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