For most people parenting involves enormous highs and lows. Raising a child with a disability brings additional challenges and demands for parents and carers. Many parents of children with a disability have shared the grief and loss they have experienced at different stages of their journey. Lots of parents also speak about the joy that they experience in raising their children, celebrating successes and achievements that other parents may take for granted and ensuring their children’s quality of life.
Callers to Parent Line share a range of parenting experiences and expectations. Many parents talk about their growing awareness of ‘early warning signs’ of developmental issues and concerns. Some have these concerns raised or confirmed by early childhood professionals, whilst others may unfortunately have their concerns dismissed or minimised by relatives, friends and/or professionals.
Parents may experience grief and loss about their child and the diagnosis/prognosis in different ways. For example, some parents might express shock or disbelief that there is anything 'wrong with' their child. Others may be angry about the lack of services and waiting times. Some experience anxiety or depression about what this means for their child, themselves, their family and the future.
Parents also share their frustrating experiences of long waits for diagnosis and services. Waiting times may be due a number of issues: from the multi-disciplinary assessment process requiring multiple appointments, public health waiting lists and professionals wanting to rule out other causes, just to name a few. It is understandable that parents express distress at waiting for assessment; having a desire to ‘do something’ and knowing the importance of early intervention. While professionals may understand these reasons well, sometimes they do little to comfort frustrated and concerned parents.
Many parents also express feeling daunted and sometimes overwhelmed by having to take on a significant role in their child’s treatment. This includes;
- assessing what therapies are needed
- coordinating, monitoring and case-managing treatments
- finding services, liaising with professionals and advocating for support
- assisting their child with communication and behaviour at home and in public.
Negotiating the variety of disability professionals and health services can be a source of considerable stress and frustration for parents.
Many parents and carers do not have adequate support in caring for the person with a disability. Even when they do have help, many feel they cannot burden others with their fears and worries about caring. Sometimes the support itself can also place additional stress and pressures on parents, like having to feel grateful or appreciative of help and accepting unhelpful advice.
While there can be lots of challenges and grief involved in parenting a child with a disability, over time most parents find supports, resources and opportunities.
Parent Line staff are trained and qualified counsellors who can appreciate the experiences of parents raising children with a disability. The assistance we offer is personalised and specific to each caller and their family’s individual situation. This may range from counselling, parenting education and strategies, information and referral to early-intervention and disability services. It may also include information about financial support and funding options as well as exploring support from both informal (family and friends) and formal services (support groups, respite, therapeutic services etc).