An occupational therapist working with a dyspraxic child to improve coordination and balance.

By S.S. YOGA

S. Joga often talks openly about the problems his youngest son is facing. Asking and telling people about his 10-year-old son’s struggles with a learning disability have led to some useful insights and tips.

“You never know who might be able to help you with information or resources, or contacts. I found my son’s piano teacher (who teaches special needs children) after talking to my electrician about him. You just have to keep on telling and asking,” says the father of three.

Joga’s son, Nades*, has been diagnosed as having dyspraxia and dyslexia. But long before he got a formal diagnosis, Joga and his wife V. Vicky were convinced their son needed help because his speech was delayed.

“He crawled and walked at all the right times. But he never actually started speaking until he was four. He would only say one word and despite us prompting him, he never repeated that word,” recalls Joga.

Family and friends reassured them, saying some children develop speech differently.

“We thought he looked okay physically, so perhaps they were right. Or perhaps we didn’t want to think he had a problem?”

But Joga and his wife couldn’t stay in denial, and they started actively looking for help for their son.

One of their biggest challenges was the difficulty in getting an accurate diagnosis. They first sent him to Hospital Universiti Kebangsaan Malaysia’s (HUKM) Child Development Centre for an evaluation. At the fourth visit, the doctor told them Nades had components of dyslexia and possibly a bit of Attention Deficit Disorder (ADD).

It was, however, at a private speech therapy centre that Joga first heard that Nades has dyspraxia, a neurological disorder that affects motor movements as messages from the brains are not effectively transmitted to the body – in the absence of any weakness, sensory loss or physical impairments.

It is a disorder that is not widely known, and difficult to detect as it is also usually a subset of other learning disabilities such as autism. Diagnosis usually involves tracing a child’s development, as well as testing for specific abilities that involve planning and sequencing.

T. Sasha* went through a similar journey. She was told her then-seven-year-old daughter, Anita, had problems with attention deficit, concentration, eye coordination, self-esteem and confidence at a government-run centre for the disabled in Ipoh. But the only help they could extend was in dealing with Anita’s eye coordination.

By then Sasha had quit her job in banking to focus fully on Anita, and she had even opened a kindergarten when she couldn’t find a suitable preschool for her daughter.

More importantly, Sasha took the initiative to educate herself on learning disabilities as she felt there was a lack of expertise and services available to help Anita, especially in the small town they lived in.

She took courses in teaching children with dyslexia, including an advanced one. Sasha also enrolled in a special education course at Universiti Sains Malaysia, Penang. She also attended a workshop at Nottingham University Malaysia campus on how to teach maths to children with dyscalculia.

From her observation of Anita’s development, Sasha is convinced that her daughter had dyspraxia.

“It is the same everywhere; they would ask me again and again what is wrong with her. I would tell them I think she suffers from dyspraxia and that’s it, they would accept it,” says the determined mother who has tried various ways to help her daughter.

A music session where the students learn coordination, motor planning and speech.

Both Nades and Anita attend regular school.

“He attends regular school but is sent to the rehab classes for Bahasa Malaysia and Mathematics. He receives individual attention so it helps him. But we don’t want to depend on just the school, so we spend lots of time with him at home doing our own early intervention programme,” says Joga.

He notes that Nades is not clumsy and generally has few issues with gross motor functions, although he struggles with his handwriting. He goes to HUKM once a month for occupational therapy to improve his muscle tone. Nades also attends swimming lessons with an instructor who teaches special needs children, and can now swim half a lap.

Anita is now 15, and finds attending a special needs class in regular school tough.

“Having dyspraxia does not mean that you are not intelligent. It just means it may take longer to learn how to do things and to remember how to do the things you have already learned,” explains Anita.

Aini Anuar, a speech and language therapist, showing a student how to form syllables.

Her general knowledge is better than some of her peers but because they are in the “normal” classes, “they think they are so much better than me. I’m hurt that they judge me because I’m attending special classes.”

Even though the Government provides some facilities for special needs children, they are inadequate and do not fully address the needs of those with learning disabilities. The onus is on parents to seek services to deal with their children’s problems, and these interventions are often costly.

Last year, Joga took Nades to a private centre where therapists did extensive tests on the way he learns, and they gave an in-depth diagnosis of his problems. They then came up with a programme to address some of his issues.

“There are 22 sessions and every four sessions cost RM600. So, it’s quite expensive,” says Joga.

The lack of support services for children with dyspraxia, he believes, is because there is so little awareness of the learning disorder in Malaysia. Joga is keen to start a support group for families with dyspraxic children so they could all share information and knowledge, and also lobby to raise awareness of dyspraxia.

Call Joga at (016) 223-6829 if you are interested in joining the group. At dyspraxia.wallinside.com, Sasha documents her experiences with Anita.

Read about the writer’s own experience with dyspraxia at bit.ly/dyspraxia.

* Names have been changed.

Difficult to diagnose

Dyspraxia is generally not well known, so doctors and therapists may not have enough knowledge and experience to do an assessment or diagnosis. Consultant clinical psychologist Dr Alvin Ng Lai Oon says that one of the problems is that many of its symptoms, taken singularly or in clusters, mimic those of other conditions.

“Being clumsy and uncoordinated could point to a neurological problem. Some symptoms might lead a doctor to conclude that the child might have some attention deficit disorder and so on.”

Some of the red flags of dyspraxia – a neurological disorder that affects motor planning and coordination – are difficulties in balancing, poor timing and activities such as dancing and marching, a general lack of awareness of body placement and spacing.

“Other difficulties include fine motor movements such as hand grasping skills and finger manipulation of objects. These can be seen when working on arts and crafts projects where manual dexterity (ability to use fingers) is needed. Children with dyspraxia would typically have difficulty in cutting and pasting, eating with utensils, buttoning/unbuttoning, handwriting, typing, managing touch screen devices and so on,” details Dr Ng.

He adds that even speech production could be problematic and erratic as intonations and enunciations could be abnormal. Speech may also be disorganised and unclear.

“Due to these difficulties, it is common for children with dyspraxia to express frequent frustrations and have emotional outbursts, leading to lowered self-efficacy and self-esteem due to frequent failures and criticisms,” says Dr Ng.

So who, then, does a parent turn to if they suspect their child has dyspraxia?

The first stop, he says, is the paediatrician’s for an overall check. Then, get a referral to a paediatric occupational therapist for an assessment if there is suspected dyspraxia or motor-coordination dis order.

“It’s also good to have a comprehensive intellectual ability test by a qualified psychologist (clinical, developmental, educational) to also rule out intellectual disability/mental retardation, and to determine the extent of the motor coordination problem affecting learning and non-verbal reasoning.”

It is also prudent for parents to learn as much as possible about dyspraxia so they know what questions to ask their doctor.

Dr Ng says some of the pertinent questions parents should ask their doctors are whether the child has dyspraxia, or if his motor movement problems related to other disorders such as autism, or medical conditions like a brain injury or motor-neuron diseases.

If parents think they have not been given a satisfactory answer, they should seek a second opinion. Due to the lack of expertise to diagnose dyspraxia, it is not known how prevalent the disability is in Malaysia.

“I can’t in all seriousness give you any numbers. I don’t think anyone in Malaysia can, because how do you even get statistics if you don’t have the tools to accurately diagnose it?” says Dr Ng.

“Early intervention programmes for dyspraxia are rare due to the lack of trained occupational therapists within the field. Government hospitals have a long waiting list. One appointment a month with the occupational therapist is not adequate enough for any kind of early intervention,” says Dr Ng.

He encourages parents to learn intervention skills from the occupational therapist and perform them at home with their children. He also cautions parents to not accept Global Developmental Delay as a diagnosis.

“It is not a diagnosis, but an indicator of the need for further specific assessments. It’s a doctor’s way of saying, ‘I’m not to sure what this is, but I know there’s some delay’.”

What is important, he says, is to detect what is delayed or in deficit, and find out how to go a bout remedying it.

Help is at hand

Many parents of children with learning disabilities have to seek out intervention and remedial programmes. Some spend a lot of time and money taking their children for various therapies – from speech sessions to occupational therapy and special education tuition.

These days, there are more centres and hospitals that cater to children with special needs such as WQ Park Health and Rehabilitation Centre in Kelana Jaya, Selangor.

Dr Taayah: 'For everyone, we do a very detailed test and clinical assessment.'

Consultant rehabilitation medicine physician Dr Tunku Nor Taayah Tunku Zubir says the centre devises early intervention plans for children with learning disabilities, including dyspraxia.

“Many of our children are referred to us by other physicians, and some come with a diagnosis or a request for further assessment. Some are self-referrals. But for everyone, we do a very detailed test and clinical assessment. But if the child is too young some of the tests cannot be employed.

“During the assessment, I will look into the medical, developmental, communication, motor and coordination, academic and cognitive aspects. I will then refer to the appropriate therapist, be it a physiotherapist, occupational therapist, speech therapist and/or special needs teacher,” says Dr Taayah.

Each of the therapists will then do an individual assessment, and the team will draw up an individualised plan for the child. Dr Taayah says they will set goals for the child to achieve within three months. The results will be reviewed to see if they can go up to the next level or tweak some components.

Another centre that provides support services for children with learning disabilities is Early Steps Care Centre in Cheras, Kuala Lumpur. It is a social community project that was started in July 2000 by the Cheras Baptist Church.

“We cater to two age groups here. The Early Intervention Programme (EIP) is for children aged three to six. And for the seven to 12-year-olds, there is a school-age programme. At present there are 17 children in each programme,” says management committee chairman Jacklyn Chang.

There are currently five trained teachers, three part-time teachers and five volunteers at the centre, and they run half-day classes from Monday to Friday with a break on Wednesday.

They cater to most of the spectrum of learning disability disorders, including dyspraxia. Students pay a fee, but there is a partial subsidy and the centre relies on donations.

“When a child comes to us we do our own assessment, which we think is quite comprehensive. Sometimes we find things that weren’t detected in earlier diagnosis, or the diagnosis was incorrect,” explains Chang.

Individual plans are then designed for each child. Chang says the centre employs the Robert Deller curriculum and use strategies such as Makaton sign language. “If improvement is seen in the child after two or three months, their study plan will be changed, and every week the teachers will assess the child’s progress,” says Chang.

The EIP classes are conducted one-to-one and the centre encourages at least one parent to accompany the child throughout the session.

For more information on WQ Park Health and Rehabilitation Centre, visit wqpark.com.my or call (03) 7804-4171/8171. For Early Steps Care Centre, log on to earlystepscc.blogspot.com or call (03) 9131-5907.