Twilight Zone

Calder has entered Twilight Zone again. I call it Twilight Zone because of the uncanny change. He became a different boy three days ago.

On Tuesday, he was still my jolly elf, delighted to accompany me to Hougang Green to buy dinner. Such a bubble of joy skipping and grinning. While at the queue, I actually asked him to help me get a packet of winged beans. After some search, he returned with them. Then I asked if he needed to go to the toilet. He merrily made his way there then returned to me.

On Wednesday, he became a stooped old man, slow to move, repeating motions but never finishing the task. He stood under the shower in a daze and when brushing teeth, left the tap running while water overflowed from his gargling cup. We had to make some noise to wake him from the stupor. Sadly I no longer wait for him to do the laundry together, because I tire of having to remind him repeatedly to get back on task. And the way he now looks at us -from the corner of his eyes - almost with suspicion it chills my heart.

When he didn't emerged from the public toilet, I was most dismayed. I could not imagine doing it all over again - yelling him out of the gents. But I had to because we were already late for his bowling training.

"Calder, what are you doing inside? You have to come out already! " I shouted into the gents. And he quickly came out in alarm. Was that what I intended - to frighten him into action? If yes, I don't know if the fright would stop him from getting stuck again, or would make such a deep impression the scenario is bound to repeat itself.

Even as I am writing this, Calder is stuck in the kitchen toilet. Do I beckon him out or let him be? If I beckon him out, it may become a fixture - he may never again come out on his own. If I let him be, well, I may go crazy waiting.

I decided that if there's no hurry, I will quietly wait for him, and give him a thumbs-up when he finally emerges. Which was what I did when we went to St Andrew's Cathedral for Shalomkids. After some 10 min wait,  Calder came out of the toilet not with his usual gallop but actually inching slowly out with his head hanging low. Then he started crying.

"Why are you crying, Calder?"
"Because cannot come out."

So, he doesn't like the new state of things either.

"It's ok. Mommy love you."

I miss my happy Calder. What I see now is a boy who turns his body away from us, who constantly looks worried, stricken even. I hope it's a phase that will soon pass.

Oh the fatigue of parenting a child so vulnerable to deterioration. Two steps forward and three steps back. What is going on in his brain? Is this transformation a result of adolescence?

But I want to trust God and believe that something good will come out of this.

Pray for us, my friends. Calder needs awakening and joy and I need wisdom as his Mom, and patient endurance.

Uncle

A year ago, in honour of World Autism Awareness, I went up the stage of Yio Chu Kang Chapel to share my experience as Calder's Mom. Then I started bringing Calder to this English service with me (his sister attends Chinese Sunday School which runs concurrently).

To my delight, Calder would bounce and move to the music and raise his hand in tandem with the worship leader's. Worship is obviously his most favourite part of the service. And to my consolation, he was able to stay seated on the pew for slightly more than an hour, although he might slide left and right, front and back, and turn around to gaze at other people.

Around this time, a retiree from this English congregation started looking for Calder to give him a box of Ricola candy every Sunday, right before the service. Then it became a pack of Ferrero Rocher chocolate that Calder could share with his sister and her good friend. This uncle heard that Calder is learning bowling, so he downloaded a bowling game and would let Calder play bowling on his hand phone at the breakfast table. Recently this uncle started inviting us to join his wife and him for lunch, on the Sundays he couldn't book a court for his weekly badminton games.

So yesterday, Calder and Ethel and I joined the couple for lunch at a Thai eatery opposite our church. Calder got to eat his favourite food (fried rice and chicken wings) and drink his favourite beverage (avocado milkshake). Ethel enjoyed her favourite vegetable (non-spicy Kang Kong) and mango sticky rice and brought home a pack of her favourite fruit (jackfruit) for which the uncle hunted around after lunch.

As for me, the deepest gratification was hearing...

Uncle: Calder, are you happy?
Calder: Yes!
Uncle: When Calder is happy, Uncle Leong is also happy.

God is so good.

Brown Bear

Calder was almost independent in the toilet except that he didn't know when to start wiping his backside. The solution: $2 timer from Daiso. (I have been using this timer to limit his sister's daydreaming and playacting in the bathroom. When the timer rings in 15 min, her water heater would be turned off.)

Poop

Sordid business but I'm going to list here the steps to cleaning up after a poop. I have been the one cleaning Calder's bottom and thought it's a role I'm stuck in for the rest of my life. I even thought I'd have to train Ethel so she could take over when I'm too old for the job or when I'm gone. 

We've been trying to teach Calder to clean up himself for years. I followed an online advice and got him to practise wiping peanut butter smeared onto a plate. But just as he  had to be reminded to erase thoroughly for a correction, he didn't seem to see the need to thoroughly clean his backside. And so he would perfunctorily wipe when instructed but never aiming to clean off all the dirt. And if I do not want to wash and scrub at underwear, I would sigh and take over the wiping. 

When I first decided to chart the steps for Calder to follow, I spent some time finding out the best way for him to do it. In my book "Come into My World: 31 Stories of Autism in Singapore", a mom shared that she used the cue: "1 ,2, 3 wipe. Check. Dirty? Take more toilet paper." But when I followed this, Calder wound up with a toilet bowl clogged with toilet paper. How many squares should he tear out? How many times should he fold them? I tried to find specific instructions on the web but in vain. And there are so many ways to tackle the same goal. Some advocate washing instead of wiping. Some suggest wet wipes. Some say crush the toilet paper. Some assume folding.

One very good thing about Calder is he  functions well on clockwork. Even his body obeys the clock - so we could get him to poop at regular timing. At first, it's right after breakfast. Then it became first thing in the morning after a cup of water (this is more convenient if the family goes out in the early morning). So I could train Calder regularly. 

But it was not easy because he lacked the motivation. Someone had to prompt and check. Even when supervised, he could never get clean enough. It was perfunctory dabbing rather than wiping. Could it be that his hand just couldn't reach far enough? After much trial-and-error, we solved the problem by getting him to prop one foot up on the toilet bowl as he wipes (note that he empties his bowels at fixed timing at home, so there's little danger of him dirtying public toilet this way). I used to wash him with soap after wiping but figured it's easier for him to use wet wipes on himself, so I taught him the difference in disposal - wet wipes must never be thrown into the toilet bowl. 

Much human efforts were invested in this self-care that comes naturally to many of us. But the turning point is God- inspired. Recently, at 12, the cloud lifted and Calder stopped waiting for instructions for every move. He became more aware of what's expected of him and began to want to do things by himself. That's when the training finally clicked. Now Calder is able to take care of  himself after a poop. Hip hip hooray! For caregivers who are still cleaning up bottoms, here are steps which may be helpful for training in self-care.

Simple Solution

A Mom shared this with me: Her autistic son liked to throw things out of the window. Instead of expending all her energy training and disciplining and reminding him, she blocked up that window. I learned from this Mom that there are ingenious and sometimes actually very simple ways to solve a problem. So I was training Calder to be independent in showering after swimming and noticed that when he tried to find his shampoo in the black swim bag, he pulled out everything else and dropped them onto the wet floor. Solution: Transparent swim bag.

The Pen

No more hassle of lead breaking (Calder tends to press hard when he writes). No more problem with sharpener shedding dirt. No need to pack pencil plus eraser plus sharpener. And the writing is brighter. Thank God for erasable pen.

Watch it

Once, we let Calder wear a digital watch to school. He started fiddling with the buttons which changed the settings and soon the watch was not accurate anymore. Then he fiddled with the buckle and ended up with a bleeding finger where the sharp buckle tongue had stabbed him under his nail. When he came home, he was without his watch. He couldn't tell us where it was or what had happened to it. That was three years ago. Today, Calder wore a watch to school again. At 12, he has learned to tell time to five minutes, so his Dad bought him an analogue watch with clasp (instead of buckle) and big numbers. I hope to see the watch again when he gets home this afternoon.

Pool Shower Steps

A few weeks ago, Calder was sent to Bedok Swimming Complex for training. Alas! That pool does not have handicap toilet and both teacher-in-charge and I are female. In the end, I brought him into the female bathroom to the chagrin of a teacher guarding her Primary school girls (I assured her Calder would stay behind the door). That made me think - by hook or by crook, I must teach Calder to shower by himself in public bathroom. So I found  hotel shampoo in a click container (instead of screw bottle which is a real challenge to close without spilling shampoo already poured onto palm) and trained Calder to use that at home. After a week, he is finally able to bathe without supervision! Hallelujah! Today, I printed simple steps and laminated the small A6 card to help him remember how to shower in a pool bathroom.

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.)