IF you are a parent of a child with special needs, you are definitely in need of support.
There may be days where you feel all alone in your struggle, that you have not had the opportunity to seek encouragement from those who have gone through similar roads.
There are many amazing non-governmental organisations in Malaysia working hard to make a change by providing services to, or advocating on behalf of, children with disabilities.
The Malaysian Partnership on Children with Disabilities was set up in 2014 which includes non-governmental organisations, activists, parents and Unicef Malaysia, to support and unite the work that is being done all over the country.
One of them is Kiwanis Down Syndrome Foundation (KDSF) National Centre in Petaling Jaya, which is a non-profit organisation dedicated to helping children with Down syndrome from 2 months to 6 years old.
Since its formation in 1989, close to a thousand children with Down syndrome have graduated from the special education programme offered by the centre.
According to KDSF Parents Support Group president Dr Asrul Abdul Wahab, children with Down syndrome almost always have some degree of intellectual disability.
“They learn more slowly and have difficulties with complex reasoning and judgment. The degree of intellectual impairment, however, varies tremendously. There is no ‘cure’ for Down syndrome but there is much that can be done to help someone with the condition lead a healthy, active and more independent life.”
At KDSF National Centre, the children go through three main stages of learning — Infant Stimulation Programme (ISP) for infants from 2 months to 2 years old; Toddler Programme (TOD) for toddlers from 2 to 4 years old; and Special Education Programme (SEP) for children from 4 to 6 years old.
“Each stage has its own objectives. The ISP helps to strengthen the infant physically through physiotherapy and occupational therapy so that he or she can achieve his or her early developmental goals like crawling or walking.
“TOD emphasises on other skills development such as early language, pre-academic activities in an environment of fun and play while SEP continues to refine the children’s skills in pre-academic and language,” said Dr Asrul.
With his own third child Ahmad Iyad Ghazi, who was diagnosed Down syndrome at birth almost four years ago, Dr Asrul started searching for a facility that offers early intervention programmes (EIP) .
“We came across KDSF National Centre with the help of a friend who works there.
“Ahmad Iyad started attending EIP since he was 2 months old and he has progressed every week and we are delighted with his developmental milestones (although with slight delay), he managed to catch up with his peers and benefited from the programme.
“He is now attending the SEP four times a week for three hours a day, and is building up on his literacy and pre-writing skills as well as independency, social and self-help skills.
“The tremendous support given by the therapists, teachers, the supporting staff and the Parents Support Group helps boost our confidence and keeps up our positive spirit in raising Ahmad Iyad,” Dr Asrul said.
Malaysian Advocates for Cerebral Palsy (MyCP) is another parents support group and registered NGO since December 2012.
It supports and connects parents and other cerebral palsy advocates such as doctors, therapists, educators, activists and others to share information, stories, experiences, opinions and feelings.
MyCP co-founder Rafidah @ Rafizah Ahmad, 41, said MyCP focuses on cerebral palsy because of the uniqueness of this condition and the challenges encountered by parents and families with cerebral palsy are also different than those with other disabilities.
“Because we are a national NGO and reach out to our members on Facebook, all information and sharing are mostly relevant to our local problems and scenarios.
“In our online group, we have several directory listings of rehabilitation, education and daycare centres, rehab equipment suppliers, alternative and complementary treatments and assistive equipment.
“We also collaborate with other organisations to organise training and events to parents and caregivers,” said Rafidah.
She also added that awareness on cerebral palsy in Malaysia is low, not only among the public, but also among parents of children with cerebral palsy.
“MyCP aims to create this awareness and empower parents not only to make themselves heard by voicing out against all types of discriminations and be the voice of their disabled children, but also to play active roles in making our disabled children more visible and involved in the community and fight for an inclusive community,” she said.
Rafidah’s daughter, Izdihar Janna Adzly, 10, has cerebral palsy, a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development.
Janna started her therapy at 8 months old, attending physiotherapy and occupational therapy at hospitals.
When she was 4 years old, she went to a Community-Based Rehabilitation Centre (known as PDK, Pusat Pemulihan Dalam Komuniti) in Semenyih.
At 5 years old, Rafidah enrolled her in an Early Intervention Programme in Spastic Centre, Petaling Jaya. At age 6, she went to an integrated special education pre-school programme in a government school in Kajang.
She finished her Year One primary school in a government school in Semenyih under the integrated special education programme and later transferred to another school in Kajang under the same programme.
Starting from last year, Janna goes to Atfal Jannah, a private special needs centre in Bangi, focusing more on academic and conventional therapies as well as to a conductive education centre in Hartamas.
Muhammad Anaqi, 12, who has Down syndrome, starts his daily routine between 5.30am and 6am.
He showers and puts on his uniform himself and takes half a teaspoon of black seed oil and a teaspoon of honey before having his light breakfast. Muhammad attends the Adni Islamic School and he is now in Primary 2.
“School officially starts at 8am and ends at 4pm. However, I signed him up for additional al-Quran recitation and memorisation class which starts at 7.15am. He also has swimming and martial arts classes on Mondays and Thursdays, respectively.
“The school also emphasises on prayer time, especially dhuha and zuhur (afternoon) in congregation, as part of the timetable.
“When he gets home from school, he understands that he needs to shower, perform his prayers and have dinner. He goes to bed at 9-9.30pm at night,” said Muhammad’s mother, Roslina Abdul Rahman.
She added that the family is blessed that Muhammad’s disability is not a physical one but falls under the category of learning disabilities.
And for this, she said the creativity of the teacher is critical as it is not just about imparting knowledge and making the child understand but, also it is about using teaching aids such as flash cards or carrying out hands-on activities.
At Adni, each classroom has a main teacher and a second class teacher.
In addition, the school employs a special needs teacher to manage the children at subjects they need assistance in and share brain gym exercises during physical education.
“Parents will always hope the school can provide better facilities and services. I would like for Muhammad to experience attending school with typical children so that he is able to mix, integrate and function well within society,” she added.
Roslina said the education system for special needs children should be flexible and open as the developmental growth of typical children is not the same between one child and another, and this is more so for children with special needs.
In addition, she believes that emphasis should be on strengthening their fine and motor skills.
This article is the third of a four-part series on special education.