The resilience and endurance of this small group of parents is astounding. The circumstances they find themselves in render them without choice. They have grown a thick skin, like leather. Sometimes they barely sleep for days. They have encountered confronting diagnosis, and some are placed in a category of ‘unknown’. Diagnosis or no diagnosis, the unpredictability of daily life changes here like the weather during the wet season in the north part of Australia: it can be hot, humid and suffocating with unforeseen downpours of heavy rain, floods, spectacular electrical storms, followed by cold nights. There are also moments of sheer beauty and unconditional love. This is the life of a parent who has a child with a disability. While the range of disabilities distinctly vary, the peaks of each child brings bouts of joy and troughs of hard times. Everyone has their own unique story. On a cool winters morning, we hear only parts of the story. Judith calls it “disability world” and for these parents it is 24 hours, around the clock care.
“It is a completely different world from everybody else. It is seriously because I had zero idea of this world before my kids.”
“It does make you a recluse, progressively. You don’t realise until one day you think, oh I used to go out, I used to do things.”
“I see friends who watch Jayden and say ‘Oh he’s great, he’ll be fine, he’ll be right just give him a couple more months’ and I think no. I have specialists and heads of their fields going something is wrong. They do not understand, and you become almost resentful that they’re not getting it.”
“My son has got a list of issues. I have people that look at him when he is having a good day and they say ‘he will be fine, yeah no worries’, and I think no, this is half an hour that you are seeing him for and you are saying he’s fine, he has not had a problem – give them another 23 hours a day and then they have a better idea,” said Katie.
These families meet once a week at MyTime in Ferntree Gully. This non-descript building beside a suburban football oval may not look important, but the space literally saves lives. It is a vital part of the week for the children, who, for most of them, routine is crucial. For the parents and carers, it is a lifeline. MyTime was born out of a sheer necessity for parents and carers. They can attend with or without their child or children. Children up to 16 years of age can attend.
“We lead really isolated lives. Really, really isolated lives,” said Lisa.
She laughs that her son’s therapist is the only adult she gets to talk to every week. The parents laugh, but as the morning goes on what they are saying is not very funny.