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A is for APHID

I know aphids to be these green little insects that fly around garden plants, attach themselves on the stalks and branches, and then suck the sap out of them. In our London house, we have a garden and that’s where I came across these plant lice. They are common garden pests with around 4,000 species found around the world.

Here’s what I read on the internet regarding aphids:

“Aphids are small (1/8 inch long), soft bodied, pear-shaped insects that may be green, yellow, brown, red or black in color depending on species and food source. Generally adults are wingless, but some can grow wings, especially if populations are high. They have two whip-like antennae at the tip of the head and a pair of tube-like structures, called cornicles, projecting backward out of their hind end.” (Source)

I hate aphids for they can destroy your plants by sucking the sap out of them; the English word ‘sapping’ derives from the connection we have made with sap being the life force of plants and that once drained, that life force is diminished. My experience in dealing with aphids have made me detest them. But I love how in the English language, acronyms spell out certain words, some are meaningful words while others can be read easily. For the latter, I can think of UNESCO – United Nations Educational, Scientific and Cultural Organisation. For the former, I can think of Scuba – Self-contained Underwater Breathing Apparatus. Actually, I only just discovered Scuba is an acronym.  I’m a scuba-diver, but I’ve used the word so often without realising that it’s an acronym that has become a noun and a verb. It’s amazing, there are so many things we take for granted in life. But I’m glad to be learning everyday.

Did you know that an aphid is also someone who is in high denial? Well, I didn’t, until I did the research. An APHID in autism glossary means A Parent Highly In Denial. Don’t you just love acronyms?

Denial is quite common amongst parents when their child/ren has/have been diagnosed autistic. It’s a wave of shock hitting you hard. On the one hand, this is totally understandable, on the other it can be detrimental for the child/ren in terms of bonding and acceptance. Ultimately, denial will sap the child/ren from being the great person that they can be, no matter where on the spectrum they’re on.

In Open – A Boy’s Wayang Adventure, one parent is APHID.

“Oh Ben,” Mama sighs. “I don’t know, Sky. He’s not getting better and I don’t know what to say to him.” (Open: pp. 30-31)

Often, APHID comes to terms with their child/ren’s diagnosis but still thinks that there is a cure out there. It is very important to note that autism has no cure. There is no medication that can make an autistic person better. Associating autism with a cure projects the myth that autism is a disease. Autism is a neurological condition and autistics are as they are. As James Sinclair of Autistic and Unapologetic explains:

“Is there a cure for autism?

Possibly the most frustrating/annoying/upsetting part of having autism is the rate at which this question appears around the internet. Though this is something which I plan to discuss with passion later on, right now I am simply going to say ‘no’.” (source)

APHID mourns the loss their child upon diagnosis. In the stages of grieving, denial is the first stage that people usually go through in mourning. But there is grace in denial because this is the beginning towards acceptance. (source)

As Jim Sinclair (not to be confused with James Sinclair), an autism rights activist who started the Autism Network International, said in his essay, ‘Don’t Mourn for Us’:

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real.”—Jim Sinclair, “Don’t Mourn for Us,” Our Voice, Vol. 1, No. 3, 1993.

I hope that reading this post will have clarified certain things for you. Let’s celebrate autism rather than denigrate it. Let’s love our children for who they really are. Let’s work towards more #acceptance and #tolerance in our communities and societies. To end this story, I’d like to share another on how a particular APHID connected with her autistic son through her own self-discovery.

A Little Announcement. 

It’s 18 days to the book launch; I’m counting down to March 10. I’m looking forward to seeing friends and readers there. Come take part in the dialogue between Raymond Tan of Brainchild Pictures and me on representation, inclusivity and the importance of preserving our cultural heritage. [yes!! the book is an adaptation of The Wayang Kids.]

Purchase your copy of the book and take a photo with it and [hashtag] #OpenEveryChildMatter. Thanks for reading, always!

 

 

Image: Public domain. The life stages of the green apple aphid (Aphis pomi). Drawing by Robert Evans Snodgrass, 1930.

 

A is for Alexithymia

Alexithymia

\ā-lĕkhs-ĕ-thī-mē-ŭ\

Alexithymia is a Greek word with two parts: lexis meaning ‘word’ and thumos meaning ‘soul/heart/mind’. Put together, alexithymia is the clinical term used to describe the inability to recognise emotions and their nuances. People diagnosed with alexithymia have a limited understanding of the own self-experience and also that of others.

Emotions are intricate, textured and nuanced. There is a range of emotions which some individuals find difficult to articulate. For example, ‘hunger’, ‘tiredness’, ‘boredom’, ‘anxiety’ and ‘frustration’ may all be understood to look and feel like ‘anger’.

Alexithymia is one of the many presenting symptoms of autism. People suffering from depression also present alexithymia, and so do schizophrenics.

When was alexithymia discovered? 

The term was first mentioned in 1972 as a psychological construct, and was viewed as a deficit in emotional awareness. [Scientific America; 2014] Researchers found that approximately 8% of males and 2% of females have alexithymia which presents itself in “mild, moderate and severe intensities”. [ibid]

Researchers also found that alexithymia has two dimensions: cognitive and affective.

The cognitive dimension (thinking dimension) indicates the difficulty in some individuals in identifying, interpreting and verbalising their feelings. The affective dimension (experiencing dimension), on the other hand, indicates the difficulty in some individuals in expressing, imagining and reacting to either their own or other people’s emotions.

How do we help individuals with alexithymia?

The best way to help such individuals is to love them… patiently. Of course love is the encompassing umbrella to any offers of assistance. But love manifests in different ways as do all emotions: Love can scold, beat, shame and mock. These are the negative manifestations of love and do not help individuals with alexithymia.

Living with alexithymia already compounds the difficulties of daily life for individuals on the spectrum. Consider expanding your emotional vocabulary to help the person with alexithymia. “I’m feeling frustrated because I can’t get the computer to work. What about you?” or “I’m tired, let’s get a takeaway.” Ask “You seem angry. Is something bothering you?” to help the person you love categorise or label how they are feeling. “You look anxious. Is it because of the exams coming up?” will help someone focus on why they feel a certain way at a certain time. Likewise, “You seem happy, was the ice-cream yummy?” is another way to give positive feelings associated with a stimulus a name.

Talking about your own emotions can sometimes help encourage those with alexithymia to express theirs. “Can I tell you how I feel about the situation?” – when framed this way, the speaker is also asking permission to talk about how they feel. Take your cue from the person you’re asking. Don’t forget that autistics are often overwhelmed by their own emotions which they find hard to express. Some individuals on the spectrum may be encouraged to express themselves if you give them the space and time to, others may clam up further. No matter what, be patient – always. 

Treating Alexithymia

Thankfully, alexithymia can be treated. There are many ways to help yourself and those who you love. I’ll just list three.

A good way is to encourage your loved one to keep a journal. When I was in middle school, and often frustrated, and had difficulty in expressing myself beyond always being angry, a teacher taught me how to express my feelings by journaling them. She gave me a thesaurus to help me find other words to ‘anger’ which includes ‘anxious’, ‘frustration’ and ‘fearful. In this way, I increased my range of words to use which helped me in expressing myself better. In another, I learnt to ask myself why I was feeling the way I was; I learnt to navigate my emotions. This led to self-awareness and self-experience.

Another way is to read books. Authors are compelled to find other words to describe emotions and feelings in their novels. Affiliating with a character in a book can often help us deal with our own experiences and emotions. Research has shown that reading can help us better understand ‘Theory of Mind’ [discussion to come in another post], engage in expressive language and develop linguistic skills to describe a story and personal narratives.

Immersing oneself in the expressive arts is another great way to cope with alexithymia. Acting, dancing and music are all different forms of the expressive arts which can help us express ourselves beyond words. Sign up for these courses in your communities. It’s also a great way to meet people.

Remember that emotions are abstract constructs and can be very difficult to describe in their layered nuances and textures. But ‘anger’, ‘happiness’, ‘desperation’, and ‘love’ are all universal emotions that everyone feels.

The Scream by Edward Munch, 1893. Image courtesy of Edward Munch Organisation 

 

On Synesthesia

Synesthesia is a perceptual phenomenon in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.” — Wikipedia.

In my book, Open – A Boy’s Wayang Adventure, the protagonist, Open, likes to read. He reads “about anything and everything”. (Open: pp 7). He would sometimes consult Wikipedia when he wants to find out things. He also perceives his world differently from the rest of us. For example, he describes his feelings in relation to one of the five senses—taste. Here is an excerpt from Chapter 7, where Open talks about how he feels on learning that Mama may be leaving him to work in New Zealand.

I will not be seeing Mama for a few months when she goes to New Zealand. It will take more than 10 hours to reach Auckland by plane. That’s very far away. I will not be seeing Mama every day.

“When will you go?” Papa asks.

“They’re still deciding…”

“It’s just that Open…”

“Oh Ben,” Mama sighs. “I don’t know, Sky. He’s not getting better and I don’t know what to say to him.”

I am tasteless inside.

Some people, like Open, are synesthetes. They often experience one sense using another part of their sensory organs. For example, listening to music can trigger a vision of bright lights in some people. In another case, known as grapheme-colour synesthesia, letters and numbers are seen as colours or coloured. Open experiences his world in a lexical-gustatory way, where certain tastes are experienced when hearing certain words or when certain people are associated with particular tastes. In chapter 7, Open feels “tasteless inside” when he hears his mother uttering “Oh Ben”. Like many lexical-gustatory synesthetes, Open expresses his feelings, sadness in his case, through tasting it.

A well known synesthete was Wassily Kandinsky. He experienced visions of colours in motion when listening to classical music. The moving colours correspond to the movement in the music. In his paintings, you will often see dashes of colours—sprays of blues, swirls of violets, glares of yellows, circles of reds, lines of black—rendered in watercolour. Take for example, his Composition VII (1913), the canvas is a mess of colours, distracting to look at. But in this piece, Kandinsky is expressing a profound sense of the spiritual. He often associates and ascribes certain emotional qualities to certain shades of colours.

Wassily Kandinsky is a Russian artist (1866-1944). He was also an art theorist, often talking and discussing art with his friends and in lectures. Kandinsky is credited with being the first artist recognised to have painted the first work of pure abstraction.

Kandinsky is very grandiloquent in expressing the processes at work when painting: “Our hearing of colours is so precise … Colour is a means of exerting a direct influence upon the soul. Colour is the keyboard. The eye is the hammer. The soul is the piano with its many strings. The artist is the hand that purposely sets the soul vibrating by means of this or that key. Thus it is clear that the harmony of colours can only be based upon the principle of purposefully touching the human soul.” (The Guardian, 2006)

Emotions are too abstract to describe in real terms. Associating an emotion to a certain taste or colour, often helps us picture how we feel concretely, in my opinion.

I would be happy to hear what readers have to say about synesthesia. Please leave your comments below. Remember that this blog may be read by children who have read Open and want to discuss the book here. Do remember to be polite and mindful that young minds may be present in this space.

If you haven’t purchased your copy of Open – A Boy’s Wayang Adventure, you can buy it here. For Singapore readers, the book is sold exclusively at Popular Bookstore until April. To review Open, you can go to Good Reads where the book is listed.

To participate in Instagram, take a picture with the book and hashtag #OpenEveryChildMatters, @evawongnava, to share about your reading journey. I would love to hear from you.

Every Child Matters

Today has been an emotional rollercoaster ride of sorts.

It all started this morning at the memoir writing class I attended with veteran children’s book writer, Emily Lim. She is also a memoirist who wrote about a period in her life when she lost her voice due to a rare neurological disorder called Spasmodic Dysphonia. She struggled for 10 years with this condition and finally has her voice back; it is now gently whispery with a character of its own and she sounds positively divine. Her story is one of heroism against all odds. Heart wrenching. Encouraging. Miraculous. Her book, Finding My Voice, is a page turner. I finished it in one night’s reading and you can too. Her story touched me in so many ways and it will touch your lives too.

Emily also conducts workshops on memoir writing. I’ve always fancied myself writing memoirs of sorts. I started with blogging about my food trails when living in Paris. The blog soon took off with a life of its own. With each food discovery, I also discovered that recipes themselves have stories of their own which led me to researching the myriad ways of cooking and eating the many familiar but taken-for-granted dishes of my childhood; these researches formed the backstory to the memories of savouring particular dishes with friends and family. Hence, the blog became a food memoir which traces my journeys in the City of Light looking for veritable Asian dishes because I was missing home. Now, my life has taken another path and I’m now a freelance writer, with a children’s title to my name. The food blog has had to take a bit of a hiatus, unfortunately. But I’m sure that with my next writing venture in mind–memoir writing, the blog will rise from the ashes iminently.

The next thing that happened was listening to Maggie Lai, another memoirist, tell of her story in writing a memoir about the period in her life when she was an educator to wayward teens in an educational institution where her students saw very little hope in their lives and “where some say “It’s The End” [book blurb]. In her memoir, Raw Diamonds, Maggie traces her experiences of being that educator to those who needed boundaries set, encouragement beyond the call of duty and embracement of a kind that some children have never had.

As an educator in my past life, I understand the challenges Maggie went through in trying to bring the love of learning to students who can’t see the importance of education in their lives because their worlds have been turned upside down from abuse, neglect and poverty. Every child mattered to Maggie who struggled to make a difference in these children’s lives. Her story resonated with me. It triggered memories of being a teacher in an inner-city London comprehensive where more than half the lesson time was spent in setting boundaries for teens who would throw their pens at me, disrupt the lesson at every juncture or talk incessantly amongst themselves. It took me a good part of 7 months to gain respect from my class. It took a personal story of struggles that struck a chord in these teens I was teaching because my story resonated with their own struggles of being a constantly overlooked teenager that society turned a blind eye to because they didn’t fit into the mould. Square pegs round holes, was what my Head of Department called these kids.  Every Child Matters, was what I learnt. “This is what inequality looks like” was another lesson learnt.

The following thing that happened took place after the workshop.

In a rather busy area of town, there is a shopping mall, specialising in books and art supplies, housed in an old, lacklustre monstrosity of a building, a go-to for locals looking to buy second-hand books, past-year exam papers, books and stationery. There, I quickly found my way to the most popular bookstore in Singapore, aptly named… Popular Bookstore. I wanted to see if Open – A Boy’s Wayang Adventure has been stocked.

Imagine my joy when I saw those blue books sitting on two shelves independently. Blue is Open’s favourite colour, by the way. So, in discussing the design of the book cover, it only made sense to have the background in blue. Many folks have asked me about the illustrator who worked on the cover. I’m so privileged to have worked with an illustrator whom I met because as many children book writers will know, writers and illustrators can sometimes live across oceans and never meet. Liz Lim is young, likeable and super talented.

Emotional rollercoaster ride.

The minute I saw those blue gems shining in their own light under some very bright lights provided by the bookstore, a lump immediately formed in my throat. You mustn’t cry. No, no, I won’t cry. Keep a straight face, get over yourself. And I did. I composed myself, made the hubby take some photos and even managed to sell a copy of the book to a lovely bespectacled boy who was looking for suitable reading material. I asked him if he’s heard of a condition called autism and he said no. I went into overdrive and persuaded him, rather his mother, to buy Open so that he can learn about the world of a little boy who lives with autism. The mummy kindly bought the book and I obliged with an autograph dedicated to Wayne. If you’re reading this, you get a mention, Wayne, for being a risk-taker and choosing this story over another one that you could’ve asked mummy to buy. Well done, you!

For those of you who don’t know where Popular Bookstore is, they have a website with a store locator. That’s for those who are visiting Singapore and want a copy of Open. Treat the book as one of the many souvenirs you’ll be buying. There’s more packed in there than raising awareness of autism.

Every Child Matters.

When you purchase your copy, please take a selfie with the book and hashtag, #Openeverychildmatters. Spread the love of reading books, be that risk-taker like Wayne, who chose a book with text over a graphic novel. [disclaimer: nothing wrong with graphic novels, I read them too.]

#Openeverychildmatters

 

Quote of the Day

“Papa tells me that my eyes shine with light too and that I must remember to look people in the eye so that they can see my light.” — Open – A Boy’s Wayang Adventure —

 

It’s not often that I get quoted.

And if I do, I’d like to be quoted for the right things and for saying something meaningful. Who wants to end up with a [hashtag] #dumbthingssaid, right? Certainly, not me.

I went into the publishers – Ethos Books – yesterday to sign some copies of my book. I wanted my first 50 readers to have a special signed copy. They deserve it for being so supportive.

For those following me here, you may already know that my tagline is –to a more open and inclusive world– which is found right under my humungous logo photo. It’s not that I wanted to make that picture of myself so big when viewing on desktop. It’s just that the theme I’ve chosen for the author website just makes my image come up this big. If you’re spooked, I suggest a friendlier sized picture of me on your mobile or tablet.

Back to quotes.

Of course, being at a publisher’s office means being surrounded by books, not just my own, of course. My eyes were attracted to the many wonderful book covers on display, the books which were still wrapped on the shelves, and new titles ready to hit the shops. So, what does a writer and lover of books do? She buys books, of course.

I was chuffed to be buying Charmaine Chan’s The Magic Circle and This is What Inequality Looks Like, essays by Teo You Yenn. I’ll be blogging about both books in this space later.

A shopper must carry her purchases in a bag.

The team at Ethos handed me my books in a canvas bag with lots of words on it. I didn’t take much notice of the words precisely except to note mentally that it’s really a very suitable shopping bag for two reasons: they’re a publisher so words are their raison d’être and canvas bags are environmentally friendly which always gets a thumbs up from me.

Then, Suning, my editor said, “Look, there’s a quote from your book.”

That got me excited and I squinted hard to find the line from Open amongst the sea of words. And there it was: “Papa tells me that my eyes shine with light too and that I must remember to look people in the eye so that they can see my light.”

My eyes lit up too. My vision blurry from the tears welling up. I was so touched to see that line on the canvas bag. This does something good for the ego which must get positive feedback to thrive. I now belong to the many people out there who are being quoted.

You can quote me on this.

 

 

 

The Birth of A New Generation

D-day.

It’s the day every pregnant woman anticipates with anxiety, bated breath and excitement – the birth of her baby.

Look, folks, here is mine – Open: A Boy’s Wayang Adventure.

It’s hard to explain this emotion I’m feeling right now. Having a book published is not the same as birthing a baby, I know. I know because I’ve had two of my own. Trust me, giving birth without the influence of drugs is not something I’d recommend to anyone. I did it. Twice. Survived to tell the tale. But… Aw… I’d do it again because I survived to tell the tale and I can tell you that it’s fine. The best feeling in the world is the feeling you get when baby is placed on your stomach right after and then in your arms when swaddled. It’s beyond exhilarating. Indescribable.

Book.

What’s that gotta do with a baby, you ask. Well, a very famous writer once said that writing is easy, you just sit at the typewriter and bleed. [A free book to anyone who can tell me who this writer is (only one book to give away), so be quick.] Of course it’s not as bad as it sounds although this writer did mean by bleed, the sheer handwork behind and energy involved in the creation and birthing of a book. His books are his babies too.

And bleed I have but with enormous triumph and pride. Here’s my  baby, readers of the world. Please listen to the story he has to tell because all children love to be listened to, not just heard.

Buy your copy here.

 

Let’s Talk About Open

In my book, Open: A Boy’s Wayang Adventure, the protagonist is named Benjamin. He has ASD – Autism Spectrum Disorder. He is also a non-verbal autistic. It is good to note that some autistic individuals may speak without stopping while many are non-verbal or partially verbal.

This movie still is courtesy of Brainchild Picture, the studio that produced The Wayang Kids, a movie about a bunch of primary school kids who must perform in a Chinese opera performance. Leading the team is a mildly autistic boy who doesn’t speak. He has to convince his friends and ultimately himself that he is good enough to play the role of Monkey King.

The book is an adaptation of the movie where Open has a voice.

It has been a very interesting and fulfilling writing journey for me working with Raymond Tan of Brainchild in producing this book. The collaboration has been one of friendship, camaraderie, the meeting of creative minds and most of all, growth.

As writers, we all know that putting ourselves into the shoes of the characters we write about can be a challenging endeavour. How can we represent these characters who are individuals in themselves, yet be that writer who forgoes ego remaining authentic to the character?

Raymond and I will be discussing this during the official book launch of Open. Come see us and join in the conversation about how Singapore literature can foster an environment of inclusivity in our communities and societies.

BOOK LAUNCH — OPEN: A BOY’S WAYANG ADVENTURE

is taking place 10 March 2–3 pm at the Living Room, The Arts House, under the banner of the BuySinglit Campaign which runs from 9 – 11 March, 2018. 

The launch programme will look at how Singapore literature can play a part in encouraging inclusivity. Singapore based British author Eva Wong Nava and film director Raymond Tan—the creative minds behind Open: A Boy’s Wayang Adventure—will be holding a dialogue about representation, acceptance, and preserving our cultural histories.

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