When you’re a parent of a child with a physical or intellectual disability, the typical challenges of parenthood are infinitely harder.
For Dianne Evans, mother of 19-year-old Tara, who has cerebral palsy, her daughter’s struggles mean she must continually put Tara’s needs first – ahead of her other children, her partner, and herself. The journey of helping Tara live a life as independently as possible has been one fraught with hurdles. Dianne has had to navigate imperfect support systems, complex family dynamics, unique financial pressures, and drastic changes to her daily life.
When Tara was in her final year of school, Dianne was particularly anxious about what the future would hold for her. She didn’t know who would be Tara’s full time support worker when she left school, and who would ensure she was able to participate fully in life, rather than just attend her disability day program. Through an organisation called Hireup, the family found 19-year-old Phoebe, a friend of a friend. Phoebe gave Tara the independence she needed – and the two go to the gym together, to Tara’s work, and they recently went on an overnight trip to Sydney.
But the task of getting Tara to this point has been long and arduous. Here, on International Day of People with Disability, Dianne shares the raw and often untold reality of caring for a child with a disability.
Family life
“All decisions in our home are made with the needs of Tara in mind.
This can cause a lot of friction and resentment at times from others in the family. It’s not because your other family members needs are less important, but it is just the way it has to be. There is no ‘down’ time physically and mentally, and most nights you are exhausted by the time you get to bed, only to find you can’t sleep as you plan your next day or week and stress how you didn’t have time to help with your other kids homework. Over time this can take a toll on yourself and your relationship with everyone around you.
Top Comments
As an ex-care worker I sympathise and I'm glad you've found a compatible worker. However, let me add a few words from the other side:
Organisations providing services have to juggle needs of many clients and of their staff, that's how they end up providing services at varied and sometimes inconvenient times. Worker can only be in one place at any given time! Their workers also go on holidays, change their rosters, and often they just leave because let's face it, this is not a particularly easy or well paying job. Most people only do it until they find something better.
Another problem is that while clients naturally value consistency - and some workers do as well - many others prefer variety. I was one of the later: my goal was always to spend as little time as possible with as many clients as possible, rather than working with the same client day after day after day for hours on end... for me it would get tedious rather quickly.
With your current arrangement... well, I'm very glad it is working. But remember, it is now entirely dependent on this one carer. Let's hope her circumstances never change, or you will be back to square one.
I needed to read this, it gave me hope for my future. My story is practically the same except I don't work, my daughter is still in high school and don't have home help.