Life without talking: The Down syndrome dilemma

Nikolai Piskulic is a hard-working school librarian. He rides a BMX, he’s done the Kiwi Kids Tryathlon. He's a "stubborn, loving" 10-year-old, full of life, according to his mother, Jacqui Piskulic.

But he also requires a lot of help - much more than what the family can provide alone.

The list of specialists involved in his life include: a speech language therapist, an eye specialist, an ear nose and throat doctor, a paediatrician and a teacher aide at school. Nikolai's extra chromosome means he requires a bit more support - he has Down syndrome.

Nikolai Piskulic (Supplied)
Nikolai Piskulic (Supplied)

"I definitely see that it takes him so much longer to learn and that it takes more than just the family dynamics to help bring him up. I really rely on the community for help.

"The more people invested in Nikolai, the more successful I believe his life will be," Ms Piskulic says.

Some of these services are government-funded, but the help of one of his specialists isn't; one the family sees as "vital" to Nikolai’s wellbeing - his speech therapy. It costs around $4500 a year.

"If you can’t tell me, 'That bath's too hot' or you can't tell me someone has hurt you, there's just so much frustration for anybody that can't communicate", Ms Piskulic says.

"Speech language therapy is vital, as far as I'm concerned. It's vital."

Nikolai speeding around the rack track (Supplied)
Nikolai speeding around the rack track (Supplied)

The Government does provide some speech language therapy for children with Down syndrome. But advocates say that for many families it’s not enough. Ms Piskulic says Nikolai would receive around 15 hours a year through the Government scheme. She says that's far too sporadic and infrequent, so they pay for a private therapist themselves.

Set up by a group of parents in 2003, the UpsideDowns Education Trust helps fund speech language therapy for children with Down syndrome. Funded through grants, events and donations, they pay for close to half of Nikolai's speech therapy.

The trust say they have a long waiting list due to "huge demand" for speech language therapy for children with Down syndrome. They say families urgently need access to help, the sooner the better.

Like Nikolai, Harry has had speech-language therapy through UpsideDowns (Supplied)
Like Nikolai, Harry has had speech-language therapy through UpsideDowns (Supplied)

Charity spokesperson Hannah Reynolds says many parents "elect to undertake speech language therapy at 100 percent of the cost to them. They actually see it as crucial to their child’s success".

Ms Reynolds says that so many parents on their waiting list are paying for private speech therapy is indicative of the desperate need for this service. She says others are missing out because they don’t have the option of paying themselves.

"We have parents who have been waiting a year to receive our support and simply cannot afford the therapy without our contribution. That's devastating", Ms Reynolds says.

Kieran as Flash (Supplied)
Kieran as Flash (Supplied)

Since working for the trust, Ms Reynolds says it's become evident there are two main stereotypes surrounding Down syndrome: That "people with Down syndrome are always happy", and that "people with Down syndrome will be sweet as".

"It's great that there are figures in society and media with Down syndrome who are thriving, but the reality is that not every adult with Down syndrome can talk, read or write, have a job or live independently.

"While we know these outcomes are possible, many people don't really realise that there's so much work that goes on behind the scenes to ensure these kids succeed," Ms Reynolds says.

Lily Mae in an outtake during a shoot for The Warehouse catalogue (Jessica Eastwood / Supplied)
Lily Mae in an outtake during a shoot for The Warehouse catalogue (Jessica Eastwood / Supplied)

This year the trust has set a challenge - spend a day without talking to experience what life is like with limited communication.

Challenge21: Go Speechless asks participants to spend a day without talking, to donate $21 to the trust and to get 21 friends involved too. The challenge will take place on World Down Syndrome Day on March 21, reflecting the third copy of the 21st chromosome that occurs in Down syndrome.

"We'd give an injured person a crutch to make their lives easier," Ms Reynolds says.

"So why can't we deliver these kids the services they need to succeed, the education that we know actually supports their learning and increases their chances of living independently and gaining employment as adults?"

Newshub.

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