Parenting a child with a disability can be uniquely challenging, as it incorporates common childcare difficulties as well as a plethora of additional responsibilities, anxieties and rewards1 2. It can ask for some extra resilience, perseverance and resourcefulness.
Research displays that when a child is born with a disability many parents, like yourself, feel completely unprepared for the long-term caregiving duties, meaning they are constantly adapting and changing to cope with the arising challenges2.
As a parent, we understand that you are there to support your child no matter what. This requires time, attention and development of new and diverse skills to support your child to be as healthy as possible and enjoy life2.
As a result, your day may be is significantly occupied by additional responsibilities such as appointments with specialists, managing some challenging behaviours, providing physical assistance for your child, using (at times confusing) assistive technology and navigating complicated service systems1 2.
You are certainly not alone. The most recent Australian Bureau of Statistics (ABS) findings regarding disability, ageing and carers in Australia5 (published in 2019) indicate that in 2018, 357,500 or 7.7% of children under 15 and 9.3% aged 15-24 were reported as having disability in Australia. This proportion of children with a disability has risen from 6.9% in 2012.
A significant population of parents navigate the discussed challenges. In 2018, there were 136,000 primary caregivers who cared for their own child aged 0 to 14 years with a profound or severe communication, self-care and/or mobility limitation. One-third of these parents felt that they had no other choice in taking on the primary caregiver role of their child. In regard to people with Autism Spectrum Disorder, the ABS report displays how the bulk of care in the areas of self-care, mobility and communication was provided by relatives and friends, not paid employees5.
Research shows that these parents spend more year’s caregiving for their child, compared to other parents3. More so, a report by the University of Leeds highlighted that parent caregivers are twice as likely to care for more than 100 hours per week compared to other caregivers4. On average in Australia, more time is spent caring for a child with care needs than for a parent or partner with care needs5.
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Why Should Self-Care be a Priority?
These additional responsibilities, balanced between work and home duties, may cause you to neglect engaging in leisure activities, look after your own mental and physical health and participate in paid work or family life, resulting in reduced health and wellbeing2. Nearly three in five parent primary caregivers reported that they need an improvement or more support to assist them in their caring role5.
For parents of children with a disability, experiencing parenting stress, mental health difficulties and health issues are connected and occur often6. In a recent Australian study, around twice as many parents with a child/ren with disability had moderate to high psychological stress compared to parents without a child with disability7. Furthermore, mothers reported poorer physical health and lower access to emotional support7. This shows how long-term stress and lack of support can put you at risk of health issues.
Time and energy is completely finite. It is easy to neglect your own needs to put this time and energy into your child who you love and adore. Furthermore, as you proactively source information and advocate for your child, you may encounter frustrating limitations which strengthen feelings of isolation or exclusion and emotions such as grief and anger. These experiences can become overwhelming if you do not have adequate support.
Looking after your physical and mental wellbeing will help you to better care for your child. That’s why we’re here to help. Just as your pride and joys flourish through support, we want you to feel the same level of understanding and support from us. When seeking support for your child, seeking support for yourself when it comes to self-care should go hand in hand.
What is Self-Care?
Self-care isn’t selfish. Self-care defined as “is the ability to care for oneself through awareness, self-control, and self-reliance in order to… promote optimal health and well-being”8. You can do everything for your child, but this may be at the expense of your own wellbeing. Therefore, in order for you to best care for your child, you need to be the best version of yourself. Practicing self-care, and looking after yourself is one way you can achieve this. Follow our key tips to make self-care a priority!
Parental Self-Care Tips
Here are some ways to implement self-care into your everyday life:
Treat Yourself!
Remember, it is okay to take a break to recharge to look after yourself. Find the activity that you enjoy, the one that fills your cup, and spend some time doing it. It is a great way to relax and unwind and is a productive way to take a break. This could include completing an arts and craft activity, going for a coffee with some friends, or be as simple as going for a walk. Don’t be afraid to treat yourself by setting aside morning quite time or having your favourite snack! This could also mean getting involved in your community by taking a class or joining a book club. Fill your cup first so that you have something to pour out into your child’s.
It is okay to do something for yourself. Find the activity which feels your cup!
Fight the Mum Guilt
Mum guilt is the common creeping feeling, or worry, that you aren’t doing enough for your child and you aren’t a good enough mum, especially when taking time for yourself11. Mum guilt is a feeling of inadequacy. An important part of practicing self-care is accepting that these feelings are normal and finding strategies to overcome them. Taking a few deep breaths, identifying the source, showing some compassion, challenging negative beliefs and surrounding yourself with supportive people are some simple strategies to overcome these feelings! These feelings of mum guilt can cloud your parental judgment and hinder you from connecting with your child and yourself, taking control is key.
Meditation
Mediation is a useful tool in your self-care toolbox. It can help you to slow down during your busy life, be present in the moment and let go of your struggles. This can be as little as putting aside five to ten minutes per day. Research has found that parents who experience mindfulness and meditation had improved psychological well-being, and they were more accepting of their children9. Furthermore, a recent study conducted by Harvard University shares that meditation has numerous physiological benefits10.
A quick exercise which you can implement into your everyday can be the 4-7-8 breathing exercise, which involves breathing in while counting to four, holding your breath to the count of seven, and exhaling to the count of eight. For more suggestions of mediation exercises, visit this positive psychology website:
https://positivepsychology.com/meditation-exercises-activities/
Part of being human is letting go of unproductive thoughts and regrets, and accepting life for what it is today. As a parent of a child with a disability, we understand that you may face additional pressures and finding ways to slow down and relax is key to giving yourself a break.
There are multiple mobile applications available to support you during this journey including:
Headspace is a user-friendly app which has hundreds of evidence-informed guided mediation activities supporting you to promote mindfulness, sleep, less stress and wellbeing in your everyday life.
https://www.headspace.com/headspace-meditation-app
Ten Percent Happier is great for beginners in the field of meditation, and provides simple guided mediation activities and shorter time options which can extend over time and experience levels.
https://www.tenpercent.com/
To promote sleep through mediation and relaxation, calm assists using soothing background music and concise mediations.
There are also many other apps which you can utilise during your meditation journeys, search for them using your devices’ app store!
Workout
You can look after your child best when YOU are healthy yourself! Taking aside half an hour every few days to workout is a fun and easy way to implement self-care, whilst providing a plethora of health benefits. Your workout could include going out for a walk or run, or going to the gym. If leaving your home is difficult, consider trying a YouTube home workout or yoga session as an alternative. Uniting a workout and mediation as part of your weekly routine is a great way to balance taking care of both your physical and mental health.
Share Your Troubles
Talking to someone about your troubles can be a way to relieve stress and reduce your load. This can be to your family, friends or a professional therapist, who can provide a space for you to manage your emotions.
Celebrate your child’s progress
As a parent you are crucial in your child’s development. You deserve some congratulations when your child reaches their milestones!
Remind yourself during these times that you are doing a fantastic job. Celebrate even the little things by going out for a family dinner, baking your favourite treat or going for a simple outing in the park.
Here are some ways to lighten your schedule and enable you to have some time to yourself:
Home services
Seek the support of home services to lighten your burden of domestic chores and free up some time for yourself.
Disability support workers
Hire a disability support worker to assist you in supporting you child. Your NDIS plan should cover the cost of hiring.
Take some time off
Some parents of children with disabilities may avoid taking time off because they feel pressured to “do it all on their own”. You may feel guilty about needing a break. However, giving yourself and your child time to be supported by other caregivers can offer you both a positive “time out” from each other and can help hit the reset button.
Feel free to ask for help from your trusted family members or friends to look after your child for an hour or two while you take some time for yourself. You could also consider utilising formal respite services.
Use this spare time to relax a little and do something you enjoy!
Stay tuned in this article to discover services that can support you during this journey.
Parental Support Group Recommendations
You may be facing challenges that your friends and family are not able to relate to.
Joining a support group can give you the opportunity to share your experiences with other parents who can relate and understand, without the judgement12 13 14. This promotes healing, learning and connection to ultimately builds a stronger community for yourself and your family.
Check out these local support groups to experience this first-hand!
We Care Parent Support Workshops
- Evidenced-based program to support you during the early days of diagnosis and network with families of children with disabilities.
- Topics covered include understanding diagnosis and symptoms, developmental milestones of children, play ideas through early childhood years and setting NDIS goals.
https://wecareworkshop.com.au/
Association for Children with Disability
- Enable families to connect, learn new skills and obtain current information through facilitation by parents of children with disability.
- Topics include support for families, advocating for your child at school, preparing for your child’s NDIS Plan Review, and teens and beyond.
- Recognised by the Victoria State Government.
- Available throughout Victoria.
https://www.acd.org.au/workshops-and-peer-support/
MyTime
- Members discuss their issues.
- Connect with the nearest peer support group.
https://www.mytime.net.au/groups/
Strengthening Parent Support Program (SPSP)
- Building support networks with other families in their local areas.
- Provides families with information on services available and how to ensure their child’s goals and needs are met.
https://services.dhhs.vic.gov.au/strengthening-parent-support-program
Now and Next Program
- Program runs by Plumtree and focuses on goal setting for child, family and/or self.
- Implemented by trained and experienced facilitators who are parents/caregivers of children with disabilities.
https://plumtree.org.au/plumtree-community/now-next/
Services to Support Parental Self-Care
It is natural to feel lost or alone at times. However, always remember that you are never alone. Support is always around, from your family, friends, practitioners and organisations like us, at Posity. Furthermore, there are services below who can support you to practice self-care.
Healthy Mothers Healthy Families (HMHF)
- A program all about supporting, empowering and encouraging mothers of children with a disability to foster a healthy lifestyle that incorporates self-care, health and wellbeing.
- Research-based program with over 1500 mothers contributing to its development and evaluation.
- Workshops and website provides mothers with information, research findings and the shared wisdom of other mothers to empower mothers to care for their own health and manage their specific life circumstances.
https://healthymothers-healthyfamilies.com/about
Association for Children with Disability
- Support Line.
- Free of charge counselling support for families Monday-Friday (9am-5pm), after hours available at separate hotline (8am-12am, all days).
https://www.acd.org.au/support-line/
MyTime
- “Take care of yourself” session (time-out for parents).
- Children will be taken care by play helpers who keep children engaged with activities (e.g. singing, drawing) whilst parents get some time to unwind.
https://www.mytime.net.au/why-mytime/
Carer Gateway
- Platform of resources and services for caregivers.
- Resources include advice regarding carer role and self-care, information on carer support and respite, financial help and carer forums.
- Services include phone counselling, online self-guided carer coaching sessions, and caregiver skills courses.
https://www.carergateway.gov.au/
Conclusion
Self-care looks different for everyone. Some people love being surrounded by social connections, whereas others prefer alone time. So how do you find out what works for you?
Begin by asking yourself these questions:
When I feel overwhelmed, what’s the first thing I want to do?
When do I feel my best?
What makes me smile?
What do I want to do that I never get to do?
How do I want to feel?
So, as you face the busy week ahead, I plead with you to take some time to yourself. Consider yourself for once, send yourself some love and connect with the person you really are. Self-care is the key to improving your wellbeing. By taking better care of yourself, you can take better care of your child. Give yourself the permission, and don’t put it off for tomorrow. Start today.
References
1Bourke-Taylor, H., Howie, L., & Law, M. (2009). Impact of caring for a school-aged child with a disability: Understanding mothers’ perspectives. Australian Occupational Therapy Journal, 57(2), 127–136. https://doi.org/10.1111/j.1440-1630.2009.00817.x
2Bhopti, A., Brown, T., & Lentin, P. (2022). Does family quality of life get better as the years go by? A comparative mixed‐methods study between early years and school‐aged children with disability in Australia. Journal of Policy and Practice in Intellectual Disabilities, 1-17. https://doi.org/10.1111/jppi.12433
3Villeneuve, M., Chatenoud, C., Hutchinson, N. L., Minnes, P., Perry, A., Dionne, C., Frankel, E. B., Isaacs, B., Loh, A., Versnel, J., & Weiss, J. (2013). The experience of parents as their children with developmental disabilities transition from early intervention to kindergarten. Canadian Journal of Education, 36(1), 4–43. https://eric.ed.gov/?id=EJ1002306
4Buckner, L. & Yeandle, S. (2017). Caring more than most. University of Leeds.
5Australian Bureau of Statistics. (2021). Disability, ageing and carers, Australia: Summary of findings, 2018. Australian Bureau of Statistics. https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release#methodology
6Masefield, S. C., Prady, S. L., Sheldon, T. A., Small, N., Jarvis, S., & Pickett, K. E. (2020). The caregiver health effects of caring for young children with developmental disabilities: A meta-analysis. Maternal and Child Health Journal, 24(5), 561–574. https://doi.org/10.1007/s10995-020-02896-5
7Australian Institute of Family Studies. (2016). The longitudinal study of Australian children: Annual statistical report 2016. Growing Up in Australia. https://growingupinaustralia.gov.au/research-findings/annual-statistical-report-2016
8Martínez, N., Connelly, C. D., Pérez, A., & Calero, P. (2021). Self-care: A concept analysis. International Journal of Nursing Sciences, 8(4), 418–425. https://doi.org/10.1016/j.ijnss.2021.08.007
9Petcharat, M., & Liehr, P. (2017). Mindfulness training for parents of children with special needs: Guidance for nurses in mental health practice. Journal of Child and Adolescent Psychiatric Nursing, 30(1), 35–46. https://doi.org/10.1111/jcap.12169
10McGreevey, S. (2011). Eight weeks to a better brain. The Harvard Gazette. https://news.harvard.edu/gazette/story/2011/01/eight-weeks-to-a-better-brain/
11Eatough, E. (2022). Struggling with mom guilt? Here’s what to do to overcome it. Betterup. https://www.betterup.com/blog/mom-guilt
12Bray, L., Carter, B., Sanders, C., Blake, L., & Keegan, K. (2017). Parent-to-parent peer support for parents of children with a disability: A mixed method study. Patient Education and Counselling, 100(8), 1537–1543. https://doi.org/10.1016/j.pec.2017.03.004
13Dodds, R. L., & Walch, T. J. (2022). The glue that keeps everybody together: Peer support in mothers of young children with special health care needs. Child: Care, Health and Development. https://doi.org/10.1111/cch.12986
14Shilling, V., Morris, C., Thompson-Coon, J., Ukoumunne, O., Rogers, M., & Logan, S. (2013). Peer support for parents of children with chronic disabling conditions: A systematic review of quantitative and qualitative studies. Developmental Medicine & Child Neurology, 55(7), 602–609. https://doi.org/10.1111/dmcn.12091
