Mental Health Month in NSW, Victoria and the ACT and National Carers Week, 13-19 October, 2019.

This year the theme for Way Ahead’s Mental Health Month is “Share the Journey”, so I thought I would share mine. Raising my son initially in Mozambique for 10 years and then Sydney led me to become an active and committed carer advocate. I was a carer representative for Carers NSW for 10 years and a carer advocate with Mental Health Australia for 7 years. I wrote the chapter “A Journey of Discovery” for the book “Behind the Doors - the Hidden Life of Carers” that was published in 2008[1]. It describes the years in Mozambique and the alternative therapies we used for my son. I have included the chapter in the latter part of this article.

Since my return to Sydney in 2001, I have been on a number of Boards and other Committees and have recently joined the Carer Reference Group of One Door Mental Health. As a carer representative, I participated in over 200 activities including policy discussions with Government, conferences, research activities, producing a MOOC on Disability and a number of public speaking engagements for 3DN UNSW (Department of Developmental Disability Neuropsychiatry) and others. In recognition of my contributions, I was selected by the University of NSW Business School for their “Facing Equality” project this year, received a NSW Government Carers Award in 2011 and an ASPECT (Autism Spectrum Australia) Carer Recognition award in 2007.

The aim of Mental Health Month is to encourage people to think about their mental health and wellbeing, regardless of whether they have a lived experience of mental illness or not. This month also gives people the opportunity to understand the importance of mental health in one’s everyday lives and encourages people to seek help when needed.

National Carers Week is about recognising and celebrating the outstanding contribution unpaid carers make to our nation. There are over 2.7 million family and friend carers in Australia providing 36 million hours of care and support every week* to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. The replacement value of that unpaid care is $1.1 billion per week. Anyone at any time can become a carer. National Carers Week is an opportunity to educate and raise awareness among all Australians about the diversity of carers and their caring roles.

Earlier this year I was an adviser on the development of the new DSS Carer Gateway project and was interviewed by a journalist. This is the interview.

How did you start to be a carer?

Before I became a carer I had an international career in finance, travelling and living in many countries. In 1990, my son was born in Sydney, and soon after we moved to Mozambique.

I guess I became a carer when my son was born, but for me the role only really started when he was about 1, and I started to notice things weren’t quite right. He wasn’t talking and had repetitive behaviours. We took him for lots of tests, both in Australia and South Africa.

When he was about 2 years and 9 months, he was diagnosed with global developmental delay. Much later – when he was 10 – he was also diagnosed as being on the autism spectrum.

When he was diagnosed with developmental delay, we were told he would never speak and that we should use sign language - which we did not do.

What is happening now?

My son is now 28, and he’s a radio presenter!

That’s one of the reasons I wanted to tell this story. We were told he would never speak, and yet now he talks all the time. He does the Community Billboard with Eastside Radio 89.7 FM and talks about what’s on that week plus everything that interests him – sport, art, all sorts of things.

It’s incredible to hear him on the radio and I am thankful for the speech therapy he had. We tried a lot of different traditional and alternative therapies over the years for both the developmental and autistic problems. It’s been a long road.

He’s now doing a course with the Community Media Training Organisation, and he’s also an artist with participation in 21 art exhibitions[2] to his credit. He moved out of home when he was 22, and lives in a share house. He rings me often and spends 2 nights a week at my house.

Of course, things aren’t always plain sailing now. When my son was 18 he developed mental health problems. These have continued and have been the most challenging aspects of his care.

What is the hardest thing about being a carer?

Doing it on my own has been one of the hardest things about being a carer.

I returned to Sydney when my son was 10, because he needed better schools and treatment than we could get in Mozambique – which was then the second-poorest country in the world. My son’s dad stayed in Africa, and I never re-partnered.

I do have good friends and some family to help, but it is not the same as having a partner.

It can be hard to find the resilience, courage and energy to keep going. And the feeling that you have to keep going, because there isn’t anyone else, can be harder still.

I try to stay positive, and I think in general I’m a positive person. But in some ways, I think many carers are always grieving. We’re grieving for what might have been, for the ‘if only’. At the moment I’m grieving because my son does not have a girlfriend and may not ever marry. I’ll never be a grandmother. It takes constant vigilance to not compare myself or my son with other people.

What is the best thing about being a carer?

Having someone in my life with mental health problems completely changed my path, and making a difference has been one of the best things about being a carer.

When my son started to have mental health challenges I was thrown into dealing with the mental health system. I quickly became an advocate for change. I had been a Carers NSW representative since 2005 and attended many policy and stakeholder meetings. In 2010 I became a member of the MHA’s National Register of Mental Health Consumers and Carers. Then in 2014 I was asked to be on the NDIA Mental Health Sector Reference Group.

Being a spokesperson and being able to influence policy has given me a sense of purpose. My work included being an advisor to Mable, the first care platform in Australia and I am currently an advisor to Centro ASSIST that helps service providers transform under the NDIS.

I feel this path has been a good use of my skills and education, and I really like that I’ve had a positive impact. It has made my caring role into something that is not just for my son, but for many other people.

What have you found that helps you?

Having a break has always been essential –having a massage, going out with friends, enjoying music and sport, just taking my mind off my responsibilities.

I have a carers group that has been together for more than 10 years. We meet in my home, and they are a great source of support. When my son was younger, I asked friends and family for help. Now we can ask for paid support from the NDIS, which is a good thing and I think will help many more people.

What would you like to tell other carers?

Look after yourself. Caring is stressful and you need to look after your health. I probably didn’t do enough healthy eating or meditation so I’ve had a few health problems.

Have other interests – find a hobby or a sport you like. If you can keep working it’s a great way to have a break, interact with colleagues, and gain a sense of achievement. Find a workplace that’s flexible and will support you – I think that’s a lot easier these days.

And it’s important to find your tribe. There are many advocacy groups for different conditions and it’s good to be with people with similar challenges. You can find out about resources –schools, therapies, events – and keep up to date with what’s out there. We’re lucky that in Australia there is so much support available.

[1] In 2008, a number of carers wrote chapters for a publication called “Opening the Doors - The Hidden Life of Carers”. It was edited by Lyndall Hough and published by Holdsworth Community and Services in Woollahra. My chapter covers raising my son with special needs whilst living in Mozambique and later Sydney, and is titled " A Journey of Discovery".

[2] His work is currently in the “Beyond the View” exhibition at University of Sydney as part of the Verge Gallery and Uni2 Beyond alumni and students show that goes till January 2020

Maputo is a city of 1 million people on the shores of the Indian Ocean. Often called the Paris of Africa, it has wide tree lined boulevardes and Portuguese inspired colonial buildings. And it was here, in the 2nd poorest country in the world, that I raised my son Shai till the age of 10. Mozambique was at the tail end of a 20 year civil war which had started after the war of independence from the Portuguese in 1974. The Portuguese had fled the country, leaving the Mozambicans to nationalise all the factories and with very few skilled managers to run them. The ensuing civil war meant that most of the factories had been crippled by a lack of raw material supplies, due to attacks on the roads from neighbouring South Africa and Zimbabwe. There was little to buy in the shops – only toilet paper and plastic buckets. There was one supermarket for foreigners, the Loja Franca, where US dollars could be used to buy groceries.

Shai means “gift of God, the light” in Hebrew. Shai was born in Sydney with the great expectation of a natural birth. After 6 days of labour, inducement with oxytocinin and medical incompetence, I was given an emergency caesarian. After 10 weeks, I packed our bags and we moved to live with my partner in Maputo.

I was 31, a career girl who had already lived in five countries whilst working as an investment banker. I loved a challenge and discovering new places. I remember how I felt on that first flight – the excitement and trepidation with so many unknowns – a new baby, a new country, a new language to master, Portuguese. My partner had recently lost his rented house, so we moved into a simple hotel on the beachfront, outside of Maputo centre. Due to the civil war, paralysed economy, and shortage of housing stock, we moved about 8 times in the first 2 years before building a house of our own.

At about 7 months of age Shai developed a very high fever after receiving his triple antigen shot. I am not sure if this episode is what caused his autism or not – or perhaps it was the stress during labour and delivery. At 9 months I realised that Shai was not responding to me as he should. He would stiffen when I held him and he did not engage or make eye contact. At 19 months we had his hearing tested as he had not spoken at all. By 22 months we had our first diagnosis of “global developmental delay”. We were told that he would probably never talk and that we should start sign language (which we did not do).

And so the journey began for me to discover who was this little boy Shai that I had brought into the world. I hoped that by finding his voice, his ability to communicate, he would become part of this outer world and closer to me. I had to balance this desire to help him, with my desire to continue my career in finance. My mother and I searched the internet to find suitable therapies that would help my little boy to speak. That was our first concern at the time. With Mozambique being such a poor country, there were no services available to help us. When he was three, we travelled to Paris for Shai to undertake Tomatis Inner Ear Therapy, as he was still not speaking. He had some speech therapy and OT in Maputo, attended a multinational pre- school and had an English - speaking nanny.

We then heard about the Institute for the Achievement of Human Potential (AIAHP ) in Healesville, Victoria which offers a program based on the “patterning” therapy devised by Glenn Doman at the Institutes for the Achievement of Human Potential in Wyndmoor, Pennsylvania in the USA . Shai was 4 ½ years old at that time and made loud, screeching noises and was very “hyper”. He could be fixated for hours on Lego or trains and he often had obsessive compulsive and repetitive behaviours. We decided to do the program in Maputo using our five household staff to assist us. The development program was done for 40 hours a week and consisted of intensive physical and intellectually stimulating exercises: patterning, creeping, crawling, rolling, climbing, spinning, plus masking and flash cards of words (about 3000 words) and later ‘bits” of intellectual information (about 1000 “bits”) which I made on the computer. After 18 months of crawling and creeping 4000 metres per day, Shai progressed to walking and then running.

Shai was truly fantastic and did the program every day from Monday to Friday. We used a reward system of points which, when added up, earned him both weekly awards (a video or computer game, an outing) and also quite substantial rewards for doing the program. These included riding an elephant in Holland at a circus, swimming with dolphins in Australia, and visiting Lego Windsor in England.

Shai said his first word “tractor” at 5 years of age, about 6 months after starting the program. He repeated that word about 3000 times. We did the program intensely for 2 ½ years then reduced this to a “maintenance program” of 8 km jogging per day and intellectual “bits” and word flash-cards daily until Shai was 10 years old. He also had a horse called “Oliver Twist” and learnt to ride. We also travelled to Washington when he was 7 to do the “Fast ForWord Listening Program[1]” from the Scientific Learning Corporation and then continued this at home in Maputo on a daily basis for 18 months.

When Shai and I returned to live in Sydney, Shai was 10 years old and I was unsure that I could cope raising my son alone. He was finally diagnosed as being on the autism spectrum, his speech was very difficult to understand and he used only about 400 words. I realised that my career aspirations would take second place to ensuring that Shai developed to his full potential. As his father remained in Africa, I undertook less demanding work to enable me to cope with being a sole carer.

Shai is now 17 and a sociable, talkative Sagittarius. He is considered to have a mild to moderate intellectual disability and autism. In the past 7 years, Shai has done Little Athletics, soccer, Nippers, RDA horse-riding, surfboard riding lessons, basketball, karate, gym, golf lessons, sailing with Sailors with Disabilities, salsa and dance lessons, private tennis lessons and tennis camps, private and group swimming lessons, guitar and piano lessons. Since 2004, Shai has played baseball with Arncliffe Scots Baseball Club and is now in the seniors Grade 8. Shai can also ski and has attended the DWA Special Olympics ski camps. In 2007 he took part in the movie about autism called “The Black Balloon” as an extra.

As there were no suitable schools in the eastern suburbs, Shai attended MUSEC School in Ryde and then the Warrah Special Steiner school in Dural from 2003 to the end of 2007. The school had 18 students and there were 4 students in his class. He thrived in the spiritual environment offered by the teachers and also learnt a lot with the individual attention. He is now completing his schooling at Mater Dei Special School in Camden and attends a ‘satellite class” at John Therry Catholic High School in Rosemeadow.

He has exposure to mainstream children at the holiday camps of Camp Kedron, teen art and photography classes at the Art Gallery of NSW and Generation Next parties at the MCA. Despite all my efforts and Shai’s desire to have friends and “hang out”, he has no mainstream friends and few friends at all, due to attending schools very far away from his home. His best friend lives in Pennant Hills and comes for weekends to Shai’s house.

Shai likes to dance, sing and listen to music like all teenagers do. He is very good with computers and has his profile on YouTube (“shairocks”) and MySpace. He has made and uploaded 6 videos to YouTube (without any help from me) on topics he cares about (Vote Kevin, the electric car and global warming). Shai is continually asking questions and surprising me with his intellect (assessed IQ of 68-73). He is very interested in politics and current affairs in Australia and globally. He thinks of solutions to the world’s problems such as malaria, global warming, traffic congestion, war and death on the battle field.

· He said, “Mum, why don’t the Americans send robots to war instead of soldiers, so people won’t die”. The next week, there was an article in the SMH on the USA inventing a robot that they will deploy. The cost will be $270,000 instead of $4,000,00 for a person.

 · He said, “Mum, why don’t they put the malaria spray in the petrol tanks of cars and it will then be emitted in the air and kill the mosquitos”.

· Shai told me in 2007 that he thinks cars should have helicopter rotor blades on top so they can fly up and avoid traffic congestion. In July 2009, the Dutch will launch the first flying car. · He has been passionate about the EV – Electric Car since 2006 and only now are Ford about to manufacture a new electric car due to the oil price increases.

He obtained 200 signatures for an ACF petition to the Canadian Prime Minister to stop seal killing in Canada and was awarded a Special Recognition by ASPECT/Creative Futures in 2007 for his achievements as a person with autism. Shai has worked casually at a local carwash and has started work experience at Pizza Hut on Fridays in Camden as part of his Year 11 program.

Shai’s teacher at Warrah for 3 years, Sue Killen wrote:

“While Shai might have some significant challenges in terms of, say, academic learning, he does, on the other hand, have a host of the more important higher qualities which elude many adults. He can be very quick to gain insight into himself and he generally has a high degree of moral integrity. In addition, he has a generous nature, he has a very wide interest and knowledge of the world and community around him, and he can translate learned wisdom into social conscience”.

I have learnt so much in the journey of discovering my son Shai. These include patience, unconditional love, perserverance, resilience and tolerance. He is a wonderful advanced “soul”, kind and generous. He can get anxious with change/new situations, due to his autism. He likes to know where his things are and gets upset if he mislays things. He often talks repeatedly about a topic that interests him and can be demanding and “want” lots of things. When reminded that people in Africa have nothing, he desists. He would love to have a girlfriend but has not had much exposure to girls and can get nervous around them at first. He meditates every day and calms himself with deep breathing and relaxation exercises. He has never taken any sort of medication.

It has been such a wonderful and worthwhile journey to discover my son Shai, “the light and gift of God”.

26th June, 2008

Biography of the writer, Arahni Sont

Arahni Sont holds a Bachelor of Economics from the University of Sydney, an MBA from the AGSM, and a Graduate Diploma from the Australian Institute of Company Directors. In a career spanning 20 years and 5 countries, she has held senior positions in finance and marketing and become fluent in three European languages. During her time in Mozambique, she worked as a World Bank advisor on privatisation to the Mozambican Government and as Marketing Manager with a large commercial bank. Arahni has been a member of the board of the Holdsworth Community Centre and Services since July 2004 and an advocate to Government for improved disability services. She has consulted in marketing and fundraising since 2005 and in 2008 became the Resource Development and Marketing Manager for Habitat for Humanity Australia. She loves studying, the arts and playing baseball with Shai’s team, Arncliffe Scots.

[1] Available in Australia now at Sonic Learning