“Nothing should stop you from doing things,” says Sydney mum Sue, primary disability carer for her 20-year-old daughter Lorrin or ‘Loz’ as she likes to call her. Sue and her husband Rod made a solemn promise to their baby girl who suffered a brain injury at birth resulting in cerebral palsy and her first epileptic seizure at just 11 hours old: “If you pull through, we’ll go outback like we’ve always done, and you’ll be doing it with us.”
Despite her high disability care needs, the family took Lorrin on their first trip away from home when she was only three months of age. “We went to a friend’s farm near Coonabarabran because we wanted Lorrin to enjoy the sensory experience of touching animals,” says Sue. When Lorrin was one, she went camping for a week in the Victorian high country.
Lorrin is non-verbal but she makes it very clear she enjoys the exhilaration and freedom of movement, like when she’s in a car, going for long wheelchair walks outside, or floating on an inflatable lilo on a lake. If she’s moving and can look around, she’s happy.
Although travelling with a wheelchair and additional disability needs poses many challenges, the joy and liberation of a holiday make all the extra planning worthwhile. The family crossed the Simpson Desert when Lorrin was 18 months old and have visited Litchfield National Park, Uluru, Kakadu and Cape York. “Loz has flown over the horizontal waterfalls in the Kimberley’s, sat on camels and played in the red dirt. A lot of touchy-feely experiences,” says Sue.
How do you deal with emergencies when you’re in the remote outback with a daughter who has high care disability needs? Sue and Rod made sure they were well prepared with a satellite phone and extra medication.
There was only one really serious emergency. In 2007, they visited the Kimberley’s and were traveling the Oodnadatta Track in outback South Australia when the grease on the back wheel-bearings of their motorhome caught fire. “I jumped out of the truck with Lorrin in my arms, and dislocated my foot. We called the Royal Flying Doctor Service and they flew me to Adelaide.” However, Lorrin became distraught without her mum and her health took a turn for the worst, which also led to Rodney and Lorrin’s emergency evacuation to Royal Adelaide Children’s Hospital.
With age, Lorrin outgrew her car seat and her disability care needs became more complex as her scoliosis and constrictions to the muscles of her arms and legs got worse. Sue and Rodney put more trips to the outback on hold until they could fit out a full-sized coach to accommodate Lorrin’s wheelchair and personal care needs. With Rod working shifts, and Lorrin’s increasing medical and care needs, Sue could no longer handle this alone. It was time to find additional disability care support.
In 2008, the couple made the decision to engage home care services from Private Care, and this has now become an essential component in their lives: “I rely so much on our carers. They make things easier by helping out with our routines but they also sense when I need some space. They’ll say to Lorrin: ‘Ok, let’s go for a walk and let Mummy have a rest.’”
Lorrin looks forward to seeing her carer-companions – either Sandy, Sarah, Sharon or Taryn – at 4pm when she gets home from a day at ‘college’ (Inala Disability Centre). They spend time together, and the carers help with bathing, then with preparing and feeding Lorrin her evening meal.
Sue says that Lorrin loves all of her carers but she particularly enjoys her time with Taryn, who’s similar in age. “The good thing is that Private Care know Loz’s temperament really well. They’re selective about who they send and are quick at responding if someone isn’t the right fit.”
Now when the family takes trips away, they usually head to their favourite motel in the Blue Mountains with one of Lorrin’s carers. What they really can’t wait for is when their new motorhome will be ready and a carer can go with them to the Aussie outback.
“Lorrin’s come a long way,” says Sue. “There’s a little spark of cheek in her that’s lovely to see. You can see her go ‘Uh-huh! I know what you want me to do but I’m not going to do it!’ Then she’ll giggle. You see the full gamut of emotion. She can be very stubborn and moody sometimes, but when she’s happy she’s so very happy.”
** Lorrin’s care is funded by the NDIS. With the recent transition to NDIS, Sue was nervous about losing Lorrin’s current carer-companions who play a pivotal role in Lorrin’s wellbeing and happiness. However, her NDIS agent assured Sue that with a Self-Managed plan, which allows the recipient to choose their own care provider, that this would not be the case.