Help Me Understand Sensory Input

You see your child.

Naturally your hand goes to stroke her hair.
You probably give her gentle hugs.
You hold her hands when doing activities together.
Natural instincts. Very natural gestures.

But this child hits your hand away.
She squirms and stiffens up when you hug her.
She jerks your hand away from hers.
What is wrong?

I asked myself this questions so many times with Lauren. Especially being my first child, and being a first time mother, all that anxiousness of wanting your child to respond positively to your cuddles, hugging and display of affection. What she did seemed so much like rejection. It was really difficult on some days to tell myself that it was not rejection.

Some adults with autism have described these seemingly normal touches as extremely uncomfortable. Like sandpaper scratching their skin, like needles poking them.

This kind of responses are unusual to typical people. They may be due to Lauren's inability to integrate incoming sensory input. If she cannot make sense of it, she is better off without it, so she will push away these gestures.

Gooey starchy and FUN therapy. Lauren at 5 year old, 2007

When Lauren was about 5 years old, I used to make bowls of colourful starch. Once or twice a week. We had a spacious balcony in our home where we would place our little stools. Lauren would strip down to her underwear and I would ask her what pictures she wanted me to draw on her body.

We would spend the next half and hour drawing Ariel the mermaid princess, Beauty, Cinderella, sometimes even Pooh Bear and his friends on her legs, and arms, face, torso, thighs. It wasn't uncomfortable for her. It was fun! It was therapeutic for her senses.

Today I can stroke Lauren's hair and she enjoys it. I can stroke her hand and give her hugs. She loves them. And I love that I can do it.

We did other activities with Lauren. We wrapped her smaller joints like knuckles and fingers with plasticine. Some parents brush their children's skin. All with the purpose of helping them to integrate sensory input and make sense of the incoming sensory.

Some parents never get to hug their children because the sensory processing disorder is much more severe. While it is really tough on our emotions, it is extremely challenging for the child too. Each child also responds different to therapy. What works for one, may not work as well for another child.

Then comes the perseverance to try different methods until one works. We must persist in the therapy that is working. This can take weeks and months before we see improvement. And one day when you see your child responding to your hug, with her own hug....my...how precious.


A river cuts through a rock not because of its power, but its PERSISTENCE.

Like a Horse with Blinders

Maybe it was Lauren's diagnosis of autism that made Kevin and I a lot more conscious that we needed to physically spend time with her to engage her. We could not take the easy way out to just leave her with the TV and video (so 90s I know) and cds (better?) with her.

Much of what we take for granted like, kids learning from their surroundings, picking up our good and bad nuances, Lauren could not do. If you imagine a horse walking with blinders on, that would be how Lauren learns. A horse with blinders is focused only on the task ahead. Without the blinders, the horse would be distracted by its surroundings and unfocused on walking or galloping straight ahead.

Illustration by Luke Sim, copyright 2015

When Lauren is watching her videos, she is completely focused on her show. When she is playing with her toys, her attention is only on her blocks and dolls. And now when she is reading her books, she is fully immersed in her stories. Even when she is just walking along the park or road, she is focused on walking...only.

Her ears do not pick up on the spoken conversations around her, nor do her eyes observe the social activities around her. Unless called by name to watch or listen, Lauren does not.

This explains why Lauren speaks with an American accent. She has never set foot on America, yet she speaks like one. 99% of the shows she watches are American. Add on to this, 99% of what she reads are written by Americans. Dorky Diaries, Big Nate, Diary of a Wimpy Kid...ahh...the proliferation of American culture. Material for another article brewing here...:-)

Lauren opens her mouth and you hear American slang words complete with the accent!
OMG!
What the...!
Gross!
Awesome!
Totally rad...

And when talking to Lauren, the worse thing I could do is, tell Lauren to do something with my back turned to her, and of course hers to mine, and nothing ever happens! When we want Lauren to pay attention to what we are doing or saying, we first
1. Call her by name
2. Ask her to watch us
3. Then Kevin and I proceed to show her how something is said or done
Her eyes have to be on the task and not wandering somewhere else.
4. And lastly, we ask Lauren to repeat to us what we have shown her or told her

Why do the steps have to be broken down? Remember my article on Sensory Processing Disorders, where for a person with autism, they have many other sensory input coming at them, all at the same time? http://www.whatsnextkids.blogspot.com.au/2015/04/we-have-seven-sensesreally.html

Imagine trying to listen to what your friend was saying, but there was also the radio blaring in the background, construction happening somewhere further off, and lights flickering on and off. Makes it quite difficult to concentrate on your friend, yes?

Welcome to the life of Lauren. Too much input. One mind. One set of ears. One set of eyes. Horse with blinders, so they can cope without a sensory overload.

Next time you speak with a person with autism, take it one step at a time. It isn't because people with autism are slow. Seeing Dr Temple Grandin, Stephen Wiltshire, Naoki Higashida have shown us the opposite. They are just wired differently from you and me.

Thanks for sharing my thoughts. Share with me yours, ok.


Tolerance, Compromise, Understanding, Acceptance, Patience - I want those all to be very sharp tools in my shed - Cee Lo Green-

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/