NZ Itinerary 2018

From Gold Coast, we went to New Zealand. Here's how we spent our time, without driving. (If you're reading this on handphone, click on the pix for clearer view.) What I enjoyed most was the cycling. It was not easy because of the slopes and the long distance (30km). In several spots, the bicycle would tumble down the hill if cyclist loses focus and strays off the narrow track. And so I was very proud of Calder to have made it without mishap. A few times, he turned back to find me (I didn't see any need for haste and so was rather far behind). I had thought maybe the dad asked him to wait for Mommy. But found out later that no such instruction was issued. So he looked out for me on his own initiative. My sweet boy.

Gold Coast Days 2 & 3

27-28 Nov 2018

The last time we were in Gold Coast (4 years ago), we visited Dreamworld and White Waterworld. This time, we were headed for Movie World, Sea World and Wet N Wild. Unfortunately there were only a few rides at Movie World that we could take. Most were max-thrill which we avoid (we were not inclined to scare ourselves silly). The mild-thrill ones were mostly for small kids. There were only two rides under the moderate-thrill category, one of which (Scooby-Doo) was under maintenance and the other (Wild West Falls) Ethel rejected - boat rushing down to the waters would give her stomachache, she said. She looked worried while queuing for the small roller coaster too. My girl who used to squeal over theme parks had become wary of thrill rides - looks like she had outgrown theme parks. In this trip, she was more interested in finishing the Hunger Games (e-book) on her mobile and shopping (we were looking for cheap and nice 2-piece swimwear - alas the selection was very limited at K-Mart) and feeding ducks. As for Calder, he was as usual most interested in food - I made and brought along ham-and-cheese sandwiches. We also enjoyed cinammon-walnut-apple rolls (from supermarket). He followed us compliantly (more accurately - he walked fast but obediently returned when we called out to him) for the rides and shows and was rather engrossed watching the big roller coaster in action. When we arrived at the bumper cars, I was wondering if I should let him ride alone - he is after all so big in a small car. But decided to join him and good thing I did. I left him to do the steering and he went opposite direction from the other cars! And when our car bumped onto the side, he got really annoyed and started making loud angry Tarzan sounds. Intuitively I warned the Dad and sister not to bump us.

Since there were so few suitable rides, we proceeded to Wet N Wild early and enjoyed the wave pool as well as the lazy river. Tried the tunnel slide (Black Hole) which Ethel really liked. But carrying that two-person float up the long flight of stairs was too much for me so I left her to go the second round with her Dad.

We went to Sea World the next day. It had no chance because our shopping was scheduled right after and Ethel kept asking if we could proceed to K-Mart already. We went to the food court for dinner and Ethel chose to eat Subway which she shared with her Dad. I would have ordered something else (since Subway is ubiquitous in Singapore) but I figured I better order the same, in case Calder pines after what she's eating. That, was another wise choice. Subway tastes so good in Gold Coast (in New Zealand too, as we would later discover)! The teriyaki chicken was a large portion and the vegetables tasted so fresh. And how could tomatoes be so umami? I decided to buy some at the supermarket to eat like fruits. You can tell freshness from the very green stalk.

On our last night in Gold Coast, we stayed at YHA Coolangatta so we could walk to the airport in the wee hours of the morning. Got a family suite. I like it that it uses fan instead of air con. Unfortunately we didn't realise its speed could be increased so it was quite stuffy at night. What's really good at this hostel was the laundry facilities. The washing machines operated by coin ($4 per wash, $1 for powder) and they had many pegs and lines and a good windy space for hanging the laundry.

At the Coolangatta supermarket, we found nice yogurt popsicles that we ate at the beach (Ethel wanted another round of sand and waves). Also bought orange juice that I like. Had ramen craving (after all the bread) so we ate Japanese for dinner.

Gold Coast Day 1

26 Nov 2018

We stayed at Novetel for 2 nights. Arrived early (around 11am) and were very glad to hear that our room was ready (usual check-in: 2pm). We were assigned the 26th level and ooh and aah over the lovely view. First thing on our mind was to stock the fridge with edibles from the adjacent supermarket (Woolworths). Chocolate milk! Yogurt! Peaches! We also bought a roast chicken to eat with bread for an easy (and cheap) lunch.

After a nap (the kids stayed awake), we sauntered over to the beach. The sand was so fine. Ethel took off her slippers immediately. Calder, however, was afraid to walk barefooted and kept pointing to black stuff on the beach, asking "what is this?" and pronouncing them to be "sai sai (shit)!" (they were washed up black twigs and branches). But once he stepped into the waters, he was fearless approaching the waves. We had to constantly call him back because we were afraid we would lose him to the strong ocean.

Since we had bread for lunch, I decided to look for rice for dinner. The concierge recommended a Thai eatery nearby which led us to the most expensive fried rice we had ever bought - $15.50 for a small box of seafood fried rice. The box of beef Phad Thai cost $15.50 too. The kids also enjoyed an apple and a blueberry danish bought from a bakery (I love to check out bakeries when overseas).

Overnight Flight

25 Nov
10.20pm overnight flight to Gold Coast on Scoot

Plane was serving supper (to customers who ordered ahead) at midnight, and only turned off the lights at 1.30am. Babies cried and there was a mother who walked up and down the aisle to rock her boy to sleep. Meanwhile, every time plane experienced turbulence, the seatbelt signs would turn on followed by pilot announcement. And then the air stewardesses would walk down the aisle repeating "please put on your seatbelt" to no one in particular. Ethel put on her eye shield and travel pillow and fell asleep almost immediately around 11pm. Calder fell asleep only at 3.30am. Guess what? At 4am, the lights turned on again and the plane started serving breakfast and inviting purchase of merchandise! Which woke Calder up. Morale of the story: never take overnight flights. Not only do they interrupt sleep, the travel pillows take up space in the luggage when not in use.

Other observations:
Being long-legged, Calder had to be constantly reminded to sit straight so that he wouldn't knock his knees against the seat in front.

I gave the children almond Hershey's to chew to ease any discomfort with ear pressure during takeoff. Later I noticed that Calder was pursing his lips in a peculiar manner. Was he holding his breath? So I instructed, "Open your mouth." That was a mistake. He obeyed and out spilled a whole stream of chocolate saliva - for some reason, he was afraid to swallow during the takeoff.

After this, our worst fear came true - Calder started laughing and we had to keep him from waking the sleepers around. Fortunately the episode was short.

Take over

When Calder was laughing out loud again and wouldn't/couldn't stop.

Nephew: He's too noisy!
Ethel: Mommy, can you get him to stop?
Me: Can I just eat my dinner and not have to deal with it? I've had him for the whole day. Can someone, like, take over?

(And I realised I'd uttered the cry of many parents in the special needs community.)

Our Common Earth

Name: Ethel Kam 

Age: 11

School: St Nicholas Girls’ School (Primary)

Class: P5 Justice

A light shone in the darkness.

The light grew brighter and brighter, filling my vision with the span of its wonder. Then, I heard a soft, fleeting sound - laughter. The light became a blur and the blur became figures, which were people. The people, I took to be a big family. Feasting. The people in the family were different. There were the intellectually disabled, the physically handicapped; the aged and the young. But they all shared one thing:

Happiness.

Happiness radiated from them. The smiles on their faces were sincere and their laughter were not dry ones. The purity of their love and togetherness drew me in and I curiously observed them until they had finished their meal. Some members of the big family bid the rest farewell and exited the house in cheery spirits. I followed one of the family members out into the open.

The usual apathetic crowd was not to be seen here. Instead, joy and kindness were displayed on the people around us. There were people who looked a bit tired, but they had a look of satisfaction from fulfilment.

I saw someone who stuck out like a sore thumb. He had the ragged look of a criminal, and my suspicions were confirmed when I heard murmurings of the people around me: “Isn’t he that notorious thief?” He seemed to sense the unsettled state of the people around him, and his head drooped, probably in embarrassment. A friend of his, or maybe a kind stranger, went up to him and comforted him until his face showed hints of a smile which reached to his eyes. When I saw him, I was also compelled to smile. How great the effects of kindness!

Shortly after, I turned my attention back to the person I was following. I realised that he was intellectually disabled; I identified him as autistic. My thoughts drifted to my brother, who similarly had autism. Sometimes, people would stare or look annoyed by his unique behaviour. However, here, the people around the autistic person I was following smiled at him, and the ones who were more familiar with him tried to interact or be friendly with him. The fact that community accepted him instead of labelling him as ‘weird’ touched me. As I looked at all these examples of love displayed in various forms throughout the community, I felt a warmth spread in me, and the only word that came to my mind to describe this truly wonderful world was:

Perfect.

At this point, a hint of darkness hindered my sight and the feeling of being pulled away from the present scene rushed through my body. The feeling grew stronger, and my body screamed out, trying to hold out. My vision blurred once again, and the people turned into shadows which turned into what we can safely say - nothing at all. My mind sank back into reality, and I lay on my bed, feeling utterly defeated. My mind was still contemplating the fact that the perfect world I had been in merely seconds ago was a dream, and that I will never see that world again. The feeling gradually overwhelmed me, taking its form in a sort of melancholy: I felt defeated, sad and, maybe a little angry at how that world had just slipped through my fingers, allowing me only a taste of it before disappearing into thin air. 

A spark ignited in me; it was called Hope.

That world could exist. That world could become reality. Suddenly, I understood what that world was. That world was -

Our future.

(598 words)

Dry

I'd never seen him dry himself so thoroughly before. For the longest time, he had been merely going through the motions, needing constant promptings not to miss out this and that area. He didn't seem to realise that parts of his body remained wet. In fact, he didn't seem to understand the purpose of drying after shower. Then yesterday, the miracle happened - I saw him consciously rubbing himself dry. He even bent over to wipe his feet (not part of routine) with the bath towel.

- 28 Oct 2018
Breakthrough at 13

Mei Mei

Calder: Mei Mei. Mei Mei.

(No response because the sister was absorbed in her Korean variety show Running Man.)

Calder: Ethel. Ethel.
Ethel: Yes, Calder?
Calder: Play wordsearch.

Once again, he's narrating what he's doing (a recent habit). What's precious in this scenario is that he called his sister to attention, and actually used her name (first time).

Life is exciting when an autistic child shows progress.

13 Oct 2018
Calder at 13.

Drop

Calder has started speaking more these two weeks, narrating his own movements ("Run!" "Sit on the floor" etc.) and sharing his observations ("taxi is brown"). He has also turned attention-seeking, coming to us to report all sorts of ailments with the phrase "gok gok". He asked for "eye drop", then "nose drop" (has he ever used nose drop, I wonder), then "ear drop". When he said "hand drop", I realised to my amusement that he thinks "drop" will solve any discomfort.

13 Oct 2018

Breakthroughs

Yesterday morning, Calder came out of his bedroom and said to me, "Hungry." At the bowling alley today, he tapped me on my back. I looked up at the scoreboard (I had been busy marking his sister's Science revision paper) and realised he wanted me to know he had done well - knocked down 7 pins. Such spontaneity was unprecedented and I am looking forward to more surprises.

Breakthroughs at 13
- 9 Oct 2018

Tell Me Why

Recent changes in Calder - more spontaneity but also more meltdowns.

Spontaneity:
E.g. Would approach* me without being called but cannot explain purpose or intention -
Me: Yes, what do you want?
Calder: What do you want.

E.g. Would come out of his bedroom after bedtime to approach us*

E.g. Can finish brushing his teeth and wiping face without supervision.

E.g. Run to lifts and would not stop even when called.

Meltdowns:
Noisy places like bowling alley
& reasons unknown

Last night, some time after cheerfully going to bed, he melted down - yell, scream, cry, thrash legs about, chant "help me" - while still lying on his bed. We couldn't find the reason, so just focussed on calming him (sing songs, rhythmic tapping, soothing words "It's ok", "Mommy love" etc.) This morning, seeing he's happy again, I tried to unravel the mystery:

Part 1

Me: Why was Calder so upset last night?
Calder: Is sad.
Me: Why was Calder sad?
Calder: Because throw tantrum.
Me: Why did Calder throw tantrum?
Calder: Because is crying.
Me: Why did Calder cry?
Calder: Because is sad.

Part 2
Me: What happened?
Calder: What happened.
Me: Is it because you were sick?
Calder: Sick sick
Me: Where sick sick?
Calder: (Tapped forehead)
Me: Headache?
Calder: Headache.

Although the "conversation" took place in one sitting, I segregated a Part 2 because that's when information got unreliable - he was likely parroting me. Tapping the forehead could be a reference to fever which is associated with "sick". He could also be remembering a head massage I've done for him before when he was unwell.

At times like this, I'm so thankful I can entrust Calder to God who can read his mind.

- 28 Sep 2018, Calder at 13

How can we be your friend? (Inclusion Survey)

With the help of questions posted by some church youths, I have created this survey in preparation for a sharing on autism and inclusion. Below are what I found to be illuminating and hence helpful answers. Note that these answers have been edited for brevity and grammar. Although the survey addresses special needs in general, the respondents are mainly from the autism community (probably due to my circle of contact). Parents are given the option to answer on behalf of their children.

Brenda Tan

Writer of “Come into My World: 31 Stories of Autism in Singapore” and “MY WAY: 31 Stories of Independent Autism” (www.come-into-my-world.com).

1a. How does it feel like to have special needs?

Sad

Out of place

Frustrating. People think we are stupid; other times they avoid us like something is wrong with us.

Life feels like a struggle everyday

I don't like it. I'm different.

I feel like the whole world is different from me. Like, I am the ultimate weirdo.

1b. If you are a parent - how does it feel to have a special-needs child?

Sad n depressed

Devastated

Alone. At my workplace, no one has a special needs child.

Very disappointed in friends or relatives who are not willing to be more forgiving or understanding.

Very tiring

Stressful

2a. How have people been unkind to you?

Ignoring me

Excluding me

Whispering

Staring at me

Showing unhappy faces

Refused to play with me or befriend me

Laughed at what I said.

Bullying Ostracizing Exploitation Criticising me Tell me lies Gang up against me Gossip about me

I was bullied from Primary 2 to Sec 2.

People assuming I can’t do things, or making fun of me cuz I can’t do things

When I was a kid I just assumed I’d go to prison because everyone said I was bad.

2b. Parents:

They make remarks that make my heart cry.

Close relatives barred their children from playing with my special-need child.

Called him names e.g. stupid boy

School mates hv bullied him; beat him with ruler, pulled his shirt till it tore, taken his stuff, including money for school camp.

I get people’s stares when we are outside, and I thought this is not how it should be.

3a. How have people been kind to you?

Listening

Understand my different interests

Understand the difficulty

Offered me advice on how to improve my social skills.

Accepting me Listening to my struggles Commending me for my strengths and good work Give words of encouragement to press on

Be seen with me.

3b. Parents:

With smiling face, replied "it’s fine for me" when my son giggled in public.

Just simply let it be and keep quiet is being kind, instead of being judgmental.

Help to look after him

Included him in their activities.

Looks of understanding, smiles, telling me “never mind” after an incident caused by my son, coming forward to offer help and words of encouragement

Making an effort to interact with our child.

4a. What difficulties do you face?

Isolation - eat lunch alone most of the time.

Can’t keep up with conversation flow (topics change too fast)

Difficulties in making new friends

Limited conversation topics

Expressing my thoughts

Rigidity, meltdowns

Sensory issues

Career prospects. Being automatically rejected without even a fighting chance.

I cannot understand the world & society I live in.

4b. Parents:

I cannot always be around for my son.

Financial pressure

My daughter’s unstable mood n emotions.

My Son sometimes grabs food or things he likes from people. He may floor when he cannot get his way and he may refuse to alight from the bus when we have reached our destination. His obsessions and impulsive behaviours means that I have to be very vigilant when I’m out with him.

Making friends is a huge challenge for one who is not very verbal. A child trapped in a man's body when seen from the outside can be quite intimidating for many. He is 22 but has no friends.

5a. How do you cope?

I stop caring about it (making friends). I occupy myself with things like a book or a charged phone with data plan when I go to social events.

Observe what neurotypicals do and emulate them

With help from parents, teachers, assigned buddies in class, church friends.

I don't know. I just deal with it.

I don't - it's a struggle most of the time

5b. Parents:

Quit my full-time job.

Activate whole family for help

Lower expectations

Remind myself to keep calm

Day by day and prayers.

Try to see difficult situations as an opportunity to educate the public - to increase their awareness and understanding.

6. Do you feel you are living in an inclusive society? Why/why not?

a. Yes

I see efforts from organisations to be more inclusive, such as SG Enable, ARC, SPD and their employer partners.

Yes.. in certain areas. Especially my boy’s school and teachers.

From when we started, awareness has certainly increased a lot, with a lot more activities n events organised around persons with special needs.

b. No

People still make jokes about special needs.

When we stim, we’re “crazy”.

Many organisations in Singapore still have not jumped on the bandwagon to hire special needs people and even for those that have, employees on the ground are not trained to manage and help us.

Many in society still lack awareness, education and empathy for special needs, and still exclude us from their circle of friends and social activities.

They don’t truly understand, or want to. Because they think it doesn’t involve them personally.

People are impatient by nature and expect services to be fast n prompt due to time constraints or stressful demands from society but special needs people just can’t cope.

Starting from primary school, children only want to friend those who are normal. They are unkind and bully or ignore those who are different.

Many childcare centers & kindergartens are not equipped/trained to take in children with special needs; there’s no truly inclusive mainstream schools such that children with special needs can learn & play alongside neurotypical children so that both sides gain better understanding & acceptance of each other. Integration should be done as early in life as possible. Should not be the case of society trying to include special-needs people later on in life.

For employment, we are still a long way. Cause what we are doing now is really retrofitting existing systems n structure to accommodate them. There is not concerted effort to build a system with them in mind.

For our children to co-exist in the system, there is a need to change mindset n attitudes. Our kids are able. However, if people do not have the right mindset n attitudes, inclusion will always be lacking n lagging. Our kids will never be safe. Our kids will always be tormented psychologically.

I would say our society is maybe increasingly tolerant but certainly not inclusive yet. I feel that people are generally uncomfortable with the unusual behaviour of individuals with special needs and still prefer to keep a distance.

Nobody helps me unless I fit their version of what a special needs person looks like.

7. What is your greatest wish/hope?

To be accepted

Find a permanent job with good and patient employer

Everyone won’t be stressed over the ‘rat’ race so that one can take own time to do what is best in every situation.

A robust support system, e.g. buddy system at work.

More trained professionals for special-needs children in affordable fees

Give my son a chance to study/ work.

More special-needs friendly churches.

I wish people can accept that our children have a condition which they didn’t ask for.

For a kinder, more inclusive world.

8. How would you like to be treated?

Treat me like a normal person

With respect.

Understand that at times we need some room during meltdown

I hope people can be nice to me when my behaviour deviates from the norm, and just tell me how to rectify it.

With kindness. Communicate with me in a way that make sense to me. Make accommodations for my ASD weaknesses. Give me direct feedback on my behavioural issues and soft skills. Be patient with me. Be gentle with me.

Fair n kind

Like my needs matter.

I would like people not to assume n judge too quickly

I would like people to treat my child like a normal person, not with lowered expectations. Lowering the benchmark/ expectations too much underestimates what they can do and takes away their confidence and the chance for them to push to greater heights, at their pace. i.e I have seen IEP in EIPIC designed to be a routine, not much to motivate or inspire the child. More like incubating the ideas to the child indirectly, "That is all I need you to do", "I know you are not much capable."

Talk to me patiently.

9a. How can I become a friend to someone like you?

Respond nicely if I initiate conversation, even if it’s awkward.

Don’t keep talking with your own friends like I’m not there.

No small talk please! If we share interests, it’s a huge bonus.

Chat with me.

Treat me to a meal, or I can treat you to one too.

Do NOT treat me as a charity case.

Ask me how it is like for me to live with Asperger syndrome

Share common interests, discuss interesting topics

Be open, genuine and sincere.

Give time and be patient.

Smile n stay cool

Ask and be understanding. Don't assume things, always ask to be sure.

9b. Parents

Say hi to our children or give a smile

Patient n talk slower as his processing may not good.. more understanding if he’s distracted from the topic

Start with knowing his name...his interests...involve him in activities that he is interested in....

Come forward and talk to my child. He may not be able to converse normally but you can still show him your desire to talk to him.

Go to the playground together. Play board games and nerf guns together. Do sports i.e badminton, bowling, basketball and soccer together.

Try to know what they want, what they don’t. Try to communicate to them as much as possible.

Talk to her and friend her on Facebook and meet up with her once a month

Engage them at their level.

Talk to him and try to interact with him directly instead of going through his parents.

Respect that he can hear and is sensitive to people’s reaction to him.

Let him feel he's not invisible which he seems to be to others.

10. How can I help you?

Just let me be me and accept that I am what I am.

If I ask for help, please don’t put me down for it. If I’m having a meltdown, please stay away, and help keep other people away. And be nice.

Just doing this survey is already a big help

Being an advocate or mouth piece

Ask if we can move forward in long queues?

WhatsApp n befriend my son

Introduce workshop, courses or outings for her.

More venues for special-needs kids to socialize.

Spread the awareness

11. How can the church be more comfortable for you?

Touch on special needs

Be accepting of my ASD behaviours and don't take offence if unintended

Give me direct feedback if you don't like my behaviours, don't tell it through someone else, it is like gossiping

Listen to my issues and point of view. Do NOT jump straight into telling me about God and the bible. Know my needs first. Otherwise, I would liken it to you reading John 6 (Bread of Life) to a guy starving to death but you never give him bread to eat.

Maybe by knowing more about the condition and its manifestations and allowing for diversity in unity

Special needs are not talked about much in my church. Any act of concern would be appreciated.

More talks/dialogues & raise awareness amongst neurotypical church goers.

Prayers

People with special needs can be gathered for fellowship once a month

I am not a Christian but I think a place of faith should take the lead in demonstrating to their followers how people should love one another and treat others the way you would like to be treated.

Be accepting of our special needs children

To me, the church should be our sanctuary.

Peeler

It started with the 10-year-old  nephew whom I babysit. Isaac likes to help in the kitchen so I taught him to peel carrots. From carrots, it naturally moved to peeling apples. It occurred to me - hey, my own children should learn this too! 11-year-old Ethel was so fearful she put the apple on the plate instead of holding it while peeling. But she progressed and was happy to no longer need Mommy when she wants to eat an apple. Alas so soon, I heard her distress that she had peeled her own finger! "Ooo, my darling got cut peeling apple," I crooned, "grow up already." As for 13-year-old Calder, he was fearless with the peeler, which made it more frightening for me. No mishap so far, hence I decided to let him try cutting his own nails. As expected, the nails were anyhow clipped and went flying everywhere but it's a good start. Unfortunately, this is not something can be practised frequently (nails take time to grow), unless we allow him to cut our nails too. Ummm let's not think about that for now.

C is for Calder

It being a school holiday, I brought the kids (Calder, Ethel and their cousin Isaac) to Changi Airport for lunch. On the long bus ride home, Ethel and Isaac wanted to play word game and we decided to let Calder try. In this game, someone starts with a word and the next person thinks of another word starting with the previous word's last letter. Calder didn't understand what "last letter" means but could contribute (given time) if we prompted him with the beginning letter. His entries were surprising. "C" is for "calculator" (we were so impressed he knew what's a calculator), "C" is for "Camp of the Gypsies" (that's his piano piece), "C" is for "cannot" (looks like our admonishments e.g. "Cannot poke mei mei's eyes", "Cannot clap hands when people are sleeping", "Cannot bump bump people" etc. have made an impression). Others unexpected entries included "P for person", "O for Ostrich", "S for Serangoon". His sister pronounced him to be actually a genius, while I mused: What an interesting child God has given me.

Blessed by the Camp

It started one Sunday when 11-year-old Ethel came bounding from Sunday School, "Are we going to the church camp, Mom? All my friends are going and I want to go too!"

That's how I found out that Yio Chu Kang Chapel is heading to JB in June. Since the family didn't have other vacation plans, and Singapore was so hot without air-con, we decided to join the English congregation in Hotel Renaissance.

Delightfully, the camp theme was Hearing the Voice of God. How apt, since I was seeking God's direction about my career. I had spent two years writing a book on independent autistic adults. The book was completed and in fact sent to print the week before start of camp. And I'd been wondering - what do I do now that the project is over?

In my choice of work, do I pick based on what's easiest for me? Or what pays me the most? Which door should I knock at? What if it's the wrong door? Do I wait for God to open a door or do I go around knocking? If I inquire, does it mean running ahead of God? Does "waiting upon the Lord" mean doing nothing until circumstances point a clear direction?

Such was my uncertainty when I attended the camp which our heavenly father graciously guided me to. And what relief to he reminded that our God is a loving father. That seeking his will is not walking on a tightrope with no safety net beneath. It is holding his hand and trusting him to lead me to green pastures. I need not fear mistakes in decision-making because God can always reshuffle the cards for a fresh new start.

I also learned in this camp that God wants to speak to us everyday; it is not his intention to hide from his children. And so I resolved to meet him in Quiet Time every morning and every night (I am following the devotional Morning & Evening with Charles Spurgeon), on top of homework for Bible Study Fellowship.

I am happy to say that God has been very real in his communication through his word. Perhaps because I no longer treat Bible reading as chore to be completed, but a letter from a loved one that I look forward to receiving.

Beside teaching me to hear from God, this camp has blessed me by blessing my son Calder. Calder is autistic so he'd be jumping and clapping and laughing non-stop - generally creating embarrassing scenes where we have to apologise for the disruption. But church members have come to us to assure us that it's ok, that we are a community that looks out for one another. In fact, a few even affirmed his special-ness in a very positive way - "I really like how he worships God", "He responds in rhythm to the music!", "Such wonderful joy". One youth even told us they missed him when he's not around.

And because the church was supportive rather than judgemental, we could relax and enjoy the camp. Thank you for being so welcoming. You have welcomed us as members of a different congregation. You have welcomed us despite the strange character that we bring around with us. Indeed there's hardly anything stranger than the idiosyncratic ways of an autistic child. Thank you for welcoming Calder, the "stranger".

Allow me to edify by sharing this illuminating passage:

Matthew 25: 31-40

When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne...

Then the King will say to those on his right,

"Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world.  For... I was a stranger and you invited me in..."

Then the righteous will answer him,

"Lord, when did we... see you a stranger and invite you in...?"

“Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."

(This letter to Yio Chu Kang Chapel was published in their bulletin the weekend of 4/5 Aug 2018.)

Bump

As usual, Calder was walking ahead of me on the travelator. As I tried to catch up with him, I observed that in his haste, he had bumped shoulders with a young lady. When I reached him, I put my arm around him, ready to remind him not to knock into people. I was in time to hear the lady's friend exclaiming, "Why did he bump you?" Using the same arm that was around his shoulder, I steered Calder around to face the lady. "Calder, say 'Sorry'," I guided. "Sorry," he complied, but he wasn't looking at the lady. (Did he actually know to whom he was supposed to apologise? Now I wonder.) So I tried again, "Calder, say 'Sorry'". But he spoke it over her head! At this time, the lady's friend stepped out and said, "It's ok, no need to apologize anymore." She looked clearly embarrassed.

Well, that's a day in the life of autism.

Laughing Matter

Autism brings different challenges in different seasons of Calder's life. The most recent one is inappropriate laughter. The family just returned from a church camp where his idiosyncrasies were graciously abided. But we had to keep him from disrupting the talks with his loud and continuous laughing. From admonishments to wordsearch tablet games to snacks that hopefully would keep his mouth busy, we tried in vain to stop the loud hilarity. Is he this way because we are too lenient? Can he actually control such laughter? I decided to seek the advice of the international autism community (on Facebook) and guess what I got?

The question:

My 13-year-old autistic son gets these laughing fits where he cannot seem to stop giggling (or can he?). Is this something common to you? What is happening, can someone advise?

Answers:

"I wish I knew, but I was the exact same at his age."

"This is common for me for sure."

"This happens to me sometimes... I think part of it is nerves."

"I used to laugh until I peed, then the fun was either over or doubled up because we were laughing that I peed myself."

"I get that when i haven't had  meltdown in a long time."

"I used to have giggle fits, it was fun!"

"My grandson does this and it usually results in everyone around him laughing even though they have no idea why."

"I do this because I'm funny as hell and crack myself up."

"I had those when I changed to a school that I loved.  It was far less strict than my previous one and I would go off into laughing fits with tears of laughter pouring out of my eyes.  When I laugh extremely hard there is no sound.  Teachers had no idea what to make of it but I got the Best Laugh Award in the Yearbook!"

"It could be autistic replay. Where a memory comes flooding through and its basically like we are right back there and are taken over by whatever emotion we had at that time. It happens to me a lot. Or he just thought of something funny. Which I also will do and laugh at while people look at me funny."

"It takes a lot of depth or very direct and silly obvious humour to make me laugh and I think that sometimes when I finally feel something is funny...it is built up.

Also...for my own children it can be a reaction to not knowing how to react, especially for my son.

I actually remember feeling this way as a child...it is common in my family to laugh when someone gets hurt...we learned that it hurt feelings and as we age we regulated it...but it seems to have come back in the children.

My son will get hurt and his sister will laugh..she doesn't go on long..but it upsets him.

When he laughed at my mother after a fall...he ran away because he knew it wasn't an appropriate reaction and he was embarrassed.

He kept saying he couldnt help it...since I experienced this myself when younger I understood but used it to explain further that his sister also can't help it and just like him it is a normal reaction. It comes from them not knowing how to react to someone's pain (they can understand and feel helpless and even it can seem silly that an adult has lost control, or that the depth of their feelings is more than they can express).

No one laughs in my family out of spite. We are truly gentle hearts deep down..."

"My daughter does this. And I want to reach back in time when any 'professional' said it was 'for no reason' and slap them in the face.  It's quite well explained by many autistics that they recall memories (happy and sad) VERY close to how they first experienced them. So a memory gives all the FEELS. Even new thoughts of something hilarious gives all the feels. My daughter experiences life so fully, from her head to her toes. I am autistic, too, but don't share this to the extreme loveliness my daughter does."

"I got in trouble at school often because of it. People's seriousness is funny to us because we see through actions. I also do it when I'm nervous, or I have habits of replaying things in my head as well, and it's like reliving in the moment over and over. I remember my principal and teachers were circled around me once because I was laughing at something someone did and they did not like it. They told me it was not a laughing matter. The more serious they got, the more I laughed. Different approaches are needed. We are not as likely to laugh at things we're passionate about, so really the best thing you can do is change the subject. Yelling at us and punishment will not do anything. My mom used to spank me with a dog leash till I bled and I still laughed through it all. A bit much to share but, just to give you an idea. Definitely just change the direction of the conversation instead."

"Isn't it great to have a kid that can see the funny side of life! My son sometimes does this too (he's 16), and I'm so glad he does. If we can't laugh at things, it would be a pretty depressing place to be. Be thankful for a happy, lighthearted kid, enjoy the moment and laugh along with him. Treasure the moment and remember it when times are hard or you are worried about how happy your kid is (I often worried about that). If it seems to be associated with any negative (eg having a meltdown shortly afterwards) then it might be a coping mechanism, (what a fun way to cope!) and in that case it's an early warning sign so you can reduce stress and hopefully prevent a meltdown. Enjoy your wonderful son!"

"Let him laugh......2 minutes of laughter will boost the immune system for up to 24 hrs.  He'll be the healthiest kid on the block."

"He's happy, he's obviously enjoying something, let him get on with it."

Journal Writing

One of the things that make Calder happy is when Mommy finds time to guide him in journal writing at the end of the day. Actually, unless I want to introduce a new vocabulary or encourage him to expand his scope of coverage, he doesn't really need guidance any more. I can just sit beside and nod at every sentence he writes, then as part of our routine, get him to read aloud the entry once over before giving him a hi-5 and then a hi-10.

Journal writing is best done when we have spent the day together, because then I can help him find the words to express his experiences. I have tried asking him to write journal when he's spent a day in school but we would get stuck if there's something he cannot put into words. Also, it's difficult to check accuracy when I haven't been with him. The best time is when he has had an unusual day with me. Then he would learn many new phrases and terms just by putting them down in words.

Until Calder started journalling, I never knew he noticed the things around him. He never spoke about them, so it was with great surprise that I found out he remembers them. It could be a phrase I used for a food he ate (e.g. "pork soft-bone") that many months later made its way into his journal, when he ate the food again. 

Left to his own device, Calder's journal would be filled with food he ate, transport he took and lift levels he went to. If it's a typical day, one journal record would read just like the previous day's. So I introduce variety by asking him, for example, what someone else ate. Sometimes I asked him to write down important reminders like coming out of the toilet himself instead of waiting for people to call him out.

When he has outings without us, I appreciate deeply when his teachers send me pictures (one or two would suffice) so I can ask what he was doing in those pictures if he has not already volunteered the details of that outing.

How did Calder begin writing journals? It probably started some five years ago, when he was 8. One day, I took a good nap. Yes, the "good nap" is crucial information because it gave me the extra presence of mind to suggest doing something different for bedtime. Calder's usual bedtime consisted of Bible story reading and a short prayer before his Daddy or I kissed him on his forehead goodnight. On this day, I was so energised I ventured to ask him what we did during the day.

Silence. Instead of giving up, I decided to help him answer the question. "We ate pao for breakfast..." I fetched a piece of paper and started drawing as I related what he did during the day. We stopped when we reached the end of the paper. That's when the teacher in me decided to get him to state, as I pointed to the drawings and short phrases, what he experienced during the day.

The next night - we did the same. And the following night too. On the fourth night, I was too tired to go through the whole procedure again. Very nonchalantly, I asked, "So what did Calder do today?" Imagine my surprise when he volunteered the correct answer without first hearing my "model answer". And using "and then?" I slowly coaxed the rest of the day's experience from him.

What a breakthrough! Calder has his own mind! He does register things!

Today, we have a collection of Calder's journals that he likes to read through. Sometimes he would even laugh reading them. He looks especially proud when I take pictures of his journal to send to a friend or relative who has been remembered in that day's journal.

Calder's journal, though simply written, has astounded many people. He can recall colours of seats he took, songs he sang, names etc. It is good evidence and a necessary reminder that behind the odd clapping and bouncing and otherwise-silence is a thinking boy who observes and remembers.

I look forward to the day when Calder can communicate with us not only through his journal but via conversations as well.

Dental Rumination

Went to the dentist this morning and was advised to have my wisdom tooth extracted. Decided to do it on the spot before return of the terrible toothache that felt like radiation of my left mouth, so bad I couldn't tell where the pain originated.

It's interesting that every time I'm subjected to the tyranny of dental equipment, I'd be thinking to myself: "You gave birth to your two kids without epidural - surely this is nothing!"

Then I would be wondering how Calder can take such assault to his sensitive nerves. And I'd imagine myself taking the pain on his behalf: "Ok, this is for you, Calder!" (I never have to worry about Ethel because she is stoic - amazingly brave since small - when it comes to dentistry.)

Of course, there'd be lots of prayers going on in my head as well: "Oh Lord, let me not be afraid. Give me peace. Let the dentist do just the right thing and not injure other parts of my mouth. Let Calder not have to suffer such pains...."

Well, that's how I got through my dental treatment, every time.

When Calder came back from school, I showed him my extracted tooth (already cleaned with vinegar).

"What is this, Calder?"

"Walnut."

Reward

Yesterday, a doting uncle bought Ethel her favourite jackfruit, so when the kids (P5 Ethel & her P4 cousin who's now in my care) finished their assigned work, I took out the jackfruit from the fridge and announced it's their reward.

"I don't like jackfruit; give me another reward," said the cousin. Ethel and Calder ate the jackfruit. Then I took out a pack of minty M&Ms that a friend gave me. "I don't eat minty M&Ms; give me another reward," said the cousin. Calder and Ethel savoured the M&Ms. I asked the cousin if he wanted to eat hash brown and he said yes. When the hash browns were ready from the air-fryer, I announced, "So here's your reward!" Cousin replied, "How is it a reward when everybody gets it?" "But I offered the jackfruit to everyone too," I reasoned. Cousin exclaimed, "Even those who didn't work for it!" Oh, so he was pointing to Calder. There was one hash brown left and since Calder was the biggest eater of us all, I automatically gave it to him. "Why does he get to have 2 pieces?" questioned the cousin. "Because he might get hungry," I explained, "Do you want another one? I can do another one for you." "Nope." But when he was out of the kitchen, I heard him chanting to himself, "Give me my reward, give me my reward."

After the cousin had left, I discussed this with Ethel and was astonished when she told me she used to feel the same way - why Calder gets the same reward when he didn't work for it. I told her maybe Calder's reward is for sitting nicely by himself when I was busy with her studies. Maybe he is being rewarded for not throwing a tantrum over being neglected.

Truth is: I cannot imagine not giving Calder what I openly give his sister. He wouldn't understand why. He would just feel sad, I think, for not being loved the same way.

"Should I be rewarded for sitting nicely?" ventured Ethel. I figured, "Different people gets rewarded for different things, and these are things that are more difficult for them. Actually, it's not that Calder doesn't want to do these things. It's that he cannot do them." "Yah, I thought so too," said Ethel, "That's why I never complain."

At bedtime, Ethel prayed that Calder wouldn't feel neglected. Time stood still for me then. Oh, blessed are the pure in heart, for they will see God (Mathew 5: 8).

Why help?

When you have special needs in your family, and you see another family in need, it's easy to think:
"I have enough needs of my own, so why should I help?"
On the other hand, you can also think:
"I understand what it is like to be in need, so I will help."

I was without a babysitter on Tuesday, and so was prepared to wait for Ethel to come home around 5pm before bringing both kids to Calder's bowling class (Special Olympics) which starts at 5pm and ends at 7pm. Ethel will need time to shower so I was expecting Calder to reach the bowling alley around 5.45pm. So I texted the bowling parent-group that Calder would be late for the above reason (the journalist in me readily detects potential puzzlement and so I always like to give clear reasons).

On Tuesday morning, I received a text from a fellow parent asking if I'd like her to drive Calder to bowling. Yes, that'd be great. Then Calder wouldn't need to wait for his lane to finish one round of bowling before joining in. And I wouldn't be hurrying Ethel like mad when she comes back.

When Ethel came home, she took some time to discover that Calder was not at home. When she found out that he's on his way to the bowling alley, she asked, "Then why are we in such a hurry?"

"It's because one aunty has two autistic children to take care of, plus a small girl."

It's a miracle of God's provision, deeply appreciated. Not easy a helping hand to extend, because an autistic child like Calder cannot communicate well and who knows what he wants to do? Frankly I'm not sure if I have the confidence to take care of this friend's autistic son like she has volunteered to take care of mine. She is the brave and very kind one.

A special-needs family reaching out to another special-needs family - it is a beautiful gesture that moved my heart.

Thank you, Yvonne.

Home Haircut for the Autistic

An interesting conversation with a trainee  at Kimage Hairdressing School...

Me: When would you graduate?
Trainee: End of this year.
Me: Would you be setting up your own hair salon?
Trainee: Rental is too expensive in Singapore.
Me: You can go to people's homes to cut hair. Some autistic children cannot go to hair salon because it's too noisy.
Trainee: Really? I thought "autistic" just means they like to be by themselves.
Me: Some autistic children are afraid to go to unfamiliar places, so their home would be the best place to cut their hair. You can even cut their hair while they are watching their favourite show in the living room.
Trainee: I've thought of going to homes to cut old folks' hair - old folks who are not mobile. Never thought of autistic children. But I do not have experience - would the family let me cut their child's hair?
Me: Experience is accumulated, isn't it? You just have to get started.
Trainee: Maybe I should go get trained first.
Me: I'm not sure if there is a hairdressing course specially for autistic clients.
Trainee: Would the kid let me use the clipper?
Me: That's the challenge. My son was very afraid of the sound it made, but got used to it over time. If you meet a child like that, I suppose you'd have to use mainly scissors. Maybe clip a bit for first visit, clip more the next visit, until that child trusts you.
Trainee: I ever thought of going overseas to cut hair for charity.
Me: But you still need to earn a living right? So we are talking about a specialised hairdressing here. You see, it's not that parents cannot afford it but that few hairdressers are committed to figuring out how to cut their child's hair. Just focus on the cutting. Not washing because you need special seats for that.
Trainee: Yah. And not dyeing of hair - just cutting.
Me: Meaningful way of using your skills, right?
Trainee: Indeed (说的也是).

7 Airport Suggestions

On 19 Mar, I attended a caregivers' forum organised by Changi Airport Group wishing to find out how the new Terminal 5 can cater to families with special needs. Personally, I went with two main suggestions in mind:

1. Handicap toilets must not be inside the Gents or Ladies, so that mothers can help their grown special-needs sons with toileting.

2. Allow special-needs persons to clear customs not individually but with their caregiver. This is because even as adults, autistic persons may feel lost, not understanding what is required of them and not being able to answer questions posed by the customs officer. This is even more difficult for restless children who may dash off once released from their caregivers' hand.

But if it's not possible to clear customs with the caregiver, then I'd suggest:

3. Indicating the special needs on the passport or on the boarding pass. With autistic persons looking very much like their neurotypical peers (except when they exhibit repetitive motions), I'm concerned that lack of understanding may be interpreted as refusal to cooperate, getting autistic persons like Calder into trouble with the airport police. And this trouble would only escalate if the police suspect foul play and by stern or harshly issued instructions, make the autistic person anxious or edgy.

An indication of special needs is only as useful as the amount of knowledge people have of such needs. Hence I think it is important that

4. Airport staff be trained on symptoms and limitations of various special needs, especially the "invisible" needs like intellectual disability, so that they can respond appropriately in urgent situations like when an autistic child melts down. In the case of autism, staff would learn, through training, important tips like using a calm voice in communication, steering the family to a quiet place or allowing them to go first (in queues) to minimise the child's distress in waiting.

5. Ideally, there would be a priority queue for families with special needs. This would facilitate clearance of customs together with the caregiver (so the general public wouldn't question the exception) and also minimise unhappiness of the general public should the special-needs person cause delay of queue.

I never knew until this forum, that there is such a place called the special-needs lounge in Changi Airport. Apparently, when we book air tickets, we can indicate to the airline our need to use this quiet place. Then a staff may usher us there to wait for the plane. Ease of use however depends on the airline, so it'd be good if

6. Accessibility to this special-needs lounge can be controlled by the airport rather than by individual airlines - perhaps showing the DDR card for the family to gain entry.  Also, that this lounge not be just a quiet place with soft seats; it can contain books and sensory toys to occupy children with special needs. There can even be a soundproof, dimly-lighted room in this lounge where autistic children can enter individually and sit on a bouncy ball  to calm down when they have a meltdown.

7. If there are provisions for people with special needs, these need to be clearly stated on the website for easy access. Perhaps this special-needs page on the airport's website can also include a downloadable picture procedure video or slideshow to prepare special-needs persons on what to expect at the airport.

Miracles

An autism sharing - my parenting journey - at Bethany Emmanuel Church on 1 Apr 2018 (English translation below):

我有一个儿子，甘泉，今年十三岁。他有自闭症，所以不懂得沟通，就算是yes or no 的简单问题也答得不清不楚。他就像外星人，不会讲我们的言语，也不明白我们讲的话，甚至不明白我们在做什么，就这样时常处在一种很没有安全感的状态，很容易情绪失控。

成为他的妈妈之后，我终于明白什么叫 Surrender - 束手无策，只能投降。当他伤心流泪时，却又说不出原因，我只能为他祷告。我说： 上帝啊，只有你明白，能安慰他，帮助他，我就把儿子交给你了。当他在外面大闹，有时又哭又踢又想逃跑时，我好像走进了恶梦，根本无法控制局面，我只能向上帝呼喊：Help!

有一回，我带两个孩子到 Changi 机场的室内游乐场玩耍。从我家搭巴士到 Changi 机场要一小时。去的时候还蛮开心，不料我儿子在回来的路程情绪失控。可能是用餐前肚子饿过头，或是因为地下巴士站太吵。他开始是又捏又扭我的手臂，然后用指甲抓我。然后在巴士上尖叫，甚至企图攀爬前面的椅子! 我给他包包抱，他将包包往后扔，还好乘客把包包传回来。我让他听他通常会喜欢的音乐，他把耳机大力地拔出来。我温和地数到十，希望他能稳定下来，可数到了十他好像又要发作了。怎么办？可怜的妹妹一个人坐远远的，我也照顾不了。我只能祷告。

嗨，这么漫长的旅途，我们几时才到家？我开始唱诗歌，边唱边拍儿子的手臂，然后拍他的胸。就这样，慢慢的，儿子终于缓和下来。这时，有一个乘客下车前，很善良又很诚恳地对我说: 你是伟大的妈妈。我听了， 紧绷的肩膀立即松懈下来，眼泪也开始一颗一颗地往下流。上帝啊，原来你一直都与我同在，眷顾着我。你确实是我的避难所，我随时的帮助。就这样，上帝给我勇气和力量度过一次又一次的难关。

上帝通过他的话语给我很大的安慰: 

In this world you will have trouble "...在世上你们有苦难"

啊，上帝，我经历的你都看到，也都明白。

约翰福音 16: 33 继续说：

But take heart
但你们可以放心

I have overcome the world
我已经胜了世界。”

上帝也给我写作的爱好和能力，让这些经历和当中所学习的功课能够成为别人的安慰和帮助。我出版了<进入我的世界> (www.come-into-my-world.com), 当中收集了新加坡31个自闭症故事。我也开始到处分享我的经验，希望能让更多人明白什么是自闭症。

感谢主，在这时期，我看到儿子逐渐的进步。他讲多一点话，也比较明白我们跟他讲的。他的情绪也渐渐的缓和下来，不再容易发脾气。我看到他的可爱 - 小小的东西能让他那么灿烂地笑起来。他学会看书，写字，弹钢琴。虽然他还是不会回答问题，很多事上都要有人监督，毕竟他不再是我家的龙卷风，反而变成了我们家安静的开心果。

我不知道为什么上帝要让我有一个自闭症的儿子，但我相信他是爱我的主，他给的礼物没有一样是不好的。他也是无所不能的救主，我必要在甘泉和我的生命中看到一次又一次的奇迹。愿荣耀归于这位用舍己的爱保护我们，并爱我们到底的主。

I have a son, Calder, who is 13 this year. He is autistic, hence could not communicate well. Even simple "yes" or "no" questions would not yield clear answers from him. He's like an alien from outer space - he couldn't speak our language and didn't understand what we said; he didn't even seem to understand what we were doing. Hence he was often in a state of insecurity and would very easily melt down.

After becoming his mother, I finally understood what "surrender" means. When he cried sadly yet could not tell us why, I could only pray. I said: "Lord, only you understand him and can comfort him; I entrust my son to you." When he melted down outside the home, crying and kicking and wanting to run away, I could only cry out to God - Help!

Once, I brought the two children to an indoor playground in Changi Airport. It took us one hour to take bus from our home to Changi Airport. Calder was rather happy when we made our way there. Unfortunately, he melted down on the way back. It could be that he was too hungry before we had our dinner. It could also be due to the noisy underground bus stop. He started by poking and twisting my arm. Then he tried to scratch me. On the bus, he screamed and actually attempted scaling the seat in front! I gave him his haversack to hug, but he flung it behind. Fortunately the passengers passed the haversack back to us. I tried letting him listen to his favourite music, but he yanked out the earphones. I gently counted to ten, hoping it would calm him down, but when I reached "ten", he started getting agitated again. What do I do now? His poor sister was sitting alone far from us and I couldn't at all tend to her. I could only pray.

It's such a long journey - when would we reach home? I started singing hymns, singing and tapping Calder on the arm, then on his chest. Gradually, he calmed down. At this point, a passenger, before alighting, came to me. Kindly and sincerely, she uttered: You are a great Mom. When I heard that, my tense shoulders immediately relaxed. And tears started flowing and flowing from my eyes. Oh Lord, so you have always been with me and watching over me. Indeed you are my refuge and my ever-present help. In such ways, the Lord gave me courage and strength to overcome one difficulty after another.

The Lord gave me great assurance through his word. He said: "In this world you will have trouble..." When I read that in John 16: 33, I was so moved. Oh Lord, what I'm going through - you know, and you understand. The Bible verse continued: "But take heart! I have overcome the world."

The Lord also gave me the passion and skill in writing, so that my experiences and what I learned from them could be used to comfort and help others. I published "Come into My World: 31 Stories of Autism in Singapore" (www.come-into-my-world.com) and started going around sharing my experience parenting Calder, hoping  to enable more people to understand what autism is.

During this period, I saw my son's gradual improvement (Thank God!). He could speak more and understand better what we said to him. He also mellowed down and no longer flared up readily. I discovered his adorable nature - how the smallest thing could spark his brightest smile. He learned to read, to write and to play the piano. Although he still cannot answer questions, and requires supervision in many matters, at least he's no longer the hurricane in my house. In fact, he has become the quiet but happy treasure in my home.

I do not know why God gave me an autistic son. But I believe God loves me and would never give me a present that is not good. Nothing is impossible for God. I believe therefore that I would see miracles, one after another, in Calder's and my life. May all glory go to this God who protects us with his very life, who loves us to the very end.

Eyes

Yesterday, I brought Calder along for vocal training in preparation for an upcoming Easter performance. Usually I would ask him to select a heavy chair among those stacked up. This is to discourage him from rocking the chair on which he sits.

The training lasts two hours. I have tried occupying him by letting him play games on my handphone (word search, bowling) but he's so reliant on prompting he lets the phone enter sleep mode most of the time.

Last week, I brought along a fidget spinner for him to fiddle with but it didn't seem to interest him for long. But he waited patiently and I conveniently assumed he's "absorbing" the music he's hearing (a safe assumption because he always looks very happy when I practise the same songs at home).

This week, the performers had to practise stage movements so we seat him where the audience should be - facing us.

After a while, I noticed that Calder's face was no longer visible. I could only see his hair. He had hung his head so low I thought he had fallen asleep. But he was awake,  obediently seated but not comfortable facing us.

I never knew my son has this level of difficulty with eye contact.

Trampoline Park

Yesterday I received a text asking if Calder would be joining the youth group for trampoline jumping today.

Trampoline? Oh, Calder loves the trampoline. We actually had trampolines at home for him to release his energy when he was small. Trampolines with an "s" because they were so well-used they had to be replaced a few times.

It was later that I found out the youths were heading for a trampoline park. Oh, not in church premise but out for a few hours with people who, though kind, may not know him enough to take adequate care of him.

They did not know, for instance, that Calder needs reminding to finish his food. They did not know that he might linger in the toilet and not come out unless prompted. They did not know that he answers "yes" to almost any question. And they did not know that they can gently distract him if he does something inappropriate, like playing with his sandals or putting a finger in his mouth.

The protective instinct told me, in this case, to keep him with me where he's safe because I understand him. But there's another voice that questions: how are people to understand him if he's "protected" from them? Especially since World Autism Awareness Day is approaching - the best way for people to understand autism, isn't it for them to interact with one such as Calder?

There's another facet of consideration: Would the youths feel burdened about Calder tagging along? Perhaps the outing is not meant for a special-needs. Perhaps I as Calder's Mom should have the sense to relieve them of the obligation.

But I do want Calder to make friends, even though he communicates minimally. Since he enjoys jumping, perhaps this is a good opportunity for bonding with people who might become his friends, his protectors, his champions even.

So I decided to put my worries aside and let him go.

I communicated to the youth-in-charge: "Appreciate patient guidance so he doesn't feel lost." And was pleasantly surprised by the reply: "We'll do our best! Thanks for having faith in us." Oh, so while this parent was wondering if Calder was welcome, the other side was wondering if the parent might be able to let go.

The youth-in-charge asked me if I had instructions for the buddy he's going to assign Calder and I found myself typing:

"Speak to Calder gently.
He may need prompting to eat his food.
Please look for him if he doesn't come out of the toilet.
Look him in the eye.
And smile."

So it was settled that Calder would be in the care of the youths who would give him his breakfast and his lunch, who would bring him to the toilet and who would jump with him in the trampoline park.

Even before the WhatsApp communication had come to an end, I had started praying for the arrangement to go well. I hope Calder wouldn't feel lost and wouldn't get lost. I made sure to charge the handphone in his haversack so his whereabouts could be tracked should he wander out of the trampoline park.

This morning, after releasing Calder to the youth group at 9am, I continued praying for the outing to go well. To my delight, the youth-in-charge texted me later that Calder seemed to have enjoyed himself. Sure enough, when I collected Calder from the youth room near 2pm, I was met with a radiant grin.

While waiting for Calder to return from the outing, I shared with Ethel my concerns and was surprised by her point of view -

Ethel: Oh, if  Calder go for the trampoline park with them...
(I thought she's going to acquiesce that he would feel lost)
... he would unleash his true self and that might frighten some of them off.
(I think she meant he might start giggling and bouncing wildly.)

Me: Wow, that's a good one - "unleash his true self".

Ethel: Why?

Me: Sounds powerful.

Ethel: Yah right?

Sorry

At the supermarket today, Calder took a basket and as usual I reminded him to be careful with it. Oops his basket hit a lady crouching by the cold vegetable section. I didn't see it happening but caught the gist by the look on that lady's face. As usual, I apologised on Calder's behalf. The fellow was still swinging his basket like nothing had happened. The lady was not at all appeased by my apology.

"Don't know how to say sorry," she  grumbled.

Me: "Calder, say sorry."

Calder: "Sorry!"

Unfortunately he didn't look at all penitent.

Me: "Sorry. He is autistic."

On the way home, I was wondering what's the best thing to do in such situations: Calder oblivious to the offense he's caused - unfortunately not an unusual occurrence. When necessary, I've always been the one to instruct Calder to apologise. But nobody likes a scripted apology so how do I get Calder to say "sorry" spontaneously?

Then I had an idea. Whenever he hits me or steps on my foot accidentally, I'll turn my face to him and exclaim "ouch!" That is the cue that will elicit a loud "sorry" from him. He's so cheerful about it I think he sees it like a game. Sometimes I wonder if he'd fire "sorry" to an "ouch" that is not his fault. But I suppose I can use this to solve the issue at hand - to do a quiet "ouch" so that he would bellow his "sorry" to appease whoever has been upset by him.

Actually it's a consolation of sorts that people often don't see his autism and therefore assume he's being rude, until the Mommy offers an explanation.

Meanwhile, Ethel heard my idea and was very tickled by the picture of Calder's enthusiastic "sorry".

Me: "Yes, Calder is going to bellow 'sorry' so loud that everyone can hear it!"

Ethel: "I think Calder is the most amusing autistic boy around."

Piano Fiasco

A few days ago, Calder melted down because he could not play a new piano piece.

I must confess I was largely at fault. I didn't hide my exasperation that he couldn't recognise the basic high C note. And that he couldn't see that two notes on the same line means he should play the same sound twice. I forgot often that Calder cannot sight-read.

Last Thursday, Calder's piano teacher remarked that Calder must have been working very hard to be able to grasp one song within one week. Truth is Calder doesn't have homework and tests like his sister because he studies in a special school. At home, if he doesn't play the piano, he's watching TV or listening to music. He has no initiative to practice on his own but he's always very happy when Mommy has time to guide him in his piano. And it gives him great delight to be able to play a new music piece from beginning to end. We usually tackle the piece a portion at a time so it takes him about four days to go through a longer piece.

If he's able to play the piano relatively well, it's because he likes to practise. He can sit at the piano for an hour, playing till his hands ache and he has to shake his fingers loose yet he remains cheerful. It's also because he has good memory. I'm always amazed by how his left fingers can settle so easily at the correct keys for chords. The other thing I've observed is that his brain does amazing fixing when he's asleep - the mistakes committed at one practice would have disappeared by the next day's practice.

I enjoy guiding him at his piano. Yes, I help him learn his music pieces even though I've discovered long ago that I'm no longer his match - I can tell when he plays  wrongly but cannot demonstrate the right way to go about it.

Saturday morning was our first time trying out Marriage D'amour. He couldn't place his fingers at the right places so I instructed him to play the same portion over and over again. I pointed at a note on the score and asked him what it was and was frustrated when he gave me random answers. I said, "Play double of each note, Calder" and carelessly overlooked that of course he wouldn't know what's "double".

That's when Calder started banging the piano and chanted "take escalator take escalator" (no idea why he said that) and yelled.

Oh oh. We were supposed to join his granny for lunch. Can he make it? Should I let him play familiar pieces to calm him down? Nope, not working. So I asked him to lie on his bed before I turned off the light. I vaguely remembered that he had been taught (in school) breathing techniques to calm down. So I asked him to blow 20 times. Still crying.

I took over the blowing instead. "One (gentle blow on his face), two (another gentle blow on his face), three... twenty (a kiss on his forehead)." Again, Calder? He indicated yes. So I did it another two rounds.

By this time, I was smiling as I blew. Because he had stopped crying. His breathing had calmed and he was gazing very intently into my eyes. A very special moment.

"Calder Mommy love. Sorry I was impatient."

Then I got him to blow onto my fingers 20 times. And directed him to the kitchen for apple (I've noticed that crunching has a calming effect). And in case he was hungry, I gave him a cake too.

By the time we came out of the house to take a bus, he was smiling.

Sunshine after the rain.

I must remember that Calder can play the piano without recognising notes. I must also handle his feelings with care, and not assume that because he is quiet, he is immune.