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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. 

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. 

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. 

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! 

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."

Passed Away

Calder was typing his old journal into the computer. Once again, there was a mention of him making hamster bedding. Wondering if he understood the concept of death, I asked him, "Calder, where is the hamster?" He turned and pointed to where the hamster cage used to be. "But the hamster is not there," I contended. He looked at me with enquiry in his eyes. I explained, "The hamster died." "The hamster died," he repeated. Then I asked him, "Where is mama (his paternal granny)?" He replied, "Mama is passed away". 

"Passed  away" was the term I guided him to use when he wrote his journal on the day of Mama's cremation. I'm amazed he remembered. And it occured to me perhaps his sense of reality (or memory) is made of what he wrote in his journal.

Music

It used to be our routine to put on a nice music CD and Calder would then cheerfully cut up kitchen towels to make hamster bedding. But Ethel's hamster passed away and I wondered what could fill this activity gap. Little did I realise that Calder is just as happy to sit on the sofa, swaying as he listens to the CD. In this multi-tasking world, how many of us do that - just enjoy the music as it is (not as background to other tasks)?