Meet Nigel- he has lived with Selective Mutism (SM) since he was 9-years-old. At the age of 21, he decided to write a book about his journey, to help shed light on this little-known mental condition. Today he and his mother, Janet, sit down with us to share about what their journey has been like as mother and son, patient and caregiver.
Nigel's voice is quiet but determined. The pauses in his speech give me the impression that every response is being carefully considered before articulation. This is someone who has learnt the value and weight of words over a lifetime, and I wonder at how much it took to grow that mute, helpless 9-year-old boy into the independent man speaking to me today.
1) Tell me about your condition
SM is an anxiety disorder that prevents me from speaking in certain circumstances when I am out of my comfort zone. Every human being experiences ‘normal fear’ but for SM, it is way beyond that- it doesn’t just affect my speech, it also affects my motor coordination. eg. [in the past], when I wanted to go to the toilet in class, I couldn’t even raise my hand. [In contrast], shyness is a character trait where those who are shy have difficulty speaking to people they are unfamiliar with but they can still function.
“Some people think that those with SM just like to ‘switch off’- but it is not by choice, it is automatic.”
I would say I am an extrovert but my condition hinders me. If I am feeling comfortable, like now, I can respond but when the symptoms become very active, I will totally shut down. Even a simple ‘hello’- I can’t. People label me as an introvert but they don’t know it is because of my condition. I would say SM is very devastating, just like any other mental illness.
2) How did you first find out about your condition? How did you feel at the time?
I knew there was something wrong with me when I was 9 years old, because I wasn’t speaking in school. All my classmates could talk and be themselves, how come I couldn’t talk? The anxiety was so paralyzing that even non-verbally, I couldn’t write to communicate with my peers. I felt that I was very weird and the odd one out. People would avoid me because people fear what they do not understand- that’s the mentality of humans.
Nigel’s Mother: I did neglect [Nigel] because that year our family had another crisis. And at home, he was very bubbly and would talk a lot. It was only until a relief teacher pointed out that Nigel was ‘too quiet’ at school. She asked me to check him out at a polyclinic and they referred us to the child guidance clinic (at IMH). At first the doctors suspected it was autism, but after doing the assessment, they realized it was not. They gave us the term ‘selective mutism’- that was the first time we heard about it.
“After the diagnosis, I had mixed feelings. It was a relief to get an answer to my question of why I was this way. But it was also a label- a diagnosis labels you and people start to stereotype you.”
3) How did others react? How did this affect you?
Sometimes, people compare me with ‘Autism’ or ‘Downs Syndrome’. It makes me very angry. I know that people with these conditions have their own struggles but don’t forget that SM is a different condition with its own troubles. You don’t see people comparing those with diabetes with cancer patients or stroke patients. It’s not fair.
In school, people would either avoid me, treat me as transparent or purposely say things for me to hear, especially behind my back. Just because I moved very slowly in school (because of the psychomotor symptoms of SM) people thought that I didn’t have feelings. When they said the bad things, I would suppress my anger and hurt. Only when I got home would I throw tantrums and shout at my brothers and parents. I would tell them ‘you see how people treat me in school? 我真的很幸苦你知道吗？(do you know how much I am suffering)’. But at that time, my family was unable to comprehend- they would say ‘you are not making an effort. Just talking only what, what is there to be scared of?’
At the beginning, my family was in denial. They couldn’t accept the diagnosis and so they often got frustrated at my behavior. I remember during Chinese New Year, I was physically incapable of greeting my elders and thanking them for the angbaos (in Chinese tradition, elders give the younger generation red packets for good luck. It is considered rude not to return with a salutation and well wishes). When we got home, my family would get angry and punish me for not speaking up.
“I felt that I was already dealing with my own condition yet I still had to get punished by my family for something that I didn’t have control over.”
4) What are some challenges you have faced and how did you overcome them?
School is the most threatening environment for people with SM. It is very fast paced and at ITE I had to work with group mates. Thankfully my groupmates were very compassionate- they knew I had difficulties. My teacher also shared with them ‘give Nigel more time and eventually he will be able to say a few words’.
“When people with SM say a few words, you have to acknowledge them because to you it may not seem like much, but for us, even just one word is a big accomplishment because it takes a lot of effort to speak.”
Because of my slow movements, strangers often stare at me when I am taking the bus or the train. I have a phobia of crowds so I will stand in one corner and close my eyes very tight to block everyone out- it is my coping mechanism. Last time, I needed my mother to accompany me everywhere but now I am more independent, which I feel proud of it.
5) What/who has been helpful and why?
My mother. Ever since I told her I wanted to write the book, she has been helping me a lot. Now she is often my voice- she tells people ‘please support my son, he wrote a book. It is not easy for him to write a book because of his condition- please support him.’ I am grateful for that. I feel that finally my own mother understands what I have been going through- I have been waiting for this for a decade.
YouthReach has also been helpful. I have been coming here for 5 years now. During my time here, I have learnt to interact with the other youth. In school, I had felt so left out but here-because the other youth have their own issues- I feel that we were on the same frequency. In fact, I have a friend from here whom I share most of my problems with. It was because of YouthReach that I grew more confident and decided to apply for ITE.
I would say the social workers here are like my ‘second guardians’. [In particular], Christine has been very supportive. She has been my social worker for 4 years. When I went into ITE, Christine accompanied me on the first few days of orientation so I felt less threatened by the environment. She also helped me explain to my classmates that I had SM and that I needed time and support to slowly adjust.
6) How has this journey changed you as a person?
When I see other children with special needs, I am able to empathize with them. Although we don’t have the same condition, I can relate to their helplessness.
People always say talk less, listen more. SM has made me better at listening.
7) How have you moved forward?
I started writing my book 1 year ago. I decided to write about SM because it is not common and many people don’t know about it. In the US, there are a lot of groups for SM, but in Singapore, I think I am the first person with SM to step out of their comfort zone and tell others what it is like.
I have also been working for the past 1 year as an exhibition assistant. I do packing of catalogues which doesn’t require me to talk much. My boss is understanding and I have been coping well.
I have also been learning the drums for the past 1 year and just bought a drum set with the money I earned.
Nigel’s mother: Nigel also does caricature. Those are his ‘passion jobs’- his drumming and his drawing. His‘survival job’ is his exhibition work. Next time if he gets good at drawing, he said he may want to be an artist on the streets!
8) Is there anything you would like to say to others with SM?
“Be who you are. Just because you can’t speak as well as others, doesn’t mean you are not talented.”
You can always direct your positive energy to other things. I have SM but I can write a book, do drawing, have a job- I can still have a productive life.
9) What would you like to tell to those who know someone with SM?
Bring them to see a doctor soon to assess if they have SM or to rule out any other conditions making them behave this way. If it is SM, there is a lot of therapy that needs to be done. It took me 10 years to be able to be talking to you so comfortably right now- it is a very long process.
And it is not something that can just be ‘willed’ away. It’s like telling someone with Major Depression- ‘stop being so sad, just be happy’. It is a medical condition, it doesn’t go away just like that.
Part 2: Insight into a Caregiver's life
Nigel’s mother, Janet, is strongly passionate in her descriptions. I can hear the love she has for Nigel but also the maternal instinct to protect and the pride of how far her son has come. It is only in the vulnerable moments of reflection that we glimpse how difficult the journey has been for her as the caregiver too.
1) Tell me about a typical day caring for Nigel
At the beginning, I would accompany him every day for different things. I would walk him to school and after school I would wait for him. When he was older, I tried to train him to take the bus on his own. I remember he would go on the bus and I would follow behind him. He never noticed me because [on the bus] he always tensed up and wouldn’t look around. I followed him for 2 weeks, just to make sure he alighted at the correct stop.
When the bus was crowded, he would move slowly and people would get impatient and say ‘don’t know how to move arh’.
“It made him sad of course, but even then, I couldn’t step in. I just had to let him know that in real life there are all kinds of people around and sadly, not everyone has the patience.”
2) What challenges did you face?
When Nigel was younger and faced problems outside, he would bring them back home. At that point of time we had our own problems and we didn’t know how to comfort him. I condemned myself because I felt that I could not do enough for him.
“Every day, when he stepped out of the house, I would worry. As a parent, you always feel sad when your child is being bullied- whether your child is ‘normal’ or has a condition.”
Especially for Nigel, his defenses are very low when he ‘shuts down’- that is my challenge, because I cannot be there for him 24/7. I always tell- him no matter what people say, you have to be positive and love yourself first.
Some people thought that I was being overprotective but it really is not easy. There are reasons why I needed to give him that extra ‘shield’- I think only mothers who have children with special needs will be able to truly understand. The moment he tells me ‘mummy I am ready to do (something) on my own’, I am happy to let him go.
3) What motivates you to keep going?
Sometimes I get emotionally ‘dried-up’-
“But I tell myself that if I fall, they (my children) will also fall- I need to make sure I love myself first so I have the strength to love my children.”
4) What has helped you cope?
My husband and my other 2 sons. In the beginning, my 2 sons didn’t really understand why I gave extra attention to Nigel. I told them I love you all equally but 弟弟 (little brother) needs extra help. Now they are very supportive- in fact, his oldest brother is the one who helped design his book cover.
My husband also has the patience to sit down with Nigel for hours, listening to him. Sometimes I am so drained that I have no patience, so it is good that my husband takes over and allows me to get away for a while.
My friends too are wonderful. One of them is an author and he was the one who helped Nigel with the book-his comments and feedback gave Nigel a lot of confidence and encouragement. Some of my friends also like to ask Nigel out for meals on their own accord, to check how he is doing. This is very helpful because Nigel lost a lot of confidence in human touch during all the years that he was misunderstood. Their friendship reassures him that there are people who are loving and who empathize with him.
5) Do you have any advice for other caregivers?
Support is very important. If you have a spouse or children, siblings or friends, share with them. These are people who will give you moral support even though they cannot take over your challenges.
It is also good to find out more about your child’s condition so that you can ‘go into their world’. Some caregivers get very agitated because their children don’t do what they want. Eg. Don’t want to bathe when it is time to bathe.
“But instead of getting your child to ‘walk out’ into your world, you can try going into theirs.”
At first, they may not pay attention, but after a while, if they see you are making an effort to enter their world, they may open up and talk to you. From there, it is easier to step in and guide them.
Thank you for sharing your experiences with us!
If you would like to find out more about Nigel’s journey, his book ‘Silence is Not Golden’ is available at Booktique (Citylink Mall). Please contact Janet Wong (firstname.lastname@example.org) for more information.
Thank you for taking the time to learn more about mental illness- please help spread the word!
Team Mental Muscle
Let’s change the way we view mental illnesses today!