Tan (second from right) created a space for children with learning disabilities to practise their motor skills and socialise. — Photos: AZLINA ABDULLAH, SAMUEL ONG and LOW LAY PHON/The Star
Mothers of special children learn new skills, tackle challenges to give them the support they need
MOTHERS, especially working mums, are known to be great at multi-tasking.
Those raising children with special needs definitely have to step it up a notch as their offspring will require more time and attention.
To mark Mothers Day, StarMetro spoke to three inspiring mothers who built their careers while bringing up their special children.
Fortunately, for the most part, all had strong family support in dealing with the extra challenges that came with having a differently-abled child.
Fashioning a new career
Teresa Tan, 64, has four children, the youngest of whom was diagnosed with autism.
Teresa was a fashion designer in her younger days.
Teresa (right), with her autistic son Karl, during a Gem & Bread activity for special needs individuals.
She had her own business at 21 and by 33, owned a factory.
Life for the busy career woman changed after her son Karl Tan, 26, was born.
“When Karl was seven, I quit my fashion business and worked for non-governmental organisations (NGOs) as I wanted to learn more about this field,” she said.
In 2014, she started her own NGO catering to individuals with special needs such as autism, Down Syndrome and attention deficit hyperactivity disorder (ADHD).
Teresa named it “Gem & Bread”, inspired by a tune from The Sound Of Music, the 1965 musical.
“His favourite song is Do-Re-Mi. In that song there’s a lyric which goes, ‘Tea, a drink with jam and bread’.
“Special children are gems to me,” said Teresa in explaining the inspiration behind the name.
Gem & Bread helps those with special needs build their motor skills and also hosts a variety of activities.
“I was at an event when I overheard a mother with a special needs child saying all her son did was eat and sleep.
Noraza (left) decided to give up her full-time job to care for Mohd Samsudin, who is autistic.
“It was painful to hear because I wanted my son and others with disabilities to also be provided with opportunities.
“Children like my son do not get invited to parties so at my NGO, we always have parties as it brings a lot of joy to them.
“Since I was a fashion designer, I have taught them how to string beads and make accessories such as earrings.
“I am the happiest person in the world and so are they when they manage to string a bead,” said Teresa who is thankful to have a supportive husband.
She admitted to feeling stressed out when raising a special needs child and juggling a career at the same time.
Hence, she ventured into a career that would enable her to help her son and others like him.
Teresa said she had helped close to 50 children and young adults.
On coping mechanisms for stressed out mums, Teresa said they should seek professional help.
“Sometimes, we just need a listening ear and to not be judged.
“I highly recommend mothers seek help instead of bottling their emotions,” she said.
She added that mothers were usually hard on themselves because they wanted the best for their children.
But with a special child they will have to focus on what is within their capabilities and control.
(From left) Hamkanudin, Hany Safiyya Hamkanudin, Hana, Hayfaa Sumayya Hamkanudin and Sarini spending some quality family time at home.
“We can’t change the world and ask people to accept our children the way they are.
“However, we can equip them to face the world.
“It may take a while but never give up,” Teresa said.
She said mothers should not be ashamed or overly protective of their special child.
“Don’t hide them at home but take them out,” said Teresa who does line dancing to de-stress.
“Find communities and like-minded people that can accept them.”
She also has support from her former schoolmates at SMK Sri Perhentian in Pontian, Johor.
“We need to surround ourselves with good people who accept us,” she added.
Her dream is to set up a home for special needs young adults so they can live together and take part in planned activities.
“I just wish someone would donate a house for us to set up a home.
“Many of these children will have no one when their parents are gone,” said Teresa.
Good system in place
Sarini Bujang’s world was shaken when her daughter Tengku Hana Haziqah Tengku Mohd Dzaraif was born with cerebral palsy.
Sarini, 44, was a systems engineer and stayed in the field for 13 years while raising Hana, now 18, who is also non-verbal.
“I was told she would die before she turned six.
“I did not want her to die and started her therapy when she was just two month old.
“In Hana’s situation, I can’t wait for miracles to happen or flee because she is my child so I have to fight for her to live and have a better quality of life,” said Sarini who went through a divorce several years after Hana was born.
She has since remarried and has two daughters with her husband Hamkanudin Mohd Taufik, 44, who has been a source of strength.
Sarini said she started reading widely not just to understand Hana’s condition but also for self-help and growth.
“My husband buys me a lot of books and he reads too.
Sarini (right) steadies Hana who is on a standing frame.
“We have stopped listening to unsolicited advice and only get information from reliable sources,” said Sarini who was recently diagnosed with ADHD.
She is now a professional coach, does corporate training and owns a business while helping her husband with event management.
Sarini has hired a caregiver to look after Hana while family members help with household chores, including cooking.
She has made several lifestyle changes in order to deal with a severely disabled child.
For example, all her children are homeschooled.
“I also believe mothers should seek help from counsellors or coaches when they are facing challenges.
“Raising special needs children comes with its fair share of trauma and we need to heal.
“I rely on apps and bullet journaling to plan our activities.
“I have no time to waste because I need at least two hours daily to dress Hana,” she said.
Sarini said it was expensive raising special needs children hence holding on to a career was important.
Noraza: My position may be filled by another person, but my son only has one mother.
Hana’s therapy and daily support equipment such as her standing frame and shoes are expensive.
“Most parents can’t afford to send their special child for private therapy.
“In the government sector there is good equipment but a lack of qualified personnel.
“I find that with homeschooling, I focus better on the education of my two other daughters.
“We have a good network and go for excursions often to places where all of us are accepted,” she said.
Sarini and her husband sometimes go mounting biking in Taman Tun Dr Ismail, Kuala Lumpur.
“We need to find time to have fun too.
“Special needs’ families need emotional support and if you can, always ask how you can help.
“Some respite is important so caregivers can unwind,” she said.
Mastering new skills
For some mothers of children with disabilities, leaving a high-profile job was inevitable.
Noraza Yusof, 56, was once Kuala Lumpur Tourism Bureau general manager, and instrumental in drafting the Kuala Lumpur Tourism Master Plan 2015-2025.
She left the position in 2017 to provide the best care for her son, Mohd Samsudin Cassim, now 15.
He was diagnosed with autism at two and was put in an intervention programme in kindergarten.
Mohd Samsudin was later enrolled in a government school for children with disabilities but had a tough time fitting in.
“The school had good staff but students with different learning disabilities were put together in a classroom and this was too overwhelming for him.
“His classmates’ behaviour, as well as the constant ringing of the school bell caused him severe anxiety.
“Also, he is non-verbal,” she said, adding that she had to find an alternative place for him.
That year, 2014, was also a crucial time in Noraza’s career as she was busy finalising the tourism master plan.
“A few international schools that we approached declined his admission because he was autistic and non-verbal.
“I realised that juggling work and my son could be too overwhelming and that I may have to leave.
“I began preparing the draft with more details added to ensure that anyone who took over would be able to execute it.
“The tourism draft plan was launched in 2015 and I resigned two years later after a discussion with my husband.
“My position can be filled by another person, but my son only has one mother,” she said.
Noraza later found a suitable private centre that supports individuals with autism and enrolled her son there.
She said although the fees were high, but her son was responding well.
“I realised that I could not be a stay-at-home mother so I started a freelance consulting service on tourism.
“I felt that with my degree in business management from the US coupled with my 25 years of experience and expertise in the tourism industry, I could still contribute.
“I also started Embrace Autism, an initiative to create more awareness in the community about individuals with autism spectrum disorder, with a focus on parenting.
“I am also active in an NGO that provides sustainable programmes for senior citizens in Kuala Lumpur.
“Now, my teenage son is physically taller and bigger than my husband and I.
“Caring for him is getting more and more difficult as he is getting stronger while my husband and I are getting weaker.
“My biggest worry is who will care for him when my husband and I are gone,” she said.
Noraza said the government needs to look into the needs of people with disabilities, especially those from poor families.
“A one-hour session with a speech or occupational therapist costs RM190 on average.
“My son is diagnosed with level 3 autism, which means he requires more support.
“He needs multiple sessions a week to be able to progress,” she said.
Noraza said the Welfare Department only provided financial assistance of RM150 per month.
“I have spoken to many mothers of children with disabilities who have had to give up their jobs to provide the best care for their child.
“It is a waste for the country and its economy to lose women of calibre in the workforce.
“Most of them are also not trained to care for their special children either,” she said.
She said the government should have more facilities for special needs children.
“When parents have a proper place where they can send their children to be the best version of themselves, they will be at peace at work.
“With both parents working, families will also be financially better off.
“Sadly, a parent, usually the mother, often has to sacrifice their career to care for a special child,” Noraza said.
She said although the government provided training, it was basic while training offered by the private sector was expensive.
“Free and continuous training to equip mothers and caregivers with proper skills to care for their special children is badly needed,” she added.
When parents and caregivers were better trained, it would make their sacrifice in giving up their full-time job to care for special needs children more worthwhile, said Noraza.
