'Two-hour meltdowns are not normal': Hope and heartache in raising a child with sensory processing disorder

SINGAPORE: A stranger once approached Ms Jasmine Lim in a mall, concerned that her then four-year-old son was the victim of a kidnapping. 

The boy had been struggling and hitting her husband while being carried. 

“(They) came up to me and asked: ‘Is this your child? I just want to make sure that it’s not a kidnapping.’ Like, a complete stranger. It was so bad,” the mother in her 40s recounted in an emotional interview with CNA. 

Her son’s meltdown, at the time, was nothing new. Now in secondary school, the teenager (who declined to be named) had extreme difficulties with sensory processing even before he was a year old. 

One of the first telltale signs that he had sensory processing disorder (SPD) was when he resisted going to a birthday party by “crying, wailing, melting down”, said Ms Lim, referring to the neurodevelopmental condition that affects how the brain processes and responds to sensory information from the environment. 

This includes things we see, hear, touch, taste and smell, as well as our sense of movement (vestibular sense) and body position (proprioception). 

“Subsequently, even going to malls or shopping areas where there are crowds – basically, (places with) stimulus, a lot of noise, a lot of people, large objects like mannequins or mascots – he would melt down or refuse to go to a particular spot,” she said. 

In such situations, she would see “intense fear” in her son’s eyes, and he would display “fight or flight” responses like running away.  

While it is common to associate such behaviour with autism spectrum disorder, Ms Lim’s son didn’t display key characteristics of autism, she said. 

He was, however, later diagnosed with attention deficit hyperactivity disorder (ADHD) – another neurodevelopmental condition that research has shown often occurs with SPD.

When SPD presents with another condition, this “potentially exacerbates the observed traits” of each condition, noted occupational therapist Evelyn Chan. 

“For example, ADHD individuals usually have emotional dysregulation challenges. Sensory processing challenges can hence negatively impact their emotional regulation and vice versa,” the senior occupational therapist with NTUC First Campus’ child support services department explained. 

It is, however, possible for SPD to occur and be treated on its own, she pointed out. 

SIGNS OF SENSORY PROCESSING DIFFICULTIES 

Children with SPD tend to display “unusual” or “extreme reactions, aversions or fears” to certain sensory input or stimulation, said Ms Chan, who works with children under six years old.

Common signs include “picky eating” and an aversion to "particular textures, tastes or smells of food”, aversion to certain clothes' textures or tags, and aversion to haircuts or trimming of nails.

It can also include a poor sense of balance and “more than usual” sensory-seeking behaviour, like spinning, excessive jumping around and a fascination with looking at flickering lights and spinning objects.

Such signs showed up in Ms Aivonne Chong’s son, Maddox, who turns 12 this year. He was diagnosed with SPD around eight when the frequency and intensity of his tantrums got “really bad”, said the 45-year-old mother. 

Maddox couldn’t tolerate any collared and long-sleeved shirts, as well as “certain textured materials”. Hawker centres were also a minefield – “the minute there is an escalation in the overall ambient noise, he can’t take it”, added Ms Chong. 

And for a good two years, her son would only eat plain white rice with eggs. A single drop of sauce on his white rice would “drive him berserk”, because the different colour would “signal a different taste that he can’t tolerate”. 

Similarly, Ms Lim’s son faced daily clothing challenges and struggled with wearing socks or T-shirts. The latter had “scratchy” labels that irritated his skin, she said. 

As he grew older, “unfamiliar environments” would trigger a meltdown, she recalled. This included birthday parties (he would refuse to enter the room), preschool (he cried before entering the school every day for two years) and Chinese New Year visits (he would stand outside their relatives’ homes for an hour before calming down). 

And forget having a peaceful trip to the hair salon. “It was like bringing him into a slaughterhouse!” Ms Lim said. 

She was a first-time parent at the time but Ms Lim said his “intense reactions” didn’t “match” the situation. Having to deal with two-hour meltdowns regularly was also “not normal”. 

“We all know children; growing up, they are difficult, they are fussy. But his (reactions) are really uncalled for and it’s very hard to calm him down.”

Another 43-year-old mother who didn't want to be identified said her 11-year-old son is hypersensitive to smells. Ms Tan (not her real name) said her family "changed (their) repertoire of cleaning agents" after he was sensitive to certain detergents. 

He is also hypersensitive to sound, and used to scream to block out drilling noise from their neighbours' home renovations, for example. He even gets triggered by the "high-pitched static buzz" from TVs and fluorescent lights, she added. 

It takes him around 15 minutes to calm down after the TV and lights are switched off.

That said, founder of Sensory Processing Awareness Group Singapore, Dr Eugenia Koh, stressed that it is important to recognise that each child’s developmental timeline can vary significantly – so not all sensory processing difficulties are “immediately indicative” of a “disorder”.

Moreover, everyone has “unique sensory diets and preferences” that do not significantly interfere with daily functioning in social and professional contexts. 

These preferences are classified as a disorder when they “severely disrupt” a person's ability to function effectively in these settings, or when sensory input is “so overwhelming that it significantly impacts multiple aspects of life at an intense level”, Dr Koh told CNA.

"VERY LONELY" PARENTING JOURNEY

Even after sensing something is wrong, it can be difficult for parents to seek help – mainly because many don’t know how or where to begin, said those who spoke to CNA.

Ms Chan, the occupational therapist, acknowledged that SPD is “still unknown and misunderstood”. Most cases referred to occupational therapists at NTUC First Campus relate to a child’s “attention regulation, motor skills and play skills” – but underlying sensory processing challenges show up in “a good portion of them” upon assessment. 

“Thorough assessment is important so that we have objective data to explain this 'invisible' condition to caregivers and teachers. Most of the time, with education, caregivers and teachers have a perspective shift and start to better empathise and understand the needs of the child,” she said. 

Before this perspective shift, however, many parents might continue treating their child’s sensory processing struggles as a behavioural issue. 

“It's quite common for most parents to reprimand the kid based on what they see. So it's like, don't be a difficult kid; if you have a wedding to go to, you need to dress properly, you cannot wear your house T-shirt that you typically wear at home because you're most comfortable in it,” said Ms Chong. 

"But parents do it without realising that it really irritates the hell out of their child, who just cannot tolerate that overstimulation."

Ms Lim also recalled not acceding to her son’s meltdowns over a pair of socks when he was two. At the time, she insisted – over frequent two-hour tussles – that he wore them, largely because she had felt judged by a friend’s comment that she was “spoiling” her son after the friend saw her hug him to calm him down. 

As most parents don’t share the same experience, parents of children with SPD might find themselves "very lonely". She often excluded herself from social outings, particularly birthday parties, for her son’s sake. 

Parents tend to bear the brunt of their child’s tantrums too, especially when they’re younger and unable to regulate their emotions.

“The day that he had a meltdown (in the mall), I had a meltdown too, because I think (after) four years of this behaviour, I just lost it. I had to take time out for myself as well,” said Ms Lim.

It was the feeling of being judged as a "bad parent", she added. "Your child is melting down; he’s having a tantrum in public and he looks like a spoiled brat."

For Ms Tan, who wrote to CNA about the limited awareness of SPD, helping her son to successfully manage his sensory issues has ironically resulted in a lack of emotional support from loved ones.

"We are able to eliminate triggers by deliberately avoiding places and sounds, controlling a sensory diet, managing his energy level. So they don't see (his struggles) present in a way that's out of the social norm. Even my family thinks he has recovered," she said.

"But it's just a case of being successfully managed – till this point. It doesn't mean he doesn't have the problem anymore. It's invisible."

As Ms Tan’s son gets older, it's even harder to tell when he's in discomfort as he deals with it quietly. But a recent incident reminded her that his struggles haven’t disappeared – he was triggered by a "very soft" consistent beeping sound of a fire alarm from the ground floor on the opposite side of the block. 

"He's living in a very noisy world. But sometimes, we forget he has this condition. We see his mood swings and we brush it off as typical of a teenager (when) it's actually a sensory trigger," she said.

"HOLISTIC" SUPPORT, STRATEGIES NEEDED 

The physical and emotional exhaustion from caring for a child with SPD can affect the whole family, not only parents, and was a key reason that Dr Koh started her awareness support group. 

The mother of two herself, whose children also have sensory processing issues, wanted to plug the knowledge gap in Singapore so these children can receive “holistic support” from all avenues, she said. 

She believes more public general practitioners and paediatricians could do with a "stronger understanding" of sensory processing development in children. At the same time, the private sector can be “overly expensive”. 

If left unsupported, a child with sensory processing difficulties can develop “secondary social emotional challenges” in later years, such as anxiety, social withdrawal, school refusal and anger management, added Ms Chan, the occupational therapist. 

Ms Tan said her son’s diagnosis at KK Women’s and Children’s Hospital changed their life. She learnt the concept of a “sensory diet” – activities that are specifically scheduled into a child’s day to help with attention, arousal and adaptive responses. 

“Once you sort of identify or come up with the right sensory diet, things become more manageable for the parent. You have some order and control over the day.”

Some parents told CNA that picking their battles is crucial, as is accepting that their child needs a “space to meltdown”. Allow them to throw tantrums and kick things around in their room, for example.

Teaching her son the “right emotional vocabulary” from young was the game changer for Ms Chong. “The positive ripple effect is Maddox is able to unpack his feelings to recognise his trigger points early, then regulate himself better," she said. 

Having a supportive employer also allows parents to focus on finding the right interventions for their child in their younger years, added Ms Tan, who works in research and development. Her boss allowed her to work part-time for three years to spend more time with her son.

“Actually, I wanted to quit (my job) to take care of him. I was very grateful that my boss held me back. He said, ‘Look, if you quit to take care, this will be a 100 per cent problem. You need to feel like you’re living, like you have another life, so that this will become a smaller problem,’” she recalled.

“I didn’t understand what he meant at the time, but looking back, it was the right decision. At least this is not my whole world, because it can be very depressing.”

When the right support is in place, a silver lining is possible, according to Ms Lim, who decided to send her son for therapy when he was four. That, and drum lessons. 

“Even before he was one year old, he was hitting pots and pans with an excellent sense of rhythm. There’s this neurological inconsistency whereby loud noises like lion dance would freak him out but the sound of drums doesn’t affect him,” she said.

“So I brought him to a drum school when he was four-and-a-half. The teacher told me that he’s a bit young but he can start because he’s very good. That’s when I realised he has this gift of perfect pitch.”

To ensure he kept up with his practices, Ms Lim also picked up drumming and now occasionally gigs with her own band outside her full-time job. When she struggles to find the right musical key, she turns to her son.

The same hypersensitivity to sound that once triggered multiple meltdowns in both mother and child now saves the day – and their relationship.