KUALA LUMPUR, Oct 6 ― Home is where one finds comfort, peace and time with their loved ones.
For some however, it can be a place that lacks motivational support or a person that could give them additional confidence in their daily lives.
HIV-infected and affected (at-risk) children, caregivers and parents sometimes face this problem in addition to the worry about being accepted by society.
Affected children are those who are not infected but whose lives are impacted by the disease.
The public’s lack of knowledge of the disease does not help them but in PT Foundation’s (PTF) 2nd Chance Programme, they have a place they can feel at their best.
The programme, which turns frowns into smiles, allows kids and their caregivers to feel more equal in society.
It provides them with more than just educational and financial support, but equipping them with better psycho-social skills.
PTF estimates that there are more than 5,000 children who are infected or affected by HIV in Malaysia.
Due to advancement in medical technology, people living with HIV and who are on treatment can lead long and healthy lives without the risk of infecting others.
Unfortunately, recent studies have indicated a lower adherence rate to treatment in children and adolescents with HIV as compared to adults.
“This programme builds confidence and resilience among these kids,” said programme manager Supreet Kaur Maniktala.
She added that participants usually have a lower socio-economic background and come from stressful environment that may affect their development.
“Through our mentorship programme, we seek to elevate and motivate them in hopes of giving them a second chance at a better life.”
The programme, based in the Klang Valley, works with 100 at-risk children, and is held at their drop-in centre in Chow Kit as well as home visits.
Supreet described themselves as a group of professionals who improve the lives of the affected and infected kids, and their caregivers.
But after spending about four hours at the centre last Sunday, Malay Mail discovered it was more than just that.
To be precise it made us feel at home, a family-like atmosphere.
Everyone involved in the programme put their heart and soul into the time spent with the children.
The kids were seen running around, socialising with one another and showed eagerness to succeed while their caregivers and parents were happily chatting in the pantry.
Halfway during our interview with a volunteer of the mentoring programme, a child came over to hug her leg.
“Cikgu, cikgu, tak sabar nak belajar dan jadi pandai (Teacher, teacher, I can’t wait to study and get smarter),” said the child.
From there, it can be seen how much these programmes help the children.
Supreet said there were some who first started with no ambition to study as they had been neglected.
“One of the kids came up to me when they first joined and kept on telling us ― ‘saya bodoh’ (I am stupid).
“I asked her why and she said her friends in school called her that. I sat her down and told her, ‘start telling them you are smart’,” said Supreet.
Problems faced by PTF
Supreet said a major problem was the lack of manpower.
The manpower that they require can be divided into three categories ― a non-skilled volunteer, an academic mentor and a volunteer with skills to assist the children.
According to 2nd Chance programme counsellor Siti Nazwa Abdul Haris, they have about 15 active volunteers who help in psycho-social care.
“For this programme, we need people with skills while for the mentoring programme anyone is welcomed.
“The only real downfall is they may not be available long term but it’s better than not having anyone,” she said.
She added that some of the kids they worked with are from poor families with incidents of familial death, domestic violence or mental health issues which in turn led to them struggling in school.
“By providing them with mentorship and counselling services, we see drastic improvement.
“Many of them appear to be happier and show more interest in attending classes. Some even went from the bottom of the class to top three,” she added.
Programme advisor and associate professor at the School of Liberal Arts & Sciences of Taylors University Anasuya Jegathevi Jegathesan said some student volunteers were afraid.
“For example, a psycho-social student volunteer was afraid of cats and could not enter the children’s homes. Some on the other hand, expect to have nice offices and simple jobs, but dedication is key at the foundation.”
She added that other challenges included having patience and sorting out logistical issues.
To hire an industry professional is too expensive so PTF gets help from counsellors or psychology undergraduates.
They will have 36 sessions or 250 hours with each child. The sessions can take from six months to a year and improvements are assessed every six sessions.
An expert’s perspective
Anasuya is no stranger to dealing with kids who struggle to fit into society or are often ignored by the public.
At PTF’s 2nd Chance Programme, she oversees the mentorship scheme, and often provides psycho-social support to parents of at-risk children.
Supreet and her are founders of the programme.
The 44-year-old Anasuya said retirees who were psychologists or counsellors are welcomed to volunteer.
“The difficulty is affording the student volunteers after they graduate. Hence, I suggest retirees should come and share their skills and knowledge here.”
When asked whether being with these kids ― discovering their struggle and improving their situations ― brought joy to her, she said no.
“We don’t know what these kids go through at home. Some of them come from broken families.
“Some get shouted, abused and beaten at home. When you get only an hour with them every week, what satisfaction can you get?
“Most days I go back struggling to sleep. Spending time with these wonderful kids does not give you any reward but my level of drive and commitment keeps me going.”
On whether the status of the child (infected or affected) should be made known at school, she said it depended on the situation but it was advisable to inform the headmaster or principal.
This is because an emergency situation can be dealt with professionally.
She advised the public to never shy away from seeking a counsellor’s help.
“On television, you can see the Kardashians or Miley Cyrus often seeking help. This goes to show that even celebrities do not hide their problems.”
Her advice is simple: Imagine yourself as one of them.
“Why don’t you act like them by not hiding it, seek help if you need to.”
She added that the programme benefited the volunteers too as it helped them develop as individuals after seeing the positive impact they had on the participants.
‘They’re like siblings to us’
Biotech undergraduate Nursyauqina Sofree, 20, is a mentor and she looks forward to volunteering her services every Sunday.
“I spend four hours every Sunday with the kids. Teaching them subjects that they struggle with in school.
“It was a challenge at first, but after doing it repeatedly I understand how much they can absorb and when it is time to take a break.”
Nursyauqina joined PTF in June 2016 after looking for ways she could past time productively.
“It gave me a new perspective in understanding different types of personalities and how to deal with them.
“The joy on their faces is priceless… it made me realise how much of my life I’ve taken for granted,” said the 20-year-old.
“I tell these kids things I only tell my family. Personal stuff.
“When you open up to them, they tend to develop a sense of care and in turn, they start expressing themselves because they feel comfortable with you.”
Lee Juin Chiang, 28, is one of the newer mentors.
Like most Malaysians, he had a negative perception about HIV infected and affected kids.
“That was the stigma I had when I was a stranger to them, but after spending my Sundays here, I realised they are like any other kid. Yes, they may lack a conducive environment, but they have big hearts.
“I no longer have the same perspective.”
Lee said he has seen a change in himself too.
“It helped develop my leadership skills, disciplining them and trying to instil in them right from wrong.
“It also gives me satisfaction. When I hear from the counsellors the kids have improved in their studies or social skills, it brings me joy.”
Lee cited a nine-year-old boy who had no interest in studying but had a change of heart after a year.
“I started teaching him mathematics.He loves playing games, so I used that as a method to convince him to study.
“I told him games have algorithms and if you want to work in the gaming industry, you have to improve your maths.
“I gave him Form One level maths to stimulate interest and six months down the road he was counting at a faster pace.”
Lee said little moments like this has left a strong impact in his life.
“They gave me another reason to live.”
In mid-2010, Faridah (not her real name) was seven months pregnant with her fourth child.
Everything seemed to be going well until she had a blood test.
The doctor informed her that she was HIV positive.
“I was puzzled. What did it mean? Was my life over? What will happen to my kid? Will I be hospitalised forever?
“I was lost,” the 44-year-old said.
It took the doctors a week or so to convince Faridah things would be all right.
But she was not fully convinced she could live a normal life, so they referred her to PTF for support.
“I thought there was no point in me living, I felt I was going to be separated from society,” she said.
But she found the strength to leave her house to go to PTF to seek help.
“They told me not to worry, I can live a normal life, I’m a normal human being.
“I was touched and slowly gained the confidence to live.”
Two of her kids are HIV affected while her fourth is HIV infected. Another has died.
“My child doesn’t know what he suffers from and I want to keep it that way.
“Kids cannot lie and I am afraid if people knows he is infected, they will bully him.”
At PTF, Faridah said she discovered a home.
“The first three years was very stressful, but thankfully I’m over it.
“The counsellors did a brilliant job,” she said.
The 2nd Chance Programme is partially funded by United Parcel Service and is looking for volunteers and donors to support its expansion.
To volunteer or donate, call Supreet at 03-4044 4611 or send an email to [email protected] or [email protected].
For details, visit ptfmalaysia.org.
