Why help?

When you have special needs in your family, and you see another family in need, it's easy to think:
"I have enough needs of my own, so why should I help?"
On the other hand, you can also think:
"I understand what it is like to be in need, so I will help."

I was without a babysitter on Tuesday, and so was prepared to wait for Ethel to come home around 5pm before bringing both kids to Calder's bowling class (Special Olympics) which starts at 5pm and ends at 7pm. Ethel will need time to shower so I was expecting Calder to reach the bowling alley around 5.45pm. So I texted the bowling parent-group that Calder would be late for the above reason (the journalist in me readily detects potential puzzlement and so I always like to give clear reasons).

On Tuesday morning, I received a text from a fellow parent asking if I'd like her to drive Calder to bowling. Yes, that'd be great. Then Calder wouldn't need to wait for his lane to finish one round of bowling before joining in. And I wouldn't be hurrying Ethel like mad when she comes back.

When Ethel came home, she took some time to discover that Calder was not at home. When she found out that he's on his way to the bowling alley, she asked, "Then why are we in such a hurry?"

"It's because one aunty has two autistic children to take care of, plus a small girl."

It's a miracle of God's provision, deeply appreciated. Not easy a helping hand to extend, because an autistic child like Calder cannot communicate well and who knows what he wants to do? Frankly I'm not sure if I have the confidence to take care of this friend's autistic son like she has volunteered to take care of mine. She is the brave and very kind one.

A special-needs family reaching out to another special-needs family - it is a beautiful gesture that moved my heart.

Thank you, Yvonne.

Home Haircut for the Autistic

An interesting conversation with a trainee  at Kimage Hairdressing School...

Me: When would you graduate?
Trainee: End of this year.
Me: Would you be setting up your own hair salon?
Trainee: Rental is too expensive in Singapore.
Me: You can go to people's homes to cut hair. Some autistic children cannot go to hair salon because it's too noisy.
Trainee: Really? I thought "autistic" just means they like to be by themselves.
Me: Some autistic children are afraid to go to unfamiliar places, so their home would be the best place to cut their hair. You can even cut their hair while they are watching their favourite show in the living room.
Trainee: I've thought of going to homes to cut old folks' hair - old folks who are not mobile. Never thought of autistic children. But I do not have experience - would the family let me cut their child's hair?
Me: Experience is accumulated, isn't it? You just have to get started.
Trainee: Maybe I should go get trained first.
Me: I'm not sure if there is a hairdressing course specially for autistic clients.
Trainee: Would the kid let me use the clipper?
Me: That's the challenge. My son was very afraid of the sound it made, but got used to it over time. If you meet a child like that, I suppose you'd have to use mainly scissors. Maybe clip a bit for first visit, clip more the next visit, until that child trusts you.
Trainee: I ever thought of going overseas to cut hair for charity.
Me: But you still need to earn a living right? So we are talking about a specialised hairdressing here. You see, it's not that parents cannot afford it but that few hairdressers are committed to figuring out how to cut their child's hair. Just focus on the cutting. Not washing because you need special seats for that.
Trainee: Yah. And not dyeing of hair - just cutting.
Me: Meaningful way of using your skills, right?
Trainee: Indeed (说的也是).

7 Airport Suggestions

On 19 Mar, I attended a caregivers' forum organised by Changi Airport Group wishing to find out how the new Terminal 5 can cater to families with special needs. Personally, I went with two main suggestions in mind:

1. Handicap toilets must not be inside the Gents or Ladies, so that mothers can help their grown special-needs sons with toileting.

2. Allow special-needs persons to clear customs not individually but with their caregiver. This is because even as adults, autistic persons may feel lost, not understanding what is required of them and not being able to answer questions posed by the customs officer. This is even more difficult for restless children who may dash off once released from their caregivers' hand.

But if it's not possible to clear customs with the caregiver, then I'd suggest:

3. Indicating the special needs on the passport or on the boarding pass. With autistic persons looking very much like their neurotypical peers (except when they exhibit repetitive motions), I'm concerned that lack of understanding may be interpreted as refusal to cooperate, getting autistic persons like Calder into trouble with the airport police. And this trouble would only escalate if the police suspect foul play and by stern or harshly issued instructions, make the autistic person anxious or edgy.

An indication of special needs is only as useful as the amount of knowledge people have of such needs. Hence I think it is important that

4. Airport staff be trained on symptoms and limitations of various special needs, especially the "invisible" needs like intellectual disability, so that they can respond appropriately in urgent situations like when an autistic child melts down. In the case of autism, staff would learn, through training, important tips like using a calm voice in communication, steering the family to a quiet place or allowing them to go first (in queues) to minimise the child's distress in waiting.

5. Ideally, there would be a priority queue for families with special needs. This would facilitate clearance of customs together with the caregiver (so the general public wouldn't question the exception) and also minimise unhappiness of the general public should the special-needs person cause delay of queue.

I never knew until this forum, that there is such a place called the special-needs lounge in Changi Airport. Apparently, when we book air tickets, we can indicate to the airline our need to use this quiet place. Then a staff may usher us there to wait for the plane. Ease of use however depends on the airline, so it'd be good if

6. Accessibility to this special-needs lounge can be controlled by the airport rather than by individual airlines - perhaps showing the DDR card for the family to gain entry.  Also, that this lounge not be just a quiet place with soft seats; it can contain books and sensory toys to occupy children with special needs. There can even be a soundproof, dimly-lighted room in this lounge where autistic children can enter individually and sit on a bouncy ball  to calm down when they have a meltdown.

7. If there are provisions for people with special needs, these need to be clearly stated on the website for easy access. Perhaps this special-needs page on the airport's website can also include a downloadable picture procedure video or slideshow to prepare special-needs persons on what to expect at the airport.

Miracles

An autism sharing - my parenting journey - at Bethany Emmanuel Church on 1 Apr 2018 (English translation below):

我有一个儿子，甘泉，今年十三岁。他有自闭症，所以不懂得沟通，就算是yes or no 的简单问题也答得不清不楚。他就像外星人，不会讲我们的言语，也不明白我们讲的话，甚至不明白我们在做什么，就这样时常处在一种很没有安全感的状态，很容易情绪失控。

成为他的妈妈之后，我终于明白什么叫 Surrender - 束手无策，只能投降。当他伤心流泪时，却又说不出原因，我只能为他祷告。我说： 上帝啊，只有你明白，能安慰他，帮助他，我就把儿子交给你了。当他在外面大闹，有时又哭又踢又想逃跑时，我好像走进了恶梦，根本无法控制局面，我只能向上帝呼喊：Help!

有一回，我带两个孩子到 Changi 机场的室内游乐场玩耍。从我家搭巴士到 Changi 机场要一小时。去的时候还蛮开心，不料我儿子在回来的路程情绪失控。可能是用餐前肚子饿过头，或是因为地下巴士站太吵。他开始是又捏又扭我的手臂，然后用指甲抓我。然后在巴士上尖叫，甚至企图攀爬前面的椅子! 我给他包包抱，他将包包往后扔，还好乘客把包包传回来。我让他听他通常会喜欢的音乐，他把耳机大力地拔出来。我温和地数到十，希望他能稳定下来，可数到了十他好像又要发作了。怎么办？可怜的妹妹一个人坐远远的，我也照顾不了。我只能祷告。

嗨，这么漫长的旅途，我们几时才到家？我开始唱诗歌，边唱边拍儿子的手臂，然后拍他的胸。就这样，慢慢的，儿子终于缓和下来。这时，有一个乘客下车前，很善良又很诚恳地对我说: 你是伟大的妈妈。我听了， 紧绷的肩膀立即松懈下来，眼泪也开始一颗一颗地往下流。上帝啊，原来你一直都与我同在，眷顾着我。你确实是我的避难所，我随时的帮助。就这样，上帝给我勇气和力量度过一次又一次的难关。

上帝通过他的话语给我很大的安慰: 

In this world you will have trouble "...在世上你们有苦难"

啊，上帝，我经历的你都看到，也都明白。

约翰福音 16: 33 继续说：

But take heart
但你们可以放心

I have overcome the world
我已经胜了世界。”

上帝也给我写作的爱好和能力，让这些经历和当中所学习的功课能够成为别人的安慰和帮助。我出版了<进入我的世界> (www.come-into-my-world.com), 当中收集了新加坡31个自闭症故事。我也开始到处分享我的经验，希望能让更多人明白什么是自闭症。

感谢主，在这时期，我看到儿子逐渐的进步。他讲多一点话，也比较明白我们跟他讲的。他的情绪也渐渐的缓和下来，不再容易发脾气。我看到他的可爱 - 小小的东西能让他那么灿烂地笑起来。他学会看书，写字，弹钢琴。虽然他还是不会回答问题，很多事上都要有人监督，毕竟他不再是我家的龙卷风，反而变成了我们家安静的开心果。

我不知道为什么上帝要让我有一个自闭症的儿子，但我相信他是爱我的主，他给的礼物没有一样是不好的。他也是无所不能的救主，我必要在甘泉和我的生命中看到一次又一次的奇迹。愿荣耀归于这位用舍己的爱保护我们，并爱我们到底的主。

I have a son, Calder, who is 13 this year. He is autistic, hence could not communicate well. Even simple "yes" or "no" questions would not yield clear answers from him. He's like an alien from outer space - he couldn't speak our language and didn't understand what we said; he didn't even seem to understand what we were doing. Hence he was often in a state of insecurity and would very easily melt down.

After becoming his mother, I finally understood what "surrender" means. When he cried sadly yet could not tell us why, I could only pray. I said: "Lord, only you understand him and can comfort him; I entrust my son to you." When he melted down outside the home, crying and kicking and wanting to run away, I could only cry out to God - Help!

Once, I brought the two children to an indoor playground in Changi Airport. It took us one hour to take bus from our home to Changi Airport. Calder was rather happy when we made our way there. Unfortunately, he melted down on the way back. It could be that he was too hungry before we had our dinner. It could also be due to the noisy underground bus stop. He started by poking and twisting my arm. Then he tried to scratch me. On the bus, he screamed and actually attempted scaling the seat in front! I gave him his haversack to hug, but he flung it behind. Fortunately the passengers passed the haversack back to us. I tried letting him listen to his favourite music, but he yanked out the earphones. I gently counted to ten, hoping it would calm him down, but when I reached "ten", he started getting agitated again. What do I do now? His poor sister was sitting alone far from us and I couldn't at all tend to her. I could only pray.

It's such a long journey - when would we reach home? I started singing hymns, singing and tapping Calder on the arm, then on his chest. Gradually, he calmed down. At this point, a passenger, before alighting, came to me. Kindly and sincerely, she uttered: You are a great Mom. When I heard that, my tense shoulders immediately relaxed. And tears started flowing and flowing from my eyes. Oh Lord, so you have always been with me and watching over me. Indeed you are my refuge and my ever-present help. In such ways, the Lord gave me courage and strength to overcome one difficulty after another.

The Lord gave me great assurance through his word. He said: "In this world you will have trouble..." When I read that in John 16: 33, I was so moved. Oh Lord, what I'm going through - you know, and you understand. The Bible verse continued: "But take heart! I have overcome the world."

The Lord also gave me the passion and skill in writing, so that my experiences and what I learned from them could be used to comfort and help others. I published "Come into My World: 31 Stories of Autism in Singapore" (www.come-into-my-world.com) and started going around sharing my experience parenting Calder, hoping  to enable more people to understand what autism is.

During this period, I saw my son's gradual improvement (Thank God!). He could speak more and understand better what we said to him. He also mellowed down and no longer flared up readily. I discovered his adorable nature - how the smallest thing could spark his brightest smile. He learned to read, to write and to play the piano. Although he still cannot answer questions, and requires supervision in many matters, at least he's no longer the hurricane in my house. In fact, he has become the quiet but happy treasure in my home.

I do not know why God gave me an autistic son. But I believe God loves me and would never give me a present that is not good. Nothing is impossible for God. I believe therefore that I would see miracles, one after another, in Calder's and my life. May all glory go to this God who protects us with his very life, who loves us to the very end.