Sunshine after the Rain

By Brenda Tan

I keep a prayer journal. One day, I found myself writing: Dear Lord, thank you for giving me Calder, who is such a precious treasure. When I wrote this thanksgiving, I realised what a long way God had brought me. 

Calder has autism. What this means is that he cannot communicate well, does not know what is socially acceptable, and he loves repetition. These symptoms of autism presented us with many challenges when he was small.

When he was small, he was like the hamster at home. When we called him, he didn't respond. When we talked to him, he didn't understand. And he couldn't tell us what he was thinking about. So we were forever guessing why he was upset. And because he couldn't understand our words, it was hard to calm him when he was distressed.

Socially, he stuck out like a sore thumb. He pushed his way into lifts and buses. He stepped on people's toes. He grabbed food that belonged to strangers. He knocked on cars with drivers inside. He wanted to close all open doors. He would suddenly flap his arms and gave people a fright. He laughed even though he had caused offence. As a result, we often had to apologise on his behalf.

He craved for repetition and routine. Left to his own device, he would turn the light on and off, keep flushing the toilet, open and close doors, jab at lift buttons . The way to school must follow the same route. He must have kaya bread first, then jam bread. He found all kinds of patterns in life and without telling us what they were, insisted that we kept the patterns. So he was like a landmine - we never knew we had stepped on one until it exploded in anger.

The difficulties we faced included calming him when he melt down in public, finding him when he'd run away, cleaning up when he soiled himself (he couldn't tell us he needed the toilet), staying patient when he went into states of obsession e.g. putting his shoes on and off, turning the radio on and off, making us repeat after him etc.

Life became so bizarre that I lived in constant dread and apprehension - afraid of Calder's next meltdown, afraid that I couldn't stay calm enough to be a good Mom. There were so many problems I couldn't solve I had to call out to God for help and cling to him to carry me through. During this period,  God comforted me with his word. In John 16:33, he assured me that he knew of my struggles.  He said, "In this world you would have trouble. But take heart! I have overcome the world." And when Calder's meltdowns weighed heavy on my heart, God sent me his promise in Isaiah 54:13 - "... your children will be taught by the Lord, and great will be their peace. "

During this period, I was inspired to write a book collating the experiences of many families with autism. And so I published "Come into My World: 31 Stories of Autism in Singapore". This book project turned out to be the therapy I badly needed.

And God began to work wonders. Instead of staying a passive victim, I became an active advocate sharing my experience so that more people can understand what autism is. God also opened the door to ministries that enabled me to step out of the firefighting mode in which I was trapped. I became a worship leader in church and a group leader in Bible Study Fellowship, and found myself richly nourished as I served.

Calder also began to improve. At 7 years old, he called me Mommy for the first time and seemed to finally registered and appreciated our presence. He learned to read and write and began to understand explanations. He became more flexible to change and now enjoys going out to new places. He picked up skills we never dreamt him capable of, like inline skating and playing the piano. Most importantly, he mellowed down so much that he hardly throws tantrum these days. He is no longer a hamster or a landmine. He is my sunshine who delights in simple things like travelling on a bus, eating a cake, watching videos of himself. 

Calder still have many weaknesses.  For example, he still cannot answer questions well. He cannot sit still for long.  He still wants to jab at lift buttons. But I see the miracles in his life and know that God will complete the good work he has begun in my son and I.

(The above is a testimony presented in Yio Chu Kang Chapel on 24 Apr 2016, in conjunction with World Autism Awareness month.)

Brenda Tan worships at Yio Chu Kang Gospel Hall. She published "Come into My World : 31 Stories of Autism in Singapore" (www.come-into-my-world.com) in 2010, and is now writing another book on independent adults with autism. If you know personally autistic persons who are working and who are married, please contact Brenda at brenda@come-into-my-world.com.

Orange 2

Today I decided to extend the steps to teach Calder to eat orange independently. I instructed him to put a plate (for orange peels) and a bowl (for peeled orange) on the dining table. Taught him to wash (must rub) the orange and the tricky part - to slit the orange skin using the plastic ring. When I found him making random slits on the orange skin, I took a pen and drew lines for him. He was not able to cut along the lines accurately but that's ok. It just meant more strenuous peeling. At one point, Calder rubbed his right eye with his juice-stained fingers and had to he rescued with a wipe of wet towel. After eating the orange, Calder rinsed the plate, bowl and plastic ring, and put them back. Voila!

Umbrella

Last week, it began to rain when we were about to set off to buy lunch. Do I walk Calder under my umbrella? But one of us would get wet. I decided to teach him to use an umbrella. A full-length umbrella is easy to use - just press a lever to open and pull the umbrella close. But Calder needed to be instructed what to do with that umbrella. Holding it by the hook, for instance, and putting it right above his head. It's amusing to see him happily skipping off with that umbrella and holding it Mary-Poppin style (high above his head).

Today I decided to let him use a foldable umbrella for the sunny walk from Caldecott MRT station to RDA (Riding for the Disabled Association). Many more steps involved - Release the strap, pull to extend shaft, push beyond the spring to open canopy. To close - pull to retract canopy, bump handle to retract shaft, wound the fabric around the strap, stick the velcro together to keep umbrella compact.  Definitely need more practice. I'm going to keep this umbrella in his bag for frequent use.

Orange

Calder likes oranges. I would usually slit (see picture for the handy plastic ring for slitting) the orange skin and let him do the peeling himself. He has to be careful not to peel too near his face, because orange juice may squirt into his eyes. Today, before slitting his orange, I decided to play throw-and-catch. So Calder and I took turns to throw the cold orange to each other. I limited it to 10 rounds. After all, the orange may fall to the ground and there's just so much bruising it can take before it looks too awful to eat. 😵

Shower

I thought through the process and created a shower chart for Calder. Calder has memorised the steps but the chart remains useful - I use it to point to the next step if he stops midway (e.g. distracted by the flow of water over his head). Calder still requires supervision because he is not thorough in his washing. The shower chart stays pasted on our bathroom door.

Balloon

Ethel brought home some balloons from a birthday party. By the next day, there was no more helium to keep them afloat. But then Calder and I found good use for them. We took one and tried to keep it up in the air. Calder didn't know what the game was about at first. Instructions like "Don't let it fall to the ground!" didn't work. What worked was a direct "Beat the balloon!". And from what Mommy was doing, he figured he had to hit the balloon upwards. We began to perspire and feel hot but the laughter was worth the exertion. Balloons are easier to manage than balls because of their slow motion. And a balloon tied with string is easier to retrieve.

Longan

Calder saw me eating longans this morning and so I invited him to join me. First, peel off the skin. Next, pop the longan into mouth. Chew gently. Spit out the seed! I tried teaching him to eat cherry before but he swallowed so many cherry seeds I had to give up. Longan is probably better training material because it's not easy for this big a seed to slip into the throat. I must confess, though, that I was prepared to call it a day if he so much as swallowed one seed! He wanted to hold the longan in his hand to chew or peel off the flesh but that would mean longan juice dribbling down his arm, so nope - he had to eat it the adult way. By the 5th longan, he was able to spit out a clean seed. 

Sharpener

I've been trying to teach Calder to use the sharpener but with disastrous effects - he would either break the thin pencil lead or dislodge the sharpener from its container. Today it occurred to me to let him sharpen thick colour pencils instead. Wow, there's so much skills involved, including holding sharpener and pencil the right way, pushing the pencil in while sharpening, turning the pencil and not the sharpener etc. Even emptying of the sharpener container is a skill (e.g. not to drop sharpener into dustbin). Calder gleefully laboured over 21 thick colour pencils before he tried sharpening a thin one - lo and behold! That thin pencil lead stayed intact. Successful learning!

Vocabulary 2

This is the next book I'm using to increase Calder's repertoire of words. Font is big and picture is provided for some questions. Layout can be cleaner but a plus point is the variety of exercises, including matching which trains Calder to use the ruler. Found the book in Popular bookstore.

Come Teach Our Children

When you have a child with autism, you enter a world of bizarre parenthood. Bizarre because your kid does not behave like other kids. Bizarre also because of the high expenses involved in education. My son's school fee is $350 each month compared to my daughter's  $13. And his school bus costs $250 compared to his sister's $140. Yes, my son Calder is the one who has autism.

The early years following  diagnosis will see many parents plunging into the sea of therapies to save their kids from their alarming deficits. Speech therapy, for instance, is the must-have for such kids since they cannot talk. Then there is occupational therapy to help improve their poor motor skills. And Applied Behavioral Analysis (ABA) to train them to focus on tasks. Or Floortime to help them relate to other people. Craniotherapy? Music therapy? Hippotherapy? A shadow teacher? GFCF diet? Vitamin supplements? And the list goes on.

An hour of therapy easily costs $100. Imagine the expense of various treatments put together. ABA therapy, for one, recommends 40 hours of training per week. Once I found myself talking to a mother who has placed her autistic girl in a privately run ABA school:

"How much is the monthly school fee?" I asked her, "$2k?"
"No, $5k, " she replied and I nearly keeled over.
"How do you afford that?!" I exclaimed.  And she told me they sold their house.

Indeed parents have to earn much more to afford special education. Ironically,  with a special-needs child, usually one parent would have to quit his or her job to take care of the kid.

In my family, after a few years of splurging, it became clear to my husband and I that it's not realistic to carry on that level of expenditure, so Calder's therapies tapered off one by one.

Hence when I shared my parenting experience at Ngee Ann Polytechnic, and was asked how tertiary students can help the autism community, immediately I answered: "Come teach our children".

And so the One Child One Skill project was conceived. In this volunteer scheme, pairs of tertiary students visit the home of an autistic child to teach the child a skill over 8 sessions. The skill was decided by the parent, depending on that child's learning needs.

Calder learned how to play Snake & Ladder this way. He looked forward to the volunteers' visit every week. And during the one-and-half hours of teaching, I could sit down for a leisurely breakfast or efficiently complete some household chore. In this way, One Child One Skill fulfills its goals of teaching the autistic child a skill and supporting the caregiver via respite. The 3rd goal of One Child One Skill is to enable volunteers to understand autism better. What better way than to go right to the home to interact with the autistic child?

One Child One Skill is now in its 6th run. The number of families who sign up for this scheme always outnumbers the number of pairs of volunteers available . It is my wish (and the wish of many fellow parents) that more volunteers step in to fill the gap.

If you teach at a tertiary institution and could mobilise your students for this scheme, please contact Brenda Tan at brenda@come-into-my-world.com. More information on One Child One Skill can be obtained at http://www.come-into-my-world.com/one-child-one-skill .

Brenda Tan is the writer of Come into My World : 31 Stories of Autism in Singapore (www.come-into-my-world.com ).

Readeez

Calder is smiling as he watches this dvd. Readeez teaches English using lyrics. Lovely compositions with a cosy sense of humour. Available in Popular bookstores.

Recipe

Calder likes the barley Huai San soup that I cook weekly, so I typed out the recipe for him to help make the soup. The recipe is on the fridge for easy reading. I would ask Calder to read and follow the instructions step by step. And he is proud when I announce to the family that the soup was made by him.