We know from research that parents of children with a learning disability can be twice as likely to experience high stress levels as do other parents. High levels of stress can have a negative impact on your well-being.
In this article we look at some ways that you can look after your own well-being. Not all of these will work for everyone, and there could be some trial and error involved while you find what works best for you. This article is taken from A Parent’s Guide: Improving the well-being of young children with learning disabilities.
We know that the simplest things, like eating healthily, getting enough rest, and exercising regularly can be the most difficult when caring for a child with a learning disability. But it is important to do these things to look after yourself. Most parents we spoke to said that sleep was the most difficult thing for them to do. Addressing your child’s sleep issues will help you get a better night’s sleep. You might need some help from others when you try to deal with your child’s sleep difficulties. Cerebra have a team of sleep practitioners who can offer help and advice about children’s sleep problems.
You could try to make some small changes that can benefit your own and your child’s well-being. Parents and practitioners advised that some examples of small changes are:
- Putting on some music that you enjoy and sing or dance to it
- Thinking about short journeys that you can walk, instead of driving
- Thinking back to the things that you most enjoyed before you had children (e.g., playing sports, going out with friends, reading), and trying to think of a creative way to fit some of them back into your life.
- Trying something new that you’ve wanted to do for a while. The parents we spoke to said that this could be a good way to meet new people as well.
- Find someone who can support you to have short and regular breaks to do something you enjoy (e.g., having a quiet cup of tea, going for a walk.
It might help to talk to other parents who are going through a similar experience to you. You could join a support group for parents of children with disabilities. Some of the parents we spoke to said that they were members of online support groups and parent groups on social media; they said that these were really good to get support from people who are similar to them.
We know from research that using mindfulness and meditation, can help to improve parental well-being. Mindfulness might also help us to make practical changes after practising it for some time as we are less likely to be reactive in stressful situations. There are courses available on mindfulness and these might help to get you started. Some of the parents we spoke to said that parents could use mindfulness or meditation apps on their phones, and this might be easier to do than going on a course.
Parents tell us that trying to take regular breaks from your caring responsibilities to look after your own health and well-being is also very important. You could ask family and friends to help out, or ask your Local Council for guidance about respite support. Parents we spoke to said that help is out there, and taking some time to find it can give you the time in future that you need to look after yourself. All parents said that time was the best resource when they are trying to look after themselves.
Trying to make time for yourself might feel impossible, especially when your child is young or has complex needs. But looking after yourself is not time out from caring for your child. It is an investment that supports you, your child, and your unique relationship.
Some parents that we spoke to said that even really short breaks can help them to look after themselves. This might be more manageable for some families.
We spoke to parents of children with a learning disability about some other ways that they look after their own well-being:
“I try to see a friend one evening a week, and get caught up with them. There are nights where I sit down and I am too tired, and don’t want to go, but it is worth it for that bit of sanity and get out and be with my friends and catch up.” A mother of a two and a half year old boy with Down’s syndrome
“I enjoy playing football, and that’s my own time a few nights a week if I’m not working. I find it hard to find time sometimes, because I work full-time.” A father of a three year old boy with a learning disability
“It’s not easy to fit everything in. We have to roll with it, and take time for ourselves whenever we can. We usually take time when we have dropped our daughter off at nursery to get a bite to eat, or spend some time with the other parents [of children with learning disabilities].” A mother of a three year old girl with a learning disability
‘A Parent’s Guide: Improving the well-being of young children with learning disabilities’ is a collaboration between the University of Warwick, Cerebra, Mencap, the Challenging Behaviour Foundation, and parents of children with learning disabilities.
The booklet has been created to help parents support the well-being of their young child with a learning disability (aged 0 to 5), but parents of older children may also find it useful.The guide contains helpful information on:
- Chapter 1: How to look after yourself (Parental well-being)
- Chapter 2: Organising family life
- Chapter 3: Spending time together
- Chapter 4: Activities to do with my child with a learning disability at home and outside
All your suggestions are really helpful. What I never see is help for families with older children. My sons both have Autism and while they were at school and in education their was support and respite. They are 19 and 21 now, and we seem to have been left to just get on with the rest of our lives. The 19 year old is able to volunteer for a local woodlands group, and has 5 hours respite one day a week. This works well for him and for us. The 21 year old is highly intelligent but will not leave the house and is unable to cope with any form of independent life at all. Because he will not engage there is no help for him or us. I have so many fears for the future of my sons. At the moment I attend a wellbeing group for carers and am shocked to realise that families in the same position as ours are not uncommon. I feel that we are a totally forgotten group who are struggling with their caring responsibilities while trying to get the benefits they are entitled to in a hostile environment that causes confusion and upset. I often feel that I will ‘crack under the strain’, but I have to struggle on for the sake of my sons, my 17 year old daughter, and my Husband.
Hi Jan, we’re glad you found the article helpful. Adult mental health services may well be a source of support to try, if you haven’t already. It may also be worth seeing your own GP for information on how they can support you so that you have all the tools you need to be able to support your family.