Marked by musicality, the ‘berbuka puasa’ affair at 176 Avenue saw two great Malaysian singers under one roof: Ning Baizura and Atilia Haron belted out tune after tune to an appreciative audience primarily made up of parents and kids from We Rock the Spectrum Kids Gym. Manicures, haircuts and an animated storytelling session kept everyone preoccupied until the golden hour of iftar.

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PARENTING an autistic child is extremely demanding, and the lack of guidance and information can have a massive impact on the child’s development and ability to cope with real-life situations.

To highlight teaching techniques and offer an insight on the matter, a special project called Project Haans for Autism Awareness organised by Universiti Kebangsaan Malaysia (UKM) students together with Pantai Hospital Kuala Lumpur was held.

The event, held at the medical centre, consisted of forums on the topic of parenting a child with autism as well as job coaching and inclusion. Additionally, a messy play demonstration by occupational therapists was conducted.

Event organiser and UKM postgraduate student from the Faculty of Education, Desiree Kaur, said, “Autism is a spectrum that manifests differently in each individual. UKM’s Faculty of Education (Special Education) course titled ‘Collaboration and Consultation in Education’ requires students to carry out a collaborative event with inclusive elements.

“Hence, the main purpose of this event is to collaborate with partners and provide a platform to share different perspectives for wider autism awareness and understanding. I am also a mother to a boy with autism and I hope Project Haans can be a guiding light or starting point for others out there who may be struggling for information.”Among the forum speakers were Nori Abdullah, co-founder of We Rock the Spectrum Ara Damansara, who is a mother to a boy with autism; and Mohd Adli Yahya, founder of Autism Café Project Malaysia, father to Luqman, a young man with autism.

They shared their journey as parents, the joys of parenting a special child and the challenges experienced.

Assoc Prof Dr Manisah Mohd Ali, a UKM lecturer whose area of study is Special Education, also shed light on the importance of inclusion from a young age, which could later help autistic children in gaining employment.

Also on hand was Mazayu Kasan, a qualified job coach who shared her role in helping youth with autism and other special needs gain employment.

Another panellist was Joshua Teow, who is autistic and presently working, thanks to the guidance of his job coach.

Pantai Hospital Kuala Lumpur’s consultant development and general paediatrician Dr Raja Juanita Raja Lope said, “It is important to understand the diagnostic process where autism is concerned.

“Since autism is a spectrum, it is an ongoing process. Acceptance is key to help a child on the spectrum achieve their full potential and hopefully, attain independence as adults.”

Occupational therapists from Sensory Play and Pantai Integrated Rehab joined forces to conduct a “messy play” session with children aged six years and below.

(Messy play is a type of sensory activity which is crucial in developing a child’s senses, gross motor, fine motor, cognitive and social as well as emotional skills.)

It also served as a demonstration to the attendees consisting of students, teachers and parents to young children.

Attendees were shown how to conduct simple activities in their own home or even in the classroom.

Another highlight of Project Haans was the bazaar organised by Autism Café Project that offered food items, cookies, handicrafts and T-shirts for sale.

Autism Café Project is a social enterprise that helps autistic youths start their own small business. Most youths with autism find it difficult to find permanent employment. Starting their own small business allows them to earn and eventually, support themselves financially.

Project Haans for Autism Awareness brought together various individuals, all of whom are passionate about raising awareness of autism. The organiser hopes this would turn into an annual event held in conjunction with Autism Awareness month in April.

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Every evening, Rembau MP Khairy Jamaluddin and his wife Nori Abdullah print out the next day’s schedule for their son Timor, detailing all his activities for the entire day.

The timetable is illustrated with images and visuals of the following day’s activities. Should there be last minute changes to the schedule, his parents would prepare the 10-year-old for the disruption to his routine ahead of time.

Such schedules are crucial in helping Timor maintain a sense of calm and order.
Timor has Autism Spectrum Disorder (ASD) and, as with many children (and adults) on the spectrum, an adherence to routine is crucial. A sudden interruption to a set routine could make him anxious and lead to tantrums.

In the seven years since Timor was clinically diagnosed with autism, Khairy and Nori have had to face the realisation that their child understands the world differently and, as such, needs to be nurtured differently.

“Honestly, you never fully come to terms with or understand completely a child with ASD,” admits Khairy. “They live in a neurological world that is completely different to people who are neurotypical. I will never fully understand what the world is like through Timor’s eyes. It’s good, in a sense, because everyday we are evolving.”

Timor started showing signs that he was developing differently after he turned two.

“He started regressing and seemed to be in his own world a lot. By the time he was three, it was quite obvious that he had issues. On his third birthday, we noticed that he didn’t want to play with the other children and was just focused on the slide. We went to see a developmental pediatrician who diagnosed him with ASD,” Nori shares.

Timor with his self-portrait. Though the 10-year-old loves to ride horses, swim andplay Minecraft, his favourite pursuit of all is drawing.

Hearing that their son has autism wasn’t easy, admits Khairy.

“Initially, it was a shock because it was a diagnosis that he is different. As parents, we’ve had to change our life plans, dreams and ambitions for him. Modify them to take into account that he has ASD. But we knew that we had to help our child become independent,” says Khairy in an interview at their home recently.

As unprepared as they were, Khairy and Nori knew that they had to hit the ground running and do whatever it takes to help their son navigate the world.

Timor had gone for speech therapy even before his diagnosis, and he started learning using the Applied Behaviour Analysis (ABA) method, one of the widely accepted therapies for children with autism.

At school, Timor is also taught life skills. He is now learning to memorise his parents’ phone numbers and his home address.

“Just in case he gets lost in the middle of a crowd or something, he needs to know this information,” explains Khairy.

Timor (in blue) gets along really well with his brothers Jibreil (in white) and Raif. Though they don’t spend all their time together, the three share a bond.

ASD is a neurological disorder, characterised by a cluster of symptoms that are often different in every child or adult, depending on the type and severity of their condition.

Individuals with autism often have impaired communication and social skills, scrambled sensory processing, delayed childhood development, an aversion to eye contact, tendencies towards repetitive behaviours and poor motor functions.

While there is no known cure for autism, early treatment and intervention can make a vast difference in the lives of those with ASD.

“We were never in denial. We just jumped into action, finding out what we had to do next. We started him on therapy right away and many things have happened along the way … we have evolved but everyday, we are still learning.

“Timor is in a good place right now but we know that it’s going to be a continuous effort. We don’t know what tomorrow will be like … his special needs are something we have to live with,” says Nori.

The best that he can be

Timor is the middle child of Khairy and Nori. He has an older brother, Jibreil, who is 11, and a younger brother, Raif, who is four.

“Jibreil, being a year older, is very familiar with his brother being on the spectrum. He understands the challenges. Because socialisation is a problem for Timor, the two of them don’t have long conversations that neurotypical brothers may share. But there is a close bond between the two. They may not talk, but they wrestle and rough each other up and play with each other.

“They are brothers and though they don’t spend all their time together, they realise that they are the closest person to each other than anyone else.

“And Raif? He seems to understand too. The way he treats Timor is different than the way he treats Jibreil. He is more respectful to Timor, actually,” shares Khairy.

Raif, adds Nori, hero worships his two brothers.

“He worships them both. We hope that this is him being aware and understanding their differences in a positive way.”

Like most children his age, Timor has many hobbies.

Like most children his age, Timor has many hobbies, says his father with pride. He loves to draw, swimming, inline skating, cycling … and he loves the alphabet. Timor loves Minecraft too.

“He rides horses, and he loves cold weather and snow. He is a happy child who has had a happy childhood and I personally think that he is an overall great kid,” says Khairy. About three years ago, Khairy spoke publicly about a watershed moment in his relationship with Timor after reading Uniquely Human, a book about autism written by Dr Barry M. Prizant.

“The fundamental message from that book is that we should stop trying to change the child (with ASD) to suit the world; we must change the world or our surroundings to accommodate children who are on the spectrum. That’s a big idea in neurological development thought and it has brought about a different way of approaching people with autism,” says Khairy.

So inspired were the couple by the book that they bought dozens of copies for friends and family, hoping to spread awareness about living with ASD.

Khairy and Nori recognise Timor’s unique talents and find ways to nurture them, on his own terms.

It also changed the way they approached Timor; it made them more aware of his unique talents and find ways to nurture them, on his own terms.

“We hope that he will grow up to be independent. As parents, I think we’d like to know that if we are not able to look after him 24/7, he will be able to do some of that on his own.

“We also want him to fulfill his potential. We don’t ever want to sell short our child with different abilities. Timor loves to draw … that’s one of his favourite pursuits and he is very good at it. He can draw straight lines without a ruler and in such detail.

“Who knows, he could grow up to be a draftsman or architect if he wants,” shares Khairy.

Access to therapy
Khairy and Nori are well aware that Timor is more fortunate than many in that he has access to early intervention and therapies.

To do their part in supporting other families, Nori has opened a special needs gym, a franchise from the United States called We Rock The Spectrum, to increase access to therapy for families who may not otherwise have the financial means to afford occupational and sensory integration therapy.

“Not everyone can afford therapy. It’s not cheap and it’s not that readily available. Timor has come as far as he has because he is so privileged to be able to get therapy and we want all children to be able to get therapy,” says Nori, adding that Timor wasn’t home during this interview as he was at the gym.

Khairy and Jibreil at the We Rock The Spectrum Gym for children at the launch about three years ago.

The indoor gym, open to both special needs and typical children, is equipped with specialised equipment used by therapists.

“We recently launched a programme called Therapy Through Play. The idea behind this is that everyone should have access to therapy. So we started a sponsorship programme to help families who really can’t afford the fee. Ideally, we want parents to come and learn what they can do to help their children too,” says Nori.

Timor’s parents’ message on Autism Awareness Month is, “Read up a little about autism. It may not affect you personally but there are many Malaysians on the spectrum and the greatest tragedy would be if, because society is unaware, we deny these children the opportuni­ty to reach their potential.”

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Kids gymnasium We Rock The Spectrum (WRTS) announced its long-term partnership with Microsoft Malaysia to enhance the development of autistic children in the country.

This partnership will include coding experience as part of the gym’s programme.

“We are trying to empower autistic children with technology, with the hopes that they can overcome challenges they face,” Microsoft MD K Raman (picture) told The Malaysian Reserve (TMR).

He said the partnership to include the coding programme is in line with the company’s efforts to democratise technology and bridge the opportunity divide.

“We believe empowerment begins with inclusion and technology should be shared with everyone, especially youths, as today’s digital natives are tomorrow’s digital workforce,” he added.

Microsoft organised an “Hour of Code” in collaboration with WRTS to commemorate the World Autism Awareness Day (WAAD) 2018 recently.

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PETALING JAYA: Although a little thin, Muhammad Daniel Mohd Idham looks like any other 17-year-old, but there’s something very different about him – he has never eaten solid food in his life.

Daniel suffers from an eating disorder brought about by his autism, which was diagnosed when he was seven years old.

His mother, Shuhaila Saidon, said her son refused to eat solid food and would only consume liquids such as milk or juices and food that has been blended in liquid form.

FMT met Daniel and Shuhaila at the Autism Youth Bazaar, an initiative by Autism Cafe Project (ACP) founder Mohd Adli Yahya and the daughter of former prime minister Abdullah Ahmad Badawi, Nori Abdullah, who is behind We Rock The Spectrum (WRTS).

Speaking to FMT, Shuhaila said when Daniel was three years old, her friends had noticed there was something different about him.

However, at that time, she did not know what to do about it.

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PETALING JAYA: Activists working to help autistic children today launched a bazaar featuring only products made by autistic youth, in a bid to help the community to be independent.

The Autism Youth Bazaar at the Evolve Concept Mall in Ara Damansara features more than 10 different booths selling items made by the autistic youth and their families. The items include cookies, cakes, handicrafts, paintings, jewellery and clothing items.

It was an initiative by the daughter of former prime minister Abdullah Ahmad Badawi, Nori Abdullah, who is behind We Rock The Spectrum (WRTS), and Autism Cafe Project (ACP) founder Mohd Adli Yahya.

Also present today was United Nations Children’s Fund (Unicef) representative in Malaysia, Marianne Clark-Hattingh.

Nori, who is the wife of Youth and Sports Minister Khairy Jamaluddin, hopes those interested to provide opportunities for autistic youth will come forward to work with her organisation.

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PETALING JAYA: The sun had barely risen when Youth and Sports Minister Khairy Jamaluddin and his second son Timor were getting ready for a morning walk.

All around them, other parents were raising their children’s spirits with motivating words and promises of treats afterwards at the 2.8km-long The Rock Walk 2017.

Father, son and his other family members led the 200-strong group for the walk yesterday morning to raise awareness for autism and also funds for the National Autism Society of Malaysia (Nasom).

Raising Timor, who is autistic, means Khairy is keenly aware of parents’ concerns on how to empower them to live independently as adults.

“Early intervention for autistic children is a good move but it is not enough to ensure they are cared for. As a nation, we cannot call ourselves developed or progressive if we are unable to care for all our people,” he said in his speech after the walk.

Things are about to change for the better as Nasom and the ministry are discussing details for a pilot programme offering skills training to school leavers with autism.

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WITH the opening of We Rock The Spectrum (WRTS), a US-based special-needs gym franchise, at Evolve Concept Mall, Ara Damansara, there is finally a place where autistic children can play with their friends without worry.

WRTS provides children of all abilities with a place in which to play and grow together.

The gym at Evolve Concept Mall offers 10 uniquely designed therapy-based equipment to help children improve their sensory stimulation and neural development, namely zip line, zip box with slide, crash pit, trampoline, tunnel, carpet swing, hammock swing, climbing structure, bolster swing and swivel rotators.

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We Rock the Spectrum, the rapidly-growing franchise that provides a sensory-safe gym for children of all abilities to play and grow together, announces its first international location to open in Malaysia on December 22nd. The company became a franchise in 2014, and in less than two years has grown to more than 60 locations in the United States. Each location features 10 uniquely designed pieces of therapy-based equipment that provide children with the sensory stimulation and input they need for improved development.

CEO and Founder, Dina Kimmel, opened the first gym in Tarzana, California in 2010 after her son, Gabriel, was diagnosed with autism. She struggled to find a place where he could be accepted and understood without having to apologize for his behavior. Upon opening, Kimmel received overwhelming local support — especially from the autism and special needs communities.

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PETALING JAYA: Youth movements who want to criticise or provide feedback to the Government on issues should do so constructively, says Youth and Sports Minister Khairy Jamaluddin.

“Although the youth may not agree with government policies or have a critical view of the Government, at least they can contribute constructively towards the development of the country.

“If they want to contribute to the development of the youth, as minister, I welcome them. But it must done positively,” he said after launching the first children’s special needs gym franchise at Ara Damansara here yesterday.

Khairy was commenting on the setting-up of a youth movement called Demi Malaysia as a counter initiative to the Government’s Malaysian Youth Parliament initiative.

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