Home learning a challenge for those with special needs kids

Parents and caregivers try to ensure children adjust to new routines and do not regress

Madam Nur Hidayah Shahrudin helping her seven-year-old twins, Qays and Rizq (far right), with home-based learning. She also does daily therapy exercises with Rizq, who has cerebral palsy.
Madam Nur Hidayah Shahrudin helping her seven-year-old twins, Qays and Rizq (right), with home-based learning. She also does daily therapy exercises with Rizq, who has cerebral palsy.PHOTO: COURTESY OF NUR HIDAYAH SHAHRUDIN
Left: Lee Jun Le, 13, taking part in Superhero Me's dance video conferencing session with other children, both with and without special needs.Below: Pathlight School pupil Maximilian So, 11, following moves shown in a video during a physical educatio
Lee Jun Le, 13, taking part in Superhero Me's dance video conferencing session with other children, both with and without special needs.PHOTO: SUPERHERO ME
Madam Nur Hidayah Shahrudin helping her seven-year-old twins, Qays and Rizq (far right), with home-based learning. She also does daily therapy exercises with Rizq, who has cerebral palsy.
Pathlight School pupil Maximilian So, 11, following moves shown in a video during a physical education lesson. PHOTO: COURTESY OF CINDY DERMAWAN

Madam Nur Hidayah Shahrudin used to take her son Rizq to parks or to Changi Airport every week so he could practise walking with his pacer gait in large open spaces.

But as social distancing and circuit breaker measures were put in place in recent weeks, her seven-year-old son, who has cerebral palsy, has had to make do with the confines of his family's four-room flat.

Lessons at Rizq's school, Cerebral Palsy Alliance Singapore School, have moved online and his parents are now his "teachers", helping him with therapy exercises.

Madam Hidayah, 33, who runs an online business in organic skincare products, is concerned that the time away from school will result in Rizq withdrawing from friends. "He was quite timid when he first started school this year, but he had been progressing in wanting to make friends in the past few months," she said.

School closures have thrown up challenges for many families, more so for parents of children with special needs, who have to juggle working from home and ensuring the children adjust to new routines and do not regress, now that the full range of support services is not available.

STRUGGLES AT HOME

Some parents are concerned that their children's learning may stagnate. Ms Cindy Dermawan, 44, whose 11-year-old son has autism and attends Pathlight School, said: "If this is prolonged, I'm not sure if what he has learnt at home will be adequate for any exam."

Assistant Professor Xie Huichao, from the National Institute of Education's psychology and child and human development academic group, is concerned that students with special needs may lose some skills they had already learnt.

"Research has documented students with disabilities and those living in more disadvantaged situations are more likely to show regress when they stay out of school for a while, like during the annual school vacation."

Ms Jean Loo, co-founder of Superhero Me, an inclusive arts movement, said of parents with special needs children: "They are working from home, cooking, cleaning, managing the other typical siblings."

Parents may also have difficulty explaining to non-verbal children, or those with moderate to severe autism, why routines have changed and why they must stay home.

Madam Annette Chua, who looks after three boys with mild autism, said: "Sometimes it gets very overwhelming because there is no personal downtime."

The 36-year-old, who is on a break from her work as an entrepreneur, is the primary caregiver to her nephews, aged 11 and nine, as their parents have mental illnesses and marital problems. The boys attend Pathlight School and her own son, aged six, is in a pre-school.

ISOLATING JOURNEY

Caregiving is a very lonely journey, especially for those with special needs children. Social inclusion in this context becomes very real.

MS JEAN LOO, co-founder of Superhero Me, an inclusive arts movement. She recently started a series of Facebook live videos, with professionals giving tips, like self-care exercises. She also holds online workshops, with artists performing, singing and reading stories to children.

Her day is spent guiding them through their work and video-conferencing sessions. In between, she handles tantrums and meltdowns.

Ms Tan Sze Wee, executive director of Rainbow Centre which runs three special education schools, said having less space at home and not being able to go out for a little personal respite add to parents' anxiety. "We are preparing to see an increase in caregiver frustration and stress," she said.

STAYING POSITIVE

Some parents are glad for the increased family time now. Ms Dermawan, who works in human resources, said her son is happy to see both parents more and the family has more avenues for bonding.

Ms Lilian Kuan, 50, has two sons. The older one, 15, has attention deficit hyperactivity disorder and dyslexia and the younger son, nine, has autism. "Autistic children thrive on routines so we needed to set and follow a new routine," said the business consultant. "We try to replace activities he is missing with things like capoeira training (a martial arts form) on Zoom."

Her younger son also constructed a simple "lift lobby" set-up with wooden blocks and pasted his class photo on the "lift door".

To support parents, Ms Loo recently started a series of Facebook live videos, with professionals giving tips, like self-care exercises.

She is also holding online workshops, with artists performing, singing and reading stories to children. "Caregiving is a very lonely journey, especially for those with special needs children. Social inclusion in this context becomes very real," she said.

For some parents, it is enough to know that they are not alone.

Madam Chua relates to fellow parents with special needs children through a WhatsApp group chat, which helps her feel less stressed. "We talk about our feelings and topics other than the children, like cooking or financial investment… so that we have our own personal form of identity other than as mothers."

A version of this article appeared in the print edition of The Straits Times on April 20, 2020, with the headline 'Home learning a challenge for those with special needs kids'. Subscribe