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.
“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.
Family and friends don’t understand why you don’t keep in touch like you used to and why you can’t keep carrying your child up two flights of stairs to visit them. Or why you can’t afford to go out for a family lunch when you have spent the monthly budget on specialist appointments and medical equipment. Bit by bit you become more isolated as people stop ringing you, because unlike most illness’ this is something that will never go away and doesn’t ‘get better’.
Your life revolves around therapy appointments and doctor’s visits. Your life is no longer private and multiple people have access to personal information. When we go out somewhere I always seem to look a wreck and am happy just to be wearing matching shoes. After dressing Tara and myself there just isn’t the time to focus on myself. I’m just happy to get out the door!
Having said all of that (and I could say so much more) being a carer has changed me irrevocably. It has taught me resilience and to appreciate the little things in life. My daughter has taught me tolerance and acceptance. Seeing the joy in her face when she has had a good day makes it all worthwhile and gives me the strength to keep fighting for her and the energy to keep going. I would gladly take away the daily struggles in her life if I could, but then again she may not be the unique and beautiful person she has become without them."
"Our days are generally pre-planned as they have to be, and not much scope for ‘winging it’. I got a part time job after being unable to work for over 16 years. I needed someone to shower Tara in the mornings otherwise I wouldn’t be able to keep working.
Before Hireup came into our life our service provider gave us good competent staff to do this. Unfortunately in a nine month period we had 18 different people come and shower her – always at a time that suited the service provider. When the staff member walked into our house each morning we could instantly tell what sort of a day Tara would have, depending on whether she liked the person or not, and whether that person engaged with her. There were no choices and no consistency. She found this a demeaning and disempowering experience, and although we hated it, we had very limited choices.
Nowadays our days start differently. I usually wake up long before Tara. I go for a 45 minute walk for my health and to clear my head.
Tara is showered by someone who she has chosen, and also the time she chooses, which is giving her control over her life – something she has never experienced before. I have a shower and get ready for work knowing she is not only in capable hands but someone she genuinely likes who she can have a laugh with.
Hireup has meant that I can continue working – something I thought was beyond me as a carer. I thought as soon as Tara finished school, my working life would end once again. Tara works and volunteers up to three days a week, and one of her support workers is Phoebe. Phoebe and Tara share a love of Disney and a warped sense of humour. She has a great time with both Phoebe and Ness, who is her other support worker during the day with whom she also shares a love of Disney and music concerts. Tara has a full and interesting life thanks to Hireup and her support staff. As well as working and volunteering Tara attends the gym a couple of days a week, cooks a family meal, goes to sewing and is starting wheelchair yoga next week. She attends art classes and goes to concerts whenever she can. She is living an ordinary life of someone who is 19 years old something we have been striving for all her life."
The highs and the lows
"We had lots of bad experiences with support workers. There were limited choices and no control over staff. People who were old enough to be her grandmother were chosen to go shopping with her. Service providers suggested supported activities for her to attend when she was a teenager that were only suited for a pre-school child, and we were supposed to be grateful that they thought to include her.
But now, we have spontaneity in our lives. Who would ever have thought that a person with limited use of their arms could do embroidery??!!
Tara is happy with her life. After so much unhappiness and limited choices in her life, she is growing and becoming more confident because she is making choices about her day to day life."