Danijela’s story – “It’s so rewarding when you finally see your child succeed”

Sofia, now seven years old, was diagnosed with global development delay and autism spectrum disorder after her mother Danijela and day care workers noticed she wasn’t speaking or learning the same skills as other children her age.

She received her diagnosis at the age of four and has a range of National Disability Insurance Scheme (NDIS) funded supports including an occupational therapist, behavioural therapist and speech pathologist.

Sofia attends school in a smaller class which is part of a disability support unit.

Another diagnosis is needed

Danijela then noticed her second child Grace, now aged eight, had stopped enjoying school despite acing her first year of schooling.

“I thought you know what, I’ll take all the kids and get all their ears tested again,” Danijela says.

“That’s where we found out that she’s got fluid behind the ear and that she can’t actually hear anything in the classroom that the teacher is saying so she was getting frustrated because she couldn’t do her work.

“She just didn’t know how to express herself or say anything, instead she was just really upset and hated school.

“I knew it wasn’t like her so I knew I had to stop everything else I was doing and focus on that and find out what was going on.”

Grace was diagnosed with Auditory Processing Disorder (APD), which is a condition where the brain has difficulty understanding and interpreting speech.

Whilst APD affects 3-5 percent of school aged children the disorder is not included as part of the NDIS and Grace didn’t qualify for funding.

The third diagnosis process

The next surprise for Danijela was her youngest child Lachlan, now five years old, who was diagnosed with global development delay earlier this year after the same day care noticed he was having behavioural outbursts.

He now accesses similar supports to Sofia under the NDIS, as well as a physiotherapist and a School Services Officer (SSO) who helps him learn in the classroom.

“The behaviour therapist helps the children to stop absconding when we want them to do things,” Danijela says.

“They reinforce things like waiting your turn, waiting to receive things, waiting to speak.

“They also play games to help them understand about emotions and the things they should know about life – like the names of parents and siblings, where they live and their surroundings.

“Things they don’t learn in school but need support with.”

Help to learn

She says the support her children are receiving is helping them to learn so they don’t get left completely behind with school and life skills.

“The OT helps with fine motor skills because both Sofia and Lachlan don’t really like to write,” Danijela explains.

“It’s only been this year that Sofia has taken it upon herself to free draw a lot of pictures and she’s started to write her own name, it’s a bit backwards, but at least we know that she’s trying and she wants to do it.

“It’s taken years to get to this point.”

Future independence

For the children to be able to learn the skills their classmates take for granted is important to Danijela because it will mean they can be independent.

With many moments when Sofia and Lachlan have surprised her lately, she says it shows what they might be able to achieve in the future.

“Every little progress that we make I get very excited about because I think ‘oh my gosh they’ve got the concept, this is amazing’ and it’s almost like a snowball effect and other things will happen,” she says.

“I am a little bit surprised sometimes when they pick up the language I want them to use in the right context.

“That’s really exciting because it’s almost like I can have a conversation with them and they can understand what we’re talking about.

“It’s so rewarding when you finally see your child succeed.

“At least I know that eventually they will be independent.”

Family experiences

It has been a long process for the family to reach this point, with referrals, diagnoses, NDIS plans and arranging support all taking time, but Danijela is looking forward to the help of a support worker to be able to go on outings as a family again.

“I don’t leave the house with Lachy and Sofia because they run off,” she says.

“Hopefully when I can incorporate the support workers we might be able to go out more like to the park or to some fun places, it’s not that I don’t want to do it now but it’s a safety issue.”

Outside of receiving all the support needed to give the family an enjoyable lifestyle, Danijela is spending time preparing for what the family might be able to do with that support.

“I’m working out my finances differently so that we’ve got money in the bank as well so if we want to go away somewhere we can, even if it’s just down on a summer’s day to go get some ice cream and walk down on the beach,” she says.

“I like to have experiences with my children more than just educating them, experience is really what gets you over the line to get your values and beliefs in check and appreciate things.”

While putting some savings away Danijela is working on paying for her oldest child Dane (17) to have driving lessons and she also hopes to be able to find a house that will allow the children to have their own room as they grow.