Ulcer

Yesterday, while he was playing game on handphone (probably Jelly Jump or bowling), I showed Calder the ulcer on my lower lip.

Me: Calder, look!

Calder: Ulcer.

Me: It's so painful. What should we do?

Calder: Go dentist.

Young Man

There's a peaceful pair of seniors in my block. The wife is warm in her soft ways and would enquire after my family when we meet. The husband, a Caucasian, is her silent companion, so quiet I don't think I've ever heard him speak, at least not loudly enough for me to decipher his words. Yesterday, I heard him clearly for the first time.

At the bus stop -

Wife: So, how's the young man? (Referring to Calder)

Me: He's very tall now.

Wife: Oh yes, he was towering the other day I saw him!

Husband: It's not so long ago that he was crashing around.

(I don't know about you, but I find this description very amusing, and not inaccurate - what with Calder and his loud movements.)

Gift of the Magi

Teaching two big classes of future software developers. Alongside our reading on the very good story Gift of the Magi, I got the students to present on the topic "The Best Gift". And decided to join in:

THE BEST GIFT

Supernatural power is found not only in computer games. I learned this keenly after giving birth to my son, who has autism. Autism means that my son cannot communicate easily. From young, he didn't seem to understand much of what we said. What's more disturbing is that he couldn't tell us what he thinks. Even now, at 14 years old, he sometimes breaks into tears and we never know why because he couldn't answer our questions. Is it because he couldn't find the words? Or because he didn't want to tell? It's a mystery among many other mysteries that we have to live with, because of his autism. Recently I wondered to myself - because my son could never tell us why, we were never able to help him solve whatever problem it was that was causing him such grief. Almost always, I could only console him by assuring him that Mommy loves him. But the root issue was never resolved. Is love enough, to carry him through all of life's problems? Other than speechless grief that breaks my heart to witness, the challenge of raising an autistic child is meltdown that can build up without warning, especially when outside the house. My son is very tall and strong. How do I get him home when he is upset and wants to stomp his feet, cry out loud, run away, outside the house? During these nerve-racking moments, I summon my supernatural power. I pray: God, help me! And wait for help to come. Therein lies my hope and my courage. It is what keeps me trying. Because I have long come to see that there're serious limits to what a human can do. Without supernatural help, caring for an autistic child is too long and too difficult a journey. If there is no God,  what hope have I that my best is good enough, and that my worst can be remedied? So I do what I can, and leave the rest to God whom I believe is much more able and who loves me and my child enough to intervene, and help. If you ask me what is the greatest gift, I will tell you - it is the gift of prayer.

Shoelaces

Bought Calder a new pair of track shoes and wondered if once again, we have to change the matching shoelaces to some elastic strings. Why not teach him to tie shoelaces, I thought. And so we did. My mom, who babysits when I'm teaching,  starts the project. Then Ethel. Then me and the Dad. And in one week, he finally grasped how to tie a ribbon. In the process, I realised how intricate the process is, to be able to form a tight  and steady ribbon. Is it right over left or left over right,? Do you bring the end from outside in or from inside out? How big a bow should you make? How do you adjust if the ends get so long they touch the floor? How do you undo the shoelaces without making a dead knot? No wonder we were so quick to resort to shoelace alternative when he was young. Because it seemed impossible to teach when he didn't understand our words, when he wasn't looking, when he was easily upset. But he's 15 and has come a long way from that super-unstable kid. Next is the step of faith - to let him wear those shoelaces out, when we're not with him, praying that he wouldn't get stuck when they unravel, that people would help him if he couldn't figure a way out.

Birthday 2019

Just realized it's Calder's birthday today. How can I make it a happy day for him? Restock the yogurt in my fridge. Buy organic apples and perhaps grapes or blueberries too (he's always asking for fruits). Ah yes, Yoyic cultured milk (bigger & hence more satisfying version of Vitagen) or yogurt drink. Magnum ice cream? Butter cream cake? Bring him out for dinner? He doesn't know it's his birthday and wouldn't ask for anything special - the beauty of simplicity. But many things (usually food) can delight him. Let me start by making his favourite bean soup...

Classmate

"Justus," Calder mumbled. 

Curious why he would think of this classmate, I asked, "What did Justus do?"

"No," Calder replied, "I don't know."

"Who is Justus?" I asked.

"Justus is absent. Justus is present."

"Who is Justus?" I persevered.

"God." (His favourite answer to the bedtime Bible story questions)

"Justus is God?!" I challenged.

"Yes" (Another favourite answer.)

So I decided to demonstrate:

"Justus is my classmate."

Automatically, Calder repeated after me: "Justus is my classmate."

"Who is Justus?" I asked again.

"Justus is my classmate." 

"Correct! Who is Brenda?" I ventured.

"Brenda is my classmate."

"Hah?!"

"Brenda is my - church."

I pointed at myself.

And he tried again:

"Brenda is - Mommy!"

Correct!

Slumber

The kids' bedtime are now both at 9pm. Calder, being in a special school with no tests and hardly any homework, easily makes his bedtime every day. In fact, these evenings he even watches the clock to announce "9 o'clock!" - time for bed.

For a change, today Calder slept later than his sister. This was because I wanted him to help me hang the laundry but the washing machine was not done with the clothes yet. Meanwhile, Ethel went to bed obediently - probably tired from battling PSLE  Math this morning. In the 5 mins waiting, I decided a read a library book with Calder. Of course, the book took longer than 5 mins. After that, I settled at the kitchen table to do some marking while Calder hanged the laundry with occasional prompting from me. Done with the bamboo poles, he brought piles of damp laundry to the drying rack in the living room to hang.

Suddenly he appeared before me with his damp school T-shirt. Oh, this shirt would need a hanger. But the hangers are in Ethel's room. Oops, did he barge into her bedroom? I walked from the kitchen to the living room and saw that Ethel's door was open and -- her light on! And she was sitting up on her bed looking bewildered. I quickly turned off her light and closed the door.

By this time, I had noticed Calder's  uneasy countenance. I figured he must have banged right into Ethel's room (the way he bangs any door open), turned on the light to search for hanger, but then was halted by his sister's cry of alarm. Shocked, he had then come out without the hanger, straight to me.

I explained to Calder that we shouldn't go into the bedroom when someone is asleep, that it's ok to hang the school clothes without using hangers. But then I saw him knock his knuckles hard against the rack and I knew that he had been frazzled. Thank God, the unease didn't escalate into a meltdown.

This incident showed me how different Calder is from us, that he has to be explicitly taught how to show consideration for others. It also showed me how vulnerable he is - it's so easy to faze him. But he's learning, and it's so precious - whenever he cooperates with whoever is trying to teach him something.

And now both kids are in bed and I hope both settle into restful slumber.

Will you?

What Calder may be saying,
which is why I won't give up:

I may never be as
good
as the others.
In fact, I would
fail
again and again.
Will you still love me?
Will you hold my hand?
Will you risk the trust
that even though I was not ok
yesterday,
I can be ok
today?
Will you determine to
celebrate my strengths
And forgive my weaknesses?
Again and again?
Will you persist in believing
that I can make it
one day?

Sleeping Beauty

The afternoon did not go well. Shortly after entering the bowling alley, Calder started laughing. This was not the happy giggling that sometimes comes over him, but more of force-start cackling. When I approached him to focus on the warm-up exercises, he started edging off. It's like we were like poles of a magnet - as I moved towards him, he moved the distance away, meanwhile looking like he's ready to take flight. So I got ready to do what I've started doing when he exhibits such behaviour during bowling training - get him to stand at the lockers behind (there's a nook to hide there) where he can laugh all he wants (and not run away) in between his bowling turns. But two well-meaning moms told me they'd handle him and sent me off on an hour's break. Since I can never be sure if my own methods work, I agreed to let them take over. I spent the time working on an article I was supposed to write for a newspaper. Another mom asked if Calder can stop playing for a while to teach him that he has to behave. I said ok (whatever that works, dear). When one hour was up and I returned, Calder was no longer laughing. But he had spit all over his shirt and pants and even on the common seat. The Cantonese would say at this point: "No eyes to see". Immediately, I brought him home.

I remember what a fellow parent shared at a seminar- that special-needs parents cannot be "self-centred" because if we focus on ourselves, we think our children's behaviour or performance reflects on our capability as parents and that makes us want to fix our children (instead of accepting them). Indeed, among the many dark thoughts floating around in my head, I imagined what I must have looked to the other people at the bowling alley: Tsk tsk, this parent doesn't know how to control her kid. Tsk tsk, this parent is irresponsible (where is she when her kid is creating a havoc?!). Tsk tsk, this parent cannot make it.. Which reminds me of a Bible verse that I read and remember since young:

"It is dangerous to be concerned about what others think of you, but if you trust the Lord, you are safe." Proverbs 29:25 (Good News Bible)

Back home, I got Calder to wash the spit off his clothes (first time for him) and had him revise what he'd done wrongly at the bowling alley - "I cannot laugh laugh. I cannot spit spit. I cannot run away." He had sobered up so much by then that I had no heart to scold him. In fact, I became rather confused whether he could have controlled what he did at the bowling alley.

But heaviness had descended upon me and I felt like boycotting all the tasks at hand.

The next morning, he actually gave me an amazingly sweet smile when I went into his room to wake him up. But I couldn't respond with enthusiasm - the melancholy was on me. He caught the tone of my brusque instructions and started acting strangely again - closing his eyes and freezing when he should be dressing up, and then trying to use puckered lips to turn off the light.

I felt like I wanted to sleep for a hundred years.

I usually do my devotion right after Calder gets onto his school bus. This time, I prayed, "God, speak to me. I need to hear from you."

Guess what the day's Bible reading was?

Luke 22:46 NIV:

“Why are you sleeping?” he asked them. “Get up and pray so that you will not fall into temptation.”

And in my prayer journal, I responded:

"Thank you for speaking to me, Lord. I will turn to you instead of looking inward and indulging in self-pity. Teach me what to do, how to be a good parent."

Amen.

Overflowing

Over the weekend, I saw that Calder had become very happy after he finished his lunch. Probably because his stomache had been satisfied and also because the family was sitting together, he started bubbling with giggles. And he put his hands over his ears, I believe, erroneously thinking that he could muffle his laughter that way.  After he left the table, we started talking about how, if he laughed hysterically, we wouldn't be able to bring him into Malaysia because he would have problem crossing the customs. The next thing we knew, his exuberance had turned into distress. He started crying and biting his finger and knocking his knuckles onto hard objects and wanting to stamp his foot. Ethel observed that he must have heard us talking about him and felt sad that he couldn't go Malaysia (yes, it's a grave mistake to be talking that way about him within his earshot). The next day, she reflected that he's very temperamental, switching his moods so drastically. What I saw, though, was an overflow of emotions - how happiness could become hysteria and sadness become agitation. Perhaps what causes him instability is this overspill of whatever he feels.

Hungry

A few weeks ago, Calder was on a long bus ride with me when he suddenly announced, "Urgent." My heart took a leap - it's the first time he'd verbalized his needs so clearly. In my excitement, I responded, "Oh, you're urgent. Good talking! We will be reaching soon, then you can use the toilet. Wait a while more, ok?"

Two days ago, while at the bowling alley, he leaned towards me, sought my eyes (this time unmistakably addressing me) and drawled, "Hungry." Fireworks went off in my head! And most enthusiastically, I gave him the yogurt biscuits in my bag.

Later, I wondered: Is it such a big deal - to be able to say these two words? I told my mom about "hungry" and immediately she exclaimed, "Wah, first time!"

Yup, definitely a cause for celebration.

Orange

Calder likes to eat many fruits. Orange is one of them, so I figured I should teach him how to peel one. I sliced the orange skin with a ring peeler, and passed the orange to him together with a plate. So he peeled the orange and left the skin on the plate as he ate them slice by slice. Then I thought I should teach him how to slice the orange. So I passed him the ring slicer and taught him to glide three circles around the orange. Then I thought I should let him take the plate and the slicer himself. Now I just have to pass him an orange and sit down to watch him:

1. Wash orange.
2. Take plate.
3. Take slicer.
4. Remove any sticker from orange.
5. Slice 3 circles around the orange.
6. Peel off the orange skin.
7. Detach the slices and eats them one by one.
8. Pour away the orange skin.
9. Wash the plate.
10. Put the plate back on the rack.
11. Rinse the ring peeler.
12. Put the ring peeler back on the hook.

Next time, I'll ask him to take an orange from the fridge himself.

And maybe the next next time, I won't be in the kitchen when he eats his orange.

Letting go a step at a time.

Explain

Calder ate yogurt and an organic apple (skin on), and left the kitchen. I didn't see him in the living room nor bedroom and was wondering where he'd gone when I spotted him loitering in the bedroom toilet.

Me: What are you doing, Calder?
Calder: Flossing. Food stuck in the teeth.

Wow.

What a breakthrough - the initiative, and the understanding of the function of flossing.

Hitherto he had only flossed at bedtime. To think that he can break a routine to achieve a purpose - the potential is exhilarating.

These few days, I had been consciously verbalising reasons behind things we do, thanks to an article on improving the problem-solving skills of autistic children. So the night before, when Calder was flossing at bedtime, I explained why he had to visit every gap - to dislodge all the food in between the teeth.

I feel like a tape recorder sometimes, going on with such running commentaries, especially since Calder doesn't reply.

But looks like it's worth the effort.

Weekly Schedule Board

Calder was on the way from the kitchen toilet to the living room when he stopped in his tracks. And looked with great interest at the kitchen wall. He had spotted the weekly schedule board that I just revived. As Calder became more flexible with age, I had stopped signalling on the schedule board his programs for the week. As a result,  he depended on what I told him to know what to expect for the day itself. (And sometimes we forget to inform him of changes in routine, which no doubt contributed to his irritability on those days.)  His apparent pleasure reading the revived board, however, revealed just how much predictability in the form of advance notice gives him comfort and security. I would start teaching again in September, and figured he would want to know when Mommy wouldn't be home when he comes back from school. Oh, how precious the gleeful glint in his eyes over the revived schedule board. Looks like I've done the good right thing there.

Art of communication

"How is Calder these few days?"
A question like this is not difficult to answer, unless Calder is around during the answering. It's the same reason why I don't bring him with me for autism talks anymore. Because unless it's all good news, talking about him would bring up memories of misbehaviour frowned upon. Reminding him of past misbehaviour, beside likely making him sad, is sore temptation to make him repeat that behaviour. Because he gets fixated on whatever is foremost on his mind. That's why if I don't want him to point at people's eyes, it's much more effective to distract him with another activity than to warn him "don't point" or "don't keep laughing" or "no spitting". Recently a fellow parent sent me an article about giving statements as prompts instead of issuing instructions. The writer reasoned that statements give more room for choice and initiative. So this morning, when Calder's school bus had arrived but he's still seated (frozen) at the void deck, it's all I could do not to push him forward. And instead of ordering him "go", I said, "The bus is here." Communicating with Calder (and in his presence) has become a high art indeed.

This or That

Was at Bartley Christian Church last Saturday for a Special Needs parent panel discussion. Had a book table set up and I was wondering why more people were buying "Come into My World" than the more recent "MY WAY". Then I remembered that in sharing about my frustrations over Calder's meltdown when he was young, I'd mentioned the title of my story in the earlier book -

"My Mommy is a Bully".

At book tables, people often ask me the  difference between my two autism books. Let me attempt to list the suitable readers for the two titles...

"Come into My World: 31 Stories of Autism in Singapore"

Suitable for:
1. Families with newly diagnosed autistic children.
2. Parents wondering how to cope with their child's autism.
3. Parents feeling lonely or isolated for having an autistic child.
4. Parents who are in denial regarding their child's autistic traits.
5. Caregivers wishing to learn from other families how they can help the autistic child.
6. Teachers wanting to understand the family situations of autistic children.
7. Extended family members who can be more accepting of the autistic child.
8. People who wish to understand the needs of families with autistic children so they can help them better.
9.The general public who needs to understand autism better so that autistic children can come out of the house without their parents being judged or derided.
10. People curious about how autism affects lives in Singapore.

"MY WAY: 31 Stories of Independent Autism"

Suitable for:
1. Autistic persons who feel out of place in our society.
2. Parents who often wonder what their autistic child is thinking.
3. Parents who needs hope that their autistic child can improve.
4. Parents wondering if their autistic child would ever find employment or get married.
5. Employers who need to see the strengths of autistic people so that there'd be more job options.
6. Teachers wishing to know how to help autistic students reach their fullest potential.
7. Peers who wish to befriend an autistic person.
8. Bullies who need to enter the mind of an autistic person so they understand enough not to make life difficult for the socially awkward.
9. The general public who needs to stop expecting autistic persons to behave exactly like a neurotypical.
10. People curious about how autism affects lives in 15 different countries.

Gong

Was one of two panelists for a parent sharing on special needs organised by the  Scripture Union today. The audience, about 50, comprised mainly Sunday School teachers from various churches. Meaningful questions were asked, including:

"How can Sunday Schools welcome children with autism?"

My take:

1. Establish open communication with the caregivers. Because it's often the case that the child cannot report to the parents, Sunday School teachers can keep the parents informed of what was covered during that day's lesson, so that the parent can support by reinforcing the lessons. In communicating with the parents, it is good to highlight the child's strength and what the child did well that day. These snippets are precious encouragement to often flagging parents.

2. Find an area to let the child serve in church. It can be as simple as stacking chairs. Being able to help makes the child feel useful, and proud of how he or she can contribute.

3. Do not focus merely on teacher-child relationship. For the church to become truly inclusive, we need to consider how we can help the peers understand and love the child. A good way is to set up a rotational buddy system for different classmates to guide and help the child. This way, peers get an opportunity to know the child at a deeper level.

4. Consider setting aside a quiet corner for the autistic child to calm down during a meltdown. The ideal setting is quiet and not too bright. If  a separate room is not possible, a partitioned corner with a bean bag can be helpful.

5. Pray for love. Because even with the best guidelines or procedures, it's there's no love, we're just an empty gong. So pray for love, and then wisdom to help the child.

Good morning

Ethel asked me why I always speak to Calder in high-pitch voice, and talk to her in low pitch. Perhaps because Calder will always be the baby in the house, because of his simple ways. I noticed how differently I woke them this morning...

To Ethel (5.15am): 5.15, Mei.

To Calder (6.30am): Good morning, Calder! You had a good sleep last night? What must Calder do now?

Latch

These days, when Calder turns off the fan, he would watch until it stops spinning. The other day, I caught him eyeing a swinging door latch. Then his right hand shot out to slap it into place. And the latch stopped moving. And he could finally get ready for bed.

Books for Mei

During June, Ethel had to return to school for supplementary lessons (Primary 6). Ambitious to bring back all her school books at one go, she packed them into two bags. As expected, she forgot to take one. I saw that the bag contained books she would need for the day's lessons, so decided to bring them to her. Calder and I took two buses to reach Ethel's school. At the gate, I told the security guard my intention to pass Ethel her books. He looked at Calder and I figured he's wondering why a simple errand needed two persons. "He's autistic, so I cannot leave him at the gate," I explained. The guard must have understood, because immediately he nodded his head and earnestly waved us in. Stepping onto familiar ground (Calder had been to his sister's school a few times), Calder was so excited he broke into a run along the sheltered linkway and disappeared into the building. Would I be able to find him, I wondered. When I entered the school, I saw a teacher and another security guard with Calder. It's apparent that they had tried questioning Calder to no avail. I explained why he couldn't answer their questions, and passed the teacher Ethel's books. Before we left, I prompted Calder to "bye bye, teacher". The teacher raised her hand to wave goodbye and received in return Calder's mighty slap. She exclaimed, "Wow, that's the best high-5 I've ever received!" 

Tissue

When Calder came home from school, I saw he was holding something in his hand.
Me: What are you holding?
Calder: Tissue.
Me: Who gave you the tissue?
Calder: Mr Thomas (his teacher).
Me: Why did Mr Thomas give you tissue?
Calder: Because I cried.
Me: Why did you cry?
Calder: Because he is so sad (he got the pronouns mixed-up).
Me: Why was Calder sad?
Calder: Because I kick my leg. I shouted. I screamed.
Me: Did you throw tantrum?
Calder: Yes.
Me: Why were you upset?
Calder: (silent)
Me: What was the problem?
Calder: No.
Me: Did you go for outing today?
Calder: Yes.
Me: Were you upset because it was too hot, or too noisy? Or were you hungry, or did somebody scold you?
Calder: It was too hot.

But when I checked with his teachers, I was told there was no tantrum - in fact he was very cooperative at the outing to the eco-garden at Tampines Hub. So I tried to clarify...

Me: Who gave you the tissue? Is it the bus driver or Teacher Thomas or bus aunty?
Calder: Bus aunty.

Problem with this form of clarification is you don't know if the multiple choices include the right answer.

So had Calder thrown a tantrum or did he spin a tale to satisfy questions?

- Another mystery of our life.

Runninghour 2019

Signed Calder up for Runninghour 2019. Since the meeting point was Safra Punggol, I decided to cycle there (35 min), walk the 5km (1 hr) before cycling back again. (When I told Calder we would be cycling to Waterway, he started galloping around jubilantly which was wonderful to see. )

Was pondering if I should dress Calder in a different colour in order not to lose him in the crowd. Decided to let him wear a luminous cap instead. I also placed a handphone in an elastic waist pouch for Calder to wear, in order to track him should he get lost. We were each given a blue lanyard which would enable us to claim the medal at the end of the race. Instead of putting the lanyard around the neck, I figured it would make a convenient leash and so tied it around Calder's waist pouch.

The meeting place was noisy with loud music accompanying warm-up exercises. Since we were going to just walk this year, I brought Calder to a quieter, less crowded area for some photo-taking. Thank God he no longer presents awkward grimaces before the camera.

Flag-off and we walked with the crowd. Weather was perfect, all was well until some aeroplanes started flying really loudly over our heads (NDP rehearsal, probably). I thought Calder would cover his ears. Instead, he bit down on his index finger. Not a good sign, so I got ready to hold him by the lanyard. Sure enough, he began to prance with big steps and looked like his movements would turn wild. So I suggested eating the yogurt biscuits in his waist pouch. We sat down to do so and continued walking after that. Calder started shaking the half-emptied mineral water. Should I stop him, because if he drinks from the bubbled water, he might get tummy ache? I decided that the bottle could be a stress reliever and let him shake it. But he dropped it twice and looked none the happier about that so I threw it into a garbage bin. Meanwhile, there were marshals reminding everyone to keep to the left, because the cyclists would be using the right side. But Calder kept veering to the right where it's more spacious.

Finally we reached the finishing line. There were cans of 100 plus to drink which pacified Calder. We got on our bicycles and escaped the crowd in just one minute. The weather remained perfect and we had a wonderful ride back which surely removed any remaining grouse.

If you ask me, I think Runninghour 2019 was a perfect outing for us, where Calder was tested on his self-control and won.

Washing machine

In the bedroom, I read a library book with Calder. (What this means is that we took turns to read a sentence each.) After that, I asked Calder to help me check how much time the washing machine had left before the laundry was ready. He went into the kitchen, stood before the washing machine and made some sounds that I figured must be the timing. Then he came back into the bedroom, but did not report to me. I asked him, "So how much time is left for the  washing machine?" He went back into the kitchen and did the same thing again. Wishing to know if we could start hanging the laundry together, I persisted, "How much time left?" He was going to return to the kitchen a third time! I realised that Calder did not know I couldn't hear him from the bedroom. Are we talking about theory of mind here - he couldn't grasp that my perspective and experience is different from his?

Runninghour shirt

I like the design of Runninghour shirts so much that it's become some sort of collectible. It's one reason why I want to take part in the run every year (beside the heartwarming provision of free registration for special needs persons and their caregiver). I always pack them for family vacations because the vibrant colours shirts make for good photography. And when I'm bringing Calder to somewhere crowded and wish to be able to spot him easily (in case he walks too quickly for me to catch up), I would dress him in a bright shirt like Runninghour's.

Jungle

The other day, I brought Calder with me to buy fried rice for dinner. When the girl at the store was taking my orders, I noticed from the corner of my eyes the chef asking Calder what he wanted to order (not knowing Calder's with me). Calder must have ignored him, because what I heard next was the chef muttering "cannot talk". It occurred to me that many autistic children are like Calder, only able to "communicate" with family members and close friends. Outsiders do not understand their utterances nor their ways. So letting  Calder out of the house on his own   is like releasing a pet into the jungle. That is, unless more people understand what autism entails and are patient and kind enough to find out the autistic person's needs or preferences without relying solely on spoken language.

Snip

Calder was on a fastidious streak, pushing in all the drawers, aligning clothes pegs, asking for shirt tags and loose threads to be cut off, even waiting for fans to stop spinning before moving on. The other day, he was keeping the laundry when I saw him bring a pair of shorts into the kitchen. "Where are you going, Calder?" He reached for the kitchen scissors. "Oh, you are cutting off loose thread?" I was impressed that he could do it himself instead of asking for my help. He kept snipping which made me curious, so I stepped into the kitchen. And saw what he cut off - the drawstrings from Daddy's jogging shorts.

Cake

Calder came home and saw, hanging in the kitchen (away from the ants) the $1 square cakes (anniversary promotion) I bought from Breadtalk. In the afternoon, after he had his fruit (in this case, an apple), he went into the room to play wordsearch on handphone. I saw that he hadn't turned on the fan and so sauntered into the room to remind him. Immediately he hopped up from the bed. With great expectancy in his eyes, he ventured,

"Anything you need?"

That confused me for a moment; he'd never asked me such questions before. Then I realised he wanted me to pose him the question. So I did.

Me: Anything you need?

Calder: Mommy, I want cake please.

Ah... the cakes in the kitchen.

Family devotion

Every Sunday, the four of us would sit together for dinner and have family devotion as we eat. Taking turns, we share about one thing we're thankful for and one need. Each Sunday, one of us would also share something learned from sermons or from the Bible. Family devotion ends with another person praying over the mentioned needs.

Last Sunday, it was my turn for Bible sharing and I decided to recite with Calder Isaiah 40: 28-31, which is a passage we memorised and on which our pastor focussed for that morning's sermon. Then I shared why I like the passage - it is very conversational, it relates to our lives - a great way to introduce friends to our good  God -

Isaiah 40:28‭-‬31 NIV:
Do you not know?
Have you not heard?
The Lord is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom. 
He gives strength to the weary and increases the power of the weak. 
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.

If you're wondering how Calder, with his little speech, participates in our family devotion, we ask him to read out (which he does very loudly) the relevant Bible verses during Bible sharing. For thanksgiving, we prompt him with the starter "Thank God for ___". Maybe he got this confused with meal grace, because he always chooses food he just enjoyed (which is fine with us, since Calder really likes to eat). Last Sunday, he said: "Thank God for apple cider vinegar".  As for prayer needs, his is a standard: "God, help me to stay well and healthy, and not keep laughing."

Partea

The Huawei Partea giveaway has finally ended, and I tried three flavours of their tea:

1. Rose Pu'er Fruit Tea
2. Mango Green Tea with cream and white pearls (my favourite)
3. Sijichun Fruit Tea with coconut jelly 

When Ethel got to know about the giveaway, she was so keen we decided to collect the last cup yesterday:

4. Gaoshan Oolong Fruit Tea with aloe vera

Alas the queue was so long at Waterway Point it took more than an hour before we could place our order. Meanwhile, Ethel decided to sit on the floor to do her PSLE assessment book while Calder parked himself beside the lift. Order placed but there were many customers before our turn to collect the tea, so I brought the kids for lunch first. The kids were barely seated when Ethel came to me (I was at the counter viewing the menu) and succinctly communicated: "Pack and go, Mommy." It seemed Calder had knocked his elbow against the table and emitted a very loud "gok gok", in such an upset tone as to signal evacuation. I was not surprised - it had been a long wait in a noisy place and he's probably hungry as well. So I packed chicken pies for the kids and let them eat the pies (better feed the hungry bear asap) while I went to collect our tea. The next thing I knew, Calder had spilled his chicken filling on the floor (at home, I let him eat pies with a plate underneath his chin - no such facility eating on the go). While I was making sure there's no more spillage, Ethel did something that warmed my heart.

Ethel: Mommy, do you have a tissue for me to pick up the chicken on the floor?

My dear, thank you for joining me to care for and clean up after Calder whom we love.

Titanic

I wonder where he learned it from, but these days, Calder would sometimes stretch out both arms (think Titanic) when walking. Last Tuesday, he did just that when he was walking across the platform of Kovan mrt. The platform happened to be empty except for a Secondary school girl. I think what she saw was this tall youth with arms strangely outstretched swooping down towards her (he must have been curious and wanted a closer look at something she had). And she cowered in bewilderment. So Calder swooped towards her and veered off as he walked on. I was rather far behind (because Calder walks much faster than me) but near enough to witness this amusing scenario. Ethel told me, when I related the incident, that I should have explained that Calder is autistic. That's true. The girl must have thought she met a weirdo.

Floss

Do you floss? This question was asked me when I visited a friend for a painful tooth two years ago. Honestly, I replied "nope". Even though the dentist friend did not express any surprise or chide me, I was embarrassed enough to decide to give flossing a serious try.

Previously, I had tried flossing before but readily gave up when the string got stuck between my teeth and then, when the stick version scraped my gum. This time round, I persevered learning to wield the string around my fingers to get the best taut line to insert between the teeth. I succeeded and realized flossing is just using a thread to get at stuck food - there's nothing scary about it. In fact, I could no longer ensure a day without flossing. And guess what? This new habit reduced my dental problems so significantly that I decided to teach my kids to floss too, especially Calder, whose unexplainable angst can stem from hidden discomfort like a toothache. Ethel learned fast and I proceeded to start on Calder.

Attempt 1 - At bedtime, after his brushing, I flossed his teeth using the string.

Attempt 2 - Figuring he would have a problem manoeuvring the string (he can't tie shoelaces), I flossed his teeth with the stick version.

Attempt 3 - I passed him the stick, wondering if he had enough purposefulness and tenacity to push the string right through. To my amusement, he went at it with great aplomb and instinctively adopted a method that I found ingenious - instead of pushing with his hand, he used his upper teeth to bite down on the stick and thus effectively drove the string down in between his teeth. And he understood without instruction that the string had to visit every gap between his teeth.

Attempts 4 to 6 - I reminded him to floss his teeth after brushing and he proceeded to do so for his lower teeth. I did not ask him to do the upper because they were spacious enough not to get food stuck in the gaps. I was amused that not only did he push the sting all the way down, he knew to wriggle it between the teeth. Perhaps he had watched the flossing procedure on TV before?

Attempts 7 & 8 - I decided to do it proper and now expect him to floss both lower and upper teeth.

Attempt 9 - He had no problem flossing except that he had yet to develop a clear system and would visit the same gap over again until I signal a stop to the activity.

Attempt 10 - Without prompting, he reached for the floss right after brushing his teeth.

And so in 10 tries, Calder has caught on this necessary habit that would save him from much dental agony.

Praise the Lord!

Moving off

The other day, I saw Calder walking backwards. He was looking at the bus we just alighted from.  I understood that he wouldn't want to leave until he'd seen the bus do the usual thing - which was to move off. It's the same reason why he wouldn't want to get on an MRT train until the opposite train that had arrived earlier had made its exit. In this case, Calder walked backwards to keep the bus in view. Then I heard him say something unusual: "Don't worry." (And the bus finally moved off.)

Hi-5

On the way to bowling training, Calder was walking ahead of me as usual. When I caught up with him, I saw that an old lady had stopped in her tracks.

"Did he bump into you?" I asked her.

"Yes! And he didn't even look at me. He just went to press the lift button after that!" The old aunty complained in Hokkien.

"Calder, say sorry!"

"Sorry."

Aunty was still looking very indignant, so I explained, "I'm sorry; he has zi-bi-zheng (autism)."

To my relief, aunty understood immediately, "Oh sorry sorry, I didn't know" and she started giving him flying kisses.

What a cute aunty. "It's ok," I put my left arm around her.

She smiled and elaborated, "I'm 90+; I cannot fall down."

When we were about to part ways, she cheerfully put up her hand and wave goodbye to Calder.

To Calder, a raised hand is an invitation to a hi-5 which he would put all his might into, so I quickly stopped him before he could advance towards her to give her that formidable smack that no doubt would topple her.

And so we averted a tragedy that really seems a comedy (heart-warming one too) in retrospect. 😉

Mommy Day

Memorable conversation yesterday.

Hubby: What day is it today?
Calder: Sunday.
Hubby: Is it Mother's Day or Father's Day?
Calder: Father's Day... (silence means wrong - try again) Mother's Day.
Hubby: Yes, it's Mother's Day. Who is your mother?
Calder: God (?! )
Hubby: Where is your mother?
Calder: In China (?!)
Hubby: What is your mother's name?
Calder: Calder.
Me: "Mother" is the same as "Mommy". What is your Mommy's name?
Calder: Brenda!
Me: Where is your Mommy?
Calder: (points to me)
Hubby: So today is Mommy Day.
😅

Pick him up

On the train with Calder and a baby started fussing in his pram. What started as whinings became shrieks as both parents watched and then tried to distract him. And all the while I was repeating in my head, "pick him up, pick him up, pick him up..." because I didn't know how long Calder could take the baby's sharp crying. (Sounds of distress or anger agitates Calder.) Finally, the Dad reached to pick up his baby. And the baby instanteously stopped crying. And all was well again.

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.

How many

Whenever I asked Calder for a number, he would start counting. How many paos did you eat? He would say "one two". How many chips do you want? "One two three." I've had to ask him to repeat after me: "I ate two paos."
Yesterday, there was a breakthrough.
"How many cherry tomatoes do you want to bring to school?" I asked as I prepared to wash them at the sink.
Calder replied, "Five."

Thank you

This morning, a young girl in primary school uniform kept the lift open for us as her Mom and other adults stepped out. I said "thank you!" Then I heard her say "thank you!" I turned back and realised she was speaking to Calder, who upon exiting had gone to the outside lift button, keeping it pressed for her to exit "safely". A beautiful scenario to start the day!

Tell Mei Mei

Before bedtime, I got Calder to hang the laundry. When he had finished, he went as usual to the washing machine to check that he had not missed out any clothes. Upon leaving the kitchen, he turned off all its lights, not realising that Ethel was brushing her teeth in the kitchen toilet.
Ethel: Calder!
Calder quietly turned the lights back on. When I met him in the Iiving room, I decided that he needed to learn to apologise in situations like this.
Me: Calder, tell Mei Mei "sorry".
Obediently, Calder turned back to find his sister.

And he said to her:
Tell Mei Mei sorry.

Prefer

Teaching Calder to use the word "prefer" and wondering how much he understands.

Me: Calder, do you prefer apple or orange?
Calder: Apple.
Me: Do you prefer orange or grapes?
Calder: Grapes.
Me: Do you prefer Mei Mei (Ethel, who was sitting beside us, supposedly doing homework but really listening with a spark in her eyes) or Mommy?
Calder: Mei Mei.
Me: Do you prefer Mommy or Daddy?
Calder: Daddy.
Me: How is Mommy feeling?
Calder: Happy!

Baby Shark

The Baby Shark song has such a happy tune that I adapted it into a love song for Calder -

Mommy love you doo-doo-doo-doo-doo X3,
Mommy love

Busy teaching at the Singapore Institute of Technology, I hadn't sung this song to Calder for a while. Yesterday, he was wandering around the house while I was engrossed in an autism post (listing places I'd shared about autism). The next thing I knew, he had sauntered out of a room singing our sharky-love song and meeting my eyes in a radiant grin.

Life is beautiful.

Ostrich

Calder knows he mustn't laugh loudly and continuously because it disturbs other people, especially in a quiet place. But the laughing fits still come. Recently, I saw that he would put his hands over his ears when he starts laughing. And press harder when the laughing gets louder.

Excuse Me

Calder is speaking more these days, using words we have taught him. Yesterday evening, he came to me as usual, waiting for instruction what to do next. Since he had already practised piano and watched TV and played on his tablet, I suggested that he go look out the window (he likes to see traffic). There was a clothes rack in front of the big window in our living room. As Calder manoeuvred his way around the clothes rack, he actually said, "Excuse me, hanger."