Early intervention gives hope

WINNIE Koay looked resplendent in her fiery red top as she stepped confidently on stage with a long, shining sword gripped in one hand recently.

She came in perfectly on cue to the music and for the next few minutes, all eyes in the room were on her as she flowed smoothly in time from one ‘taiji’ form to the next, showing such controlled poise, balance and grace that the Sibu audience was left breathless at times.

Earlier that day, Katie Carpenter showed no signs of nervousness or fatigue as she stood in front of the audience at an international conference, next to her professor father. Already, earlier that morning, this spunky young lady had helped him to facilitate a three-hour workshop attended by non-government organisations, government agencies and other members of the public.

As she shared with the audience about her experiences and opinions, participants admired the contents of a thick clear folder which contains Katie’s resume. The folder is just about bursting at the seams from the dozens of certificates recognising Katie’s academic achievements, training and skills acquired and voluntary work.

Winnie and Katie are what many other young people their age aspire to be – well-spoken, independent, confident and physically active.

However, what makes them truly outstanding is the fact that they have Down’s Syndrome, a chromosomal condition caused by the presence of all or part of an extra 21st chromosome.

According to the Kiwanis Down Syndrome Foundation website (www.kdsf.org.my), Down’s Syndrome occurs in approximately 1 in every 660 live births in Malaysia.

Down’s Syndrome is the leading cause of intellectual disabilities worldwide and usually causes delay in physical, intellectual and language development. Individuals with Down’s Syndrome are at greater risk of certain medical complications including congenital heart disease, thyroid disorders and hematologic malignancies such as leukemia.

Winnie and Katie are such a contrast to the negative stereotypes that many so-called normal people have about people with special needs.

Among the many stigmas attached is the association of the disabled with being the signifier and harbinger of misfortune and bad luck for the family.

Furthermore, in many Asian cultures where it is the filial duty of children to look after their parents in their old age, a child with special needs is often seen as an unwanted societal and financial burden.

For these reasons, Winnie and Katie are not only powerful demonstrations of the benefits of early intervention, but also influential catalysts for hope in families who have children with Down’s Syndrome and other special needs.

Dr Koay Teng Leong and Professor Dr Barry Carpenter (OBE) are Winnie and Katie’s fathers respectively. Both were in Sibu recently together with their daughters to participate in the recent 4th National Early Childhood Intervention Conference (NECIC).

Parents of children with special needs often describe a terrifying sense of shock and paralysing helplessness as they initially struggle to come to terms with their child’s disabilities.

However, Koay and Carpenter said that it was crucial to begin early intervention as soon as possible.

“I knew about Down’s Syndrome when I studied Biology in the university, but it was definitely a big shock learning that my own child had Down’s Syndrome,” said Koay.

He emphasised the importance of parents taking the lead and being proactive in educating themselves and seeking help from professionals.

“I feel that the most crucial thing is to get over the initial shock, recognise the pain and grieving and then avoid denial which is inactivity and impotency and get over to acceptance, which is crucial,” said Koay who is currently Associate Professor of Special Education at the Sultan Hassanal Bolkiah Institute of Education, University Brunei Darussalam.

“If you hang on to denial, the child is not going to benefit. From my own experience, early intervention is crucial to get the child assessed to determine her strengths, weaknesses and needs. From there, we need to get into positive action, seeking active help.

“Whatever we can’t do, we need to seek help and support from professionals. As parents, we should not just depend on others, we must do something,” he advised.

Both Koay and Carpenter stressed that it is parents who know their child best and that outside of therapy sessions, it is parents who shoulder the primary role in ensuring the implementation and continuity of early intervention therapies, especially at home and during day-to-day activities.

Thus, it is critical for both parents to be involved and to fully participate, and not just one party, which is usually the mother.

Carpenter, who is the UK Representative for Eurlyaid (Early Intervention) Working Party of the European Union and European Representative for the World Council for the International Society for Early Intervention, said that it was a mistake to assume that fathers were not interested in having a say in their child’s welfare or that they did not want to participate in early intervention.

He pointed out that special needs bodies and agencies should actively look for ways to engage with fathers as in many societies, men have the voice and thus, they could be strong advocates for the rights of children with disabilities.

Even something as simple as holding meetings outside office hours with both parents present, making a personal phone call to update fathers on their child’s progress  or organising a men’s-only outing for fathers of children with special needs headed by a male facilitator can go a long way in getting fathers more involved.

Just as important, it also gives fathers access to practical advice and peer support.

“Males tend to try to be strong and society usually expects them to be the protectors. The main worry is what happens when men are strong at the expense of their own emotions,” observed Carpenter.

“That’s why we need male engagement strategies. Do we really understand the needs of men? If we are not careful, we push them into stereotypes which may eventually break them or cause them to leave their families.”

“It is important to treat fathers and men as equals. We also have to recognise that men are different,” he noted.

Both Koay and Carpenter stressed on the importance of encouraging both parents to work together to resolve issues so that the whole family can move forward together.

“Early intervention should be a joint effort as it will be much stronger if both father and mother are involved,” said Koay.

“We should encourage parents to work together as well as other members of the family so that we can achieve better results,” he said.

Carpenter, who is also the academic director (Special Needs) for The Schools Network in the UK, also pointed out that effective early intervention goes beyond just the child’s parents, medical professionals and government welfare agencies.

It literally involves the participation and cooperation of the whole community – siblings, grandparents and other relatives, neighbours, teachers and peers at schools, religious institutions which the family is a part of, and even the family maid.

This is because what takes place in the wider scope of day-to-day living can be just as influential in the development and advancement of a child with special needs as what happens during therapy sessions.

Part of early intervention focuses on improving quality of life through inclusiveness in the community. A number of studies suggest that children with intellectual disabilities in mainstream schools tend to do better academically and socially than their peers in special needs schools.

Carpenter pointed out that children with special needs will eventually become adults with special needs. This is why early intervention needs to be made as widely available as possible as it is easier and cheaper to provide therapy to a child than it is to an adult who may have already developed certain traits which would be difficult to undo.

Many children with special needs who received early intervention are able to attain a high quality of life and even live independently on their own as adults.

Katie, Carpenter’s daughter, is one such example. She lives in her own home together with her housemate. Aside from a carer who only stays with them at night to supervise her morning routines, Katie very much lives her own life.

How far Winnie, Katie and their families have come is nothing short of extraordinary.

Koay and Carpenter’s families’ journey is far from over but hearing the paternal pride and love in their voices as they speak of their daughters, it is clear that the difficult challenges they experienced have been worth it as they see the seeds of their tears and effort come to fruition in the form of their daughters growing into the beautiful young women they are today.

Get help from NECIC

IN Malaysia, early intervention is still very much in its infancy stages, although it has come far over the last few decades.

One of the challenges faced by parents of children with special needs is getting access to information and professional advice.

The National Early Childhood Intervention Council (NECIC) is a coalition of parents, therapists, professionals from a large variety of NGOs and government agencies which acts as a forum to discuss, advocate, monitor and review all policies and actions related to early childhood intervention in Malaysia.

It hopes to advocate for early childhood intervention as a right and to fight to remove all barriers that hinder children with disabilities and their families.

The NECIC can be contacted through email at [email protected] or at 012-5235650 (NECIC president Dr. Amar-Singh HSS).

Their website (www.necicmalaysia.org) has links and contact details to a number of early intervention NGOs and government welfare bodies all over Malaysia, including Sarawak.

For more information about Down’s Syndrome, the public may contact the Kiwanis Down Syndrome Foundation at 03-78030179.