Couple with Down syndrome daughter share their struggles

Couple with Down syndrome daughter share their struggles

The couple thought they would have the "perfect" family - a son and daughter.

But Mr Tay Keng Lim and his wife's dream was shattered when the doctor broke the news that Mei Yee, their newborn girl, was suspected of having Down syndrome.

This genetic disorder, which varies in severity, causes lifelong intellectual disability and developmental delays. In some, it causes health problems.

That was in 1993 and it marked the beginning of the couple's distress.

The stress that parents face when caring for their sick children was in the spotlight last week after Rebecca Loh, 32, was sentenced to 10 years in jail for pushing her 11-year-old son to his death.

Loh, a schizophrenic, had wanted to only injure her son, who was stricken with a suite of medical conditions, so he would be taken away from her and get better care.

Recalling the day Mei Yee was born, Mr Tay, now 50, told The New Paper: "I was just telling my wife she looks like her older brother after she was born."

Not long after, their happiness was taken away in a cruel twist of fate.

"When my wife was resting in bed, the doctor told us he suspected Mei Yee of having Down syndrome, but needed a week for the test results to confirm it," said Mr Tay, a freelance actor and drama teacher .

Mr Tay and his wife, Madam Leong Lai Cheng, 49, hoped fervently that the doctor was wrong, but their hopes were in vain. The couple did not know much about the disorder at the time.

"She wouldn't know how to take care of herself. Can she talk? Can she go to school? How can we help her get there? All these questions started coming up," said the father of three.

"There was worry and fear, but also a certain level of acceptance. The chromosomal test had proven it, no point still hoping."

They started looking up resources that would help their daughter.

JOINED SUPPORT GROUP

They joined a Down Syndrome Association support group, where they felt encouraged through the sessions, and picked up tips on how to care for Mei Yee.

At six months, Mei Yee started attending therapy classes - both physical and mental - that would accelerate her learning.

Madam Leong, an accountant, gave birth to another son a year later.

"I was hoping for a daughter," she admitted. "But I realised having a healthy baby was more important.

"I was also planning ahead for who is going to take care of her. I can't be there all the time and I wanted her to be in her siblings' company."

The therapies were not cheap, but the working couple managed to get by.

Madam Leong said she could not afford to quit her job to care for Mei Yee full-time.

It was the lack of time that stressed the parents.

"As we were both working, we took turns to take time off to take care of her. We have helpers at home, but she was not able to do everything," Mr Tay said.

At one point, they even hired two helpers just to make sure their daughter was well cared for.

They stopped employing the helpers after deciding to put Mei Yee in a childcare centre.

"We realised the therapists can only do so much. We thought she could probably learn more by being in an environment where she's integrated with normal children," Madam Leong said.

But when Mei Yee was three, she fell while in the childcare centre.

The impact on her neck and spinal cord was so great that she had to learn how to stand and walk again - something she had taken close to two years to learn - and other motor skills.

"Her journey was more like two steps forwards, one step backwards. My wife and I stayed focused because a certain level of acceptance is already there.

"Mentally, we knew that we needed to be focused and help her, but the frustration of seeing her..." said Mr Tay, his voice trailing off before adding: "The accident was not her fault."

The couple started from scratch and put her through physical and mental therapy again.

"On one hand, we knew we had to help her. On the other, seeing the very, very slow progress or no progress, seeing very little fruit of what we had put in... that was the frustrating part," Mr Tay said.

Madam Leong said they took comfort in every little bit of improvement in Mei Yee's learning.

"It gives a very fulfilling sense of satisfaction knowing that she's able to do something. We learn to celebrate all those little milestones," she said. Their daughter, who tended to trip over her left foot, fell again when she was eight.

Again, the fall took away the motor skills she had painstakingly learnt. She also had to undergo surgery to fix a neck injury.

Just when the parents thought they were back to square one again, Mr Tay started noticing a marked difference in Mei Yee's learning speed.

"After the operation, our daughter flew. Everything that wasn't happening in terms of her speech, strength and mobility started to show evident progress," he said.

Mei Yee, who turned 21 recently, is now part of a dance group for special needs children. She also swims regularly.

She not only can string sentences together, but also shares her opinions on issues - a far cry from the days when she went for speech therapy.

EMPOWERED

Most of her time is spent as a trainee at Touch Centre for Independent Living (TCIL), where she learns housekeeping skills.

TCIL empowers those with special needs with functional knowledge and skills so that they can live independently in the community.

"Mei Yee can vacuum, mop and clean the cabinets. She helps out with the housework. We haven't had a helper in years," Madam Leong said with a laugh.

Looking at how far Mei Yee has come, from a weak child first diagnosed with Down syndrome to who she is today, Mr Tay is glad he and his wife never gave up.

He urged other parents with special needs children to do the same.

"We struggled with a shattered dream of a beautiful daughter. But if you look at her 21st birthday, I think she's beautiful," he said.

The day mummy reached breaking point

Although Mei Yee's mother, Madam Leong Lai Cheng, tried to stay focused on helping her daughter become more independent, emotions sometimes got the better of her.

She reached her "breaking point" during a Christmas party with her cell group members, when Mei Yee was a little girl.

The little girls, including Mei Yee, were dressed as angels. But Mei Yee, who has difficulty controlling her bladder and bowels, wet herself.

"I suppose that when I looked at them together, the girls all looked like the beautiful daughter that I wanted so much to have. Then I realised Mei Yee is not like the others. That gave me an overwhelming sense of loss."

In that incident, she slapped Mei Yee, but regretted it immediately when her daughter just looked at her with puppy eyes.

"I hugged her and told her I was sorry, that I didn't mean to, and that I love her. I think the strong reaction was probably because I suddenly realised she would not grow up to be the same. Sometimes, it just hits home," she said.

If you're caring for children with special needs...

Mr Danny Loke, senior manager of Touch Community Services' Special Needs Service Group, shared some tips for parents or caregivers of children with special needs.

1:Stay positive.

Focus on your child's abilities rather than their disabilities or medical conditions.

2:Do not neglect yourself.

Understand the importance of self-care and engage in activities other than caregiving whenever possible.

3:You are not alone.

Tap on community resources to equip yourself in the area of caregiving and seek help from social service practitioners when faced with challenges.

 


This article was first published on Sep 29, 2014.
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