Hiam nurtures her relationship using a logical approach and skills honed from being a former Google exec, current workplace consultant in cultural transformation and board member of CPA and disability tech start up, Xceptional.
“If you want your relationship to survive, you have to prioritise it. That means lots of planning, and project managing your life,” says Hiam.
“As hard as it is to juggle, you need to make time together as a couple,” Hiam says. What that looks like changes when you have a child with a disability; the smaller windows of opportunity mean she and Joe have ‘date breakfasts’ rather than date nights.
Their friends also play an enormous support role, providing much-needed respite at the drop of a hat.
Respite is essential, whether it’s provided by family, friends or professionals.
Communication is key
Robyn McMurdo has seen parents draw apart emotionally and reinforces the need for honest communication and time together. Parents may stop sharing their feelings, as they are either unable to spend time together or want to protect each other.
Joan Bratel emphasises that the wider family may also be looking for answers and experiencing the emotional impact of the diagnosis. Guilt, blame and disbelief, if not acknowledged, understood and addressed can lead to increased levels of anxiety and depression, adding to the difficult path parents and extended family are navigating, while supporting their child with a disability.
As well as parents, siblings, grandparents and friends are all impacted by a diagnosis.
Robyn has seen the impact on families, and believes siblings, in particular, need a voice and are often overlooked, as the focus is on the child with disability. Siblings Australia has shown adult siblings may play a significant support in the lives of their brothers and sisters with a disability. Hiam’s eldest child, Ryan, was 13 when Eve was born, and she says they almost forgot to bring him on the journey. Ryan expected his baby sister to die when she was born, and that was tough for him.
The family have learned to adapt though, and today they are a strong unit, bound by the challenges that they have faced and overcome. Ten years ago, Hiam never imagined being self-employed, but priorities change when you have a child with a disability. “It may not be the life we’d imagined, but we make the most of what we have, and what we have is pretty special,” says Hiam.
At CPA we support and advocate on behalf of babies, children and adults with cerebral palsy and a range of neurological conditions. Visit www.cerebralpalsy.org.au/eci to find out about early childhood intervention programs and how we can support you and your child.
