SCAB

Calder likes things to be in original and "right" condition. When he was small, he would step forward to close doors that were left open, whether or not he knew the occupants. Yesterday, he repeated the word "put" and I saw that he was intently trying to replace the scab he had scratched off his foot.

Orange Water Bottle

What is more chilling to the heart of a parent than to see his or her child trying but never within reach of happiness? Even as I’m typing this, Calder is in his bedroom sobbing. Oh, it has been so long since I heard him sob like this. His sobbing makes me sad. It seems like sleep is going to elude him for a while.

Calder is consumed by the distressing thought that he has spoilt his new water bottle. And he is at fault for flinging his bag onto the floor in anger. The new orange water bottle in his bag was smashed and water leaked from its broken bottom. I’m thankful that Calder had on his own developed the habit of removing his piano books after returning home from piano class. Otherwise, it’d not only be the water bottle, but his score books that are spoilt as well. When Calder is upset, he will start listing the things he has spoilt and the things he has lost. The orange water bottle is a new one after he lost his yellow water bottle in school two weeks ago. For days, he kept asking me where his yellow bottle was. The phrase subsided after I gave him the orange water bottle and told him there’s no need to look for the yellow water bottle any more.

What is the cause of today’s distress? It started from a metronome that Ethel’s piano teacher just gave her. Since Calder finished his supper before his sister, I asked him to go play the piano instead of dragging my trolley here and there. And so Calder went to play the piano. The next thing we heard was a strange humming sound. Calder must have seen the new metronome and proceeded to press its buttons as he is apt to do with any machine with buttons.

The next thing that happened was Ethel marching in to rescue her metronome. She questioned him, “Oh, Calder, what sound is this? Have you spoilt the metronome?” And Calder did what he always does when upset – put his finger into his mouth. This time, he thrust his face very near to Ethel while said finger is going into the mouth. And Ethel cried out, “Go wash your hands!” The unraveling gained momentum from here, because Calder came out of the room ready to smash things. And the victim turned out to be the orange water bottle that he cherishes, hidden in his haversack. Before throwing the bottle into the bin, Daddy showed him the crack at the bottom of the bottle. Oh, Calder's heart must have cracked too, for he had added yet another item to the things he spoilt.

He began chanting about turning off a light (I have no idea why) and I decided to go into his bedroom to comfort him.

I asked him, “How are you feeling?”

“Happy,” he gave his usual answer to such a question.

“Are you sure?” I asked. He realized he’s actually sad and his eyes puckered, ready to cry.

“Oh dear, Calder is so sad. Why are you sad?”

“Broken.”

I admonished, “Next time, cannot throw things when you are upset, ok? Also cannot put finger into your mouth.” “And cannot put your face so near to Mei Mei,” I demonstrated. “Come, Mommy hug.”

Calder continued sobbing. “Calder, it’s ok. Tomorrow Mommy will find you another water bottle. So Calder, don’t be sad anymore. Remember the book we read about being sad? Throw the sad thoughts away!” And we prayed for him to go to sleep nicely.

Since Calder’s anger was triggered by Ethel’s shouting, I thought there’s something I should teach Ethel, without making her feel it’s her fault.  So I put Ethel on my lap and told her, “Mei Mei, God put us together in this family to love and protect one another.”

“Mommy, I didn’t think Calder would throw a tantrum.”

“Yes, it’s been a long time since he’s like that. God has given us peace for a while, isn’t it? Mommy is sad because Mommy doesn’t want Calder to be so sad he cannot sleep. Shall we pray for him?”

Even as I type this sentence, I’m so relieved because there’s no sound coming from Calder’s room anymore. Perhaps he has fallen asleep after all. If yes, I’m glad he has improved his emotional control, to be able to gain comfort from the logic that Mommy is going to replace his water bottle, and that indeed, everything is “ok”.

Dear Lord, I must remember too that because you are with me, everything is “ok”.

Brenda Tan is the author of “Come into My World: 31 Stories of Autism in Singapore” (www.come-into-my-world.com). She has 2 children:  8-year-old Ethel and 11-year-old Calder who has autism.

Is “autistic” an insult?

Recently I was told I shouldn’t use the word “autistic” to refer to my son. I should put the person before the condition, this lady told me. So I should say “Calder has autism”, rather than “Calder is autistic”. Ironically this lady does not have a child with autism. She is, however, a strong advocate for people with special needs. Am I being insensitive to use the word “autistic”? Someone posted Mr Brown’s article on his daughter’s first word. I thought: hey, let me read that again. Yes, Mr Brown used the term “autistic daughter”. So I’m not the only one. When my hubby got home from work, immediately I asked him:  is it ok for people to use “autistic” to describe Calder, or should they use “has autism” instead? What’s the big deal, my hubby said. Then I decided to ask more parents. I posted a mini-survey on a few parent-support Facebook sites:

Do you mind when people refer to your child as “autistic”?

(a)    Yes, I mind. It is better to say my child “has autism”.

(b)   No I don’t mind. Makes no difference to me.

68 parents responded to this mini-survey. Among them, 52 chose (b). In other words, 76% don’t see a difference. Since I am part of this group, let me explain why.

1.      This issue is immaterial among the overwhelming challenges faced by families with autistic children. When you are trying to keep your son from running away from you, when he is agitated yet cannot tell you what’s bothering him, when he knocks at everything including cars with drivers in them, do you think you have the energy to insist that people use the politically correct term?

2.      Many of us have become so thick-skinned we are immune to people staring at our kids, much less people who use politically incorrect terms. Calder is in the lift and getting very excited. He starts flapping his hands and gets ready to bounce. “No jumping in the lift, Calder!” Oops, he has landed on uncle’s toe. “So sorry, my son is autistic,” I explain to strangers for the umpteenth time. As you can see, the word “autistic” slides off from my tongue very naturally. I would use it instead of its more formal cousin “has autism”. In fact, I’d only rephrase the sentence to “my son has autism” if the stranger thought I’d said Calder is “artistic”. As it is, I can’t even be sure the public understands what’s “autistic”. Wonderful if they do! So do you think I’d be offended if they use the word?

3.      The alternative form makes the sentence less easy to understand. This became very clear to me when I started writing “Come into My World: 31 Stories of Autism in Singapore”. Take for example the sentence in Point 1:

      This issue is immaterial among the overwhelming challenges faced by families with autistic children.

      Imagine using the so-called politically correct alternative:

      This issue is immaterial among the overwhelming challenges faced by families with  children with autism.

      

      A mouthful indeed! And ambiguous too, since “with autism” can also refer to the families, instead of the children. The same problem surfaces when I send messages to fellow parents, informing them of autism events or researches requiring their participation:

“For families with autistic children:” 

Versus

“For families with children with autism:” 

Do you see what I mean?

4.      Autism is very much a part of who Calder is, so I do not think it is inaccurate to say “Calder is autistic”. Perhaps if Calder has a milder form of this condition, to the extent of being able to blend into the crowd like neuro-typical children, perhaps then I’ll be more careful not to use the term “autistic”. Then again, I wouldn’t use “autism” either, just so that he may remain undercover and not be ostracized or singled out.

5.      What is the difference between “he is autistic” and “he is artistic”? We use this sentence structure all the time. For example, Calder is active. Calder is strong. Calder is impatient. Must I change them to “Calder has active disposition”, “Calder has great strength”, and “Calder has the tendency to be impatient”? When someone says your daughter is pretty, are you going to react with the diatribe of not limiting the girl to just prettiness and therefore recommending the use of “she has a pretty appearance”? “Autistic” only sounds like an insult if you think it is in the same camp as “idiotic”. It is not, and so parents like me do not shun it. In fact, there are people who refer to themselves as Autists, or Aspies. They are proud of being different.

6.      I don’t think people who use the word “autistic” mean to insult. More often than not, it’s simply because they have not heard an advocate recommending the politically correct  version. The layperson wouldn’t be able to tell the difference between “a beautiful girl” and “a girl with beauty”.  I first became aware of “autistic” as a taboo word when I talked to lecture classes of students on autism. No, I am not an expert on autism; I merely share my experience as mother of an autistic child (try rephrasing this into the politically correct form and you will see what complication results). When the students heard me using the term “autistic”, they became puzzled and asked: isn’t it insulting? At least that’s what their well-meaning special-needs lecturers told them. I replied: it makes no difference to me. Being sensitive is a positive first step towards supporting the autism community and I do so hope the support does not stop at words. Yet I have come across adult students (educators taking Leadership courses, for instance) who think it is very selfish for parents to put their autistic children in mainstream schools.  These same students would use the politically correct term, but is that any consolation to us? 

So what’s the conclusion?

1.      My husband says that since there are people who mind, even if they are the minority, then use “with autism” instead of “autistic”. I concede, provided it doesn’t cloud my sentence or make me sound unnecessarily formal.

2.       If parents do not think it is an insult, and the children themselves know no better, there is no need to insist on the politically correct usage.

3.      Action speaks louder than words. Move beyond words to campaigns that can make real difference to lives, like caregivers’ respite, integration of special needs people into mainstream society, employment for people with autism etc.

If you are a member of the public, I thank you for reading this article. Empathy for people with autism develops with familiarity. Allow yourself to know more about autism. If there is a show on autism, watch it. If a book, read it. I am reminded of an old uncle who travelled from Marine Parade to Bishan to purchase a Chinese copy of “Come into My World: 31 stories of Autism in Singapore”. Speaking in Mandarin, this old uncle told the counter staff at Pathlight Mall that where he stayed, he often saw groups of autistic children taking walks in the vicinity. He wanted to understand them better, that’s why he went to Pathlight Mall to purchase this book, which he had read about in the Chinese papers. That’s what I call an active first step to supporting the autism community. When the heart is ready, the hands will be too, when opportunities arise to help. I thank you in advance, on behalf of the autism community.

Related information:

On the book “Come into My World: 31 Stories of Autism in Singapore”:

www.come-into-my-world.com

On Mr Brown’s article regarding his daughter’s first word:

http://www.mrbrown.com/blog/2015/07/agnus-dei.html

Other articles on this topic:

https://stimtalk.wordpress.com/2008/08/27/autism-vs-autistictheres-a-difference/

(In the above article, the mom compares “I have a son with autism, twinkling green eyes, long brown hair, the cutest smile, an infectious laugh, and an apparent lifelong obsession for the freakin Wiggles” to “an autistic son”. I think a fairer comparison should include similar attributes on both sides: “I have an autistic son with twinkling green eyes, long brown hair, the cutest smile, an infectious laugh, and an apparent lifelong obsession for the freakin Wiggles”. )

http://sg.theasianparent.com/autistic-or-autism/

http://autisticadvocacy.org/home/about-asan/identity-first-language/

https://www.identityfirstautistic.org/

CRY

Last night, Calder started crying in his bedroom and became most distraught. But he couldn't and wouldn't tell us what disturbed him. It occurred to me that because he couldn't express himself, he must carry his own burdens and face his own fears. But thank God I have supernatural help. I prayed for Jesus to do what we couldn't - to comfort Calder and give him peace. And Calder eased into sleep. And woke up the next morning smiling!

BURGER

While my girl saves the best for last, Calder zooms in on the good stuff. So when eating burger, he finishes the patty before the buns and if you give him raisin bread, he plucks out the raisins to eat first. 

OCTOPUS

Calder should be called Octopus because his hands are always busy. He jabs at buttons, knocks on tables and doors and reaches for other people's drinks. I remind him: "Calder, hand in pocket!"

PUZZLE

Calder is so systematic he fixes puzzle from left to right.

DRINK

Calder has been picking up discarded drink containers from the ground and putting them to his mouth. Instead of spilling threats, today I got him to throw the containers, one by one, into the dustbin.

CRAWL

Today Ethel said, "Calder, crawl!" And he got on all 4s. Yes, if you ask him to jump, he will jump. If you ask him to clap, he claps. That's how simple Calder is.

Video of CALDER

Calder enjoys learning and has shown remarkable improvement in self-control as a result of learning. Click here to see him and some skills he has picked up. The video was filmed by psychology students of Ngee Ann Polytechnic.

SPATULA

These days, Calder would sneak into the kitchen, grab my wooden spatula and start "cooking". The result is chopped version of whatever food was left in the frying pan. Mashed eggs are ok but mashed fish?!

BLUEBERRY

Calder is eating blueberries very slowly these days. He carefully drives the toothpick into the hole in the middle of the blueberry and would try again if he misses. Bull's eye.

LIZARD

Yesterday, my mom pointed to a fat lizard on the kitchen wall and asked, "Calder, what is this?" And Calder proceeded to grab the lizard! When he was in childcare, and his class went for nature walk, his teacher got him to pick snails for his classmates to observe. I bet if we ask him to catch cockroaches, he would!

FISH

Calder was with me when I went to the supermarket yesterday. He started hitting the apples and oranges as he named them, so I instructed, "Calder, no touching!" Unfortunately the next thing I saw was him holding up a raw fish by its tail!

TOOTHPICK

The other day, Calder came to me in a great state of excitement. "Mommy, what did we take?" I was clueless. Then he asked a few more times, "What did we take? Mommy!" Later I realised I had forgotten to give him his usual toothpick for blueberries. Today he ate blueberries again, but he asked for "chopsticks". So I gave him a pair of chopsticks. He realised he had made a mistake and tried to recall the right word. Good thing he remembered the list of new words. (I had pasted a blank paper on the wall beside the dining table and wrote on it new words he learned). A quick glance at the list and he triumphantly declared, "Toothpick!"

SCALDED

Once, Calder scalded himself during a meltdown. I was at work and my mom was taking care of him. There was a pot of boiled chrysanthemum soup on the stove and he shoved it down in anger. The hot soup splashed onto the floor and rebound onto him. Fortunately, the scalds didn't turn into blisters. I thought the experience would have made him fearful of hot surfaces. Unfortunately, it has the opposite effect: now he touches everything he thinks is hot.

SNIPPETS

Thinking about this for a while. Going to keep this blog updated with snippets of life with Calder. I hope it'll be useful read for fellow parents and others curious about autism.