Caring for a child with an illness or disability can be stressful and hard. While it’s important to help your child manage their feelings, it’s also okay for parents and carers to talk about how they feel.

You may feel: 

• overwhelmed or anxious
• worried that you are not doing enough
• like you want to blame someone
• jumpy or on edge
• extra protective of family
• like avoiding the situation
• lonely or helpless. 

These feelings are normal. It is important to talk about and work through these feelings in a safe and comfortable space with a person you trust, like:

• a friend, partner or family member
• your local doctor
• a psychologist.

Working through difficult feelings is part of good self-care.

A strong support network can:

• help families feel less alone
• connect you with helpful resources and support services
• guide you through changes.

Your support network might include:

• family and friends
• your local doctor
• a psychologist
• hospital support services
• not-for-profit organisations
• local or online support groups

Some families find parent support groups helpful. Try to use groups that are recommended by your child’s treatment team or hospital. Avoid large, unmoderated or anonymous social media groups, as the advice may not be reliable or supportive.

Speak to your local doctor about Medicare plans that can give you access to subsidised mental health support.

Ask your GP about a mental health plan to access subsidised psychology support.

Self-care looks different for everyone. For some, it might be a massage or watching a favourite show. For others, it could be a hot shower or a walk through the shops.

Think about what brings you calm or a sense of peace during difficult times.

Research shows that parents and carers who make time for themselves have higher levels of resilience and are better equipped to adapt and cope with difficult life changes. 

Simple, daily self-care ideas can include:

• making sure you have a shower each day
• enjoying a cup of tea or coffee without distractions, like your phone
• watching an episode of a favourite show without distractions (try to resist the urge to binge-watch)
• doing simple breathing exercises, like breathing in for 4 counts, and out for 4 counts
• listening to a podcast
• message or call a friend about something unrelated to your child’s health or disability
• share a funny meme or video with a friend
• plan a coffee catch-up or a walk.

If your child is in hospital, let the nurse or team know if you need to take a quick walk or get some fresh air. They are there to support you, too.

It can be hard and expensive to plan and prepare healthy, filling meals when you’re busy or tired.

Keep low-effort, easy to eat snacks on hand, like:

• fruit that has its own wrapper - apples, oranges, bananas
• veggie sticks with dip
• muesli bars
• popcorn
• hard-boiled eggs
• nuts or trail mix

Batch-cooking and freezing meals can help when time is short and gives others a way to help, too.

Limit caffeine like soft drinks, coffee and tea in the six hours before sleep. Keep a large water bottle nearby to stay hydrated throughout the day.

Getting enough sleep can be tricky, especially if your child is in hospital.

Try simple sleep hygiene strategies like: 

• being consistent with the time you get into bed and the time you wake up, if possible
• turning off screens an hour before you go to sleep
• using earplugs, sleep masks or blackout curtains
• add some comforts at home, like soft sheets, cosy pyjamas or using some essential oils for aromatherapy  
• using white noise, sleep sounds or podcasts to help you relax and fall asleep. 

It can be difficult to keep up with exercise during periods of stress, even if it is something you enjoy.

Low-impact, incidental or everyday movement can help lower stress levels and improve mental health. 

Try things like: 

• taking the stairs instead of the lift
• parking slightly further away from the entry and walking
• walk on a treadmill while listening to a podcast or streaming your favourite show
• go for a walk outside while listening to music or a podcast
• go for a wander through a new park, beach, or shopping centre. 

Children with long-term illnesses and disabilities have many strengths and abilities. 

There will be tough days, but there will also be joy and progress. Celebrate the wins.

Talk with your child’s treatment team about good news, milestones and positive progress in treatment or recovery. 

Celebrate:

• theme or dress-up days at school and in hospital
• birthdays and holidays
• special family moments
• mother’s, father’s, children's and grandparent's day
• cultural events or holidays.

And don’t forget to celebrate yourself. Parents and carers do an amazing job of supporting children and making sure they are getting the best care possible. 

Having a good understanding of your child's condition or disability can help you reduce stress and anxiety and give a sense of control and expectation. 

To make sure you are getting clear, reliable and trustworthy health information:

• keep in regular contact with your child’s treatment team
• use hospital services like social work and child life therapy
• visit the Sydney Children’s Hospital Network website to read factsheets and information on the SCHN Kids Health Hub
• ask questions - there’s no such thing as a silly one.

Being a good advocate for you and your child can look like:

• telling staff about your child’s strengths, skills, and personality, along with what makes them feel comfortable and safe
• asking staff to show and explain different day-to-day procedures before they happen
• asking staff to involve you in things like feeding, bathing, and keeping your child engaged throughout appointments or hospital stays
• making long-term hospital stays feel more like home with photos, simple decorations or toys.

When you model self-care and advocacy, you are also teaching your child how to look after their own health and wellbeing.