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."