Life can be exhausting and stressful. Sometimes it’s important to just focus on self-care, and to celebrate what you have achieved together.
On this page:
- You can’t do everything, all the time
- It’s a long journey – so look after yourself
- Take a breather and notice what is working
- Tell people when things are tough for you
- Reach out for the supports you need
Parenting any child can be a challenge at times, and parents and carers of children and young people with disabilities often experience additional pressures and expectations. The support system in schools is dependent on your active involvement. You might be managing and advocating for your child with multiple health and support services. Depending on their disability, many children and young people require a relatively high level of support, which is primarily provided by families. And many parents and carers are also balancing the needs of other children, work, relationships and other caring responsibilities.
You can’t do everything, all the time
A key aspect of self-care is to conserve your energy for what matters most. You have the right to raise a concern about any aspect of your child’s education. But sometimes there’s just too many pressures on families, and it’s too much to add in the work and stress of raising an(other) issue with school.
It’s important to try not to judge yourself under those circumstances. Anything you can do to support and advocate for your child has value. Your child will be in school for many years. It’s very likely that you will have a chance to tackle the issue at another time, when you have more energy or support. Many parents and carers refer to this as ‘picking your battles’.
- Read more in Raising a concern with school.
It’s a long journey – so look after yourself
Self-care is crucial. Few of us can be good advocates for our children if we are burned out and exhausted. It can be very difficult for parents and carers who put so much energy into the needs of others to stop for a moment, and to focus on their own needs, and on what they’ve achieved. But doing so can benefit everyone in the family:
“You are the only person who is truly going to advocate for your child, and it takes energy. As a carer, sometimes the energy just isn’t there, because you’re so busy dealing with everyday life. And the other thing is, a lot of the time there’s more than just that one child. And the other children have got needs too.
So it can make it very challenging. And you can get a little bit skewiff on what the real agenda or focus is. So you need to allow yourself some time too. That’s nothing to do with the school. Its just about you. And celebrate yourself. I’m still working on that too – that’s a work in progress.” – Mel
Take a breather and notice what is working
When advocating for your child becomes very stressful, it might help to focus on what is working. And to just try to enjoy family life, and appreciate what you have achieved together.
“If things aren’t going well at school, [It helps to] notice where we are doing really well as a family. Which is often little things – like we have breakfast, or we didn’t run out of milk today! It could be really simple things that help Patrick feel settled and happy. Its really important to notice the happy things, and the good things, that are part of family life, and part of his experience of his life.
Sometimes its important to take a little bit of a breather from thinking about life in medical terms, and pushing and pushing for change for your child. To say, ‘Hey, we’ve achieved some great things, look what we’ve created for him, through consultation with Patrick as well. To say what’s important to you right now? To see that you’ve actually hit the top of the mountain, for the moment, and that actually you’re in a good place. It takes having a critical and an analytical view sometimes, to achieve results.
There also needs to be times of just enjoying family life, and just acknowledging and being with your child, and accepting them for who they are. Because overly focussing on deficits can really impact self-esteem. I’ve seen that in my son, and I’ve seen that I’ve needed to pull back from ‘fixing’. Because he’s not a broken person. He’s actually incredibly talented and capable as he is.” – Tania
Tell people when things are tough for you
Sometimes its difficult for those who are not parents or carers of someone with a disability like your child’s to understand what kind of pressures you might be under. Even school staff might have little understanding of what it is like to care for your child overnight, for example. Sharing that information with them might help them to understand when you need to prioritise, and be shown a little more consideration:
“It’s about respecting the fact that sometimes people who aren’t living your life don’t understand it. They might have a small grasp, a bit of an idea. But they’re not getting up 2 or 3 times a night. They’re not exhausted, they’re not pureeing the food every day. They’re not driving three hours for three appointments and coming back. They don’t get it. And so you’ve also got to have that respect of – they don’t understand it, but then you’ve still got a rights issue of, ‘Hey, go easy on me,’ and let them know why they need to go easy on you.
There’s time that people expect so much from parents. ‘How have you gone with putting this program on the home computer, and doing this and this with him twice a day?’ And you just think, ‘God, I’m having trouble just getting out of bed! Let alone getting to all that!’
So I think it’s really important to say what home life is like. Some people don’t want to share it, but sometimes it’s important to describe what’s happening at home, because they don’t know what’s going on, on the other side of the fence. And if they did know, maybe they would go easier on you.” – Rhonda
Reach out for the supports you need
You need to feel supported, in order to support and advocate for your child. Different people need different things in order to feel supported, to reduce or manage their stress, and to make caring and advocating for their children sustainable in the long term.
For many parents and carers, respite care is essential, so they can have a break to see friend, or do something for themselves such as exercise.
Some parents and carers do not feel comfortable with respite – for them, assistance in the home so they can focus on their child might be a better option. Make sure you explore all the options for respite, support and care, by talking with the Department of Health and Human Services and your local Council. The options for support and respite are likely to change in the near future as the NDIS rolls out. Visit this website and stay in touch with ACD for updates.
Many parents and carers benefit from specific support for their own emotional wellbeing or mental health, such as a counsellor, or from self-care activities such as yoga or meditation. You can get subsidies from Medicare for carer counselling, and there are also mindfulness/meditation courses aimed at helping carers manage stress and feel calmer in their everyday life.
- Visit our Through the Maze resource for information about carer supports.
Some parents and carers benefit from attending groups or activities and making connections with families of children and young people with disabilities:
“James: Daisy’s been going to riding for the disabled for at least 10 years now, maybe more. Daisy’s really enjoyed riding right from the beginning, and got a lot out of it. The people who are in our group, we’ve been with them for a really long time now, and they’ve become like our de facto parent support group. Sara was saying we’ve never really been into formal support groups much – its just not been our bag. But these bunch have become like a bunch of just really good friends, where we can just let our hair down.
And we know each other’s kids really really well, and its just so accepting and we have so much fun together, and all of our kids’ different eccentricities and weirdnesses are embraced. And we can just get together and have a good time, and a good life. It’s a really important thing. You need to have something where you can speak to other people about your kids, because [there can be] lots of different grief and turmoil. But they’re amazing as well, and something like this really helps to celebrate that.” – James
Often such groups can provide both a social outlet, and a sense that other people in the community share and understand the pressures you might be experiencing: