The COVID-19 virus has meant that most of us have lost our daily routines, our support networks, and the activities which helped us to keep positive each day. Many people all around the world are finding the isolation and loneliness of the lockdown increasingly difficult to manage and for parents and carers who have a child with Down Syndrome or any other disability, the risk is of feeling overwhelmed.
Parents and carers are now at home looking after their disabled children twenty four hours a day. Much of the support a parent or carer would have received from school and other vital services such as respite care, day centres, after school clubs have been placed on hold. The friends who used to pop round for a cuppa and a chat, no longer knock on the door and the practicalities of shopping and picking up prescriptions have become a nightmare for many.
For many parents and carers, this feels like an extremely challenging, stressful and lonely place to be. So often in everyday life without COVID-19, the mental health and emotional needs of parents and carers with disabled children are disregarded and overlooked, this situation for many hasn’t felt any different. Parents and carers of children with a disability are very skilled at juggling their caring roles with other priorities throughout the day, however feeling alone can cause them to carry a huge emotional weight inside which is so often invisible and not understood by others around them who may not have a child with a disability.
The lockdown is an extremely difficult time. One of the things which makes it so hard is that we can’t predict when everything will get back to ‘normal’. This unpredictability can leave us feeling unsafe, constantly on edge and helpless. The lockdown is something which wasn’t planned and is a big shock to us and to our children. The change in routine can be difficult to come to terms with. Not having the choice of doing the things we used to be able to do, can leave us and our children experiencing grief, feeling stuck and trapped in an unfamiliar place.
What can parents and carers do to help their mental health at this time? One thing we can try to do for ourselves is to create a sense of safety and some control within our home environment. One way of doing this is with structure. Structure can help us feel more in control and empowered. Putting structure into your life might be deciding that each day at 2 pm you will all watch a certain programme or make lunch at a certain time. This gives your mind some “definites” to focus upon. Always give yourself some flexibility with the structures you put in place for yourself. If the day doesn’t go to plan, please don’t beat yourself up. We all have days which are much harder than others. If something doesn’t work out the way you thought it would, have a ‘back-up’ list of other things you can do. When you’re feeling okay, you can even write yourself a list of things to do when you’re feeling down, stressed, exhausted or worried. You can look at this list when you feel that you’re struggling with your mental health.
Connecting with others during the day is also a vital part of the day. Parents and carers of disabled children have often experienced some trauma, this could be birth trauma or trauma when their child has been very poorly in hospital. These traumas can have a lasting impact upon the parents and carers. So often when we experience trauma, we go through it alone, there is no one there to comfort us, no one there to hear our voice, no one there to see and witness how we’re feeling. The lockdown during COVID-19 can remind us all of this. Connections with others are therefore very important. Friends, family and others can give us reassurance. They let us know that we are valued for who we are and give us hope when we’re feeling lost. Talking with others keeps us anchored within the wider world outside of our homes and decreases isolation and loneliness. So often, families with children with a disability experience isolation, loneliness and even ostracization. It’s really important that through this difficult time we find supportive and understanding people to link up with. Find the people who you ‘click’ with. If you find yourself alone and struggling, reach out for support.
If you find being at home overwhelming and difficult to cope with, it’s okay to take your time and to take the day in manageable bits. For example: break the morning down into tasks such as 8.30 am we get up, 9.15 am we will eat breakfast. Give yourself a plan which you can follow, even if it only has two things on it. If you feel able to do more, you can try adding something to your plan the next day. Be careful not to overwhelm yourself and always congratulate yourself for achieving anything on your plan.
One of the things which can cause a lot of anxiety and feelings of being unsafe in the world at the moment is watching the news. It’s important that you are able to find some information about the COVID-19 situation so that you feel you have some understanding of it, however, listening to the news a lot may sometimes trigger a sense of feeling on edge and feeling scared. Do what you feel is right for you. Some people have chosen to not watch the news at all and some people only watch at certain times of the day. Whatever you choose to do is absolutely fine. It’s good to look after our mental health and to try and keep ourselves feeling as safe and happy as is possible during this time.
Another thing which can help us a great deal during times of stress is allowing ourselves to be creative. For example: You used to go to a yoga class every week and you miss it. It might be that you can still practise yoga at the same time each week by following videos on YouTube? If you enjoyed baking, it might be nice to use your baking to connect with others by forming a baking group online?
We’re very aware that being a parent or a carer for a child with a disability is a full time job and sometimes, it can be really hard to find any time for ourselves at all. Sometimes we may find it too difficult to put structure into our lives or find it too difficult to connect with others especially if we’re up during the night. We may feel spaced out, disconnected from our body, panicky, anxious, constantly alert or on edge. If you find that you’re constantly feeling like this, it’s important to reach out for some support so that you’re not going through this alone. You can always contact StartToTalk.
We hope that this article has given you a few ideas about how to look after your mental health during this very challenging time.
StartToTalk is run by counsellors, therapists and people trained in counselling skills. They recognise that there is a huge need for emotional support and that counselling waiting lists can be very long and leave people in a limbo with no one to talk to about their problems. By offering emotional support sessions and running groups, we aim to help people who do not have access to the support they would like.
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