Care Carnival for Caregivers

Raising one child with special needs is challenging enough. Raising three puts unimaginable stress and strain on the family. Yet, this is Annette Chua’s reality. Annette’s six-year-old son is suspected to have autism. She is also caring for her nephews who both have autism. The older boy who is 11 is also being treated for depression and anxiety while his nine-year-old brother is being tested for learning disabilities.

“Our situation is quite challenging. I don’t just have to manage the boys, I have to manage their parents as well who have mental health issues and are going through a divorce. Because I don’t have legal guardianship of my nephews, I continually have to go through their parents and they are often not co-operative,” shared Annette.

“My husband is also not supportive of the situation and I am largely left on my own to care for our son and my nephews.”

Annette has to depend on her parents for financial help because her brother and sister-in-law do not chip in and her husband is mired in debt. Yet, her plight is not unique. Many caregivers of those with disabilities face their trying circumstances alone, uninformed and unsupported.

Caregivers Unite

Few understand the needs of such caregivers quite like fellow caregivers. That is why some of them decided to come together in November 2019 to organise Care Carnival. The one-day event aimed to connect, enable and empower caregivers of children and youths with special needs. Together they shared knowledge and practices, and built partnerships with the community, professional bodies and stakeholders.

“I enjoyed myself because at Care Carnival there were child-minding volunteers who helped me care for the boys so I could attend the talks and discussions,” said Annette.

“It was also good to be in a place where people didn’t stare at my boys when they acted up. I came away with lots of takeaways as well such as online resources to help the boys and organisations which provide activities that support caregivers.”

This focus on empowering caregivers is exactly what Mediacorp Enable Fund (MEF) believes in as well. That is why MEF supported the event as a major sponsor to create a more inclusive society.

Caregivers Learn

Nearly 500 caregivers, their children, volunteers, partners, service providers and performers came together that Saturday for Care Carnival. Attendees got to listen to event speaker Professor Robin McWilliam. A special education professor at The University of Alabama, and the Founder and Director of the Evidence-based International Early Intervention Office (EIEIO), Professor McWilliam is an expert in early intervention. He developed the Routines-Based Model (RBM) of Early Intervention (Birth-6).

RBM is a collection of practices that helps those with young children with disabilities to cope by enabling the children to function optimally in their daily routines at home and in school. Instead of letting professionals teach the children during isolated sessions, RBM teaches families to manage their children’s learning needs throughout their day-to-day activities.

At the talk, Professor McWilliam discussed strategies to optimise learning opportunities for special needs children and engage them to improve their development and quality of life. Caregivers also learnt parenting activities and teaching methods that have been proven to be successful. In this way, families can decide how best to enable their children.

“It was good to know that children learn best from their natural settings, and that they can be engaged to learn through their daily routines and even pick up general knowledge essential for their independence in the future when they are grown up,” said Annette.

Caregivers Connect

To give caregivers more avenues for help, 20 service providers set up interest-based activity booths to showcase programmes available to special needs children and youths. From performance art, art and craft, and culinary to sports and outdoor, science and technology, and horticulture and agriculture, caregivers saw myriad possible ways their charges could be engaged.

The participants found the carnival educational and informative, one said she was surprised that the scene for special needs had developed so much over the years and that there was that much more now that could be done for special needs children.   

Caregivers also received the support they needed. They took part in a focus group discussion with professionals and community stakeholders, and connected with support groups over lunch. A tour of the Enabling Village gave them insights into community resources available to them as well.

The inaugural event was certainly an important step towards building a vibrant and dynamic caregiving community. Many enjoyed it so much that they asked for more of such events. With initiatives like these, caregivers need never journey alone and unaided.

SINGAPORE — Eight years ago, I gave birth to my first child and my life changed forever.

Vera was delivered at full term via elective Caesarean-section at KK Hospital. During the pregnancy, doctors had detected poor growth and abnormalities in her brain, so she was whisked straight to the Neonatal Intensive Care Unit (NICU).

I remember being back at the maternity ward. Around me were mothers next to their newborns in cribs. I had no baby to nurse.

A week later while still in NICU, Vera was diagnosed with Trisomy 18. It is a genetic disorder where the 18th chromosome has three copies instead of the normal pair.

Trisomy 18 children typically have severe intellectual delay, hearing and vision impairment and a slew of physical abnormalities in their vital organs. Most live for a few months, and few survive beyond a year.

There is no history of such a condition in either of our families. It was simply the luck of the draw.

We brought Vera home assuming she would live at most a year.

I did not cope well with the grief, and went through post-partum depression. Thankfully, my sister-in-law helped out. We took turns to feed Vera formula milk every three hours, via a tube place down her throat to her stomach.

The first six months were exhausting. Vera had acid reflux and would throw up regularly. To manage her reflux, we had to feed every two hours, and prop her up for up to 45 minutes after a feed. It was an endless cycle of carrying her and clearing vomitus.

After my maternity leave was up, I returned to work. I did not have the right frame of mind or desire to care for my own baby.

My husband took over the job of looking after Vera. He went on to take nine months’ no pay leave from his job as a senior engineer at a US automotive firm. Fortunately, he had an understanding boss who allowed him to keep his job until he could return.

With time, the grief eased. “There will be time to cry when she’s gone,” my husband reasoned. “We should try to enjoy whatever time we have with her.” It woke me up.

We started to enjoy each moment with Vera as if it were our last with her. She basked in the love. Against the odds, she began to thrive. When she reached her first birthday, it became clear that she was not going anywhere anytime soon.

When my husband had to return to work, I reluctantly left my job as a senior copywriter at a multinational advertising agency.

I lasted barely three months at home. The stress of dealing with Vera’s constant vomiting, round-the-clock tube-feeding, and colicky irritability was too much for me, a new mum. We clearly needed help with Vera’s daily care.

When I became pregnant when Vera was two, we decided to hire a foreign domestic helper. As those with nursing training cost much more, we got one without experience, and trained her ourselves. We were lucky to find Auntie Beth, a 28-year-old Filipino willing to look after Vera.

It took three months to build up her competency — learning how to handle the night-time feedings, the vomiting, properly wearing her breathing mask.

Life became less stressful. I felt I could breathe again. Because I had a caregiver I could count on, it became possible for me to work again.

I was fortunate to find a company where the boss was understanding of my situation. He offered me a permanent part-time arrangement.

I worked four days a week, and could switch around the days if Vera had medical appointments. I had pro-rated childcare leave as well. I could take no pay leave — to train a new caregiver, or when Vera was hospitalised. With this flexibility, I was able to stay gainfully employed, save for my own retirement and afford the medical and therapy equipment a high-support special needs child requires.

There are many families who cannot afford a live-in helper. Mothers become the primary caregiver. At home most of the time, they can become as isolated as their child. Those who are single mothers or have many more children are under immeasurable strain.

For those of us who can afford it, we are heavily dependent on a helper. Vera is now 20kg and growing. Without muscle strength, she is dead weight. Lifting her from bed to bath, from floor to wheelchair — we feel the strain on our backs as we grow older.

We have been lucky. Vera’s second and current caregiver, 29-year-old Auntie Abe, is a natural. It is not easy to find someone with the right attitude to care for a child who cannot speak or understand a word you say.

Earlier this year, shortly after she turned eight, Vera had a severe lung infection. We nearly lost her. She pulled back from the brink, but some brain damage has occurred. The milestones that she had achieved since birth — sitting by herself, laughing, clapping her hands, hugging us with an iron lock — are gone.

I grieved for what Vera had lost. But this determined little girl is not giving up, so neither can I. She’s hugging us still — with her one good arm.

What is the worth of such children — the weakest members of our society?

Here’s a poem Vera inspired me to write:

Without weakness,

how do we find strength?

Without darkness

how do we see the light?

Without sorrow

how do we savour joy?

Without silence,

how do we learn to listen?

Without fear,

how do we learn to be brave?

Without death,

how do we treasure life?

Without loss,

how would we know what we have gained?

Children like Vera are here to gift us with precious life lessons. She has certainly deepened my perception of life.

Tham Yin May blogs about her journey with her special child at http://mylittlevera.blogspot.sg.

According to Associate Professor Denise Goh, Head and Senior Consultant at National University Hospital’s Division of Paediatric Genetics & Metabolism, the prevalence of Trisomy 18 in Singapore is “not expected to be different from that reported in other countries”.

“The prevalence at conception is estimated to be ~1 in 2500 conception. The prevalence at birth is much lower because many miscarry spontaneously in the first trimester or second trimester; even for those that make it to third trimester, some die in utero before birth. For those that are picked up by prenatal screening, some parents choose to keep them while others do not,” said Assoc Prof Goh.

“Only a handful” in Singapore are currently diagnosed with the condition.

Figures from the Ministry of Healthshow that from 2011 to 2015, an average of two babies were born with Trisomy 18 per year here.