(THE NEW PAPER) - British-Chinese actor-host George Young knows only too well the ups and downs of caring for loved ones with disabilities.
The eldest of four boys grew up with two brothers who have severe cases of autism with under-developed language abilities.
His siblings Andrew and Paul, aged 33 and 30 respectively, are highly dependent on their family caregivers - primarily their parents - for their day to day needs, which include close monitoring of medication.
His other brother Anthony, 35, is a qualified accountant.
Young, 36, recently became the ambassador for Share the Care SG, an initiative that aims to increase awareness of the unique challenges that family caregivers of people with special needs face and to encourage the community to lend support to those family caregivers.
The Fly Entertainment artist said that one of the greatest challenges of living with family members who are on the more severe end of the autism spectrum is the lack of effective communication.
Frustration often arises on both sides.
For Andrew and Paul, it often means tantrums that can get violent. Family members have got injured trying to stop them from hurting themselves or others.
Young told The New Paper in an e-mail interview: “While Anthony, my dad and I have experienced our share (of getting physically hurt), my mum has experienced the worst of it.
“She has been hit, bruised, scratched, pulled at, bitten and burned.
“These tantrums reached their peak (in terms of frequency) in my brothers’ teen years. The outbursts have became less frequent, but they do still happen.”
Describing the tantrums, Young said: “Imagine the worst tantrums you had as a child, and proportionately transpose that onto a teenager, and then onto a fully-grown adult male.
“Then multiply it by two in our family’s case. Andrew is 1.93m and Paul is 1.78m. Mum is in her late 60s, Dad will hit 70 this year.”
While Paul can string simple phrases and sentences together, Andrew is almost completely unable to speak.
According to Young, the latter had a difficult birth and was exposed to pressure on one side of the head, resulting in a lazy eye. He was also diagnosed with possible trigeminal neuralgia, which can lead to extreme sharp pain in the face or head caused by the irritation of a nerve in the head.
Young said: “Growing up with them and especially in my early teens, I was very frustrated with them, as well as the entire family situation at times.
“Why did they have to scream and hit themselves and us on almost a daily basis? Why couldn’t they just tell us what’s wrong? Why don’t they understand me?
“I was embarrassed of them at times, and would rarely have friends or girlfriends over.”
Young and Anthony were eventually sent to boarding school to allow the pair to “develop in a more ‘normal’ environment”.
With his experience of caring for siblings with autism, Young has been actively engaged in multiple causes and campaigns to raise awareness for autism over the years, including lending his voice and face to Share the Care SG.
“Through this, I hope everyone can better understand some of the challenges family caregivers face while looking after their loved ones with special needs.
“I also hope that, much like what Share the Care SG seeks to do, the community can play their part to relieve the load by ‘caring for a caregiver’,” said Young, who has also given talks at Autism Awareness Day events and various charities and schools.
Young shared that other challenges, such as experiencing conflicting emotions, are often par for the course.
“I often ask myself, ‘Am I doing enough to help? Am I pulling my weight in terms of caring for them? Am I being selfish pursuing my personal goals, or has that pursuit of my goals helped them and others?’
“I know those questions will always be there for as long as I continue chasing my dreams while simultaneously helping care for Andrew and Paul,” said Young, whose brothers’ conditions prompted him to study psychology for his first degree at the University of Southampton in England.
For the past few years, Young’s parents have received support in caring for his brothers, who now have assisted-living plans in place for them in the UK. Government-employed caregivers aid in caring for his brothers and planning of their regular activities.
But Young stressed that it remains a “lifelong commitment” for the entire family.
Even though they are based in different parts of the world, Young - who shuttles between Singapore and Los Angeles for work - and Anthony still pitch in to help.
“After psychology, I qualified as a lawyer, so I’m helping out with drafting agreements and correspondence to various healthcare teams in the UK.
“Anthony is a qualified accountant and has his master’s degree in occupational psychology.
“He’s not only helping out with the correspondence, but also with the day to day running of the care for Andrew and Paul.”
It is their ageing parents who have been the constant in looking after his brothers. And as the years go by, anxiety about the future looms.
“They worry about what Anthony and I will have to take on to ensure the well-being of Andrew and Paul.
“I’ve been to a meet-up in Singapore that focused specifically on the siblings of those with special needs and I know, from meeting the parents of these siblings, that these parents have the same worry - this sense of guilt that they’re leaving the responsibility of their children, to their children,” he said.
Brothers’ autism will not put him off having children
For George Young’s parents, travelling has become increasingly less frequent due to old age, health problems and their responsibility towards his brothers with autism, Andrew and Paul.
Most of the time, they need to be near the pair to assess their care needs or maintain their level of care.
Every two years, they take a trip out of England, mostly to visit Young and his other brother Anthony.
So it came as a “big surprise” when they made it to Antarctica to attend Young’s wedding to Taiwanese-American TV host Janet Hsieh, 36, in January last year.
This was especially since his dad had surgery “where he removed part of his lung” a few months before.
Young said: “It’s too big to ask anyone to make the trip to the southernmost part of the planet, but having them there made the wedding more complete.”
Unfortunately, Andrew and Paul were unable to attend.
The family used to travel to Malaysia, Singapore and Cyprus to visit relatives during their childhoods.
But flying became increasingly high risk for Andrew and Paul as they got older.
Young said: “Think of the stress those of us without special needs feel when standing in the queue at check-in, having to practically undress at security just so we can get patted down with gloved hands if we’re not otherwise prodded with an electronic detector, and rushing from one side of the airport to the other.
“Not to mention the less appealing experiences flying in a plane can throw at you. They would have had to do all that several times and then, in the case of getting to Antarctica, get on a boat for 11 days in rough waters.
“It would actually be cruel to put them through all that without knowing for sure that they completely understood what was happening and why, and that they wanted to go in the first place.”
Hsieh has managed to meet Andrew and Paul only twice, but Young said she has been supportive.
“She’s a very understanding person by nature and it’s not something that fazes her. She has had her experiences with people with disabilities too.
“She’s supportive of the roles my family and I have to play in looking after Andrew and Paul. She’s a part of that now as much as I’m a part of her family and we both accept those new roles willingly,” he said.
When asked if he worries about the probability of having children born with autism, he said: “We don’t yet know the true causes of autism as the spectrum is so wide... But, yes, I’ve often thought that I could very well have a child or children with autism.
“But I refuse to make it too much of a concern and Janet feels the same way. I know from experience that if I have a child or children with special needs, it’s not going to make me love them any less.”
George Young’s tips for family caregivers
1. A support network goes a long way
“Forums for an open discussion within the family, as well as with a wider community for families and friends to share their experiences, are incredibly helpful.”
2. Love is all you need
“We carry on caring for our loved ones because they’re family and that’s what we do. We don’t need to be told how to keep soldiering on... As much as there’s stress or worry, there’s joy and happiness, with love being the all-encompassing envelope to whatever other emotion is present at the time.”
3. It’s okay to have negative feelings at times
“Support systems like Share the Care SG and groups that meet up to discuss their experiences with those with special needs are so helpful in letting people know it’s normal not to be an ‘angel’ all the time. And as parents, siblings, cousins or family friends, you don’t have to have all the answers.”
4. No matter the distance, there are always ways to help
“I’m currently in the US promoting a show, but I was reviewing an agreement between some behavioural therapists that my family is looking to enlist the help of (to help look after Andrew and Paul). Anthony flew from China to the UK last month to stay over with my parents to help with matters there.”