Vicki’s story: Giving carers a break
Candice is autistic, non-verbal and has a fascination with plastic items. When at the park for a family picnic, if she sees a plastic bottle she will immediately run off to grab it, whether near or far away, whether safe or not. Candice, who is in her mid 20's, has the compulsion to sort through cupboards and rubbish bins at home and at friends' houses.
Candice’s mother Vicki, 61, has to be constantly looking out for what Candice is doing. The family don’t visit friends very often, as Candice’s behaviour can make socialising a bit awkward. Vicki needs to lock the fridge, the bedrooms, the bathroom, hallway and the back yard to prevent the family home from descending into chaos.
“Sometimes I feel like I’m a prisoner in my own home,” Vicki spells out when reflecting on the hyper-vigilance required to curtail her daughter’s compulsions. “If we go to someone’s house she will immediately start to go through their cupboards. She’s a very strong person and doesn’t take kindly to being stopped. Candice is getting too physically strong for me. If she sees something she wants in the supermarket she will pull me over to it.”
Vicki also needs to shower Candice twice a day and feed her. Caring for her daughter is a full time job and there is very little time out, but respite does allow Vicki to take a much needed break and do a thorough clean of the house. Candice stays in Wesley Mission’s respite accommodation two weekends each quarter and spends the same amount of time in another respite service. Respite enables Vicki to take two trips a year with a group of other mothers who also have children with disability. This group of friends provide a lot of support - and a lot of laughs.
Candice feels the frustration of their family life just as much as Vicki and will sometimes butt her head against walls and windows. She has recently put a hole in a wall. Respite allows Candice to be part of a different environment which can relieve some of her tension. Vicki recognises how important it is for Candice to have this alternate care.
“I don’t want her stuck inside our house all the time. Part of the benefit of respite is that she can get away from all the ‘No’ and ‘Don’t do that’. I don’t have to be the baddie all the time,” Vicki remarks. “She enjoys respite. When she arrives, she goes straight in.”
Life with an autistic daughter is a struggle, but respite helps Vicki cope. It means there are some times when she can switch off from the continuous routine of keeping an eye on Candice.
“Some days I can’t get started. I need to have a cry and then get on with it,” Vicki reveals. “Without respite I would break down.”