team devoted themselves to his care, but he still had a long way to go. He lives a three hour car journey from me and until now I have seen him every other fortnight. 

A key challenge for Josh and many others with a diagnosis of autism is change and unpredictability. Josh writes on a calendar when he will see me, and calls every day to check my next visit. In addition to the restriction of visits, other focal points of his week disappeared as trips to the swimming pool and visits to his friends, the gym, pub and café all stopped. The structure and routine of his life, so important to those with a diagnosis of autism, which included exercise and time with family and friends, came to an abrupt halt. There was no time to prepare him for this eventuality, again an important feature of helping those with learning difficulties and autism to cope with transitions. The temporary easing of lockdown only added to life’s unpredictability and there were other challenges. It was decided that even when the gyms reopened it would be too difficult for Josh to observe the new social distancing rules. Other places became inhospitable, as shoppers became understandably anxious at Josh’s presence. Creative measures were found by his family, carers and local community. The local café delivered sandwiches to his door, his local shop provided a lanyard also worn by the staff and welcomed him into the shop. We created a gym in a large shed in his garden. But he remained extremely isolated, living alone with different carers. Once COVID-19 infiltrated his care provision, his regular carers were replaced with new faces who stayed in his home.  He expressed his frustrations in his daily phone calls, explaining that he was bored, he missed his family, hated his home and wanted to live with us. One constant are his evening phone calls to me which begin at 6pm. During every call in the last few months he says to me ‘just come and see me mum, please, just come and see me’. On other occasions he phones me in tears explaining ‘I’m a bit sad, Mum, because I’m missing you’. Now, rather than being satisfied with writing in his own calendar, Josh has requested that I come and write on his calendar, which I interpret as a tangible sign within his home, proof that I will honour that commitment.

I understand the requirements for lockdown, I understand that his care team has a range of adults, some of whom are shielding, which makes social distancing non-negotiable. Josh doesn’t. The hardest aspect to explain was the tier system when I moved into tier 4 and he remained in tier 2. This enabled him to meet his father who lives close by, but I was inexplicably absent and ‘just come and see me mum’ felt like an accusation of abandonment.  This is the only time when geography has prevented me from seeing him. Previously, if he was ill or distressed, I could just get in my car and rescue him. When he was in hospital the previous year I relocated so that I was nearby and was allowed to spend most days at the hospital with him. Lockdown was a real turning point in my parental ability to appear whenever there was a crisis.

In many ways we are lucky. For many families, with relatives with disabilities or learning difficulties, life has been harder. For those with relatives living at home, support stopped overnight. Those accessing day facilities lost respite, additional support and vital social connections. Parents have had to give up their jobs to provide the support that is no longer available. We are fortunate that Josh’s daily support is still in place, but I am no longer part of it. For all these families, there has been a loss of support networks and companionship. According to Sense (www.sense.org.uk) and the National Autistic Society (www.nas.org.uk) loneliness has disproportionately affected the disabled during the pandemic. Many also have limited access or use of digital technology to connect with people. 

Home is a complex and ambiguous concept (Blunt and Dowling, (Blunt and Dowling, 2006; Young, 1997).). Paid home-care blurs the distinctions between public and private and domestic space can become institutionalised for those in the care system (Milligan, 2003; Varley, 2008). ). For Josh, home will always be with his parents. To a certain extent, living with carers is the next stage from school or college, but it is not always regarded as home to those with learning disabilities. Certainly Josh considers home to be with his parents..  Sadly, for a range of reasons, including Josh’s challenging behaviour when anxious, he cannot live with us. Although he has his own home, he talks frequently of a time when we will all live together again. Over the past year, home has become a place of confinement for him, a sentence without a release date. As caregivers create work spaces within his home, moving in and out as they change shifts, and new caregivers cover for those affected by COVID-19,  home can become a place of ‘transience and movement’ (Milligan, 2003, p.262) rather than stability.

For those with learning difficulties and disabilities, the challenges of lockdown can be huge. A number of campaigns have addressed these, with a particular focus on isolation, loneliness and making information accessible in a format appropriate for a range of needs, including visual methods. The difficulties experienced by those with disabilities are framed in negative terms. Launched their 'Left out of Life' campaign and the National Autistic Society report entitled 'Left Stranded' talks of the forgotten families affected by autism. This terminology mirrors Josh’s ‘just come and see me’ mantra: forgotten, left out of life and stranded. As a result, those with learning difficulties are at risk of mental health problems, and many exhibit their unhappiness and confusion through challenging behaviours. This in turn adds stress to families, and the NAS report evidences parents who suffered mental health problems as a result.

For parents, the desire to protect our children can feel impossible when an outside force takes our choices and presence away. I fear, for Josh, that his already ambivalent relationship with his home has become increasingly negative over the past year and I wonder how many others are craving an answer as to when their families will just come and see them.