Austin family
Tell us a bit about your family
My name is Alison and I am married to Murray. We have three girls – Emma who was born in 2004 and twins Audrey and Ashlea who were born in 2006. Audrey and Ashlea were born very preterm due to twin-twin transfusion syndrome. As a result Ashlea lives with cerebral palsy, intellectual disability, autism and vision impairment. She also had a kidney transplant at age five. All of her disabilities are related to being deprived of blood and nutrients before birth combined with the effects of extreme prematurity. To make things more interesting, Murray has an acquired brain injury due to complications following kidney donation (he was Ashlea’s donor).
What are some of the joys of parenting a child with a disability?
The joy is Ashlea – she is a delight. She is funny and determined and has such an inner strength. She shows me what it is to be resilient and reminds me of what is important in life. Ashlea loves to sing, and it brings such joy to hear her make up songs or sing with her twin. Ashlea reminds us that each life is valued. Ashlea loves and is loved by her family and by God. What else matters?
What are some of the challenges that you have faced while parenting a child with a disability?
The challenges have been things like surgeries, constant appointments, lifelong health issues, forms, forms and more forms. Worrying about what might happen to Ashlea when I get old. Physical barriers in the environment that prevent access. People who only see Ashlea’s disability and don’t see her as a person. Forms.
The obsessions. Actually I have a love/hate relationship with the obsessions. I love that Ashlea LOVES her things, but I just don’t know how many more times I can discuss the merits of the Fisher Price Ocean Wonders Aquarium circa 2002.
How has your faith been stretched or grown on your parenting journey?
My faith was strengthened when the twins were first born. I felt that all the theology I knew as theory was now relevant. I didn’t need to question ‘Why me?’ or ‘Why this?’. The pieces of the puzzle fell into place. God was (and is) in control. As the creator He has the right to determine how many minutes or hours or days my child gets to live. And if He holds my child’s life in His hands (and all our lives too) where else is there to turn? There was no point turning away from God because He was the only one in control of the situation. Now, 14 years later, my faith is being stretched. For me it was ‘easier’ to have faith in the big crisis times. It is harder to keep plodding along, day after day, doing the same things for my child each and every day with no end in sight. Persevering is harder (for me anyway) than having faith through the initial crisis.
Do you have any words of encouragement to share with other families of children with disabilities?
It’s OK for things to not be OK. You don’t have to get the ‘happy ending’ for life to be good. Ashlea’s life is different from her siblings but it is not less. She is happy and she is loved.
How can the wider church support your family?
For my child: Include her in activities in meaningful ways – for example, play a game that she can participate in rather than a game that happens around her. Think about modifying activities so they are more inclusive. Does youth group have to be loud to be fun? Do you really have to play an outdoor running around game on a steep hill? Or could we encourage the group to understand inclusive practices and modify activities so that everyone can be involved?
For the siblings: Be aware that their experience of family life might look quite different to their peers. Recognise that they may be thinking through big questions and processing big emotions about having a sibling or parent with a disability.
For the parents/carers: Be prepared to walk with us for the long haul. There is no quick fix, there will be multiple crises and surgeries. Don’t stop offering support just because we seem to cope well – we have learnt to deal with a crisis because of how many we have faced! Be aware of caregiver burnout. On the flip side, don’t assume we live miserable lives of suffering just because someone in our family has a disability. Our lives are still pretty great.
Where are you based?
The Hills District, Sydney
The views and opinions expressed on this site are those of the authors and do not necessarily reflect the official position of The 139 Collective. As a collective, we seek to humbly learn from each other’s experiences and remember the unity that we share in Christ even when our current viewpoints on the difficult topic of disability differ.
