Circuit breaker tough on special needs children, but parents find creative ways to cope

SINGAPORE: When the “circuit breaker” measures were announced on Apr 3, Cinddie Tay told her son he could not visit the nearby minimart to buy his snacks any more.

“He didn’t have tantrum meltdowns the way you may imagine — more like relentless nagging and begging,” said the 42-year-old.

Her 10-year-old with attention deficit hyperactivity disorder is normally used to a full routine of tuition, swimming, home counselling and art therapy. He now faced weeks of having to stay at home with limited activity options.

Ace initially “binged on Netflix and YouTube videos”, but the prolonged screen time “worsened his already serious attention issues”. He grew increasingly distracted during conversation and could not maintain eye contact.

So his parents came up with an idea to help him “calm down and focus”.

They rented a car from BlueSG, packed Ace into it, and for 30 minutes each day now, they drive around their Sengkang estate and Punggol to “look at scenery”.

“Letting him see that no kids are out on the streets and that stores are shut reduces his anger and frustration when we tell him no going out,” said Tay.

We also want to show him that the playgrounds and public seats are taped off, so he knows we’re not lying to him when we say that places are temporarily closed.

Ace is not the only child who has had his familiar, structured routine overturned.

While the circuit-breaker period — now extended until June 1 — and home-based learning are challenging for many parents, those with children with special needs grapple with unique worries.

These include the loss of routines vital to many such children, and therapy sessions being put on hold, which could mean developmental setbacks. These have challenged parents and some education providers to invent creative ways to address the children’s needs.

WHEN ROUTINES ARE DISRUPTED

Deeana Mohamed’s sons, seven-year-old Ryan and 11-year-old Rifqi, who have low-functioning autism, usually spend their weekdays in special education schools and student care, from 7am to 7pm. After dinner, their home transforms into a “play haven”.

And their weekends entail running around and playing outside.

For them, adjusting to a new routine takes longer than it does for a typical child. “They’ll whine, complain and avoid. They get very restless when I try to get them to do their work,” Deeana said.

“My kids see me as their mum who brings them comfort, food and lodging, whereas they see their teacher as an educator, and firmness means business.”

Like many children with special needs, her sons also benefit from having a trained therapist to help the teacher instil daily living skills, such as how to wash and store their plates after eating.

“Teachers and therapists have time to wait for the kids to follow their instructions,” she added.

But sometimes I don’t have the time at home. So I’ll end up putting away their plates or pulling up their pants for them after they go to the toilet.

Julie McMahon’s six-year-old non-verbal autistic son, Jack, was attending speech therapy and occupational therapy as part of his school curriculum at Kids First. He also had weekly swimming lessons and occupational therapy outside school.

Familiar with learning from teachers and therapists in a specific setting, he does not understand that “the same activities can be taught by a parent” as is the case now.

“Generally, his speech therapy is meant to help him functionally use the iPad to ask for what he wants. But when a parent tries to do this with him, he’ll use the iPad to play games instead,” said McMahon, 45.

Before the circuit breaker, she and her husband made Jack’s life easier by developing strict routines on routine boards so he could keep calm and know what is likely to happen each day.

For instance, the daily schedules are labelled with events such as “breakfast”, “shower”, “dress for school”, “bus to school”, “therapy”, “bus home from school” and “swimming lesson”.

But these routines that they “spent a long time fostering” for their son are now “out the window”.

NO MORE OUTDOOR PLAY?

In addition to the lack of structure, many of the parents CNA Insider spoke to have tried to keep their children at home since wearing a mask outdoors became compulsory. Their children do not take to wearing a mask easily.

Whenever Jack’s mother tries to put a mask on him, he pulls it off and cries.

He already hates the feel of anything on his arms, such as a watch or identification bracelet, so a mask over his nose and mouth “is just not something he’ll tolerate”.

“I feel lonely that I can’t take him for a walk to the nearby shop,” said McMahon. “Otherwise, it would be one of the few times I can take him out of the house.”

Unable to go out in public, Jack recently “climbed a neighbour’s fence” and over a railing “onto a roof” to his parents’ horror. The incident left his mother no choice but to force him stay indoors for now.

Deeana has also stopped taking her sons running in the park or grocery shopping for the same reason.

After 15 minutes of wearing a mask, Ryan removes it and will not put it on again, despite his mother’s pleas. Rifqi does not even comply because he “doesn’t like things on his face”.

But Afiqah Liyana continues to allow her non-verbal autistic daughter, Daaniyah, to play outside, although the five-year-old’s daily playtime has been reduced to twice a week.

“It’s not possible to avoid (outdoor play) entirely. She needs the sensory stimulation, which is different from playing indoors,” said the 30-year-old mother, who tries her best to get her daughter to wear a mask.

To make up for the lack of outdoor time, Daaniyah now climbs on tables indoors or practises “stimming” — self-stimulating behaviour involving flapping her arms, clapping or rocking her body.

Leaving the house is more important for those with special needs, who tend to be either oversensitive or desensitised to the physical environment. The right amount of exposure is necessary to “correct” this sensory “imbalance”.

“Each child needs to exercise each of their seven senses: Touch, smell, taste, sight, hearing, proprioception (awareness of the body’s position and movement) and vestibular (sense of balance),” said Mark Lim, co-founder of inclusive games store Sensational Play.

For example, running on the beach would be an ideal activity — but the beaches are now closed.

Children whose sensory needs are not met would “feel unfulfilled and not be able to carry out higher-order skills, such as reading and learning”, he said.

Being cooped up makes them extra irritated, which mentally and emotionally affects themselves and their parents.

That is why parents like 43-year-old Aaron Hamilton continued outdoor activities for his children at the start of the circuit breaker.

He took his sons, aged two and three, outdoors at least twice daily to run along the pavement in front of their HDB block or to let his elder son, who has global developmental delay, cycle around the void deck.

But since restrictions were tightened, they have stopped going outdoors — his sons “won’t wear masks at all”.

INDOOR INNOVATIONS

The Hamiltons have now resorted to indoor activities, like setting up a tent, “playing with dinosaurs, trains and rockets”, “announcing rocket launches in French” and caring for the turtle and fish they bought at the wet market.

“My older son likes to pretend he’s on the MRT,” added Hamilton.

“He spends time running back and forth, looking at the wall, calling out the stations and reciting other announcements, like ‘please mind the platform gap’ and ‘doors are closing’. He’s memorised the East-West line.”

For her part, Deeana has found ways to make do with staying inside their one-room flat.

Her children dance to K-pop MTV, play with balls and bowl with their toys. She also gets them to bounce on the bed or their gym ball to expend their energy.

Rifqi, her 11-year-old, gets over excited when his senses are overstimulated. But playing with a ball is “quite relaxing” because it “diverts” him from “tapping the floor heavily” or clapping his hands.

Turning her home into a “home preschool” is how Christina Purnama, 35, helps her children to adapt to the changed circumstances. Her six-year-old has mild autism, while her three-year-old has epilepsy and developmental delays.

For three hours a day in “class”, her children call her “Ms Christina”. She gives them name tags and also wears spectacles as a prop to make home-based learning “more believable”.

To switch it up, she adds chores and sensory play to their daily routine.

“Of course I want the ‘fancy’ sensory toys, like coloured rice and slime, but I start with the easy ones that I have: Dry pasta, water, cereals, cotton balls and small Styrofoam balls. They’re less messy and equally fun,” she said.

For example, her children enjoy pretending the Styrofoam balls are snow when they play with their Disney’s Frozen toys. They also like to immerse their Duplo ocean animal toys in water.

Apart from home inventions, communities like Superhero Me provide a range of interactive and inclusive activities for children with special needs and their parents across Facebook Live, Instagram Live and Zoom.

“On Instagram Live, we get children and youth with special needs to speak about how they’ve been coping,” said Superhero Me co-founder Jean Loo, 35.

“This allows ‘regular’ people who haven’t interacted with those with special needs to observe and speak with them.”

Before each Zoom workshop, Superhero Me sends an activity pack, which includes a visual schedule and slides. Its 30-minute workshops are open to all, but the storytelling, dance and music activities have been adapted for children with special needs.

With the extension of the circuit breaker, Superhero Me hopes to branch out into art workshops, and fitness and mindfulness exercises to start the day.

It also plans to launch Zoom self-care sessions, facilitated by social workers, therapists or parent-leaders, to check in with parents.

To turn the unique circumstances into learning opportunities, parents can teach their children the impact of COVID-19 through Superhero Me’s COVID-19 educational resource package.

“There’s a huge impact on special needs kids because routine brings security. The circuit breaker inspired us to see how we could maintain that relationship with the kids,” said Loo.

WHEN THERAPY IS INTERRUPTED

But there are longer-term worries that the circuit breaker might lead to regression in the children’s behaviour.

Tan Hsinghui, for example, feels that her “layman” efforts are falling short. She has two sons: 13-year-old Aedan is diagnosed with autism spectrum disorder, while six-year-old Linus has developmental and speech delays.

“For kids like Linus, it takes months of therapy to get one correct behaviour in place,” said the 44-year-old part-time tutor. “A one-week break can easily undo everything when reinforcement isn’t adequate and timely and supported by the right people.”

Linus attends a full-day early intervention programme at Imagine If in place of preschool. There, he learns to make requests appropriately, which his mother cannot enforce in the same way at home.

When she tries, he cries — and his grandparents must comfort him to make him stop.

“In the therapist’s office, he’d recognise the environment, so he won’t misbehave. For a therapist, the only focus is the kid. But at home, my son knows that someone would come to ‘rescue’ him,” she said.

“When we want to build up the habit again, they’ll lapse into that ‘comfort zone’. We try so hard only to go back to square one.”

While she monitors Linus’ speech at home, she knows only whether he makes sense, but not how to analyse his speech using a professional framework or what questions to ask to help him improve.

“For Aedan, home-based learning hasn’t effectively replaced what he usually undergoes at APSN Tanglin School. The type of education he has needs a very personal touch. It can’t be substituted with multiple-choice tasks,” she added.

In school, he did hands-on vocational training, housekeeping and self-care, which required teacher-student interaction. His curriculum now is limited to what can be taught onscreen, like reading comprehension and numeracy.

Tan’s added focus on her sons, however, has resulted in her 15-year-old daughter, who does not have special needs, feeling more neglected than usual.

“Parents might have to spend more time with their special needs children for home-based learning compared to their typically developing peers or siblings,” advised Nurul Ain, a senior speech therapist at THK Therapy Services.

The attention these children need could be as straightforward as parents placing their hand on their child’s hand for an activity, or demonstrating jaw exercises to teach their child how to grip a spoon with his or her mouth.

Around 80 per cent of children with special needs require face-to-face therapy rather than engagement through a computer screen, said The Growing Academy’s principal therapist Yang Ling.

“If a task is challenging for the child, it takes a professional therapist to know what to do before a meltdown occurs. The therapist will break down the task into simpler steps to interest the child in trying again,” she explained.

Without consistency in learning, she believes regression might occur, to the detriment of the child’s development — and the parent’s pocket. “They might be less willing to follow parents’ and teachers’ instructions,” she said.

“There’ll also be an increase in tantrums because they’re not getting what they want. Before the circuit breaker, they might have learnt how to write or count, but they could easily forget these skills without practice.”

THERAPY TIPS, PARENTAL PRIORITIES

If parents are willing to get involved, then teletherapy can be a success in helping these children.

For some of its charges aged five to six, The Growing Academy delivered a box of materials containing toys, puzzles and worksheets to help them focus throughout the hour-long therapy session.

“This group requires parents to sit with them and assist their work. For example, during a tracing task, we’d need their parents to … hold their child’s hand to trace. Parents need to cooperate to ensure that teletherapy works,” said Yang.

Therapists have also given parents tips on what they can do to maintain what their children have achieved.

Purnama’s three-year-old daughter, who has gross motor delay and low muscle tone owing to seizures, used to attend physiotherapy. During this circuit breaker, the family’s balcony and living room has been transformed into daily obstacle courses.

“We do home activities suggested by her physiotherapist, using a stepper, gym ball, mattress, small stools, clothespin — anything we have at home,” said the mother.

She has also learnt to redefine what is important, that is, letting her children have fun rather than achieving goals.

“I used to be ambitious, and hence anxious. But I’ve now accepted that my special needs children have their own developmental timelines,” she said.

“I’ll attempt to work on the school’s worksheet, but if (my children) tell me they want to do something else, then I’d let them switch to story time or art for a while.”

Importantly, she has learnt to prioritise her own mental well-being. Her home atmosphere “drastically changed” when “Mummy was no longer screaming or anxious all day”.

“Seriously, parents of special needs children are vulnerable and need to be restored before they can help their children,” she advised.