Meera Murugesan
Raising a child with the condition calls for patience and perseverance
NURINA NAWI remembers the day she took her son to the playground near her house.
It was a beautiful evening but just as her 6-year-old ran gleefully to the swings and climbing frames, the whispers from the other mothers started.
“Budak tu tak betul. Jangan pergi dekat dia” (this boy is not right, don’t go near him), said one of the mothers as she and the other mums quickly moved their children away from Khair Dhani.
Nurina returned home defeated and heartbroken.
But like most mothers raising a special needs child, courage and perseverance has been wired into her DNA. So she wiped off her tears and put her focus back on Dhani as he’s fondly known.
She knows her son counts on her to make his world safe and happy.
Dhani was diagnosed with autism when he was 2 1/2 years old.
Up until then, Dhani met all his developmental milestones and had even started to say words like “mama” and “papa”.
But after that he started to regress. He became silent and withdrawn and did not make eye contact anymore.
He was assessed by a paediatrician who confirmed he had autism.
MAKING THE SHIFT
It was the start of a long journey for Nurina, a mother of three. The world as she knew it changed.
She was no longer an average mum raising three boys. She now had to channel her time and energy into learning about autism and finding places that could provide the help her son needed.
Driving her son to speech and occupational therapy became part of her daily routine and Nurina, who used to be a housewife, had to return to work so the family could afford Dhani’s therapy.
Nurina says there is much misconception about autism. People assume all autistic children hurt themselves or others, don’t like to be touched or hugged or ever venture out of their own, silent world.
But autism is a spectrum so raising one child with autism can be very different from bringing up another with the same condition.
It’s a reality only parents and caregivers of children with autism fully understand.
Dhani, who’s on the moderate level on the spectrum, used to be very hyperactive. Till now, he’s still non-verbal but uses hand language and gestures to indicate what he wants.
But the little boy’s reaction to his mother speaks volumes about his love and bond with her.
As Nurina speaks, he sits happily on her lap, flipping through a Sesame Street alphabet book.
He reads the letters out loud in a garbled manner but it makes his mother beam with pride.
A cute, gap-toothed smile lights up his face when he looks at his mother.
“After his diagnosis, I didn’t do anything for three months. There was much crying and anxiety but eventually we realised there’s nothing we can do to change it. The only way is to move forward.”
Dhani started therapy three years ago and since then has shown great improvement.
His attention span is better, he can understand instructions, he’s toilet trained and also able to socialise with other children.
Nurina says children with autism need around 15 hours of therapy a week to show improvement.
Dhani currently gets 12, with the remaining three hours provided by Nurina through home therapy. She sings to her son, plays with him, reads to him and helps him improve his day to day living skills.
Early intervention, she adds. is crucial for children with autism as is family support.
It would certainly help if people outside the family could show some understanding and compassion for parents of disabled children.
Usually, when people see an autistic child being extremely restless or hyperactive or having explosive temper tantrums in public, they have no idea of the child’s condition and lay the blame on bad parenting.
MUMS WHO PERSEVERE
Rosdalina Sumeri Deraman, whose only child, 13-year-old Ummar Taro Kumagai has autism, recalls an incident in 2013 when she was travelling with her son and extended family to attend a wedding in Kelantan.
At the airport, Ummar, overwhelmed by the sights and sounds and the anxiety of boarding a plane, had a full-blown temper tantrum.
Rosdalina remembers how people stared in shock and disgust and a security guard even came up to them and said Ummar couldn’t board the plane for safety reasons.
She was eventually able to calm Ummar down and he boarded the plane but the incident left such an impact that Ummar did not fly for a few years after that.
“I don’t want to judge those people at the airport. Perhaps if I didn’t have a child like Ummar, I too would have reacted the same way.”
As a baby, Ummar’s development was delayed. He crawled and walked much later than other children and even at 4, he couldn’t speak.
He was eventually diagnosed at 5 with mild to moderate autism and Attention Deficit Hyperactivity Disorder (ADHD) as well.
Rosdalina, an electrical engineer, quit her job to become a full-time carer for Ummar.
She says it used to be very difficult to take him to public places. He would be out of control and his tantrums were really bad. And when he was stressed, he would hurt himself.
Someone had to always accompany her when she took her son out.
But therapy has helped tremendously. He’s significantly calmer and more in control of himself today and attends the special education programme at a national school.
Rosdalina is also thankful that he has managed to handle puberty and the hormonal changes that come with it without too much conflict.
He still attends speech therapy though because he can’t yet speak in proper sentences.
His bond with Rosdalina is also very obvious. He constantly reaches out to touch or stroke her cheek as if to reassure himself that she’s near.
Rosdalina says he’s very sensitive to her moods because she’s his primary caregiver.
“If he can sense that I’m upset, even if I don’t show it, he will keep turning to me and ask ‘happy?’.”
She says children with autism may look normal but don’t behave in a normal manner so it’s often harder for people to show empathy or understanding for them and their parents.
“Having Ummar changed me. Without him I wouldn’t have learnt patience or the ability to deal with challenges. He softened me in many ways too, made me a better person.”
Roslina Mat Said, a civil servant and mother of four, says when her daughter, Hani Darina Muhamad Yamani was born, she was an extremely easy baby.
She would only cry for her feeds before settling back to sleep, so her parents never realised there was a problem.
But as she grew, although she met her other milestones, she remained non-verbal and hyperactivity was also a problem.
“At home, she would climb the grills, right up to the top. She was fearless and had extremely good balance.”
Hani, who’s 7, was diagnosed at 5. Roslina had to wait almost a year to get an assessment appointment at a government hospital, given the long waiting list.
Priority was given to autistic children with more extreme behaviour such as hurting themselves or others.
Hani is a high functioning child with autism. By watching YouTube videos, she has learnt to identify alphabets and numbers and in her recent mathematics exam, she walked away with a 92 out of 100 score.
She too attends a special education programme at a national school.
But she still struggles with verbal skills, so speech therapy continues.
Roslina says she loves to sing and dance and will mimic anything she sees on YouTube. She sings in her own special language as her verbal skills are still limited.
She too has shown remarkable improvement after therapy. She can follow instructions and socialises better with other kids and her own siblings.
“But she likes everything done quickly. I remember that there used to be a child who was slow in putting on his shoes and Hani was waiting her turn. She eventually reached out and shoved his leg into his shoe!” says Roslina with a smile.
But Hani has temper tantrums that can be difficult to manage sometimes.
Recently, she became agitated at a shopping mall when she couldn’t play with a toy she wanted and started rolling on the floor, kicking and screaming.
At times like these, Roslina has to wrap herself firmly and tightly around her child to calm her down.
Sometimes, people think she’s being rough with Hani and look on in disapproval until she explains that her daughter has autism.
“Her father and I try our best, even when it’s difficult and frustrating because we love her but at the back of our mind, there’s always the worry of who would do the same once we are gone.”
THE SMART WAY
IN an unassuming shoplot in Section 13 Shah Alam, amazing things are taking place.
Children with special needs have not only found a sanctuary but are taking meaningful steps forward.
Smart Integrated Therapy is run by Mahnorizal Mahat and his wife, Noorsyakira Husin, who themselves have a 9-year-old daughter with Global Developmental Delay.
Their daughter’s diagnosis and the ensuing search for appropriate facilities to cater for her needs, led them to buy over the centre which had been put up for sale by the previous owner.
“We realised how crucial it is to have these services because it can do wonders for the wellbeing of the special child,” says Mahnorizal, a financial controller with a mining company.
Therapy, while much needed for such children, is still out of reach for many parents due to cost.
But at Smart Integrated Therapy, the clients and their children come from diverse socio-economic backgrounds.
There are children of bus and lorry drivers as well as CEOs.
The centre provides both one-to-one sessions with therapists as well as playgroup sessions where therapy takes place in a group setting.
Everything, from speech and occupational therapy to physiotherapy and hydrotherapy is available.
Noorsyakira says they are open seven days a week and on a daily basis, they have about 20 children attending therapy. There are many more during the weekends.
Visit www.facebook.com/Smartintegratedtherapy
AUTISM RED FLAGS
WATCH for these warning signs in your child:
•No big smiles or other joyful expressions by 6 months or later.
•No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months.
•No babbling by 12 months
•No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months.
•No words by 16 months.
•No meaningful, two-word phrases (not including imitating or repeating) by 24 months.
•Loss of speech, babbling or social skills at any age.
Source: “Learn the Signs of Autism” — www.autism speaks.org