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.

Getting A Diagnosis for Autism

Many parents write to us to ask if their children have autism, knowing we have a child with an Autism Spectrum Condition.

Our advise has always been to seek an expert who can give a good assessment and accurate diagnosis for autism. A good professional will also tell you strategies you can do to help support your child, if he or she indeed has autism.

However, finding a good expert to give a good assessment for autism in Malaysia can be very challenging and frustrating. So, with some help, I have compiled a list of experts you can check out in Malaysia, Singapore (it's just a drive, train or plane ride away) and Australia, where we have personal experience.


Malaysia

1. Early Autism Project Malaysia
Phone: +603 2094 0421
Email: info@autismmalaysia.com
Website: Diagnosing A Child With Autism - Early Autism Project Malaysia (EAP)
Address: Located somewhere in Bangsar, Kuala Lumpur

Early Autism Project's parent company is the Wisconsin Early Autism Project, which is ABA based.The Directors of EAP are Clinical Psychologist, Dr Sallows and Ms Tamlynn Graupner, an ABA consultant. Both are Americans. They have a team of local ABA therapists, who have been trained by them. We hear EAP is a good place to get a diagnosis, but it might be very costly to continue with support therapy with them. Give them a check.


2. Dr Rajini Saravananthan, Developmental pediatrician
Ramsay Sime Darby Centre
Phone: +603-5639 1212
Email: healthcare@simedarby.com
Website: http://www.ramsaysimedarby.asia
Address: Ramsay Sim Darby Health Care
Lot 2, Jalan Lapangan Terbang
Seksyen U2,
40150 Shah Alam, Selangor,
Malaysia.

Here is a recent press article about Dr Rajini and her work from 2014. She is an excellent doctor. Many friends recommend her. But with her popularity comes the long waitlist of anywhere between 1.5 to 2 years. We hear she is a warm person and great with children spending a good amount of time with the child and parents.

http://www.ramsaysimedarby.asia/eng/company-info/media/news-articles/the-developing-child

As with most doctors in Malaysia, phone would be the easiest way to contact Dr Rajini. You will get her clinic nurse who can help schedule you in. Many do not clear their emails regularly due to extremely heavy case loads.


3. Oasis Place
Phone: + 603 2276 9111
Email: enquiries@oasisplace.com.my
Website: http://oasisplace.com.my/
Address: Level 16, Menara Sentral Vista
No. 150, Jalan Sultan Abdul Samad
Brickfields, 50470 Kuala Lumpur, Malaysia.

This is a one-stop place which provides an integrated suite of intervention services - Clinical Psychology Consultation, Speech and Language Therapy, Occupational Therapy, Continuous Education and Nutrition.



Singapore
1. Autism Resource Centre Singapore
Phone: +65 6323 3258, Ms Alicia Chua
Email: arc@autism.org.sg
Website: Autism Resource Centre (Singapore)



Australia - specifically in Queensland, where we are.
If you google Clinical Psychologists - Autism - Australia, you'll find a list you can work from. Key in your location to narrow your search. Here are two whom we have met with personally and found great at what they do. And the last one is a clinic in Brisbane where we have attended workshops and met their doctors.


1. Dr Johann Eloff
Phone: +61 (0) 410 117 102
Email: reception@drjohanneloff.com.au
Website: http://www.drjohanneloff.com.au/
Address: Commercial Unit 2, 128-130 Alexandra Parade,
Alexandra Headland,
Sunshine Coast QLD 4572


2. Dr Winnie Lau
Phone: +617 3285 7888
Email: dawn@tonyattwood.com.au
Website: http://www.winnie-lau.com/Address: Professor Tony Attwood’s Clinic
4 Spry Court, Petrie Qld 4502


3. Minds & Hearts ClinicPhone: +617 3844 9466
Email: info@mindsandhearts.net
Website: www.mindsandhearts.net
Address: Suite 6, Lvl 1,
88 Boundary Street,
West End
Queensland 4101


I will keep this list as updated as possible. So come back every six months to check if the contact details have changed.

Thinking Outside The Box

Lauren with Fadia, her sitting partner in Primary 3.
Decked in National Costumes for National Day Celebrations.

We were driving home.


I asked Lauren about her day.


I got the usual reply, "Good!".


So I started asking more specific questions.


I found out it was her sitting partner's birthday today. And that they had cake at recess. Ok...


I asked more... And she told me the kids were playing "Old Maid" in class. But they didn't ask her to join in.


"What did you do?" I asked.


"I wrote my story Mom".


You didn't watch them play?


"I did!".


Huh?


I was confused, so I asked


"Did you watch them play or did you write your story?"


....Silence....


I could sense Lauren thinking her answer.


She finally said "I wrote my story AND I watched them play."

If you know Lauren, you will know that she always answers within the given parameters. This is the first time she has answered beyond the given set of choices. (Lauren was 9 years old, and it was November 2011).


Awesome!


Be Grateful for Every Little Success.

Helping Lauren Change Negative Thoughts to Positive Thoughts

Lauren’s latest visit to Dr Johann had her working on the table below.

Chart to Identify Unhelpful & Helpful Thoughts

The purpose of this exercise: How to change negative thoughts to positive thoughts.
This came about because Lauren has a big (gigantous) fear and dislike of water. She thinks she will drown in the pool. She tells us it is dirty. She hates the feeling of being splashed even with sprinkles of water. So she shuns swimming as much as possible.


Kevin and I, on the other hand are trying to get Lauren to understand that she must learn to swim, because it is a life-saving skill. She does not need to love it, but she should try to live with it.


So, for many years, we have been trying to get Lauren to swim – with and without her swimming cap, with and without her float. One time, she tried swimming without the float, and she felt herself sinking. That freaked her out even more!


And then there is the vomiting after the swimming. Intense emotions of triumph that she has managed to swim without her cap and float, coupled with even more intense anxiety…results in Lauren rushing to the toilet to vomit after her swims.


But she has agreed she will continue trying. She is a real trooper. Such resilience. And I must remind myself to continue to encourage her and be more patient.


So, our task is to identify negative thoughts, for example,

NEGATIVE THOUGHTS
I might drown if I swim at the deep end without my float.
My book will be destroyed if my friend touches it.
The movie I am watching will be gone if my brother uses the laptop

Thought Process Leading to Emotional, Physical and Behaviour Changes

POSITIVE THOUGHTS

We discuss with Lauren the process that leads her to positive thoughts like,

“You can practise swimming without your float at the shallow end first, so you know you won’t sink without the float.”
“Think about how you can operate the laptop and find the spot where you last stopped at the movie.”


This exercise hopefully helps Lauren (and all of us who are more pessimistic in nature) to build new pathways in her brain. From default negative thoughts to thought-out positive thinking.


Cup Half Full or Half Empty. How do you see your life?

1001 Questions

I had an office costume party once.

Lauren and Luke got a look at my costume, as an Arabian king, the night before. And they were so excited!

Look Mom...No Eyelashes!

I remember a time two years ago, when Lauren was 10 years old. It was March 2013.

I was just putting Lauren to bed. It had been a good day. Lauren had just recovered from 3 days of fever caused by a throat infection. Her fever was finally down and she had a fun day at home - watching tv, doing some paces (school revisions) and playing with her dolls. 

After bedtime prayers, she closes her eyes for me to kiss her on her cheek. 

It is then I notice...her eyelashes looked...CROOKED!

She had cut them!!! 

I freak out. 

She freaks out because I am freaked out. 

After loads of scolding (read: loud voices from an almost hysterical mother) and crying, Lauren promises not to do it, again, ever! 

She worries that she won't look pretty anymore. And more importantly, she also knows that she could have really hurt her eyes. 

Her Father and I tell her that they will most likely grow back, but it will take time. Apparently over 3 months, according to google. 

Sigh, Lauren's eyelashes were the prettiest. Long...with curls.

Four days later, I ask her what she was thinking when she decided to cut them? 

You know what she said? 

"I was trying to be Rapunzel. She cut her long hair. But Rapunzel said, "Don't worry. I shall continue to be strong in my spirit!"

Lauren goes on, "Mom, I'll be strong in my spirit too, even with my cut eyelashes!".

Be Strong, in Spirit.

First Playdate Ever!

It was almost the end of Lauren and Luke’s first summer holidays in Australia.

Lots of firsts in beautiful Sunshine Coast, because Lauren had her first playdate (ever!) right then – Yes! We managed to arrange one. January 15, 2015. What a date!

Her movie date was with a lovely friend from her old 5J class, with a wonderfully understanding mother. Thanks Erica!

Lauren & Brooke, 15 January 2015

Brooke came over to watch the new Disney movie called “Big Hero 6”.

Of course Lauren had already had a preview of the movie and had to be reminded many times to not let the cat/s out of the bag, and narrate Brooke through the whole movie.

Enjoying Big Hero 6 together

Anyways, the date was a decent success.

Brooke and Lauren ended up watching two movies, since their conversation time ended in about 5 minutes after the first movie. And Brooke's visit to Lauren's bedroom took just another 5 minutes.

Thankfully, they enjoyed their nachos with sour cream and salsa, and pizza and after which they said "Bye...see you at school"!

Friends are great gifts from God. 

No In-Betweens for An Aspie

The ASC brain is an on-off switch when it comes to emotions.

I am either happy or sad.

I am either very angry or not angry at all.

There are no in-betweens.

So how do we get them to try and recognize the “I am going to get angry” feeling?

Using a feelings temperature check and defining the different tangible changes their body feels can be one way.

For example, heart beats faster.

They start sweating.

Fists start clenching.

Feelings Thermometer: Helping ASCs Identify Emotional Signs

Once they start recognizing these signs, then they can use strategies to calm down.

Strategies that help them move their behaviour from primal instinct (fight or flight) to rational thought and rational behaviour.


Two strategies for Lauren, to help her calm down:

1. Count 1-100…backwards in multiples of two or four or six
Dr Johann advised that the more she has to use her brain to process something, the faster she can move from her primal instinct of explosive anger. This helps her use more of her pre-frontal cortex.


2. Breathing exercise
Breathe in, hold for 3 seconds. Then breathe out. Do this until she feels less upset.

Breathing Technique to Relax

Breathe In...Breathe Out...Breathe In...Breathe Out...Breathe In...Breathe Out...Feel Better?

My Ang Moh Char Boh and Ah Pek

Almost everyday, I am reminded that Lauren and Luke are so different in the way they speak.

One learns from books, movies and TV shows and therefore speaks in a totally American accent with proper English. That's Lauren.

Luke, her brother, on the other hand picks up on the English peppered with everyday local nuances from Malaysia and Singapore. Let me show you what I mean.

One day, Lauren sees me scratching my finger. 

She says, 'Mom, why are you scratching your epidermis?" Wow, where did you learn that word? 'In Science class. It means your skin'. 

Nice job, Lauren! 

So, Ang Moh! ie. very English!

Lady Lauren

Next day, I am walking Luke home from Chinese tuition while we were still in Singapore. 

And he says, 'Mom, you know, you can also call "ciau-ciau" with another word!'. 

Ciau ciau is the Hokkien word for penis.

Curious, I ask him, 'OK....what other word can you call it?', not really knowing what to expect. 

"You can also call it...cock! Yah, you can call it 'cock'! Cool right Mom?'. 

Cool? I'm not so sure. Ah Pek...for sure.

Luke in his typical Ah Pek sitting stance

I wonder what will become of Luke's English now that he is in Australia...:-P

For those who are not from Malaysia or Singapore, an Ang Moh refers to a Westerner. Char Boh means girl. So Ang Moh Char Boh means Western Girl. And an Ah Pek refers to a local China-Man.