Parenting a child with a Disability is a unique journey for all parents and caregivers. From navigating complex systems like Healthcare, the NDIS and Education, to Advocating for your child’s needs. Balancing these responsibilities while nurturing your child’s unique potential and fostering their Independence comes with challenges and ups and downs, but celebrating each milestone and achievement comes with much reward.
The Journey can sometimes feel overwhelming. The right Support can make all the difference. Accessing services, connecting with others who understand your experience, and finding tailored Resources can help lighten the load. With the right tools and a strong Support network, you can empower your child to thrive and embrace the joy in your shared journey together..
If your child has just received a diagnosis of Cerebral Palsy and you are unsure of what to do next, or require referrals or to connect with other parents on the same pathways or just want someone to chat to who understands, please contact us.
Children 0 -6
As a parent or carer, receiving any diagnosis for your child can be a scary and confusing time. The important thing to know is that you are not alone.
Useful Resources:
- My CP Guide - Cerebral Palsy diagnosis in babies and children 0–6 years
- My CP Guide - Cerebral Palsy services and supports for children 0-6 years
- My CP Guide -Cerebral Palsy and general healthcare for children 0-6 years
- Five All Abilities Playgrounds
- Improving physical function of children
- Getting started at child care and kindergarten
- Accessing NDIS support for children aged 0 to 8
Read more stories about the Early Years here.
Children 7 -17
More than 75% of children with CP in Australia are diagnosed within their first two years of life. However, in some cases, reaching a definitive diagnosis can take time, with repeated tests and multiple doctor or specialist visits. For children with milder symptoms, it may take months or even years to identify. Sometimes CP isn’t fully diagnosed until they start school, at a time when crucial stages of learning begin.
While this process can be frustrating, it’s essential to allow time for an accurate diagnosis. The symptoms of CP tend to remain stable over time, so if your child’s condition improves or worsens significantly, it could indicate a different underlying issue.
Useful resources:
- Cerebral palsy diagnosis in children 7-17 years
- Cerebral palsy and general healthcare for children 7-17 years
- Introduction to movement and muscles 7–17 years
- Introduction to pain management 7–17 years
- Disability activities for your child
- Starting school
- Funding in government schools – Disability Inclusion
- Teenage years
Read more stories about School Age children here.
Transitioning from Youth to Adult
Turning 18 brings significant changes for young Australians with Disabilities, and the shift to adult Healthcare can be particularly challenging. The transition often means moving from a well-coordinated team of Paediatric doctors, surgeons, and Therapists to a fragmented system, often leaving individuals feeling lost or overwhelmed to navigate and manage their care alone, beginning another stage of their life journey.
Finding specialists in Cerebral Palsy as an Adult can be especially difficult, and access to the right support is not always straightforward. This process may take time and persistence. This is an area that CPSN is continuing to advocate for, particularly improved systems to ensure Young Adults with CP can continue to receive the support they need to thrive and not be left behind.
This video from Raising Children Network, looks at transitioning from Paediatric Health care to Adult Health care. Health professionals, as well as parents of teenagers with chronic conditions, talk about the process.
Useful Resources:
- Transitioning from Childhood to Adult Healthcare – Sophie's Story
- Young Adult Complex Disability Services
- Turning 18 checklist
- Supporting your child with decision-making
Read more stories about the Youth to Adult transition here.
Parent Care and Wellbeing
Caring for a child with Cerebral Palsy is a long-term journey that brings both rewards and challenges. It’s natural to experience strong emotions like stress, frustration, guilt or grief, especially when navigating complex systems and seeking the right support. These feelings are normal and understandable, but it’s important to remember that your own physical and emotional health matters too.
Balancing your role as a caregiver with maintaining your personal wellbeing can feel overwhelming. However, prioritising your own happiness and relationships—whether by sharing your feelings or creating time out for your partner or family—is essential. Taking care of yourself isn’t just beneficial for you; it helps you continue to provide the best care for your child. We have helped many families and caregivers get the self care they need by building a Support Worker team, for example, a client’s mum helped us to build a Support Worker team for her daughter, enabling them both to enjoy separate holidays. The parent’s confidence in our team allowed her to take a well deserved break, knowing her daughter was in safe and capable hands.
Click to learn more about CPSN Individual Support services.
Join the CPSN Community
Join the CPSN Community for opportunities to connect with other parents and families with a child with a Disability.
Useful Resources:
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