Celebrating great mums, achieving great outcomes

Posted on 11 May 2018
Celebrating great mums, achieving great outcomes

For 45 years, Robyn Iredale has cared for her middle child, Marty. Now, with the introduction of the National Disability Insurance Scheme (NDIS), she is able to hire the right people to support her son to transition from home to his own place.

Robyn's journey hasn't been easy. She became a single parent when Marty was diagnosed with Fragile X but she didn't let it stop her. She got her MA in Population and Development and a PhD in Economics (The Integration of Skilled Migrants into the Labour Market).

She worked at the former NSW Ethnic Affairs Commission; the National Human Rights and Equal Opportunity Commission; developed a distinguished career in migration research and teaching at the University of Wollongong; was former President of the Fragile X Association of Australia, and did all she could to raise awareness so others could understand this complex, often unheard of, genetic condition.

In her ventures, Robyn supported Marty to help educate others about Fragile X too. She encouraged him to appear in a Fragile X Association video with four others to show people how hard it is for people with a disability, who have valuable skills, to get a job.

Featured on the Fragile X Association website, Marty soon shot to stardom when ABC producers saw the video and offered him a spot on a recent TV series, Employable Me.

"Marty was lucky to get a spot on the program," Robyn said. "They had nine people already when they found out about Fragile X. They didn't know about it!" she said. "They had lots of people with Autism and one with Tourette's so they thought they would include Marty."

Robyn has a brother with Fragile X too. "It's caused when the FMR1 gene on the X chromosome, known as a gene mutation, expands," she said.

"The X chromosome is one of two sex determining chromosomes and when the gene on the X chromosome duplicates to over 200 repeats it switches off protein production, involved in brain development and other functions.

"Fragile X in males and females causes intellectual disability, behavioural and learning challenges and it comes with physical characteristics but it is often more severe in males," Robyn said. "Each person is different and no two people with the condition are the same."

Researching Fragile X, it's also the most common single gene cause of autism worldwide, and Robyn, living it firsthand, said it certainly wasn't easy.

"Marty would yell, scream, get upset and at times he would become difficult or violent," she said. "His condition affected everyone, especially his two sisters who would often come home from school crying after trying to defend their brother.

"Over the years, Marty has been thrown into some dreadful situations. I just think if people had shown more patience and taken the time to discover his skill sets, there would have been much better outcomes."

Robyn said while living in Wollongong, Marty worked in supported employment for 12 years but he ached for a regular job in an environment he enjoyed.

"It wasn't possible in Wollongong so we moved back to Sydney. Marty entered the NDIS and we were able to engage a disability employment support provider, Northcott," Robyn said.

"We were lucky enough to get Susan, Marty's support worker, who has just been exceptional. She negotiated with Marty's employer to get him a job and she has been a great support ever since.

"Marty is on his second NDIS plan. He is working two mornings a week. We have also engaged another provider, The Housing Connection, who are working with us to prepare him to move out of the family home.

"I bought him a unit to live in, about half an hour from our family home, so once he's in, support staff will visit twice a week, for three hour blocks, to support him to cook and clean, and accompany him to any appointments or activities he'd like to do.

"The Housing Connection is also helping us to advertise for a flat mate to live with Marty. The successful applicant will get reduced rent in lieu of some responsibilities. Marty also has Type 1 Diabetes so it will be good for me to know someone will be there if he happens to have a hypo.

Robyn said they also use Hireup to engage support workers to cook with Marty fortnightly, to run him to tennis tournaments, a particular love of his, and to other activities.

"Having people to take him to appointments and activities is just a huge relief," Robyn said.

"The NDIS has been very good for Marty. Now he has other people in his life and he's not so reliant on my second husband, Tim, and I."