PUZZLE

It drives Calder fairly crazy if there's a missing piece.
Woe is she who does not count before she starts him on a puzzle.

Type 2

A friend suggested letting Calder type his journal, so that's what I started doing, in addition to his weekly typing of memory verse/s. To cut down the amount of work, I get him to type his past journals. It turned out to be something he enjoys, because he wrote those journals, and he has always liked reminiscing. I realised that starting this seemingly simple project is really introducing a whole new set of skills.

He learned:

1. How to use the Shift key to make capital letters.
2. Where punctuation marks like comma and full-stop are located.
3. How to use space-bar to separate words.
4. How to use Backspace to cancel an entry.
5. How to move to next line using Enter key.
6. How to move the mouse to put the cursor where it's needed.
7. How to left-click to open a new word document...

Skills that we take for granted. And I'm thinking perhaps somewhere in the future, there's a quiet office where he can work, keying words one at a time. Because he would be confused by noise and intentions at a cafe, and gardening would be too hot. I wish there are more job options for autistic persons in Singapore, jobs that

1. Require minimal verbal communication.
2. Are repetitive yet progressive (potential to learn new things).
3. Are set in calm environment (not noisy or hot or urgent).

Is this ever possible?

Type

Calder's teachers suggested training him to type on computer. I was wondering what's worth making him type word by word. Bible verses! So I downloaded the app Remember Me that blurs out text bit by bit and that scramble words, and started memorising meaningful verses with Calder.

The procedure:

1. Decide a Bible text for memorising.
2. Copy and paste it onto Remember Me.
3. Get Calder to type out the verse/s on computer.
4. Align the text for easy memorising.
5. Print out two or three sets of this text.
6. Paste around the house.
7. Use Remember Me's blurring function to memorise the text.
8. Use Remember Me's puzzle function to recap the text.

Today's memory verse (aligned):

Even youths grow tired and weary,
and young men stumble and fall; 
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Isaiah 40: 30-31

Hiding Place

Calder was volatile today, vacillating between grinning and howling. In other words - moody. Is it because the weather was hot? Because I was busy and couldn't give him my full attention? Because he didn't sleep well last night? Something unhappy that happened in school? Because of raging hormones at 14? Or, like what his sister suggested, food allergy? It's another Mystery with a capital M.

What I do know is that when my autistic son gets moody, I have to drop everything I'm doing, and bring him into the dark and quiet bedroom, sit beside him and try to transmit my calm to him. I pat his shoulder rhythmically or massage his fingers one after another, in the attempt to sync my calmer heartbeat to his anxious ones.
This only works if I'm truly calm. So the worst thing that can happen is when he gets more and more agitated and I lose my patience. Because when I use the impatient voice, it gets magnified into his mad rage.

And so time stop while I try to assure him of my love. We listen to serene music or I sing to him. Today, the song that I repeated over and over again was "You are my Hiding Place". And it occurred to me that God has given me this soothing singing voice for the purpose that when my autistic son is born, it can comfort him.

And I'm back on the bed in the dark and quiet room, sitting by him like I mean to stay there forever.

May God give him peace.

"The eternal God is your refuge, and underneath are the everlasting arms."
Deut 33 : 27

Full-stop

When Calder read aloud, he would pause at the end of a line on the page, but never at the end of a sentence. For the longest time, I had to remind him that he needed to stop at the full-stop. Then I found a good solution - to take turns reading with him, one sentence each. This way, he became sensitive to the full-stop.

Autism Awareness 2019

(Scroll down for classroom activities to understand autism better.)

FRIENDS          by Brenda Tan

Ever since I published my first book on autism in 2010, I have often been asked to share my experience as a parent. I have a son, Calder, who is autistic. On one occasion, the audience asked me, “Does Calder have friends?” Immediately, I answered, “How do you make friends when you can’t talk?” Have I answered too quickly, I wondered. I asked this question of Calder’s younger sister and she exclaimed, “Oh, his best friend is the lift!”

Let me tell you about Calder.

Calder was diagnosed with moderate autism soon after his third birthday. When he was 18 months old, the pediatrician noticed that he did not understand our speech. He did not turn when she called his name. And when she asked him, “Calder, where is your nose?”, he looked at her blankly. The pediatrician said to me, “Mommy, I think you need to bring him for a developmental check.”

It became clear to me how different Calder was from other neurotypical children. While the other childcare kids were seated and listening to the teacher, he was wandering around the classroom. Or hiding under the table. He did not seem to understand that verbal words could get him what he wanted. Instead of pointing, he would raise my hand toward the item he’s interested in.

When his sister came along, the difference became starker. Ethel talked and talked; it’s as though she had taken over her brother’s quota of words. She’s full of imagination and stories to illustrate and tell. Calder, given free rein, would spend all his time opening and closing doors, flipping the switches on and off, watching the fan spin, flushing the toilet. Even now, his favourite thing to do is to run to lifts to press their buttons. He would watch the lift approach, its door opening and closing, before pressing the button again. In vain would I tell him that we were not taking that lift and so he shouldn’t press its button.

At three, Calder was sent for a formal assessment to find out what’s causing his developmental delay.

It’s autism.

Autism explains why he liked things to stay the same. Kaya bread must be followed by jam bread. TV must be followed by music. All shows should only be turned off after the credits had finished their run. The route to school must stay the same. If there’s change of plan, or if somebody suddenly speaks or makes a stern sound, he would melt down. And often, these meltdowns would only cease when he had completely exhausted himself from the loud tears and angry thrashing.

It was hard to prevent such meltdowns because Calder didn’t understand our words. If he did, we would have explained to him why plans had to change. It was hard to resolve the meltdowns because he didn’t have words to tell us why he’s upset. It’s like having a foreigner in the house. Instructions were best demonstrated and most of the time, I found myself using my eyes to assure him that he’s safe.

How can Calder make friends when he doesn’t talk? Surely friendship is about communicating and reciprocating? So, no, Calder doesn’t have friends.

This perception changed when Uncle Leong came into our lives. Uncle Leong is a retiree from the English congregation of our church (we attend the Chinese service). One day, I shared about Calder and his autism to this English congregation. Not long after, Uncle Leong appeared by our side with sugarless sweets for Calder. When he found out that Calder preferred chocolates, the sweets turned to Rocher. Then he learned that Calder likes to eat pao (Chinese buns). He started delivering tasty cha siew pao to our home. Now he visits us weekly. If we were not out delivering autism books (Calder likes car rides), Uncle Leong would sit beside Calder in our living room while Calder plays bowling on his handphone, or while we watch a video recording of Calder when younger (because Calder likes to watch himself, we have more than 30 of such recordings).

Does Calder talk to Uncle Leong? Apart from the standard greeting (“Hello Uncle Leong!”) and answers to simple questions like “Is Calder happy?”, hardly. But Uncle Leong is definitely a friend of Calder – his best friend, in fact.

So I was wrong to assume that friendship must involve communication, and give-and-take. Instead, a friend is someone who is happy when you are happy, sad when you are sad.

Not long ago, I was asked to speak to a group of youths on how we can befriend people with special needs. I decided to find out by asking special-needs persons directly. Very soon, I realized that many autistics among the special needs community cannot answer survey questions like “How can we be kind to you” or “How can we be your friend?” They either lack the words or the concepts are too abstract for them. So the parents answered on their behalf. Among those who could express themselves through writing, it was apparent how hungry they are for friends, how needful of support.

So I decided that beside helping the public understand what autism is (for the individuals and their family), I would like to share how we can be a friend to the autistic:

If the autistic persons can communicate -

·         Listen with patience.

·         Chat at somewhere quiet and cool.

·         Find common interests.

·         Gently inform them if they have said or done something that is not socially acceptable.

·         Explain ahead if you foresee a change of plans.

·         Befriend them on social media like Facebook.

·         Speak directly, not beat around the bush.

·         Do not keep them waiting.

If the autistic person cannot communicate well –

·         Eat together.

·         Join them in their interests.

·         Find out about their likes and dislikes from their caregivers.

·         Speak calmly.

·         Show appreciation for their strengths.

·         Be their voice.

·         Protect them from bullies.

I hope that having understood autism better, you would be willing to reach out and support people with autism, verbal or non-verbal. May you be the friend that brings sunshine into their lives.

Autism is a brain condition that causes difficulty in communication and social interaction. Observable from childhood, autism is also characterized by repetitive behavior or intense interests.

(The above article was adapted for use in Mar 2019 issue of What's Up, Singapore's newspaper for students.)

BULLYING

When I was interviewing autistic adults for my new book “MY WAY: 31 Stories of Independent Autism”, the issue of bullying kept cropping up. It seems to be part and parcel of the autistic life! Indeed, research has found that autistic children are four times as likely to be bullied than neurotypical children. Bullying is considered to have taken place if a person intentionally and repeatedly hurt someone who is less powerful. This hurt can be physical, verbal, social or cyber. In an online survey, 192 parents in Canada and United States were asked how often their autistic children (5 to 21 years old) were bullied in the past month and how long the bullying persisted. A high 77% reported bullying in the past month. 53% of these children were victimized more than once a week. 54% of the cases had lasted more than a year.

Why are autistic children so vulnerable? They may have been targeted because of their strange interests or behaviours. When bullied, they lack the communication skills to explain or assert themselves. Many are easily distressed, which encourage bullies to carry on. Due to poor social skills, autistic children lack friends who might otherwise protect them.

Indeed, peers make a big difference. It has been found that bullying lasts longer when there is an audience. This is because bullies enjoy the attention given to their display of power.  So if you merely watch a bullying episode, you are actually prolonging the hurt being done. On the other hand, if you intervene, the bullying would stop in 50% of the cases.

Hence, one way to discourage such bullying is to for peers to understand their role as defenders of the weak. The school should have a clear system where these peers can go to safely report bullying. Structures can also be put in place to encourage mingling and making of friends. Instead of leaving it to the students to find their own teams or their own seating partner, the teacher can make the decision. This way, the socially awkward autistic child is less likely to be left out. It has also been found that children are more welcoming towards peers with special needs if they have a better knowledge of the special needs. Hence, another way to promote inclusion is to organize talks on special needs for the student population.

(The above information is taken from “Bullying Experiences Among Children and Youth with Autism Spectrum Disorders” by M. Catherine Cappadocia, Jonathan A. Weiss and Debra Pepler as published in Journal of Autism & Development, 2012.)

Who is Brenda Tan?

Brenda Tan is an ex-journalist with more than 10 years of experience teaching English in tertiary institutions like Nanyang Technological University and Singapore Institute of Technology. After her son was born, Brenda started writing about autism. She published “Come into My World: 31 Stories of Autism in Singapore” in 2010 and “MY WAY: 31 Stories of Independent Autism” in 2018. To enable the public to understand autism better, Brenda has accepted many invitations to share her experience as a parent  and writer. Brenda has two children: 11-year-old Ethel and 14-year-old Calder who is autistic. Brenda can be contacted at www.come-into-my-world.com .

(The results of Brenda’s survey on inclusion:

http://brendaandautism.blogspot.com/2018/09/how-can-we-be-your-friend.html )

Classroom Activities

1. At the end of a day, a Mom and Dad talk about their child with autism. Write a script of their dialogue.

E.g.

Dad: How was your son today?

Mom:

Dad:

Mom:

2. Imagine you have autism. Write a diary entry.

3. Find out about the needs of children with autism. Propose an invention that can help them.

4. Watch http://www.come-into-my-world.com/autism-video-2. Discuss how autism may affect the sibling.