It's about Love

By Brenda Tan

Recently I was asked the pertinent question: “How do you reconcile the idea of a good God with the immense challenges parenting a child with autism?” The first thing that came to my mind: It is precisely because of the many challenges I face that I’m so thankful God is good.

What challenges do I face? Let me first explain what autism is. The autistic brain functions in such a way as to result in poor communication and social skills, and a tendency to engage in repetitive behavior. These traits are evident by the time the child turns three.

My son, Calder, was diagnosed with moderate autism when he was three. He couldn’t communicate in words. He couldn’t even understand our words. Even at six, he couldn’t tell what was socially appropriate. He took French Fries from another table and reached for drinks not belonging to him. He insistently jabbed at lift buttons and bounced in excitement when he entered a lift. He couldn’t stand still in a queue and would step on feet in front and behind him. He turned faces with his humming and hand flapping. The hand dryer frightened him, noisy environment overwhelmed him, warm weather irritated him. He became anxious when there were changes to routines. In fact, he was so easily agitated that I used to wonder in the mornings: what time of the day he would have his meltdown.

Parenting such a child was not easy. How do you explain changes to a child who does not understand your language? What do you do when your child cries in a heartrending manner yet cannot tell you what is bothering him? How do you calm a child who behaves like he cannot stand his own skin? How do you keep calm when he’s tearing down the house? How do you carry on when you lose your calm and feel like you’re the worst Mom in the whole world?

That is why I’m so thankful that God is good. When I’m helpless, I call out to him for rescue. When I’m lost, I ask him to show me what to do. When I fail, I lay my errors before him and seek the strength to carry on.

It occurred to me, one day, that the fruit of the Spirit does not include intelligence, or even wisdom. I saw then, that God has given me Calder not to test how capable I am in fixing him. The test, instead, is: Can you remain loving even when he does not improve? For all the commandments hinge on the word “Love” (Galatians 5:17).

But God is good. While I persist in loving Calder, he also effects improvements. At seven, Calder called me Mommy for the first time. He learned to brush his teeth. He began to read and write. His meltdowns ceased. Now he basks in simple delights like taking transport or watching videos of himself.  At 12 this year, he has finally learnt to bathe himself. Calder is no longer the tornado or the landmine in our house.  He is our treasure, a most precious gift from God.

2 April is World Autism Awareness Day. I’m writing to help you understand what autism is, and what it means to parent a child with autism. Not all autistic children present the same challenges, but the journey is difficult for all parents. You can help by praying for us. Find out more about the condition so you can offer assistance when the situation calls for it. Smilingly welcome our child in your midst. Let your child befriend our child and our child’s sibling. Speak to us words of encouragement and not criticism.

May the Lord make your love grow and overflow to become a rich blessing to families in need, for his good purposes and to his glory.

Brenda Tan is the writer of “Come into My World: 31 Stories of Autism in Singapore” (www.come-into-our-world.com). She has two children: 12-year-old Calder and 9-year-old Ethel. Brenda worships in Yio Chu Kang Gospel Hall.

爱的见证

最近我被问到一个问题：“面临着养育自闭症孩子的巨大挑战，你如何坚信上帝的慈爱？”我的第一想法：正是因为我面对许多挑战，所以我更感激上帝的美好。

我面对什么挑战呢？让我先解释什么是自闭症。自闭症患者的大脑跟正常人的运作不同，导致患者本身在沟通和社交上有困难，并且倾向重复的行为。这些症状在孩童三岁之前会显露出来。

我的儿子在三岁时，被诊断出患有自闭症。他不能用语言来沟通。他甚至不了解我们的话。即便到了六岁，他也不了解怎么适应社会环境。他会从别人的桌子上拿炸暑条，并且去喝不属于他的饮料。当他进入电梯前，他会陆续按电梯按钮，进入了电梯也会兴奋的跳上跳下。他不能安定的排队，他往前往后，总要踏在别人的脚上。他会发出嗡嗡声，并摆动双手，引人注意。厕所内用来烘干手的吹风机的声音会吓到他，吵闹的环境会刺激他，太热的天气也会让他烦燥。当日常生活有些变动时，他会变得焦虑不安。现实中，他的情绪很容易被激动。我常常在早晨问自己：今天什么时候他会失控？

养育一个自闭症孩子并不容易。你要如何向一个不了解你言语的孩子解释生活中的变迁？当你的孩子很激动的哭泣，而他又不知道如何表达他自己的困扰时，你该做什么呢？你如何安慰这样的孩子？当孩子大闹到好像是要拆了屋子的时候，你要如何保持冷静？当你感到失去力量时，你如何继续努力？可能你会觉得自己是全世界最糟糕的妈妈。

当我面对这些挑战的时候，也是我经历上帝的时候。上帝是慈爱的。当我无助的时候，我祈求祂的帮助。当我迷茫不知所措的时候，我祈求祂带领我。当我软弱失败的时候，我祈求祂给我力量，继续前行。

有一天我发现，圣灵所结的果子，不包括聪明甚至是智慧。在那个时刻，我醒悟到，上帝所要求我的不是懂得如何“修理”儿子的智慧，而是一颗爱孩子的心 - 就算儿子没进展，我是否能够爱到底？因为全律法都包在“爱”这个字之内了。（加拉太书5:14)。

上帝是美好的，当我就这样靠着祂的力量去爱我的孩子的时候，我儿子的情况慢慢有了改善。当他七岁时，他第一次叫我妈妈。逐渐的，他学会了刷牙。他开始读与写。他激动的情绪慢慢的平复了。他喜欢乘车或观看自己的视频，在这些简单的爱好中享受着属于他自己的快乐。他现在十二岁了，他不再是我们家的龙卷风或地雷。他是我们的宝贝，是上帝所赐给我们的珍贵礼物。

四月二日是“国际自闭症日”。我希望大家能够明白什么是自闭症，也能够了解自闭症孩子对家庭的影响。并不是所有自闭症孩子的表现都是一样的，但他们的父母都面对着挑战。请大家为这些家庭献上祈祷。也希望大家可以索取有关的资料，更了解自闭症，以便在有需要的时候，可以提供帮助。请用微笑欢迎自闭症的孩子在你们当中，让你的孩子和我们的孩子一起相处，给予我们鼓励而不是批评。

愿上帝叫大家的爱心增长，充足，让我们成为别人的祝福，成就上帝的美意。

本文作者是杨厝港福音堂的会友：Brenda Tan 心微。她有两个孩子：12岁的自闭症儿子甘泉和9岁的女儿甘恬，曾出版《进入我的世界：31个新加坡的自闭症故事》一书（www.come-into-our-world.com）。

(This article was published in a few churches' bulletins. Feel free to share it.)

Initiative

Last night, I asked Calder to help me keep the laundry and then got busy selecting clothes for ironing. I was surprised that he not only kept his own briefs (the first step whenever I set him this task), he went on to keep Daddy's clothes, socks etc. Previously he would wait for instructions for every set of clothes, sometimes even for every individual article. This time round, he not only kept the clothes, he folded them on his own (previously I fold and he keeps). And when the clock struck 9 and I asked him to tell Daddy "It's time to go to sleep" (so Daddy can start the bedtime procedure), he went straight into the toilet and began brushing his teeth. Hallelujah! Is my Pinocchio turning into a real boy?

Let there be Light

Had to prepare dinner so I asked Calder to go practise his piano. And so we were serenaded by Calder's music, piece after piece for 45 minutes, until Ethel decided to use the toilet in the piano room. She came running back. "Mommy, Calder has been playing in the dark! He was squinting at his score!" Oh, no wonder he played so softly. It is not the first time Calder plays piano in the dark. All because no one instructed him to turn on the light.

Word Search

Saw a pair of autistic twins completing word searches and thought that's a hobby I can introduce Calder. Good for vocabulary and focus. So I downloaded a free app and tried it out with Calder while waiting for his school bus. Had thought he would have difficulty spotting words spelled backwards but I was so wrong. Maybe they don't read left to right.

Manual for Missing Child

What you can do when your child is lost:

A. Report police by going to a police post or calling 1800-2550000. Police will ask for your child's height and weight so have these info updated and on hand. The police will also ask if you'd like to publicise the search on their social media platforms so decide this between spouse and you ahead of time.

B. Find a clear picture of your child (on handphone?) and use it to ask people in the vicinity of they have seen your child.

C. Disseminate the picture to family members, friends or neighbours who can help search, indicating clearly: 

1. What your child is wearing.
2. Where your child was last seen.
3. Your child's favourite places.
4. Your contact number.

C. Use social media to expand the search party. You may use this template to post on Facebook, together with a clear picture of your child:

My (age)-year-old (son/daughter) is lost. (Special condition, e.g. He has autism and cannot speak well.) Last seen at (venue) around (time). Wearing (description of clothes and bag if any). (He/she) likes (favourite places). If you see (him/her), please stay with (him/her) and contact me at (phone number). Please do not call me otherwise.

D. If you suspect your child of having taken public transport, report missing child with SBS Transit by going to the control room of either MRT station or bus interchange.

E. Have someone at home with door open in case your child makes his or her way home.

Some ways to make it easier for your child to be found:

A. Take a clear picture of your child before bringing him or her out, especially to crowded locations. That way, you have ready picture with child in current clothes should your child be lost.

B. Attach your contact particulars to your child. This can be in the form of information tag hung over the neck or placed in his or her bag. For durability, you can consider a dog tag with telephone number engraved, worn as necklace or tied by shoelaces to shoes.

C. Have your child memorise your contact number.

D. Have your child carry a tracking device so you can use GPS to locate him or her.

The Unpredictables

There is a strange man in my neighbourhood. He looks normal, cheerful even. But he does not behave normally. I usually see him at the bus-stop with his loud radio. He is strange because the radio plays only rhythm, not tune. So you keep hearing drumbeats and maybe the cymbal in a repetitive rhythm. He would put the radio right beside his ear and jiggle his big plastic bag of batteries.

Another day, I saw him with not his radio, but a big bag of whistles. He was blowing one of them repeatedly. He saw my boy, smiled at him and generously offered him one whistle. I stopped my boy from taking the whistle and gestured “no” with a smile and a polite little shake of the head; I did not want to antagonize this strange man. Then I gently turned my son away from him.

I did what most parents would do to protect their children. Although the man was not aggressive, he acted strangely and so fell into the category called “Unpredictable”. When people do not follow social norms, you feel insecure because you do not know what harm they can do. It is therefore natural that you try to keep a distance.

Some weeks ago, I got the chills when I caught a glimpse of this category from a different angle. This time, my six-year-old son was in the box.

My son Calder loves trains. He gets really excited when a train moves. One day, we were in the MRT station waiting for our train. The train from the opposite direction arrived first. When he saw it coming, he leapt from his seat and started jumping up and down in delight. He flapped his hands too. I registered the reaction of a mother sitting beside us. When Calder leapt from his seat, it gave her daughter a fright. (She was probably one or two years older than Calder.) Instinctively, the mother shielded her from Calder, who had become “Unpredictable” and therefore dangerous in her eyes.

How did I feel? I was dismayed but not alarmed. Calder was diagnosed with autism three years ago. In three years, I have learned to accept that my son is different from other children, and because he behaves differently, people are going to look at me differently too. Fortunately I love him so much that I’m happy to bring him out despite his odd behaviour. And sometimes, the best way to cope is to pretend we exist in a bubble apart from the rest.

He is the good-looking boy on the bus who makes sounds like long yawns. He makes such sounds because he enjoys rides. Since it is a display of bliss, I see no need to curtail it. He pushes his way into the lift because that’s his favourite thing and then he jabs at the buttons repeatedly. The other day, he made a bee-line for a toilet cubicle, oblivious to the queue outside the door. As usual, I had to apologise on his behalf. My apologies did not work, though, when he tried washing his hands at all the sinks in another toilet. I was in a cubicle when he did that and emerged quickly when I heard an auntie scolding him in Mandarin. That auntie turned out to be the toilet cleaner. “Naughty! I told you not to waste water!” I explained to her that Calder is autistic; he did not understand what she’s talking about. But she carried on ranting. Like many members of the public, she probably did not understand what autism is.

You know what is the difficult thing about having an autistic child? It is that the child looks like other children but cannot be expected to act like them. One of the symptoms of autism is problem in communication. Calder does not understand much language. His speech is limited to the things (usually food) he wants. If you are to ask him what he did in school, he would probably just smile at you. It depends on the tone you use. If you use a commanding tone for the same words, he would cry. Just yesterday, my three-year-old daughter burst into tears in a frustrated attempt to converse with her brother. “Calder, did you cry cry in school today or are you happy?” she had asked. When he didn’t respond, she repeated her question more loudly. The result? He started crying and chanted, “It’s ok, it’s ok...” as he is apt to do when he’s upset.

Another symptom of autism is lack of social skills. Unlike his sister, Calder does not seek friends. He is happy on his own. However, he watches people and can sense mood. Put him in a room of happy people (not too noisy or cramped) and he would be happy. When he is happy, he smiles like the world is a really beautiful place, and he flaps his hands. When there’s tension in the air, like when my husband and I are about to start an argument, Calder would pick up the negative vibes and be agitated to tears.

The third main symptom of autism is an obsession for repetition. Calder loves to watch the lift open and close. At home, given a choice, he would spend all his time flipping switches and flushing toilets. He wants to watch the same show (Baby Gournet) every day. He asks for the same fruits in the same order. His greatest fear, it seems, is that family members would not cooperate to ensure the completion of the many routines in his daily life. Not giving him jam bread after kaya bread, for example, is enough to send him into panic mode.

Yes, having an autistic child is like entering a different league of parenthood. We have to consider carefully what we allow him because it can easily turn into another tiresome routine. Because Calder’s understanding of language is limited, I cannot say “no” to him then pacify him with a valid explanation. What I do instead is to anticipate his wants and offer him what I have before he requests for what I don’t have or am not prepared to give. For example, I put his breakfast on the table before he comes into the kitchen so he would not get upset if he asks for, say, cake and I have to tell him we don’t have any cake at home at that time. Because he hears the tone more than the words, I am careful how I inflect my voice when I speak to him.

Surprises and changes unsettle him, so I make a point to tell him what to expect next. He hates to be interrupted, especially when he is engrossed in his version of play, which is to do something repeatedly like spinning an office chair. Glee easily turns into a frown and quick tears because by calling out to him, we have interrupted his thoughts or reverie. Hence I speak to him gently whenever necessary. And I never pat him from behind.

We still bring him out to visit friends although he may become quite a nuisance by turning on and off the fan or insisting that all doors be closed. Fortunately, he enjoys food and a bouncy sofa and can sit in one place watching faces amidst the soothing drone of adult conversation. As he grows older, he understands explanations better so it is easier to draw his attention away from unacceptable preferences.

Above all, I am thankful that he is not averse to affectionate gestures like hugs and lingering eye contact. It is through these means that I express my love for him. I have come to see that as long as I do not compare him with neurotypical children, I am able to appreciate him for his simplicity and his very beautiful smiles. Certainly I do not hope for him to grow up to become another strange man at the bus-stop whom people shun. However, even if he remains an oddity all his life, I want to be around to assure him of my continued love and acceptance.

The writer Brenda Tan has published a compilation of autism experiences entitled “Come into my world: 31 stories of Autism in Singapore”. This book is sold in autism schools, a few cafes, and online. For more information, visit www.come-into-my-world.com.

(This article was first published in April 2011 issue of Young Parents.)

Treasure Hunt

You may ask me for anything in my name, and I will do it. John 14:14

This was my devotion verse for today. I was ready to start listing my needs but then got busy preparing the kids for school. Ethel went off on the school bus first. Then I woke Calder. When he had taken his breakfast etc. we prepared to go downstairs to wait for his school bus. 7.30am.

The door was opened and Calder stepped out. Wait. Let me grab a book for him to read in case the bus comes late. But when I emerged from the flat, Calder was nowhere in sight. Perhaps the lift door opened and he went in and because there were other people in there, he couldn't wait for me. So I went down in another lift. But he was not downstairs. And not waiting at the void deck table for his school bus. Could he have gotten out of the lift at another floor? So I took the lift to Level 18 (highest floor) and went down level by level to look for him. No sign of Calder. Maybe he walked along the corridor to another part of the flat. So I took another look from Level 18. And another. Or maybe the school bus came and he went up the bus? I messaged the bus aunty. Nope, they are still on the way. The school bus arrived. No Calder. So I asked them to leave.

By now my speculations had become morbid. Was he abducted? When I finally find him, would he be without a limb? Has someone hidden him in their flat?

This morning, Calder finally came out of the toilet on his own. For many months, he needed people to call him out. Otherwise he would be stuck in the toilet. It was as if there was an invisible fence at the doorway. Over the past few days, I tried a game of patience with him. I quietly waited for him to come out while he quietly waited in the toilet for me to call him out. In the end, my patience won. And this morning, he emerged from the toilet by himself. Now he is perfect. But my perfect boy has disappeared.

I went back home and asked a family of neighbours if they'd seen him (perhaps he came back home while I was searching for him). No. Their domestic helper would look out for his return while the family helped me search. This family consists of a young couple and two preschoolers and a toddler.

Searched the vicinity, calling out his name intermittently. At one point, I even shouted, "Calder! Come back to Mommy!" When Calder was small and very difficult with his frequent meltdowns, I ever thought how pleasant life would be without such a character in the family. But Calder mellowed and became such a sweet boy, and as I searched for him today, I felt like I'd lost my treasure. I'd never want him out of my life if I can help it.

Left my number with the fruit vendor, with the porridge seller. Wrote it on the palm of a neighbour walking her dog etc. Messaged hubby for a picture of Calder in his school uniform and started him worrying. I finally found the picture on my handphone and posted it on Facebook so that friends in the area can help me look out for him. The post was reposted 1K times (wow) until friends not linked to me by Facebook also knew of Calder missing. And so Calder's ex-swimming coach messaged me.  And his new bowling coach called.  I received more messages of consolation telling me not to give up, that people are praying, and some have driven out to patrol...

From a distance, I saw someone dressed in Calder's colours walking towards Punggol Park. So I crossed the road and walked that way too. Received a call from an unknown number. Hello, this is Shin Min Daily. We read on Facebook that your son is missing. Can you give us some details. Thinking maybe the media can help, I complied while trying to keep my voice calm. Then the reporter asked, "Can we have Calder's Chinese name?" No, Calder does not recognise his Chinese name. "Can we have your Chinese name?" Calder definitely does not recognise me by my Chinese name. "Because we are a Chinese press." Oh. I realised it's for publicity. By now, my voice was breaking. If you cannot help in a concrete way, never mind. And I ended the call. Incoming call from sister-in-law. No, I cannot take any more calls. I don't want to do any more explaining. So I let it vibrate (my phone is forever in silent mode).

I searched all the nearby places Calder could have gone. Hubby had taken urgent leave and had made a police report. If Calder had boarded a bus from our nearby bus stop, he would be heading for Changi Airport so I asked hubby to contact Transitlink. Nobody picked up the call. So I walked over to Hougang mrt station, flashed Calder's picture and asked them to contact the other stations. Hubby asked, what else can we do now? It's been three hours. Ask MP for help? So I emailed MP with picture of Calder.

10.30am! Calder drank a lot of water this morning. He needs to use the toilet, but he doesn't know to ask. Would he have wet his pants? I wanted to cry.

I remembered the devotion verse of the day:

You may ask me for anything in my name, and I will do it. John 14:14

Having exhausted the places I could search, I went home, knelt down and prayed: Lord, I can ask for anything right? Please help me find Calder. Amen. As fears arose, I found myself asking: God, surely you are not just a good feeling people get when they believe. You are alive and able to help me. So help me please. And then: I don't want to be afraid. Help me trust you. Help me trust you. As I walked out again, I prayed (more like a chant since I prayed this over and over again): Please keep him safe. Please give him your peace. Please lead him home.

Then the call came. 11.06am. Are you Brenda? Calder's Mom? This is Changi Airport. Yes, Calder is with us. He tried to cross the arrival gate. I found your name card in his bag.

The first thing I asked the airport police: Can you help me bring him to the toilet?

Hubby and I took a cab to Changi Airport. Calder was at the information counter. If he was sitting like a stone, the stone became flesh when he saw us. The airport police who found him was on the phone with the police inspector who had taken up our case. I quickly updated friends before my handphone battery died. Calder got up and went to enjoy the nearby lift (this means pressing the button and flapping in delight as the lift comes up).

Calder! What are you doing in Changi Airport? You should be in school right? He grinned. Later, when we had to go down to Ang Mo Kio police station to close the case, he couldn't answer the inspector's questions. That's not surprising. He is autistic. Our guess is that he'd followed commuters down the lift and up Bus 27. By this time, Calder was no longer smiling. In fact he looked like he wanted to cry. Maybe because he could not answer the many questions we asked him. Or maybe it's delayed reaction to the fright of being lost. Or some other awful reason. Who knows, since he cannot talk? But he's not injured so we thank God for that. One of his shoes had fallen apart though. He must have been walking or skipping a lot while in Changi Airport.

When we reached home, it was 3.30pm. I didn't feel like cooking dinner anymore. My legs had turned jelly whether from dread or fatigue. In fact I felt like I'd taken 100,000 steps. So I went to sleep. When I awoke, Ethel was back from CCA. First thing she said: What happened to Calder? (She must have heard from the friend of a friend of a friend.)

From this saga, I learned:

1. The name card saves the day. Worn out though it looks, good thing it is still in Calder's bag. I had  scribbled on the reverse side: This belongs to my son Calder who has autism.

2. Always have a clear pix of Calder around, best in the clothes he often wears e.g. school uniform.

3. Get a handphone with longer battery life.