A major new study published by Scope last week revealed that many parents of disabled children are suffering from extreme stress and isolation. As many as 80 per cent said they felt frustrated, stressed and exhausted.
Talking to other parents in the same position, can not only provide much-needed emotional support, it can be a really useful way of picking up practical advice and ideas, which is why we have created the tips feature in our new online community.
Below are a selection of stress-busting ideas we’ve picked out from the tips. We’d love to hear yours too, so please add them to the comments box below!
It’s ok to ask for help
Friends and family are often very happy to help, but don’t know unless you tell them. Draw up a list of suggestions you can use to ask friends and family for help, for example school runs, baking birthday cakes, mowing the lawn, helping siblings with homework, being on an emergency rota for overnight hospital stays.
Choose your battles
I have learned the hard way to choose my battles carefully. I have to decide which battles really are important for me to win and which I can leave. The important ones involve safety and health. Some others you have to let slip for your own sanity!
Keep your sense of humour
My husband and I play a game where we place bets with each other which of our three disabled children will wake/ kick off etc. at what times. The ‘winner’ gets a treat from the other partner. Sounds silly, but making light of intensely stressful situations really does help us cope.
Do a happiness audit
Think about what gives you happy feelings and do it as often as possible – whether it’s singing, dancing, laughing, sex or chocolate. Create a ‘Prescription for change’ for yourself, listing the things you need twice a day and twice a week. Then stick it on your fridge.
A positive note
When you have a disabled child, filling in forms can be very depressing as you focus entirely on the negative. So I write on a separate sheet of paper one good point for every negative. I laminate this and put on the fridge so that when things are tough I can read it and remind myself of the fab things about my three disabled children.
Get all the help you can
I would suggest parents try every bit of help on offer – Portage, Child Development Centres, local libraries, health visitor, support groups, etc. It’s much easier to opt out than to try and opt in later, when your child is older. Referral for specialist services (e.g. portage) can take ages and is worth getting sorted out as early as possible.
Be honest about your limits
Therapists mean well when they give you lots of exercises to do with your child, but sometimes, it’s impossible to keep up with them and still have time to do stuff like eat, sleep and breathe. Be open with the therapists if you feel overwhelmed, or need more ideas for exercises that can be an organic part of your day (say, bicycling a tot’s legs as you change her nappy).
Share the load
Let your partner help when they can. Yes, they may do things differently, but that isn’t necessarily a bad thing.
Face to face
Talking to other parents who are going through the same thing as you is always helpful. Face 2 Face is a one to one parent befriending service, run by Scope, for parents and family of disabled children.
Get plenty of exercise
Exercise is great for your overall mood. I’ve taken up weights, because my son is large and I worry that one day I won’t be able to manage him. Being fit has given me huge confidence in how I manage my son, which in turn has improved his behaviour.
Schedule time for yourself
Try to make a little quality time for yourself each day even if this means leaving the person you care for in front of their favourite DVD or TV program for half an hour. It won’t do them any harm! If you can, try and take half a day a week off – book a babysitter, book your child into a crèche/playscheme, play date, or family – give yourself that time to re-charge.
Organise your home life
Buy two of non-perishable items like washing up liquid, so you always have one in reserve. Have a whiteboard in the kitchen to write on when things run out. Plan your meals for the week – even think about having Tuesday as curry night, Wednesday pasta, Friday fish, etc. to save time thinking. If you can afford to, get a cleaner.
Get a good night’s sleep
Sleep is very important. If you are tired, you will feel even more stressed. Try taking it in turns to get up at night so one person always has a full night’s sleep.
Yoga for you
Take up Yoga to stop muscle injuries especially if you have to do lots of lifting and carrying.
Friends and hobbies
Friends and hobbies are enormously important because they take you out of your role as a carer for a short while. I try and mix with people who aren’t carers too, so I get to focus on something else for a bit.
I started running after the birth of my disabled daughter eight years ago. It’s my time out – time for me to de-stress, clear my head & take out my frustration on the streets. I come back a happier and calmer person, ready to deal with the real world again. I think we all need time out for ourselves.
Have you got a stress-busting tip to share? If so, let us know in the comments below.
Explore our other tips.