Dealing with disability: parents under pressure

Dealing with disability: parents under pressure
Posted on Mon 30 Mar 2020

By Tina Wild, Cerebral Palsy Alliance 

Published in Natural Parent magaine 30 March 2020

All relationships experience demands and stresses, but having a child with a disability adds extra pressure. For some, the pressure can be too much and their relationship may fall apart. For others, the pressure – and hard work – makes their bonds stronger.  

Here, parents Hiam and Joe share how their relationship has survived, and CPA therapists, Joan Bratel (clinical psychologist) and Robyn McMurdo (social worker), talk about their experiences of supporting families and helpful strategies that they have seen work.

Hiam’s family dream came true when daughter Eve was born. Defying medical odds, she survived and went on to walk, talk and feel emotions.
Eve is now a happy 5-year-old, who has recently started school and has mild cerebral palsy. Although Hiam and Joe count their blessings, the birth trauma and ongoing stress are ever present.

Here, parents Hiam and Joe share how their relationship has survived, and CPA therapists, Joan Bratel (clinical psychologist) and Robyn McMurdo (social worker), talk about their experiences of supporting families and helpful strategies that they have seen work.

Hiam’s family dream came true when daughter Eve was born. Defying medical odds, she survived and went on to walk, talk and feel emotions. Eve is now a happy 5-year-old, who has recently started school and has mild cerebral palsy. Although Hiam and Joe count their blessings, the birth trauma and ongoing stress are ever present. 

 “You’re on an emotional rollercoaster from the start, and nobody will allow you off it,” Hiam says.  

“You live on your nerves. Sometimes I can feel my heart rushing through my body like a freight train. I guess that’s the anxiety, not knowing what’s next.” 

Hiam admits her relationship has been placed under huge pressure. The guilt she felt for returning to work is a pressure that society places on mothers. Despite Joe being Eve’s primary carer, which involves managing numerous therapy and medical appointments, people often defer to Hiam.

This assumption of traditional gender roles makes Joe lose confidence in his ability. For Joe, the hardest things about Eve’s disability are the birth trauma, which still affects him, anxiety about Eve’s future (whether she’ll be accepted at school, how she’ll be affected as a teenager, and so on), the strain on the relationship, plus the financial stress of losing an income and paying for therapy.  

 

REACTIONS TO DIAGNOSIS

According to CPA social worker, Robyn McMurdo, grief reactions following diagnosis include denial, anger, guilt, blame and depression. 

”Each parent will experience these emotions in different ways at different times. Parents usually tell me that one of them faced up to the reality of the disability before the other,” she says. 

Psychologist Joan Bratel says when a child is diagnosed one partner may withdraw emotionally and be less available to the other as they struggle with their grief.

These losses may be compounded by the loss of social opportunities, friends, careers and income in order to provide the necessary support to their child.
For some couples, the ultimate outcome is an end to their relationship as they struggle to deal with their own emotions and to provide their child with the right supports.

Hiam believes the state of a relationship becomes amplified after diagnosis. If it’s already struggling, the stress of a child diagnosed with a disability will accelerate the struggle. Luckily, Hiam and Joe’s relationship was built on solid foundations, but there have been dark spells, and Hiam says it needs constant work.

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 to find out about early childhood intervention programs and how we can support you and your child. 

Newcastle Knights supporters recently raised over $600 for CPA through the 50-50 Charity Raffle. 

William Best, graduate of the HABIT-ILE intensive program has achieved his first profesional film role at aged13.