Liz Bell
STRATFORD couple Kirstin and Steve have met a few hurdles in their parenting challenges, but are clearing the jumps in the best way they know how — with a positive attitude.
Daughter Indi has just turned five, and was born with severe hip dysplasia in both hips.
At six weeks old she was fitted with a hip brace that had to be worn for 23 hours a day and, after being in and out of various hip braces for the following two years, she was eventually diagnosed with hypotonia and joint hypermobility, which meant her muscles had to work twice as much as normal for her body to complete even the most basic of tasks.
At first, Kirstin and Steve thought this was enough of a challenge for Indi to deal with, but as time progressed they realised there were a number of typical milestones that their daughter simply wasn’t meeting.
Kirstin and Steve put her delays down to being braced for such a long time as an infant, and at 2½ years old Indi finally took her first steps and learned to walk.
It was a milestone her parents had longed for but, frustratingly, Indi’s progress continued to be slow and delayed.
At one of Indi’s regular hip reviews at Melbourne’s Royal Children’s Hospital, Kirstin and Steve discussed their concerns with her orthopaedic surgeon and physio teams, who explained that Indi’s delays were not caused by her hip dysplasia.
Soon after their precious little girl was diagnosed with global development delay, with the diagnosis triggering the process of early intervention with countless assessments, reports and testing.
At this time Indi was also displaying definite signs of autism, but it was always brushed aside because, as Kirstin said, she was “also quite a social butterfly” with relatively good eye contact.
However, at age four Indi completed a cognitive assessment when she received a diagnosis of intellectual disability, and as subsequent specialists got to know Indi, she was diagnosed with level 3/2 autism.
Kirstin said the following 12 months were like an emotional roller coaster for the couple, as they came to terms with what that diagnosis meant.
“You grieve, you cry but you just have to keep fighting for the best,” Kirstin said.
“In so many ways it was a relief to finally have some answers.
“Knowing Indi has autism as well as an intellectual disability has provided us with a pathway to help her achieve the best she can.
“We are all learning along the way and doing our very best to help her and others.”
One of the biggest challenges Kirstin and Steve have had to overcome has been finding specialists, resources and support near their home, about three hours’ south-east of Melbourne where the wait lists are long and the choices are small.
But, on the positive side, Indi has always enjoyed bike riding or sitting in the bike trailer with her mum and two-year-old sister Mia on family adventures.
“The smile on Indi’s face when she is zipping by on pedal power says it all — and this form of exercise is a great way to help regulate her emotions,” Kirstin said.
In fact Indi loves riding her bike so much, she is participating in the 25km Ride for Autism fundraiser, which began on Sunday and continues until this Sunday.
“When we read about Ride for Autism it was something we didn’t hesitate to do,” Kirstin said.
“We particularly hope our funding can assist with much-needed resources and support in regional areas so no other children on the spectrum are left behind.”
Kirstin said while Indi tired easily because of her disability, she loved her bike and was always happy to go for a ride.
“She doesn’t have good balance so I have to be there beside her, and she doesn’t really understand it’s for a fundraiser, but she just loves that she gets to go on the bike so much,” she said.
Kirstin said she aimed to take Indi riding most days, and in fact had become quite well known in the local area as “the girl and her mum” on the bike.
“We go out most days to get a bit of training in and now a lot of people stop and say hi — it’s been such a great experience,” she said.
“And of course [she’s] so friendly, Indi loves to stop and say hi to everyone.”
Ride for Autism is a fundraiser started by Autism Spectrum Australia, with a vision that every person on the autism spectrum has the support they need to thrive; every opportunity to fulfil their potential.
The organisation runs several special Aspect schools for students with autism, and works with businesses, supermarkets, theatres, museums and other public attractions to make spaces autism-friendly, so that people on the spectrum can participate and enjoy the same experiences as their peers.
Kirstin said one of the difficulties of living in a regional area was the distance from city areas where most facilities and support networks were based.
One of the areas where she would love to see some of the money raised directed is to bring Aspect schools to regional Victoria, so Autistic students can access targeted education.
Kirstin has also co-founded the Gippsland Special Needs Facebook page where parents can find support, information and share idea.
To follow Indi’s ride and help her raise money for Autism Spectrum Australia, go to rideforautism.org.au/fundraisers/indioshea.
