Friday, September 28, 2018

Tell Me Why

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

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.

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

Monday, September 24, 2018

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” (

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


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


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


2a. How have people been unkind to you?

Ignoring me

Excluding me


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?


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.


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.