Tuesday, May 31, 2022

Gantry

At the MRT gantry today, Calder was too fast to tap his card. The lady before him was stalled because there was something wrong with hers. But Calder didn't notice and tapped his card. The gantry gate opened. The lady was still examining her card. Guess what Calder did? In that narrow space, he managed to circumvent her and crossed the gantry, his bowling trolley in tow. I was at the adjacent gantry and heard the lady exclaimed "Damn rude!" 

What would you do if you're me?

As I was crossing the gantry, I explained to the lady: "Sorry, he has autism - he doesn't understand." She didn't look at me. I stopped Calder from striding off as is his habit, and tried apologizing again. This time, she waved me off (still not looking at me). 

When she had left, I highlighted to Calder not to tap his card so fast in future. 

As I recalled this incident, I wondered if I could have done anything differently. 

Should I have asked Calder to apologize to her?

Is it right to expect Calder to apologize before explaining to him what he did wrongly?

If I have to explain to Calder before getting him to apologize, wouldn't the wait be too embarrassing for the lady? 

What I do know is that whoever does the apologizing, it must come across as sincere. The lady was not wrong to be upset at Calder's behavior. She wouldn't know that Calder has special needs. Even if the special needs is apparent, it is not fair to expect everyone to be able to control their irritation enough to respond graciously on the spot. 

How do caregivers respond in such situations? We speak for our children. But humbly, not indignantly. We must never take the standpoint that it's us against them. The public is not our enemy but our potential best friends. Because we want our children to be accepted and loved, not merely tolerated. 

Saturday, April 9, 2022

Covid

Finally it's our turn to contract Covid. Hubby was the first. Seldom ill, he found himself down with flu but tested negative initially. 2 days later, Calder who had started blowing his nose, joined him in the isolation room. But keeping Calder hydrated meant he frequently needed to use the toilet and so he made many trips out of the room. He would also slip out to do his usual housekeeping like putting things back in place. He wanted to fill our water bottles too but was caught a few times. Soon it was clear that he's better in a room by himself because he was coughing all over Daddy. 

This time, Mommy was the primary person to keep an eye on him should he peep or slip out of the room. "Calder, you have a toilet in your room - you shouldn't need to come out anymore." "Calder, sick sick cannot come out - go and hide." Handphone games couldn't engage him for long and so he listened to music or just lie in bed. 

Not surprisingly, I started developing headache and a running nose. Ethel had been joking that if everyone else got Covid, she would have to be the isolated one. But she joined me to test positive 3 days after Calder. Now that the whole family was in the circus, Calder could finally step out of his room. What joy! Now Mommy could engage him in usual activities like piano practice and workouts. He could also hang the laundry and cut vegetables for dinner. 

I had stocked up the fridge when Daddy tested positive and enjoyed the satisfaction of seeing it deplete now that we couldn't leave the house. When we were left with ingredients for maybe two more meals, food arrived. On Friday morning, my sister hung a heavy bag of mee chiang kueh and prawn noodles at my door - settling our breakfast and lunch. Later in the day, a church friend left a big box of home cooked pork belly (braised with eggs, tau gua, tau pok, potatoes - cooked by her Mom-in-law) outside my door, and that settled dinner. In these ways, meals "magically" appeared on a day I was too busy to cook (I had Bible Study Fellowship leaders' online meeting in the morning and SIT Zoom teaching in the afternoon). Twice, the church friend had also sent a grocery bag of fruit, yogurt, Vitamin C etc. Truly God provides! 

During this period, I'm thankful for the rest from not needing to wake the children early for school. Thankful especially that Calder had been cheerful despite the changes in routine. Thankful also for a friend telling me about the option of going to a Covid test center - I brought both kids to the one at Hougang Central and there's no waiting involved at all. 

Now hubby is out and about and I have 3 more days of isolation. The sore throat is still there but I'm going to count my blessings and enjoy the comfort of family within the confines of my cosy home.

Saturday, March 26, 2022

Follow

I signed up for a workshop at Calder's school and decided to try a different bus route that uses a park lane instead of main road. When Calder and I arrived at the bus stop, I took out my phone to use the map. I was tilting my phone this way and that to get the right orientation. Then I got an idea. I asked, "Calder, do you know how to get to St Andrew's School?" He looked at me and lifted his finger. "Do we turn left or right?" I checked. His finger pointed left. I got up. "Take me to your school, Calder." I followed him down the park lane. Then he stopped, waited while I caught up, and turned into a small road. In less than 10 min, he'd led me to destination. (I realised it's most likely the route his class took when they went for outings by public bus.) As someone with an awful sense of direction, I'm beginning to think maybe I won't get lost again if I ask Calder to lead the way. 

Wednesday, March 23, 2022

Not Sympathy

Joined a panel of speakers for a disability discussion (online) hosted by Changi Airport Group yesterday (22 Mar). Towards the end, all speakers were invited to give a last word.

I decided: 

We do not want sympathy. Empathy, yes, in that you put yourself in the shoes of our children and understand their challenges. What we really want is for people to believe in our children, to see that they can do it, they can make it. To give them a chance. Most of all, to put in time and energy to help them achieve their potential. This kind of help would be most gratifying not only for caregivers but also for the person with special needs. 

Saturday, February 12, 2022

Kuih Bahulu

I was buying kuih bahulu from a Malay stall at the interchange when the stall keeper asked me if Calder can talk. How did she know he has special needs? He wasn't bouncing around. Then it occurred to me: No mother would speak to a typical teenage boy the way I talked to Calder. Our bus had arrived and I had wrapped my hand around his upper arm and was gently assuring him, "Calder, it's ok. We are not in a hurry. We can take the next bus." Indeed sometimes persons with special needs stand out not because of their demeanor or behavior but because of the tenderness their caregivers display. 

Saturday, October 2, 2021

Wall Fan

We have a wall fan in the living room. When we set out floor mats for workouts, we often asked Calder to rotate the fan towards those mats. But he didn't know how to control the remote control to point the fan in the right direction. So we prompted him. One day, I realised that he didn't need our prompting anymore - he knew when to press the button to stop the fan's rotation. Today, when I asked him to turn on the wall fan, he proceeded not only to turn on the fan but to rotate it slightly to the left (using the remote control) to blow at where we were seated. Wow.

Thank God for little breakthroughs! 

Saturday, September 18, 2021

My Rose

Shared about autism (via Zoom) to 38 NUS Year 4 Psychology students yesterday, and received a question that made me think.

Q: In this challenging journey, what has enabled you to appreciate your child for who he is? 

My response: 

Yes, it had occurred to me how much easier life would be without such challenges. But something happened 4 years ago that made me realize how precious Calder is to me. That day, he boarded a bus that took him to Changi Airport and we couldn't find him for two hours. In between searching the vicinity and returning to check if he had made his way home, I was kneeling on the living room floor and crying out to God to send him back to me safely. I knew without a doubt that I never want to lose this child, autism or not. 

Subsequent thoughts:

When does love start and end? Do I say - I can appreciate Calder now that he has mellowed so much, to be able to help me cut vegetables and hang the laundry and go out together without risk of meltdowns? Do we love a person only if he is good, or show promise of improvement? Do I appreciate Calder because he is trusting, and pure and simple? 

No, I have started loving Calder when I started caring for his needs and wanting the best for him. It's because of the time and the efforts, the sweat and the tears, that I love him. 

The Little Prince says it well:

"But my rose, all on her own, is more important than all of you together, since she's the one I've watered. Since she's the one I put under glass, since she's the one I sheltered behind the screen. Since she's the one for whom I killed the caterpillars (except the two or three butterflies). Since she's the one I listened to when she complained, or when she boasted, or even sometimes when she said nothing at all. Since she's my rose."