User:Shai de vletter sont

“A journey of discovery” by Arahni Sont, published in Opening the Doors – The Hidden Life of Carers, Holdsworth Community Centre and Services, Sydney, Australia 2008

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 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 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.

Receiving ASPECT award from the Minister for Ageing and Disability Services

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.