Every step counts
Three-year-old Zara Azzalea Zainal Azahar, who has cerebral palsy, is determined to walk without help. She is motivated to try harder at her conductive education sessions, which use a holistic therapy developed in Hungary that aims to help disabled childr
THREE-YEAR-OLD Zara Azzalea Zainal Azahar’s face is solemn with concentration as she cautiously walks towards her therapist and teacher, Alexandra Major-Bacskai. Her two friends, Torres and Sueann, cheer her on from behind.
“Come on, Zara,” cheer Sueann and Torres from the padded mat at the centre of their classroom, where they wait patiently for their turn at the bars.
Her classmates’ encouragement spurs Zara on: her steps get firmer and faster (though MajorBacskai gently reminds her to take small steps), and there’s even a hint of a smile on her lips. Her grip on the miniature canes she uses as support relaxes.
When she gets to the wall at the far end of the room, MajorBacskai helps her grab on to a climbing frame that’s fixed to the wall.
More confident now, Zara climbs up to the top of the frame, grabs a soft toy hooked onto the rail and then comes back down with ease.
And then she smiles. “Good job, Zara. Now let’s walk back to Torres and Sueann,” prompts her teacher.
For a typical three-year-old, such a feat would be ordinary.
But for Zara and her friends at the Step and Smile centre in Sri Hartamas, Kuala Lumpur, every step is a milestone – a step closer to independence.
Zara and Torres have cerebral palsy and Sueann, muscular dystrophy.
The three have therapy at the Step and Smile Centre, a conductive education centre that helps children with cerebral palsy and other motor and neurological disorders increase their mobility through exercises and tasks.
“Zara wasn’t able to walk when she first joined us a few months ago. She could stand on her own with support but she had not walked. But look at her now.
Torres too couldn’t walk but he goes really fast now and has just started going to a regular school. And Sueann, with the help of her walker, can move about on her own too. She goes to malls with her family and walks on her own,” reports Major-Bacskai, with obvious pride at what her young students have accomplished.
Training for life
The Step and Smile Centre is the only conductive education centre in Malaysia.
Conductive education is a holistic method of learning based on the idea that children with physical impairments can increase their mobility through practical tasks with the guidance of a trained teacher, or conductor.
It was developed in 1945 by Andreas Peto, a Hungarian doctor who founded the Peto Institute in Budapest where Major-Bacskai trained as a conductor.
“Conductive Education is a combination of therapy and school. It’s like a school for the body and is based on active learning rather than passive exercises or therapies. You see, cerebral palsy doesn’t just affect a person’s muscles or movements; it affects their entire personality.
“The goal of conductive education is also to transform the child’s personality, not only work on their muscles. It’s about encouraging and motivating the child.
Instead of focusing on what a child isn’t able to do yet, we see what they can do and help them figure out how they can do more.
It is about building their confidence as well as their strength and increasing their motor skills. Zara was initially afraid to walk but once she learnt she could, she became more confident.
“We don’t know how far they can go or what their limits are and that’s why it is so exciting watching them learn,” says Major-Bacskai.
This approach has worked wonders for Manjula Aryadurai’s nine-year-old son Nikhil Looi, who first started conductive education when he was living in Dubai with his family. When his family moved back to KL last year, they joined Step and Smile where Nikhil continues to learn.
Conductive education, she says, differs from most therapies as it develops the child as a whole instead of just their physical abilities.
“It is specifically for children with neuromuscular disorders, and acknowledges that these children are mostly cognitively able, social and have needs much like typically developing children of their age.
“Before conductive education, Nikhil learnt how to use his muscles and perform tasks through physiotherapy, occupational therapy and speech therapy. He developed skills, but only by us or his therapists telling him what to do and how to do it.
“He had little understanding on how to control his muscles or how his body worked. He had little motivation or confidence to move.
“Conductive education puts him in a group environment with other children who have similar challenges. The conductors use a lot of verbal prompts when teaching him how to move, like ‘I lift my leg and step down’, ‘I put my head in the middle and sit tall’, sometimes in little songs or rhymes.
“As parents, we are also taught how to assist Nikhil in more effective ways. For example pulling on his hands to help him reach something will only make him stiffen and retract further but giving a little support at the elbow encourages him to reach out on his own.
“His motivation and self-confidence developed a lot through his teachers and his peers. He learnt how to sit up and support himself by pushing down on his arms, to feed himself simple food, to take steps with support. Academically he learnt to read, do Maths and type with a large keyboard at his
school,” says Manjula.
The lessons are always practical – children don’t perform exercises and tasks in isolation but in relation to practical skills they use in their lives, says Major-Bacskai.
“Instead of just teaching the child how to bend and stretch their arm, we teach them how to bend, stretch and comb their hair themselves. Instead of just walking, we teach them how they can walk independently to the table or the bathroom, for example. It is about helping them perform self-care skills and do things independently.
“For children with severe symptoms, their task may be to lift their head independently. This may be very simple for typical children but for children with cerebral palsy, these are huge milestones. Taking a few steps on their own is like running a marathon,” says Major-Bacskai.
The next step
The goal of conductive education is to help children with different abilities be active members of society – to move, play, study and work with their peers who are fully able.
Some of Major-Bacskai’s students have moved on to regular schools. But this isn’t always possible because accessibility remains one of the biggest challenges for people with disabilities.
One of Major-Bacskai’s students Izdihar Janna Adsly is 14, but her mother Rafidah Ahmad has not been able to enrol her in national schools.
“I approached three or four schools but it’s always the same excuse – they don’t have the facilities because she is in a wheelchair. Or they have no one to take her to the bathroom or help her move around. When I volunteer to be with her, they don’t want parents to be in the classroom.
“Our education blueprint guarantees equal access to children with disabilities but in reality, there is little access,” says Rafidah.