More youth caring for siblings with special needs

One childhood memory involved Ayano giving origami that she had carefully folded to children at a playground, only for them to leave it on the ground while pointing at her.

“I remember marching back up to them and saying, ‘You pick that up right now. My sister spent a few hours making them’,” Sawako recalled, adding that she cried afterwards as she was upset about how her sister was treated.

She also felt apprehensive about inviting friends home, fearing they would have a negative impression of her or her sister.

Sawako, now a student at St Joseph’s Institution, joined MINDSibs at 14 in search of other secondary caregivers who could relate to her.

Her parents are the main caregivers to Ayano, who packs earphones for Singapore Airlines at MINDS Regional Hub’s sheltered workshop in Queenstown.

Her father, Frederic Maury, 58, takes her hiking and to art classes, while her mother Yuko Arai, 57, guides her with daily exercises to address her scoliosis.

Sawako’s role is largely one of emotional support. She recognises the signs of her sister being overwhelmed – covering her ears or making repetitive movements to calm herself down, a behaviour known as stimming.

Instead of intervening during meltdowns, Sawako usually lets her parents handle the situation and later lends them a listening ear.

“I thought it was my job to ‘parent’ her as well, but over the years, I realised that is not the role I’m meant to play,” she said.

The family, who became Singapore citizens in 2024, has had frank conversations about Ayano’s future care plans. When her parents retire, she may move to a caregiving home.

Maury, a senior executive at a quality management company, and Arai, who volunteers with some social service agencies, want Sawako to have the time and space for her own pursuits.

“It has always been our philosophy to say she should not be burdened with this (caregiving). If she does it, that should be her choice,” said Maury.

MINDS’ Koh advises parents of special needs individuals to involve their other children in caregiving discussions early to ease them into caregiving if needed in the future.

Sawako hopes for more awareness about the support available for siblings like herself, and to see communities like MINDSibs’ grow through more frequent meet-ups.

She is also her sister’s advocate.

“I’m getting more used to talking about my sister with others and about what I hope society sees in people like her,” said Sawako.

Both parents said their younger daughter is mature and offers them valuable perspectives.

Added Arai: “Sawako helps us. And that’s a big help for us.”