Today My Friend Becomes A Parent

29 April 2015. My friend will be wheeled into the operating theatre for her planned C-section at 2pm. She and her husband are waiting with excited anticipation to welcome their first born into this world. This brings me back almost 13 years ago and then 4 years later as Kevin and I welcomed Lauren and Luke into our arms so many years ago.

Lauren, born 11 Nov 2002

Parenthood is such a big word. It carries with it responsibilities. Some say the responsibility of caring for your child doesn't stop when they leave home. It might be livelong. Parenthood carries sleepless nights. Making sure your children eat well and sleep well. Making sure they get a good education. Helping them to prepare for independence and to set them up for a good future. Parenthood carries with it hope, faith and love. Unceasing love, even when your child has done wrong. You discipline them, and you continue to love them.

Luke, born 2 Oct 2006

But being parents do not have to be our responsibility alone. There are people who want to share the joy and pain of bringing up our children. Precious aunties and uncles, and close friends. If we let them. If we loosen our hold on our children a little, there are many who would love to help be part of bringing up our children.

When we suspected Lauren had autism, we reached out to our family and friends.

Some had disappointing responses. They felt they knew better and wanted to continue to relate to Lauren on their terms (only). They didn't want to really listen to what was going with Lauren and with us, and I think maybe it was too much information, too much mumbo-jumbo about sensory difficulties. Some would tell me, "If there weren't so many children with autism during my time, why are there so many now?". "Are you sure the doctors aren't just over-diagnosing?". "I think you parents today are just over anxious." "We should just let the child be. They will grow out of it."

And then we have the precious loved ones. These were the family and friends who would just listen. They asked questions to know more, not to question our decisions. They asked to understand Lauren better. And they made changes to their behaviour and approach to relate to Lauren better.

Those were the ones who fully supported Kevin and my decision to seek therapy in Kuala Lumpur, Singapore and Australia. They supported Kevin and I when Kevin went back to night school for his diploma in Special Needs Education and Learning Disorders.

They gave us a place to stay when we had to be in Singapore for rows of two weeks for music therapy. They helped keep us in constant prayer as we trudged through hours of therapy for Lauren, and hours of stress managing full time work, two kids and night school.

They celebrated little victories with us. And they encouraged us to pen our experiences down on blog-paper:-)

So, today, I am reminded to be thankful for my family and friends. You know who you are. Lauren and Luke are a product of your nurture and love as well.

If Kevin and I don't say it enough, we love you. We appreciate you. Like what someone wise said yesterday, "You are our unwavering pillar of confidence!".

Lauren and Luke: Best of Friends

When we found out that Lauren had autism, our number one fear was communication.

Would Lauren be able to talk? She had words then, but could she string them together to make conversation with us and people around her?

Our number two concern was friends. People with autism were not known to be sociable. Would Lauren gain enough social skills to make a few good friends?

That was 7 years ago.

Today Lauren is 12 years old and can speak. Although her topics of conversation are normally centred around her favourite things, we are thankful she is able to put her words together and tell you pretty decent stories about things she really like, like her books, and movies and songs...is there anything else...hmm...no, not really....

Lauren still has difficulty speaking smoothly especially when she is upset or scared and anxious but we're working on strategies to calm herself down and find ways to communicate.

How about friends, you might be wondering? Has Lauren made friends?

Yes, she has. She knows the motions of how to say Hi? How are you? And can ask a few questions on what they like and in turn tell them what she likes. She has learnt that in communication. But she has not been able to get much further than that. She is still struggling to go beyond two to three minutes of conversation. She finds it difficult to keep the to and fro of talking in motion.

Lauren has a friend, called Brooke, do you remember her from Lauren's first playdate? I wrote about it under First Playdate Ever, http://www.whatsnextkids.blogspot.com.au/2015/03/first-playdate-ever.html.

Brooke and Lauren have had one or two pretty decent conversations. Lauren tells Brooke about the book she is reading. Brooke will ask her what she likes about the book. Lauren replies. Brooke listens patiently. And that's so far how it has gone. We hope Lauren will be just as good a listener one day when Brooke tells Lauren what she likes. We are planning to arrange another playdate for them next week. Tell you more then.

Lauren has another friend with whom she seems to be able to spend hours with. OK, maybe that is exaggerating it a little, but they can sometimes spend a whole morning or afternoon together.

This friend is Luke, Lauren's little brother.

They both like three things: movies, music and books. And it all started with movie nights here in Australia.

Buddies: Lauren and Luke

Going out to the movies are an expensive affair here. AUD$15.00 - 18.00 for a cinema ticket. And we arrived in winter last year. So, we decided, why don't we just watch movies at home together on Friday and Saturday nights. We chose old movies that Kevin and I liked.

Star Wars - all six episodes.

Back to the Future The Trilogy.

Indiana Jones and all its sequels...the kids loved them.

We went on to children's movies. Home Alone 1, 2, 3 (maybe 4 also!), Dennis the Menace...

One day, we stumbled upon a movie, even I had never watched before (that is rare) which had really good Rotten Tomato ratings. Ok, don't always believe what Rotten Tomatoes rate because movies are personal, but they are a decent guide.

Have you heard of Pitch Perfect?
We watched Pitch Perfect together and the rest...as you say...is history!

Now Lauren and Luke, when they aren't fighting, love spending time making up stories about the movies they have seen, they do mash-ups of the songs they like to listen to on the radio and from movies (mash-ups are blending songs together) and they let loose and boogie to their favourite songs.

Luke is starting to read books that Lauren love like Diary of a Wimpy Kid and Big Nate, while Lauren is starting to read books that Luke likes like Captain Underpants. We were nicely surprised when she even went to look for and borrowed a Captain Underpants book for Luke from their school library. She said she did that because her brother wanted to read book 6 (Lauren also borrowed Captain Underpants book 3 and 4 for Luke later).

It's quite amazing to see them enjoying their time together.

You must be wondering, "Don't they fight?". Of course they do. In fact, sometimes it feels like they fight all the time. Luke just knows what buttons to push when it comes to Lauren. When they are upset with each other, it's like cats and dogs in the house but thankfully they love each other's company too because just as quickly they started fighting, the next second, they are laughing over some silly joke they heard in a movie.

What have I learnt from this? I learnt it by accident really.

Shared interests.

I wrote about the importance of nurturing different interests.

In this respect, we also need to nurture shared time for our kids.

Especially for Lauren who isn't going to naturally want to spend time with people. I have seen that given the right interests, she has initiated, to some extent, spending time with Luke. It also helps that Luke is a persistent fella. When his sister has felt like retreating to her room and into her own world, he always starts pestering her to talk, tell stories, look for videos on youtube together.

We're praying for Lauren to have a few girlfriends with whom she can spend this kind of time with too. It IS possible...don't you think so?


Create opportunities for our kids to find things they love to do, together.

How Interests Can Help Communication in Autism

There is this thing about writing.

Or type in today's technologically advanced world. I think it has to do with the fact that words help to communicate a person's thoughts, their feelings, their wishes.

CS Lewis once said, You can make anything by writing.

Indeed, you can write your fears away. We can calm ourselves by writing. And we can share our happiness by writing. Writing, typing, and swiping (for some!)......the use of words is such an important means of communication.

Lauren with Kevin and Helen (rip)

The little adventure reproduced in words by Lauren at 5 years old

Lauren always found it easier to write and type her thoughts. When she was younger, we would catch glimpses of her cheeky little character peering through when she got to write her messages to us by phone, always filled with a generous sprinkling of emoticons. 

Not the case when she has to talk. Her words are stilted, they take time to be formed, and most times come out with the tone that often gets misinterpreted. When asked, she would say that she finds it hard to bring the words in her head to her mouth.

Imagine how frustrating it is when you cannot understand a person. Imagine how much more frustrating when you cannot get others around you, the ones closest to you to understand you. It can make you scream out of frustration. Now you don't wonder why kids or teenagers with autism can throw such a tantrum. I would throw one mega tantrum myself!

Not being able to converse for a person with autism does not mean they do not want to communicate. They do. But we need to find ways that can help them express themselves. It is critical we help our kids to communicate, to express themselves.

How have some better known young friends with autism communicated. For Carly Fleischmann, it was typing on her computer. Naoki Higashida uses an alphabet grid to type out his words. For Temple Grandin, she has been blessed with the ability to both write and speak. These great examples have written poems, books, stories as part of expressing themselves. For some like Stephen Wiltshire, the famous English landscape artist, he was mute until age 5 because of autism. So he turned to drawing. He drew people, animals and through his drawings he found he had a knack for drawing buildings and landscapes.

The point is to find something - some call it a hobby, some say it is an interest or interests - where your child, with or without autism, enjoys. Something that can be constructive and which can help them express themselves. 

So with Lauren, her best friends today are her books. They are with her in every picture. They watch tv with us. Go shopping with the family and also sit near the dinner table. It is with her books that she finds solace. A place she can just be. You hear her laugh (like a cuckoo bird) when she's reading her fav books. And we're thankful she loves books because that is where she has learnt words. Many of them. They have in turn helped her communicate through her latest interest...writing scripts! I don't know where that will lead her to, but we're encouraging it. We've helped her set up her own blog to write her scripts. Let's see where that road leads us to!

Time and patience - Discover your child's inner interests.

We have SEVEN senses...REALLY?

I had some difficulty writing this. Mainly because I like my articles to be personal and insightful, not just about facts and information. After many drafts, I realised that I was just regurgitating loads of information and going about it all wrong.

So, this isn't an article educating you about the 6th and 7th senses in a human being. It is about understanding why many children, including both Lauren and her friends with autism and sometimes typical kids, behave the way they do with their bodies - arms, legs, head, fingers etc.

At school, we are taught that everyone has five senses. Sight, Hearing, Taste, Smell and Touch. Then when I was introduced to the world of Autism, I learnt two important things:

1. The five senses of a person with autism can be impaired and affect the way they receive and respond to those senses.

2. There are another two lesser known senses called the Vestibular sense and Proprioception. These two senses are internal senses and because they are less tangible, they are always taken for granted until and unless something affects them making their absence or lack of presence very obvious.

So first, a quick, simplified introduction to what the Vestibular and Proprioception senses do for us.

Have you ever noticed a child writing too lightly that the words can hardly be seen? Or on the contrary, have you noticed when a child presses his pencil down on the paper so hard that the paper tears, and the pencil lead breaks when he or she writes? The inability to adjust the pressure of the pencil to the paper indicates a proprioceptive impairment.

Proprioception is called the 6th sense and is about being aware of your body parts in relation to space - where your limbs are, whether you have left your feet dangling in the air, or are swinging your hands all over the place. It is linked to our nervous system to help keep track of and control the different parts of our body. So, the proprioception sense helps us control our limbs, know where and what it is doing without us having to look at them.

It is quite a difficult concept to understand because proprioception happens internally and we take it for granted when we are doing our everyday tasks, until of course, we lose this sense or it is impaired. With a dysfunctional proprioception sense, our brain cannot tell what our limbs and other body parts are doing, unless we are looking at ourselves, that is, we must use our sight to help us see what our limbs are doing, to compensate for dysfunctional connection between our limbs and brains.

The vestibular sense is also known as the sense of movement. It helps us maintain our balance in relation to our environment. So, whether we sit up straight with good posture or slump in our chairs, whether we have good eye contact and hold our head position upright in relation to where our body is, and whether we walk straight and comfortably as opposed to walking on tip toes or hopping and jumping while walking, can all be attributed to a normal or dysfunctional vestibular sense. It is also important to know that our other "regular" senses like sight, hearing and touch contribute and provide information to the vestibular system to help it work right.

If you can imagine that a person with autism can be hyper (very) sensitive or hypo (under) sensitive in their typical five senses, for example, in their hearing - Lauren is very sensitive to sudden, loud noises, causing her to cry or scream - or in their sight where certain light bulbs can seem like a stroboscope of lights and affect their focus in class, and some people with autism can be so sensitive to touch that the sand or non-natural fabric can feel like needles pricking their skin, this dysfunctional input of sound, vision and touch to the vestibular will just enhance the impairment to this 7th sense.

When Lauren was younger and had not yet received any therapy, she would often times sit on her head (come to think about it, she still does but only once in a blue moon - see the picture below. The moon was quite blue & bright that day!), she could not walk properly on her two feet.

She would always be hopping or skipping or jumping after four to five steps and Lauren was not able to sit upright. She would sit with her body slumped to the table or her body would be leaning to the left or right.

Where did you say my head was...?

Lauren has hyposensitivity to movement because to this day, she loves to swing as high as possible - honestly there are times I think she is going to literally fly off the swing! - and for very long periods. If I didn't ask her, she would be swinging for half an hour to an hour without even realising it. She, as you can see in the picture above, still likes getting into upside down positions.

When Lauren is seated, she likes shaking her leg, quite vigorously, that if the chairs are linked together, you'll feel a mini earthquake! Kevin and I normally sit near her, and with a simple placement of our hands on her thigh, she gets it and stops shaking her legs.

Swing me to the...moon! Best vestibular therapy for Lauren.
Picture by Colleen Sim, Lauren's aunty:-)

There are many exercises and activities we do which can help improve our vestibular and proprioception senses and that is why occupational therapy is an important component for children with autism. It helps their body understand, better manage and hopefully appreciate the environment around them - all with the objective of helping them live more comfortable and happier lives.


Be patient with me, I may have autism and my body isn't understanding our world as yours does. 


References - Signs on Proprioceptive & Vestibular Disfunction
http://www.spdaustralia.com.au/the-proprioceptive-system/
http://www.spdaustralia.com.au/the-vestibular-system/

Vaccination, Autism and Lauren - A Father's Perspective

Did we do the right thing by immunizing Lauren with the MMR (Mumps, Measles and Rubella) jab at 12 months old?

I ask myself this question to this day. It's not that I spend my every waking hour thinking about this, but when I see Lauren having an outburst, going through a bad day, struggling to communicate because of her autism, yes, this question comes to my mind.

Lauren was born on 11 November 2002 by C-section. Lauren was diagnosed with intra-uterine growth retardation (IUGR) - I really dislike the word "retardation" in this term - when Wee Leng was seven months into her pregnancy. So from week 28 onwards, Wee Leng had to go for weekly ultrasounds to monitor Lauren's growth and to ensure there was sufficient blood flow to her brains. Our Obstetrician wanted to deliver Lauren at 32 weeks. After further thought, he felt we could wait, so long as the ultrasounds continued to show good blood flow from Wee Leng's uterus to Lauren. All went well, and Wee Leng was wheeled into the operation theatre for her C-section when Lauren was 38 weeks old.

At birth, Lauren's paediatrician was surprised that she wasn't as tiny as her obstetrician had thought she would be. Lauren weighed in at 2.45kg. All checks came back normal and we were off on our parenting journey.

From little, Lauren was not good at latching onto the breast. She would constantly fall asleep early during milk feeds and we ended up bottle feeding all the expressed breast milk just to be sure she was getting sufficient nutrition. I had the wonderful pleasure of bottle feeding Lauren almost every night, while Wee Leng was busy expressing, and it was exciting seeing her put on weight. Her growth progression was normal and Lauren was an alert and happy baby.

Lauren at 1 1/2 years old, June 2004

I always have the picture of Lauren as a happy, laughing little toddler in my mind. She would laugh her lungs out at all the silly faces and strange noises I made. We had a close bond from day 1. She constantly fell asleep on my chest at night after the feeds. I remember feeling her peacefulness.

When it was time for her scheduled immunizations, we took her to her paediatrician. Every check up did not raise any alarm bells and she continued to progress and achieve her milestones. After Lauren's MMR immunization at 12 months old, we started noticing things.

Like many parents, we exposed Lauren to many popular educational videos. Barney, High 5 and Richard Scarry's BusyTown. Lauren loved them. She would sing all her favourite songs from these shows. Do the actions as she sang. We were actually very impressed with her memory and how she could carry a tune and also mimic the different character voices from the shows.

Then we started noticing awkward behaviours. Lauren would stick all her stickers in a straight line. She would line up her toys in a straight row as well. She would throw a huge tantrum if anyone were to accidentally knock a toy out of its place in the straight line.

These tantrums continued to get worse. They were more intense and went on for long periods of time. Lauren would get upset over the smallest things. Someone closes the car door instead of her. Someone flushes the toilet when she should be.

By three years old, Lauren was still not able to give the answer to the question of "What is your name?". She would echo the question and answer. It was about then, when Lauren was 3 years old that we decided we should get professional help to understand Lauren's development (or lack of) and tantrums.

After going back and forth to Hospital UKM and Sunway University to see two separate Clinical Psychologists, visiting hearing experts, even meeting with a reknowned Psychiatrist who wanted to medicate Lauren, we finally got an accurate diagnosis, and more importantly very helpful advise on how to help Lauren from Dr Winnie Lau and Dr Tony Attwood in Australia.

Fast forward to 2015. Lauren is 12 years old going on 13. She's pretty, has a loving nature, loves reading, loves music, and enjoys chatting with her brother on movies, songs and storybooks. She tells us she wants to have friends yet she struggles with making and keeping friends. She is learning her way around our social world and we are always so awed by her resilience and persistence to learn.

And to this day, we are not sure if we did the right thing by taking her for her MMR jab that day many years back. Would things have been different if we didn't? I don't know.

But we didn't take the chance with Lauren's little brother, Luke. He skipped his MMR at 12 months old and only received the immunization at 6 years old because it was a pre-requisite for registration into Primary 1 in Singapore. Luke is 9 years old today and a typical child.


What are your thoughts on this?

Sound Therapy for Autism

Back when Lauren was 6 years old, we signed her up for Samonas Sound Therapy.

This was administered by Mr Ingo Steinbach at his centre in Singapore. Over two weeks, Lauren would go daily to the centre for a half hour listening session. While listening, Ingo would immerse Lauren in play activities like puzzles, fine motor skills activities.

Lauren during a Samonas session, Singapore 2008.

From the first session, we could see fine improvements in Lauren. She was more calm, she could walk calmly, with better posture and balance and without twitching or feeling a need to skip after every few steps.

Overall, Lauren was also visibly better engaged. She was more focused. She had better eye contact. She was listening better. It was as if Samonas sound therapy was helping to consolidate all her other therapies ie. speech & language therapy, occupational therapy, drama classes. 

We completed three rounds of intensive Samonas sound therapy and then continued to follow through the therapy at home. Kevin would give Lauren a morning proprioceptive massage - he would massage all her joints from the big muscle joints in her arms and knees to the little muscle joints in her fingers and toes - while Lauren received her sound therapy through head phones. Ingo had taught us how to administer it ourselves, and we could also contact him on any questions we had.

According to Sensory Processing Disorder (Australia), proprioception is the process by which the body can vary muscle contraction in immediate response to incoming information regarding external forces, by utilizing stretch receptors in the muscles to keep track of the joint position in the body. 

In simpler terms, proprioception is the ability to sense where your limbs are and control them, without having to literally look at them.

Lauren received Samonas sound therapy for 3 to 4 years. It took a lot of patience, perseverance because as with any therapy there are no miracle cures, just plenty of consistency and monitoring to ensure there is an overall progression and of course many trips to Singapore!

There was also a lot of joy in watching Lauren slowly discovering language and helping her explore and express her own curiosity about the world around her.

No regrets.

Uncle Ingo and Lauren during one of her visit to Samonas Centre in Singapore

Live Life Wanting to Learn and You'll Live with No Regrets.


A little more about Samonas

Samonas is a personal (as opposed to in a group) listening programme. It is an auditory intervention programme using music and sounds from nature that have been engineered to support the development of specific functions and skills in an individual. Samonas is most effective when used together with other intervention therapies such as speech and / or occupational therapy, and not as a replacement of those therapies.

Samonas was created after 20 years of research by Mr Ingo Steinbach, a German sound engineer with a background in music, physics and electronics. The Samonas programme is available in Singapore and USA.

Learn more about the Samonas Listening Programme at their websites. Ingo is in the midst of consolidating these three sites into one, but until then, you can get more information here. All contact information is also at the websites: www.samonas.com, http://developmentalListening.org and http://academicListening.org

You can also message Ingo directly at https://www.facebook.com/ingosamonas.

I have also included this link where you can easily retrieve the Samonas contact details: http://www.samonas.com/B05/B05a.html

If you found this information helpful, please share it with your friends. We have!

Books on Autism which have Inspired Me

I love books. I wished I had time to read more but this is a bad excuse. Sometimes I just make lazy choices between taking a one hour nap - ahh...what luxury on the weekends now that the kids aren't in diapers anymore:-) or a half an hour Zzzzz and half an hour read!

When we found out Lauren had autism, a very insensitive doctor said to my husband and me, "You're taking this news very well. I expected you to be crying by now!"...to which I answered, "Well, I would prefer to discuss what we can do to help Lauren manage her condition than cry."


And that's when I started googling more about autism. My nephew is also on the spectrum so there was some basic knowledge. It was time to find out more, instead of wallow in self pity.

And these are the books I have found to be so so helpful. Love the picture? Kevin did an excellent job with this one!

Some of my favourite books on Autism

Emergence: Labelled Autistic by Temple Grandin

This was my first ever book on Autism. I remember bringing this book with me to an event we had for Nestle in East Malaysia. It was my daily bedtime read and travel companion during those few days! I love Temple Grandin. If I get to meet her someday, I would thank her for her very straightforward, honest opinions. Her writing is easy to understand, she uses simple language and sentences. And Dr Temple gives a great first hand insight into the mind of a person with Autism.


I have since read a couple more books by Temple Grandin: Thinking in Pictures, The Way I See It and I am now just starting on The Autistic Brain. You will see some familiar examples and similar experiences shared throughout her different books but I'm biased when it comes to Temple Grandin. I just love the way she writes and describes things. If you want to start with a book from Temple Grandin, I would recommend to start with Emergence: Labelled Autistic.


By the way, have you seen the HBO hit made-for-TV movie called "Temple"? Of course I watched it. I am a TV addict. More on that another time! Claire Danes played the title role as Dr Temple Grandin, she won an Emmy and a Golden Globe for it. Julia Ormond was also excellent as her mother. She won an Emmy for best supporting actress. And the movie itself won the Emmy for Best Made for TV movie. So if you're too lazy to pick up a book, watch this movie. It'll give you a pretty good insight into autism.



The Autism Sourcebook by Karen Siff Exkorn

Karen is mom to a boy who was diagnosed with Autism and through many, many hours of therapy, is now recovered from his previous condition. It's an amazing journey and even more amazing how dedicated Karen was in being the number 1 supporter through her son's intervention therapy - at least 25 hours a week! Some people say you never recover from Autism, that it is something you live with. Well, maybe yes, maybe no - that is up to you. What I like about this book is the way Karen has organized the information a parent needs to understand about Autism, what we can do about it, what therapy/methods exist and their pros and cons. It is very informative and also easy to understand. Indeed, a good sourcebook on Autism.



A Curious Incident of the Dog in the Night by Mark Haddon

I read this book because I heard from someone (don't ask me who, I cannot remember!) say it is a book about a boy with Autism. Well, it isn't. Not really. It is never said explicitly anywhere in the story that Christopher (the title character) has got autism, but you get a sense that he might have this condition through some of the things he says for example this one,

"I got Siobhan to draw lots of these faces and then write down next to them exactly what they meant. I kept the piece of paper in my pocket and took it out when I didn't understand what someone was saying. But it was very difficult to decide which of the diagrams was most like the face they were making because people's faces move very quickly."

Anyway the reason I like this book is because it is well written, it's funny and it's quite amazing how different Christopher (and potentially a person with Autism) actually sees the world. Very differently from how we experience the world.


Latest book update:

The Reason I Jump was written by Naoki Higashida when he was just thirteen years old. He is now 22. This book has just recently been translated into English by a husband and wife team, Keiko Yoshida and David Mitchell, who also have a son with autism. Written Q&A style, I am finding this book interesting because it is giving answers to why people with autism do some of the things they do! Haven't you ever wanted to ask your friend, child, sibling with autism..."Why do you make a huge fuss over tiny mistakes?" or "Why do you wave goodbye with your palm facing yourself?"...well I have and now I know.

So there you have it. The books I would recommend you to read if you want to know more about autism.



"Read about me and you'll discover I'm pretty fun to get to know..." Autism.