Testing times during coronavirus

Being the parent of a teenager with special educational needs and disability has been quite a journey during lockdown and as schools continue to remain closed to most children.

At the start of lockdown, we were not sure what we would learn from it or how it would affect us. In the first week, being at home with my daughter (I’ll call her D!) was easy because she had no home learning. I was lucky enough to be allowed to work from home, so I could work around her needs. As her school closed, the home learning started to come in every day. D would receive up to 10 to 12 emails a day, each from a different subject teacher or staff member. The school wanted pupils to keep to the school timetable, with the added pressure of submitting the work done each day.

Managing D’s home learning took up a lot of my time, and hers too, to such an extent that she had no time out and it was affecting her mental health and wellbeing. This was a very challenging time as I was also working from home. After the second week, the schoolwork became too much for her. She had meltdowns at the end of each day and it was difficult for me to manage them. I had to get in touch with the school, as the work was excessive and the expectation placed on pupils to do the work during this difficult time was enormous.

After three weeks of lockdown, it became impossible to balance D’s home learning, my work looking after the home, and her needs. I am not a teacher and I could not teach her the GCSE subjects without spending hours each day reading up on the subject before explaining it to her. I felt pressurised by the expectancy the school and the local authority had on parents to support their children, especially children with special educational needs. By the end of week three, I could not cope and it was taking a toll on my health and our relationship. D stopped seeing me as a Mum and saw me more as a teacher or her PA managing all the e-mails coming through from the school.

Something had to give. So I decided to drop the home learning, as I had to be a Mum first. I felt like I was a bad parent consumed with guilt, as most of the country was home educating their children. Staff would post videos to pupils to show how they were enjoying lockdown and how they too were home educating their own children. This angered me more. I felt they should be supporting D, who had no time to enjoy lockdown due to the volume of work given without support or online teaching.

By Easter, I became very ill with coronavirus symptoms and it became impossible for me to support D’s care needs. Even though I could hardly get out of bed most mornings, I woke up early each day to bleach all the surfaces and air the rooms before D woke up. I was scared that I would make her sick, as she is medically vulnerable and I was worried that she would be separated from me if she did become really ill. I stayed in separate rooms to her during the day and felt awful as I could not hug her, sit with her and that she had to spend time on her own.

I too was fearful about getting worse and ending up in hospital, as D would not be able to cope. We have no family who can support us and, with the lockdown, it was impossible to go anywhere for help if anything happened to any one of us. Although she did not say it, I know she thought I was going to die or be taken away from her. It took me a few weeks to recover. When I did, I tried to compensate for not being with D during my illness and making up for the time we had lost. I wanted her to know that I was fine and I was not going to leave her.

I do feel helpless, as I know I can’t protect D from the reality of life, but for now I just want to enjoy her and make up for having worried her. We still get on each other’s nerves and it has been hard, but we are safe and have learnt to appreciate things we took for granted. D has also learnt not to beat herself up about not getting schoolwork done on time. Instead, she does her best and although it takes her longer, it’s her own effort. She still needs reminders to take time out.

This journey has allowed me to appreciate D’s true potential and resilience. I have also come to realise that I will not always be there for her, or protect her from negative emotions, so I need to keep reminding her that it is OK to be scared or sad. I would rather she vocalise her upset or have meltdowns, so that we can talk about them – rather than suffer in silence. I have gone through a range of emotions such as anger, guilt, fear, upset and helplessness, but most importantly I have learnt to have gratitude for each day we spend together. There are other families going through much worse.

I have learnt that our mental health and wellbeing is a priority, so we need to support that. The next 12 months will be testing for us all too.

At the Anna Freud Centre, since the start of lockdown, we have been working with schools and colleges to help them to give the best possible support to pupils and their families. This includes creating free toolkits and online seminars for school staff. We urge parents and carers to encourage their own school to get in touch with us via Schools In Mind: schoolsinmind@annafreud.org. If you are a parent or carer looking for mental health support at this time, you can visit our website for advice.