Courageous mum cares for her disabled son
Lorna Lorz lives at Tuckurimba with her 15-year-old son Donovan.
This young man has brain damage - thereby suffering an intellectual disability - cerebral palsy, epilepsy and gastro-oesophageal reflux.
“He's gorgeous and presents very well and that's a problem because he looks normal and people expect a lot more from him than what he's able to give. People can be a bit unthinking and say things to him like: 'How old are you, Donovan?' and he'll look at me and say: 'How old am I, mum?' And people say: 'You don't know how old you are, you don't know your phone number!' So I have to go into recovery mode to make sure that he's still intact. I just quietly say to people, he doesn't actually know his phone number but he's learning and he's doing well and they get the hint,” Ms Lorz explained.
Donovan attends a mainstream high school at Casino - something Ms Lorz battled to make happen, but she believes a normal school is better for Donovan's needs than a special school.
“Even though it has its problems he's out in the community and he has good role models. He's part of life and it gives me a life too between the hours of nine and three. The other issue of course is what happens when he leaves school, but we'll face that when it happens,” Ms Lorz said.
So what's a typical weekend day like with Donovan?
“Well first of all it's likely you've had a disturbed night. I was suffering chronic lack of sleep before we got his epilepsy under control 18 months ago. But the main thing about Donovan is that he needs to be constantly guided through his day.”
Donovan is very active and on the go all day.
“He needs to know what's happening next. He needs help with the shower and his clothes laid out for him and I have to get breakfast for him.”
At that point Donovan wants to know what's ahead for the day, but Ms Lorz said you can't just tell him to go and do a job, he needs constant supervision to monitor what he's doing.
“It's constantly being aware of where he is and what he's doing and what his needs are. You need to have eyes in the back of your head.”
At 15, Donovan is starting to feel more isolated from his peers because he can't take part in a lot of what his school friends do.
“Other 15-year-old's might go to the pictures with their mates or you might drop them at the beach for a couple of hours or go to each other's places. I'm finding that harder and harder and I have to organise his social life and that's getting harder, because they're maturing faster and he's getting left behind and he's feeling that.”
Ms Lorz encourages Donovan to do jobs around the house outside, which he enjoys.
“He'll be wanting to cut down trees and burn things in the garden so I supervise that and it's okay. He also likes playing PlayStation and enjoys The Simpsons on TV. It's good to get him out of the house and go on a picnic or to the farmers market or go and visit somebody,” Ms Lorz said.
But Donovan is feeling a bit left out socially and can't understand why he can't stay home by himself.
“It's a difficult time because he's starting to talk about careers and he's fascinated by the police, firefighters and the army, but I have to tell him he won't be able to do any of them.”
Of course, the financial burdens for carers are enormous.
“Financially we're way behind the eight ball. We used to say we never get ahead but now we say we don't even break even. There are extra transport costs, extra medical costs, washing costs, extra electricity costs, keeping a car on the road, it never stop,” Ms Lorz said.
While Ms Lorz said the life of a carer was really tough, most carers don't want to be the victim.
“ It's difficult to ask for help, to help for services such as physio and speech therapy - you feel as though you're begging and they're aren't enough therapists anyway. So you end up paying privately and in some cases you get a bit back from Medicare but you're still forking out the money.”
Carers also lack social and employment opportunities and can find themselves socially isolated, but many give a lot back to the community.
“In my experience a lot of parents of children with disabilities do a lot of volunteer work at the school or volunteer in the community with carer support groups and things like that,” Ms Lorz said.
Ms Lorz wants people in the wider community to take the time to get to know a carer and their circumstances and lend a hand where possible.
“You might be able to help in just some small way. People are sometimes frightened to get involved.
“All I'd ask is for a bit more understanding and support from the community.”
Want to know more?
- Far North Coast Commonwealth Carer Respite Centre: 1800 052 222.
- Emergency Respite Service information: 1800 059 059
- Interchange Respite Care Inc.: (02) 6625 2546