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Nigel is my third child. Though it was an unexpected pregnancy, nonetheless, it was the happiest news, and my husband and I decided on keeping him. At the beginning, everything seemed ok; he would obey every instruction. Once, I went to the market with him while my other children were at school. He sat outside on a chair while I went inside to buy my stuff. My friend asked him where I had gone and he told her, and continued to sit quietly there. Another time, I went travelling with friends and family, and he was very bubbly and would converse with my friends. Even when Nigel went to P1, everything was ok.
However, when he went on to P2, we noticed that when he had to go to school, he would be reluctant so we wondered if he was trying to be a truant. We kept pushing him and he kept crying. We didn’t think it was something we needed to be concerned about at the beginning. However, almost every night, he would have a crying spell, calling out numbers like multiplication and then crying. When morning came, he would be reluctant to go to school. He said he was scared of his Math teacher. I decided to go see the teacher and informed him that Nigel didn’t want to go to his class. The teacher didn’t see anything was wrong with all this.
Getting worse
When Nigel was nine years old in P3, lots of things happened. My mother-in-law passed away and my father-in-law required more attention and as a result, I didn’t take notice of Nigel’s situation. He totally shut down and didn’t speak a word. The relief teacher prompted me that something was terribly wrong and that he was far too quiet. She knew me well as she had taught my other sons. After she advised me to take him to see a doctor, I got a referral to a child guidance clinic at Outram run by the Institute of Mental Health (IMH).
There, they did an assessment and thought he might have autism. However, after the assessment, one of the doctors diagnosed him with what is called selective mutism. This was all new to us as we had never heard of such a condition before. When we Googled it, we found that it was associated with social anxiety, being out of one’s comfort zone and not able to speak. The doctors said the condition is fairly common in the US but not in Singapore and hence, no support here. They didn’t tell us the cause but thought it could be some anxiety that he experienced when he was younger and suggested getting him into various programmes. My first thought was that it could be the Math teacher that had caused the anxiety.
Nigel saw a psychologist (who later left for further studies) to help him cope with his anxiety and a psychiatrist to prescribe him with medication. Every four months, the psychiatrist or resident doctor kept changing, which was tough for Nigel. In his case, he needed to build a relationship but with each change, it didn’t help. He would go and barely speak. There was one time, he was seeing a resident doctor. I had told him Nigel was seeing and hearing things that weren’t there. The doctor ended up prescribing medication.
As I was working from home at the time, I was able to monitor him. He would get “stoned” after taking the half tablet. Previously, when he was at home, he would talk but now he wasn’t talking at all at home or outside, and I panicked.
In 2010, I got referred to a doctor at Mount Elizabeth Hospital. She remarked that the medication that was prescribed was too strong and to not take it. She then referred me back to the child guidance clinic but this time to a specific doctor. We couldn’t keep going to Mount Elizabeth Hospital as it was just too expensive.
In between those appointments, I decided to try various self-esteem programmes like Adam Khoo as well as speech and drama classes. I even enrolled him and I into a Reiki self-healing course and mind-mapping courses for him, until my husband queried me whether all this was going to work. I didn’t know that answer but I figured one would eventually hit his hot button. At the time, I also had to arrange a nursing home for my mom as she got into an accident.Though Nigel eventually did start talking at home, I really couldn’t figure why he wouldn’t talk outside and it was very frustrating. Once I put chillies into his mouth just to make him talk but that didn’t help at all!
When we went back to the child guidance clinic, the doctor examined the challenges he faced in school. The biggest challenge was when he went to school, he couldn’t blend into the school culture. He just never would respond and people would then walk away, but he would tag along. Because of his behaviour and being different, he would be called a freak and get bullied.
Ups & downs
When he was in Secondary 2, while still seeing the resident psychiatrist, he was further introduced to a school counsellor. I would also often get calls from the school counsellor that Nigel had one of his meltdowns. Once, I was at the convention centre and got a call from the school. I had to rush down or ask friends to help to send him home. When he came home, he would complain to his brothers.
I would always try to tell my two other boys to put themselves in his shoes and to understand. Nigel studied in the same school as our second boy and he would often help when a problem arose. However, after our second boy left the school, it became a lot more challenging for Nigel and he would get bullied more often.
After ‘N’ level, he could go on to ITE, but he told us he didn’t want to continue studying. We suggested to him to get involved in jewellery design to support my sister-in-law in Indonesia. At that time, I took on a second job (midnight shift selling perfume) to get extra income because of my mom. After one month, Nigel decided to return to Singapore. I didn’t know that a lot of things had happened over there. My brother-in-law had passed certain remarks about how Nigel walked and this all hurt him and as result, he didn’t speak or respond. When the phone rang during his stay in Indonesia, he didn’t pick up which further incensed my brother-in-law to a point where he called Nigel a burden. Though he didn’t talk, he could hear. When he returned from Indonesia, he asked me whether he was a burden to me. Also, upon his return, he suffered depression.
In 2011, when he was 17, the psychiatrist suggested YouthREACH in Tiong Bahru which had kids with different conditions like autism and schizophrenia keeping busy with different activities such as horse riding. Since he wasn’t going to school, joining the place would keep him occupied but there were ups and downs as he saw kids have meltdowns which affected him. My other sons kept asking if it was a good idea having him there, but he loved the place. He never had any friends during his secondary school but at YouthREACH, he got close to one of the kids.
In 2012, Nigel told us he wanted to go back to school. He got into ITE’s engineering course but he later told us he didn’t like it. We appealed for him to take another course in office skills management. His motor skills were not good as his hands would shake during soldering. The school finally accepted his appeal but during the interview, he couldn’t speak and the school found it difficult to assess him. Nonetheless, he managed to get a one-month probation. He didn’t talk but followed the instructions, which was a saving grace. A social worker and I supported him during this time but I slowly weaned off after one week. The lecturer shared that Nigel didn’t give them any problems, while other students did, and said it was ok to continue.
Just as things were looking up, other challenges came around. Again, he got bullied and experienced a meltdown, hitting himself against the wall as he didn’t know how to deal with it. But because he worked hard, the school was kind enough to allow him to study at home a month before the actual exam. He almost gave up but didn’t. He got 3.25 over four on the GPA and progressed to higher NITEC and studied for another two years. As he progressed, I was always proud of him. Despite all this, Nigel decided against going on to further studies. I asked him what he wanted to do and he said he wanted to work.
Working
I wasworried after higher NITEC whether people would employ him. Back when he was in secondary school, he wanted a side income so he worked at Subway, butonly for two days. His reaction was slow. I kept telling him to take it as a learning process and maybe what they wanted was a fast worker.
At the age of 13, Nigel asked me what happens if my husband and I were not around and I told him that his brothers would look after him. He said that they would have their own families so how would they be able to look after him? We started looking as to how to support him and we even explored opening a franchisee. However, as it was probably not a good idea and expensive, we looked at other options.
Previously, I was in the financial sector as an insurance advisor but later I got involved in an e-commerce business where I market a US doctor’s anti-ageing product. Now three years doing it, I am hoping to create a legacy for him.
After higher NITEC, he went to work for one of my friends. I tell Nigel that every day is a bonus and that sometimes it is important to let people have their way. It has now been two and a half years being at the company. He does administrative work such as filing of documents and packing, but no frontline.
Bringing awareness
During ITE, Nigel kept bugging me that he wanted to write a book called “Silence is not golden” to bring awareness about his condition and to explain that his condition is different from autism. The more he wrote, the more tears came out. It took him a little over a year to finish the manuscript, which he launched in 2016 during Selective Mutism Month in October. It was a real achievement as he would go to different events selling his book and I would accompany him. As a result of his book, he has been involved in three human libraries. Through all this exposure, he is talking more openly and slowly coming out of his shell.
When we take a portrait shot, I am always concerned Nigel wouldn’t smile. But in 2017, when we took one, he requested whether he could take it with his book and he did smile! I think he has forgotten to smile. When taking a picture, he would be fearful and was very conscious. I feel he is now smiling from his heart.
A mother’s support
Looking back on this journey, I was very helpless. At one stage, I said to Nigel that he and I should kill ourselves.
This can’t work, that can’t work. If I didn’t give him the support whether it worked or not, no one would support him. There is no manual what a mother should do in the various instances. I am the only one that can understand my child. If I feel it is right, I would go ahead and try. My wish is to have my son walk with dignity and pride. He likes to play the drums and likes drawing. I let him try.
My biggest lesson is to learn when to let him go. I have learned patience as I can be a “Fast & Furious” character. I used to ask the question – why me? I know that the Lord will give me wisdom in every situation I encounter even though it can be at times a struggle. I find that every mother is very strong especially when it comes to supporting their own children.
Janet Wong, 54, is the primary caregiver to her son, Nigel.
** Though there are no figures on selective mutism here in Singapore, about seven in every 1,000 American children suffer from selective mutism, according to the American Academy of Child and Adolescent Psychiatry. Left untreated, some grow up depressed and reclusive.
** To purchase Nigel’s book, you can go to silenceisnotgolden.me. Nigel and Janet are starting a support group for those with selective mutism and their caregivers. To be a part of it, e-mail to: nigelsilenceisnotgolden@gmail.com.
