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"It was heartbreaking to watch the loss of my son's normal life"

By Mandy Maysey 4 min read
Thursday, June 10, 2021

There is a lot of denial, anger, incredulity and the inescapable feeling that the world is not a nice place.

Being the parent of a child experiencing disabilities is a role that requires a lot of love, patience and the ability to never give up on making the world a better place for your children. 

Learning that your child is experiencing a disability changes your worldview as a parent. There is a lot of denial, anger, incredulity and the inescapable feeling that the world is not a nice place. I even experienced isolation from people I thought were my lifelong friends. You do have to take some time to grieve while this happens and there are enormous emotional hurdles to overcome.

It reminds me why I am the president of the Tourette Syndrome Association of Australia and why I’m fighting tooth and nail for a better world where children experiencing disabilities can feel more welcome and comfortable.

All three of my children Conor, Void and Izzy, have been diagnosed with Tourette Syndrome (TS) and getting through some days can be difficult. My son Conor was diagnosed with TS when he was 21 years old. The rug was completely pulled out from underneath him and it was heartbreaking to watch the loss of his normal life and the life that I imagined he would have.

Mandy Maysey and her family

Mandy Maysey and her family. Her three children have all been diagnosed with Tourette Syndrome.

At the time he was diagnosed, his employers quickly became difficult and disrespectful. I tried to step in and ask his employer to step up to the plate and embrace the fact that he had TS. They instead missed the opportunity and lost one of their best employees. He was always excited to go to work, was always up-selling and loved interacting with customers—he was a real asset and would have gone far. He now works at a fashion distribution centre which has been excellent for him as it is a job he loves and helps him to be self-sufficient.

Navigating getting a first part-time job has been difficult for my middle child, Void. Children with disabilities looking for work for the first time have no previous experience and just need someone to give them a chance to get their foot in the door. But unfortunately, employers don’t really see beyond the disability and the amount of discrimination we hear about every day is disheartening.

Employers really need to give people a fair go. It’s an obvious piece of advice but being human, understanding and not judging straight away should be second nature when interviewing someone experiencing disabilities. People with TS, for example, are very well educated, well-spoken and have a strong work ethic because they feel as though they must justify why they’re there.

I do believe that the government should be doing more to help people and families experiencing disabilities. In Australia, people applying for the National Disability Insurance Scheme (NDIS), a scheme of the Australian Government that funds costs associated with disability, often face many roadblocks and hoops to jump through. Almost everybody I know who has applied, has been knocked back once and therein lies the problem. You’re told that you haven’t tried every avenue and that, with TS in particular, that they’ll grow out of it.

Many of the people applying are vulnerable and if they are told no once, they won’t ask questions and will stop fighting. The goal posts are always changing and unless you have lots of documented issues, the likelihood of getting NDIS is next to remote. This is why organisations like Developing Australian Communities are so important to not only help NDIS participants get their funding, but also to connect them with the right service providers and truly make the most of their funding.

My advice for parents with children living with disabilities is to find something that they are passionate about or very interested in. Even if they are academic, it doesn’t mean that they will want to do that for the rest of their lives. Play to their strengths and go for the kinds of careers that are going to fill their buckets instead of their bank accounts. This will help your children to find their place in the world.

Helping children with disability find work

As a parent or guardian of someone who has left school, transition into adulthood can be very trying, especially for those living with a disability.

Symone Marjanovic, national employment supports manager for the Australian Foundation for Disability (Afford), an Australian disability service provider, has a few tips to help your child with a disability find employment:

  • Not everyone finishes school and knows what they want to do. In fact, many people have no idea and may not know what they want to do for years. There are plenty of places for school leavers to get employment inspiration, for example: People you know, friends, career websites, case studies, Centrelink and Disability Employment Services (DES) and of course NDIS disability expos.
  • Speak with your child's school transition teacher about the NDIS: They should have this information ready for you; if not, you may need to speak directly to the National Disability Insurance Agency (NDIA) to see if you are eligible for the NDIS.
  • Once you and/or your child have discussed their employment goals and support needs with an NDIA planner and you receive an NDIS plan, there will be some options for them to gain skills needed to find meaningful, sustainable employment.
  • Disability service providers such as Afford should be able to offer you school leaver employment support services. This is to help your children develop skills in independent living, time management, travelling independently, money management, work ready hard and soft skills, work experience opportunities, further education and ultimately a pathway to mainstream employment through their work experience opportunities or through a DES.
  • Australian Disability Enterprise (ADE) or supported employment can offer a wide range of employment opportunities for those who require regular, ongoing and/or intensive supports in the workplace. This can lead to open mainstream employment if this is the participant’s goal.
  • Some service providers will also offer intense 1:1 support with the aim of seeking employment opportunities for your child and helping to link them with a DES.

Parents in Perth seeking to understanding how to navigate the NDIS are invited to attend the free disability expo from June 11–June12, 2021.

Mandy Maysey is the president of the Tourette Syndrome Association Australia. She became involved with the TSAA four years ago when her three children began showing signs of Tourette Syndrome. Mandy also works as a teacher aide in special education.