“He’s my VVIP” – A story of brotherly love
Growing up, Mohamad Syahid Bin Arif had seen first-hand how his late father showered his brother with a sense of love, care and most importantly, a sense of dignity.
His brother, Saiful has autism and epilepsy. But after his father and aunt’s passing, Saiful became an unfortunate victim of domestic abuse from a family member. Syahid knew he had to put a stop to it.
In 2016, Syahid resigned from his civil service job to play a bigger part in caring for Saiful. From 2020, Syahid stopped all working commitments to become a full-time caregiver. Thankfully, he had his wife’s support, who stepped up to become the main breadwinner to support the family. Syahid himself is a father to a 10-year-old son and 1-year-old daughter.
To Syahid, caring for his brother goes far beyond familial duty. “As his family member, we want to give him the best and do the best for him… He’s my VVIP (very very important person),” said the 41-year-old.
A tale of brotherly love
Through the brothers’ playful interactions, it is apparent that Syahid takes great pride in caring for his younger brother to the best of his ability.
Family time is sacred, and they love to spend their dinner time together, or to bring Saiful out to explore Singapore, shop and even enjoy the occasional staycation or so.
As Saiful, 34, is minimally verbal, it takes extra patience and observational skills to understand his needs.
Thankfully, Syahid has decades of experience with that. He knows that Saiful enjoys singing and dancing to Malay music, eating (he has a surprising fondness for seafood), and avoids noisy places. In turn, Saiful feels safe and comfortable around his big brother and complies with his instructions.
Before going out, Syahid makes sure that they are both dressed their best. Explains Syahid, “I want both of us to be on equal footing. When we go out, I help Saiful dress up, so we look good together. I want people to see that he is just like everyone else and not see him differently due to his special needs.”
After seeing Syahid’s example, the rest of the family do their utmost to support Saiful in his daily living activities.
When Syahid is not around to attend to Saiful, his son helps to ask Saiful to sit down and wait. Syahid’s wife also cooks meals for the whole family without complaint.
“We do it as a family, helping and looking out for each other,” Syahid says.
Navigating the daily challenges
But the journey does come with its fair share of challenges.
When the epileptic episodes strike, Saiful might suddenly fall to the floor, and it takes many hands to hoist his heavy frame back up. When he feels uncomfortable, he expresses his frustration by throwing tantrums.
Some members of the public could also take issue with Saiful staring at them. “One time, we were on the MRT when a stranger thought Saiful was challenging him to a fight. He came over and punched the train pole!” Syahid recounts.
Over time, Syahid has learnt to stay calm during these episodes, though he admits that negative comments from the public “still can spoil their day.” Thankfully, there have been plenty of kind Samaritans as well who volunteer to look out for Saiful.
“Just try to be positive, kind, and give us space,” says Syahid.
Drawing strength from the community
Caring for Saiful would not be possible without tapping on community support, he adds.
In 2020, Syahid first contacted MINDS to request health treatment for Saiful and support in daily life. From there he was referred to MINDS Hub@Farrer, where MINDS Clinic is located. The clinic assisted in referrals to get treatment for Saiful’s epilepsy. Today, his condition has been kept under control with the help of medication.
The brothers were referred to the Me Too! Club and MINDSibs programme, a support group for siblings. Through networking and caregiver support programmes, Syahid got the opportunity to learn and explore ways to better care for Saiful.
Syahid also opened a trust account with the Special Needs Trust Company, to ensure that there are funds for Saiful’s wellbeing in the event he is no longer able to take care of Saiful.
Receiving in return
In caring for Saiful, Syahid has gained plenty of rich learning lessons as well.
Seeing Saiful’s carefree smile and optimistic attitude to life influences Syahid to learn to be “positive during the down times.”
Saiful has shown unexpected moments of tenderness, coming up to his brother from behind and kissing him on his shoulder with love.
There are funny moments too, when Saiful suddenly vocalises a sentence clearly, as he is minimally verbal most of the time.
“One day, I was looking for clothes to wear, and suddenly he would say, ‘Finding clothes.’ Or just when we’re about to eat, he would say, ‘Are we eating?’ It’s like his Internet connection suddenly connected!” says Syahid with a laugh.
Hopes for the future
To unwind, Syahid spends time with his family and friends, reading and even attending online courses.
He says he finds it important to stay connected with society, even with his full-time caregiving duties. An active volunteer with the Central Provident Fund Board and Citizen Translators, he hopes to fulfil his lifelong dream of attaining a degree.
Giving his advice to other caregivers, he says, “It is never too early or too late to start learning about your sibling with special needs. Include them in your family planning and find a strong support, be it family or friends. Share your knowledge with others and ask for information if you need help.”
He adds, “When life throws you a challenge, don’t let it bend you to your knees… My only wish for Saiful is for him to enjoy his life and be the best that he can be.”
Siblings have a special and irreplaceable role in the lives of Persons with Intellectual Disability (PWIDs), and may also be their sibling’s caregiver. We hope for more in the community to understand the unique joys and struggles that siblings of PWIDs face through the different phases of life they spend together.
Growing up and caring for a sibling with special needs is no simple journey. MINDSibs supports individuals across all ages who have siblings with special needs through fun, educational and meaningful programmes tailored to life-stage-specific needs. Be part of a community that understands the intricacies of having a sibling with special needs. Learn more about the MINDSibs here and follow them on Instagram.