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)?

Toothache

One day, Calder pointed at his cheek and told me "painful". "Oh, is it toothache?" I asked. "Toothache," he repeated. I shone a torchlight into his mouth but couldn't see anything amiss. Hubby suggested wisdom tooth eruption, to wait for it to grow out. When Calder complained of pain again, I bought Medijel to apply on his gum. Then I decided to bring him to the School Dental Centre. I made the appointment via Healthhub app and indicated in the comment section that Calder is autistic and cannot express himself well. 

The day of appointment arrived yesterday. The dentist had obviously read my comments, because immediately he directed the questions at me. Then he told Calder he's going to lower the dentist chair. He took a look and revealed it's not a case of wisdom tooth but gums inflamed from trapped food. He proceeded to clean Calder's teeth. 

He meticulously explained to Calder the equipment that spurts water and the straw that's going to suck out the water. When the noisy straw started operating, Calder clamped his mouth shut. The dentist gently plied his lips open and coaxed him to open his mouth a bit more. "Very good, Calder... Yes good..." The dentist kept up a litany of encouragement. A few times, Calder's hand was ready to go up to his mouth (probably to push the equipment away). Instead of a vice grip, the dental assistant repeatedly returned it to his lap. I started stroking that hand as I prayed for Calder to cooperate. I could see that Calder's body was all tensed up - it must have been a frightening experience, but he kept his mouth open. 

At the end, the dentist assured me that he had done a thorough cleaning, to make sure Calder brushes his gums when he brushes his teeth. "Finish! Very good, Calder!" Calder hopped off from the dentist chair with a grin and I got him to say "thank you" to Doctor Nicholas.

A friend had offered to send us to the dentist, so we returned in his car. Later in the afternoon, Calder was putting out the exercise mat when he nearly tripped (he accidentally stepped on the mat as he tried moving it). And he exploded. The tripping did not justify the level of agitation, so I figured he's releasing the stress he experienced at the dentist. I brought him to the bedroom and sang him a few of his favourite songs on the guitar, before we proceeded with our daily workout. Then I got him to write journal for the day. When I looked back, I'm thankful for:

1. The dentist who was sensitive to Calder's fears, yet firm enough not to give up on the treatment.

2. The friend who insisted on driving us to the dentist, who waited at the car park for an hour to drive us back. (This friend is a retiree and I feel he's doing what he would for a grandson - what a blessing to have him in our life.)

3. Calder for his courageous trust in us as he remained seated on the dentist chair.

4. God for answering my prayers for a successful dental visit, for keeping Calder calm until we're safely home. 

Quoting the verses inscribed on my sister's wall:

I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord , the Maker of heaven and earth. Psalms 121:1‭-‬2 

Respite

Calder was moody this morning. I knew because of the low humming  he made followed by murmurings of "is missing is missing". At breakfast he was moaning as he ate. And I wondered if he could make it for school today. If not, the free morning I was anticipating would be gone. Instead of a quiet time studying the Bible (via Bible Study Fellowship materials), I would have to attend to him - stay with him while keeping him calmly occupied, hoping no one would make any loud sound to set him off. And yes, I prayed. When your child is troubled and cannot tell you why, what else can you do but pray? In my heart, I prayed and wondered - 7 min more to arrival of school bus. Is there enough time for me to take out the guitar to sing him our favorite songs? How about playing his favourite music on my handphone? So I click the link to last Sunday's online service. Songs that Calder played on the piano flowed together with our singing (our family was in charge of worship last Sunday). He didn't revert to school-boy glee as would often happen when I take out the guitar, but he was calm enough to put on his socks and shoes to go downstairs to wait for the school bus. In the lift, we prayed our usual benediction "The Lord bless you and keep you..." At the void deck, he fixed word puzzles of bible verses on my handphone. And the bus arrived. Calder has left for school - I've been granted respite. I'm thinking: How precious every day of peace and well-being is, especially for families with autistic children. I wouldn't know when Calder, now 16, is going to be the cheerful little boy or the upset and unstable teenager. If the latter, I would have to put down all work and plans and rest to soothe him. So I need to cherish every day of peace. Consciously appreciate it and live the day fruitfully, thankfully. 

Guitar

I found a way to calm Calder when he gets upset - join him in a quiet room, take out the guitar, and start singing worship songs with all my heart. I used to think it's a diversion tactic. Today he didn't calm down as quickly and it occurred to me that perhaps he needed the music to convey his sorrows. So I continued singing as he continued crying. 

Dear Lord, I have no idea why Calder is upset. Is it because he's tired, or he's hungry? Did something happen in school to make him sad?You know best. And so please help us deal with the problems that Calder is facing. Please comfort and protect Calder as only you know how and you can. Thank you, Jesus.

Clip Clip

Two years ago, I passed Calder the nail clippers. My heart in my mouth, I watched him clip from the mid-point of the nail, clip diagonally instead of across, tear off the remaining piece of nail, push the sharp clipper dangerously close to skin etc. Sometimes I conscientiously followed up with the training, often I just took over because it seemed much easier. One day, he finally got it - the depth and the angle. Now I can pass him the nail clippers and watch at a distance - 3 perfect snips and off the nail flies. 

Melting Down

The word “meltdown” makes me think of vanilla ice-cream turning into milk shake. It does not at all convey the havoc, chaos and panic that ensue when a child loses control. Who started using this word to describe autistic children, I wonder. My 9-year-old autistic son had a meltdown today and there was nothing ice-creamy about it.

It was the school holidays and I had brought both my kids to the airport to play. Calder liked going to the airport because of the long bus rides and the cool air-conditioning at the airport. Hence I did not anticipate the meltdown, which took place on our way home.

I felt the unraveling when we were heading for the bus interchange. Calder started pressing and twisting my arm with both of his hands. And when we got up the bus, he slapped his bus card at people. When we sat down, he threw his bag behind him. The passengers behind were kind enough to return the bag without complaint. Then Calder started swiping his hand at me, scratching me and it was all I could do to grab hold of both his arms before they could do further damage.

Meanwhile, my 6-year-old girl, Ethel, came up to me to ask if she could play on my iPhone.

“No, mei mei, go back to your seat. I may need the handphone to call your Dad for help,” I hissed. 

Then she came up again and asked if I could give her her yellow booklet for drawing.

“I cannot help you,” I retorted, “Can’t you see that both my hands are tied holding on to Calder?”

Ethel had to return to her seat, a distance from us, resigned to a long journey of boredom. I looked at her, slumped at her seat and thought, “My poor girl. My good girl.”

Then Calder screamed and tried scaling the bus, but he could not go far because I was holding on to his arms for dear life. If the bus passengers had thought this was a problem of discipline, they probably changed their minds when they saw Calder licking the bus. I tried calming him by giving him his favourite music, but he yanked the earphone off. Then I counted to 10. This seemed to have some effect, but after 10, he got agitated again. He chewed at the sleeve of my cardigan, so I took off the cardigan and gave it to him to bite, but he flung it away. Finally, I sang one of his favourite songs, a Chinese Christian number entitled Road of Grace (恩典之路) and that gradually calmed him down. I sang the song over and over again, tapping the beat with one hand over his, then tapping his two hands together, then releasing his hands and tapping the beat on his chest.

One passenger, before getting off the bus, turned to me and said, “You are a great mother.”

My brave countenance buckled and tears started escaping from my eyes. I realized then that I had been in a combat mode, battling a formidable enemy called autism. When this lady’s kind words came to me, it broke the dam. My shoulders finally relaxed and I allowed myself rest for the rest of the journey.

 

At the end of the one-hour ride, Calder looked happy again. In fact, he began sliding into hysteria, laughing over the unexplained. Ethel came over and climbed onto my lap, wanting a cuddle. I gave her my love in a hug but told her I had to handle her brother before he became hysterical. Otherwise, we would not be able to get home.

“How are you going to get him home?” she asked.

“You take care of yourself while I take care of Calder,” I said.

She understood and we got home in one piece. That ended our very harrowing experience of an outing.

I learnt three things from this experience. The first is that a meltdown is easier to cope with when you see it not as misbehavior, but as a momentary weakness. At the end of the bus journey, Calder was bouncing happily on his seat and clapping his hands. Seeing the drastic before-and-after, I lost all intentions to reprimand him for his wild gestures. The second thing I learn is that a meltdown can be resolved with love, instead of strictness or disciplinary actions. The third thing is that autism builds resilience, not only in the parent but also the sibling.

One more thing: Despite scary experiences like this, I would continue to bring Calder out. Why? He likes it and because I love him.

 

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This article was first published in the Jul/Aug 2014 issue of Autism Asperger’s Digest. Brenda Tan is the author of Come into My World: 31 Stories of Autism in Singapore (www.come-into-my-world.com).