“A ‘hello’ is so easy to say. But to them, if they are able to say ‘hello’ to you, it’s already a big step,” said Ms Janet Wong, a mother of three. She is a primary caregiver to her 26-year-old son, Mr Nigel Ng, who was diagnosed with selective mutism at the age of 9.
Selective mutism is a rare anxiety condition where a person fears in having to speak in some social settings.
Janet often received feedback from teachers who observed that her son is not talking or responding in class. However, she found it puzzling as he communicates with his family members at home. Juggling with her previous job as an insurance agent, she also often felt frustrated with the multiple calls from teachers and having to rush down to school right after an appointment.
Janet was first prompted by a teacher about Nigel’s unusual quietness when he was in primary three. She then decided to bring her son to the Institute of Mental Health’s Child Guidance Clinic. There, he was diagnosed with selective mutism. It was the first time that both Janet and her spouse had heard about this mental health condition.
The journey was challenging for both parents and they learnt through the hard way, she said. Attributing to the lack of a support group then, they relied on the Internet and his psychiatrists to learn more about this mental health condition. They were also in denial, often questioning why he could not speak a word.
Janet also recalls Nigel commenting that she did not understand him or what he was going through. Undefeated, her mother's instinct spurred her to “walk into his world” - learning meltdown coping techniques from his psychiatrists and psychologists; enrolling in parent-child events with Nigel and even working alongside social workers.
She also supports him by training him to take the public transport. Initially, both parents followed him as he learnt to travel. When he started commuting alone, he would sometimes get flustered about taking the wrong train. Even then, he would not dare to ask over the phone, preferring to send texts than to make a phone call. Overtime, Janet learnt to send texts to him instead. Now, he is confident and able to travel independently.
Nigel started to grow from strength to strength. To enable more people to gain a better understanding about selective mutism, Nigel shared his life story through his book, Silence is Not Golden, which was published in 2016. Two years later, he founded DoorSING, which is a social enterprise committed to supporting persons with selective mutism and their caregivers. All this time, Janet plays a supporting role to her son.
“When they (children with selective mutism) want to speak, they cannot speak… So eventually, I became the voice,” said Janet. Other than organizing events for the community, she also actively shares with other parents how she coped with her caregiving journey. As she recalls her struggles in earlier days, she wishes that this community will bring hope to the parents for their children.
One of the parents in her support group had also introduced Caregivers Alliance Limited’s Caregivers-to-Caregivers Training Programme (C2C) to Janet. When she decided to attend the class, she wanted to better understand other emotional issues and create awareness of selective mutism through her sharing with other caregivers. In October 2020, Janet completed her twelve weeks of lessons and graduated from the C2C programme.
Her biggest takeaway was the importance of self-care.
“Previously, I really didn’t know how to practise self-care. I would keep on focusing on him and how to make him better,” she said. When Janet meets her friends, she would feel uneasy about enjoying her respite and not being around her child should he experience any meltdown.
Now, Janet is learning to be more active in setting time aside for herself and accepting others’ help. She also enjoys going for nature walks, listening to music and let her close friends check in on Nigel whenever she needs a short break.
Throughout her caregiving journey, her husband is her main support. While Janet plays a big role for her son, her husband plays a bigger role to her, she said. When he is back home from work, he lends her a listening ear and temporarily relieves her of caregiving responsibilities by talking to Nigel.
When Janet’s other two sons graduated, they decided to take a family portrait and Nigel requested to hold his book in the picture.
“I have never even imagined that we can have this family portrait,” she said, adding that he had forgotten how to smile during his journey. Seeing Nigel smiling confidently as he held on to his book in the family portrait was all it took to warm her heart.
Presently, the DoorSING support group has reached out to 50 parents. Janet continues being a strong advocate for mental health and caregiving. She hopes that the public would be “more accepting of people who have their own struggles”.
If you are a caregiver or know of a caregiver, learn more about our C2C programme here: https://www.cal.org.sg/c2c
Support Nigel and his book at https://silenceisnotgolden.me/
For more information about DoorSING,
Email nigeldoorsing@gmail.com
Like DoorSING’s Facebook page https://www.facebook.com/silenceisnotgoldenbynigel
Or join its closed group https://www.facebook.com/groups/331809367552749