Autism Checklist

Since we found out Lauren had autism and more so, after starting this blog, many friends have sms-ed, wats-apped and emailed us to tell us that their suspicious that their child, nephew or niece and friend's kid has autism. And two questions always follow: either do you know what are some signs of autism? or Who should I see?

I have covered some of the specialists who can help assess your child in Malaysia and Singapore and Australia in an earlier article here:

Always remember there is no one indicator. If a child has autism, he or she should display a range of indicators to suggest autism spectrum disorder.

There are many checklists. I have used the checklist from Autism Australia here:

Social interaction and communication

• looks away when you speak to him/her

• does not return your smile

• lack of interest in other children

• often seems to be in his/her own world

• lack of ability to imitate simple motor

movements eg. clapping hands

• prefers to play alone

• very limited social play (eg “Peek-a-Boo” )

• not responding to his/her name by 12 months

• not pointing or waving by 12 months

• loss of words previously used

• unusual language pattern (e.g. repetitive speech)

Behaviour

• has unusual interests or attachments

• has unusual motor movements such as hand

flapping, spinning or walking on tiptoes

• has difficulty coping with change

• unusual distress reaction to some everyday

sounds

• uses peripheral vision to look at objects

• preoccupation with certain textures or avoids

certain textures

• plays with objects in unusual ways such as

repetitive spinning or lining up

For more information, go to www.aspect.org.au

Short Stories From Lauren

This is a post simply showcasing Lauren's little stories. It started as a means to check if Lauren understood the new words she was learning from her English words & spelling list. 

My instruction:

Pick 5 words from your spelling list and write one to two paragraphs using those words. 

Hmm, I was quite pleasantly surprised by her ingenuity. She definitely writes better than I do. 

Here is her first story. Words in upper case are the spelling words she has learnt:-)

The Nasty Rogue by Lauren Sim

In a crowded city, there lived an evil ROGUE who does bad things to people and gives them bad luck. He always plays tricks on people like the time he released a PLAGUE of pests at a birthday party! The government has had enough of the destruction going along with the rogue. They sent the cops to catch him and then they showed him the PLAQUE of serious laws.

The rogue must do something to be good. It is when he saw a SYNAGOGUE, a few blocks away from the city. So, he went there. He prayed and apologised for what he did wrong. At the next day, the rogue changed his attitude and became a UNIQUE gentleman to the whole city. The city liked his new change and everything is back to normal again.

Back with a new story next week!

Why Lauren does not like Birthday Parties

Excerpt from Emergence. Page28. 

"...Like birthday parties. They were torture to me. The confusion created by noise-makers suddenly going off startled me. I would invariably react by hitting another child or by picking up an ashtray or anything else that was handy and flinging it across the room." Temple Grandin


This is the story of Lauren's first birthday party.

The birthday girl. Lauren at 4 years old.

November 2006.

Lauren was four years old. Luke was one month old. Kevin and I thought it would be great to have a double celebration for Lauren's birthday and to celebrate moh-guek (Full moon celebration for Luke's first month). So clever, right?....This was such a bad bad idea.

We planned the food. Kevin and I searched the internet for kids' games. We stuck the house full of treasure hunt pictures. Cute little prizes were bought and wrapped. And a lovely friend made a beautiful chocolate cake for Lauren, decorated with pictures of a colourful rainbow. I can still remember the cake. It was very pretty.

I think we had about 30 kids running around our home. Add on their parents and some with grandparents, and you can imagine our home bursting at its seams with people, chatter, laughter and simple, plain noise. Add to this, closed doors and windows to allow the air conditioner to cool down the house.

We never saw it coming.

All the build up from the incessant noise. When it came time for the cake to be cut, everyone gathered to sing Lauren her Happy Birthday song. So we sang....

Happy birthday to you
Happy birthday to you
Happy birthday to Lauren
Happy birthday to you....
Short silence...and...we cut the cake...everybody goes....Yayyyyy...CLAP, CLAP, CLAP...!!!!!
..........
............
.............followed by....
the loudest, most piercing SCREAMMMMMMMM.....from Lauren.

She shouted at her guests. Their parents. And then she burst out crying, and Kevin had to rush her to her bedroom to calm her down.

And that...was the highlight of our party. Shock! Disbelief! Every terrible feeling you can imagine. I think that was when it really hit us that we had to admit we had autism in the home.

Lauren after the party. No sign of what happened before.

These days, we celebrate birthdays quietly. Just family. Gentle birthday singing. Lauren is enjoying her quiet birthdays. She prefers me not to make a fuss about them with her school mates. So no birthday cakes or cupcakes for the school anymore.


She likes the cakes, she just does not like the fussing around and all that attention.

Birthday celebrations are quiet affairs these days. Lauren's 6th birthday.

Sitting next to you doing absolutely nothing, means absolutely everything to me.

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.