Sunday, 13 August 2017

Getting our Inner Science Geek on!!

Today is the start of National Science Week here in Australia. National Science Week is an annual celebration held in Australia to acknowledge and highlight the contributions of Australian scientists. Everyone and anyone can be involved, there are events held throughout Australia. One of the aims of National Science Week is to encourage younger people to become interested and fascinated with the world of science.

Have I mentioned before that I love all things science? No? Well, I love all things science!

For as long as I can remember I have always been interested in science. In primary school I can recall that I did an experiment on training the common backyard mini beast, the Slater!!

All though high school, science was one of my favourite subjects - it was when I was able to escape into a world that I understood. When I was in Year 11, I did a week of work experience at our local Natural History Museum in the marine science department and I fell in love with the idea of becoming a Marine Biologist. This also started my love of scuba diving.

After finishing Year 12, I studied science at university and accidentally fell into the role of a Science Education Officer for the Northern Territory Branch of the CSIRO Science Education Officer.

I found my calling - developing and presenting a range of hands-on science sessions for school age children. I travelled throughout the Northern Territory and the Kimberley Region of Western Australia presenting a range of science programs to children of all ages.

Through my work for the CSIRO I was nominated and became a finalist twice in the Young Australian of the Year awards. I also received a Queens Trust Award for my work with the CSIRO.

My aim for my love of science was to spread the love of science to children. I was always of the belief, and still am, that before we can have all these amazing Australian Scientists, we need to have children who have an interest and fascination with science.

Through our Autism journey and O and L's diagnosis process, I have come to realise that my fascination with science as a child could have been considered an obsession. Science and Music were two topics that could keep me entertained for hours on end.

Now that I have my own children, I want to impart my love of science onto them. Luckily for me, O is VERY interested in science. In fact, she loves the topic!

This morning we made the spur of the moment decision to head into the National Science Week Festival to get our inner science geek on. And I am glad that we did.

Both O and L had a ball (and just quietly so did I!)

They were both fascinated by the virtual hatching turtles that they were able to view through an iPad - don't you love how far technology has come!

They are both drawn to animals, so a visit to the reptiles and the cuddly animals was a must! L becomes so relaxed around animals. It was quite noisy at the festival and while in with the cuddly animals, I could see that L had completely zoned out and was not bothered in the slightest by the noise around him.

Both O and L are fascinated with the idea that Mummy used to Scuba dive and L is desperate to be able to give Scuba diving a go. Well today, he was able to. Albeit through a virtual reality mask. He loved it. They both waited patiently for their turn and when they finally put the virtual reality mask on, their were enthralled.

L was a little lost to start off with as the gentleman was explaining what L was seeing in terms that were way over L's head. As soon as I mentioned that L had autism, the gentleman completely changed the way that he was engaging with L. Someone has had some Autism Awareness training!

L loved the mask. He was spinning in his chair to see everything that the gentleman was explaining - the virtual tour was one of the dive trips that the team from the AIMS had done. From getting ready on the boat, to jumping into the water, swimming down to the sea floor and viewing all the animals. There was also a wreck that the divers were exploring but L was more interested in the sea animals. He was getting lots of giggles as he was spinning in the chair and reaching out to the sea creatures saying "get back here!!"

They both loved exploring the variety of sea sponges and kelp that were on display. A great sensory display!

O was in her element when creating simple circuits - another cub badge that we can get signed off! She did a great job at assisting L to create a circuit too.

Unfortunately for my little superheroes the Festival was incredibly busy - this in its itself was wonderful to see. There were loads of young families enjoying the displays. This just made the hall very loud and very busy, so we needed to leave before my little superheroes entered into sensory overload.

And the verdict from O and L - "That was fun Mummy! Can we go again!"

They both just see a trip like this as fun and play. I see the education and therapy potential. And I get to whip out my inner science geek!!

Friday, 11 August 2017

The Autism that You DON'T see.........

"Oh, L is fine at school!"

"We don't see any of that, O is the model student!"

"Really, O/L is like that at home?"

These questions, these statements, can make interactions with teachers, educators and medical professionals quite uncomfortable. In a blink of an eye, questions and statements like these can turn a conversation from a pleasant one into, well ........... hackles become raised, voices become emotional ......... you get the picture.

Questions and statements like these can make the child's behaviour seem as though the parent is at fault and this in turn can cause us to question every little decision that we make and have made on our child's behalf.

Questions and statements like these cause a parent to shut down and not want to bring up issues with those who should be supporting them, instead of questioning them, for fear of the underlying judgement from others.

Questions and statements like these really highlight the autism that you don't see unless you are in the immediate family unit.

It really is a case of the autism that you DON'T see.

You see a child who is so rigid and seemingly unwilling to compromise on anything that their behaviour becomes annoying to you. The child who is acting like a spoilt brat.

I see a child who wants his world to stay the way that it is because then his world is predictable. I see a child who doesn't want to stray from her predictable world because the minute that her world becomes unpredictable, her anxiety is provoked into action and she becomes glued to one spot unwilling and unable to make any moves. I see child whose anxiety is like a tightly knotted rope and until that knot is loosened, she is physically unable to move or speak or participate in her much loved activities, including school work. A child who is not yet sure how to loosen the knot of anxiety. I see a child who is desperately trying their hardest NOT to enter into meltdown mode. 

I see a child who has strict and often very complicated routines and rituals for simple every day activities. And these routines and rituals have to be done the same way. Every. Single. Time. The tiniest deviation from these routines and rituals can result in an explosion of a huge magnitude.

You see a child is happy, who is chatty and gets along well with others but who can be very shy at times.

I see a child who knows that to stand out is a bad thing so she is compliant all day. I see a child who badly wants to fit in with others around her and yet she is unable to because she just does not understand the social interactions of others. I see a child who then struggles to keep it together all day that the minute she arrives home and walks through the front door, her pent up frustration and anger explodes. I see a child who knows that we are understanding and will remain calm so she feels safe to show this other side to us. I see a child who breaks down in tears because he knows that he is different and doesn't yet understand that different is good.

You see a child who is unable to focus on their work and is becoming disruptive as they move around the classroom or as they start to vibrate in their chair. You see a child is unwilling to do their school work unless they are removed from their classroom.

I see a child who is in sensory overload by their surroundings and is physically and mentally unable to focus until they have had a sensory break. I see a child who needs regular sensory breaks to assist them to focus. I see a child who is beginning to understand they need to have a sensory break but is not yet able to find the words to communicate his needs. I see a child who views being removed from their classroom as a punishment not as an opportunity to complete their school work.

You see a child who is rude or ignorant because they are refusing to speak or interact with those around them.

I see a child who is in sensory overload by all that is going on around them and the only way for them to cope is to shutdown and to retreat into their inner self.

You see a child who is a fussy eater and who you believe should be made to eat the food that is put in front of them.

I see a child with sensory processing difficulties. A child who has to wear the same clothes day in day out. Not for style, purely for comfort. I see a child whose skin feels as though it is literally crawling when particular textures are felt or eaten. A child who needs a lot of time and effort put in my others to try to increase the foods on their list of acceptable foods. I see a child who knows when we change a brand of food, they don't have to see the change in food label, they just know.

You see a child who is obsessed with a particular toy or subject and who you believe is spoilt as they seem to always have the latest toy, gadget or clothing item or costume.

I see a child who is in his comfort zone. A child who while wearing a superhero outfit is willing to venture out from his shell to interact with others. A child who is trying desperately to establish some common ground with others. A child who is willing to verbally communicate as he joins in on a conversation about his obsession.

You see a child having a tantrum.

I see a child who is in meltdown mode. A child who entered into sensory overload as a result of their surroundings. A child whose anxiety has become so crippling that the only way that they know how to cope is to let loose with screaming and yelling and throwing random objects. A child who desperately wants to escape their surroundings but they physically cannot find the words to voice their needs. I see a child who needs space and a parent who is calm with a seemingly unending patience level. I see a child who at that point in time is only able to communicate their needs through an angry outburst. I see a child who is not aware of their actions or words while they are in meltdown mode and yet is remorseful in the aftermath even though they have no recollection of the event.

What you are seeing is a mask, a front. 

Remember looks can be deceiving, not everything is as it seems to be.

The mask is the autism that you DON'T see.

Tuesday, 8 August 2017

I gotted spiderman on my head Mummy!

A few of the boys in L's class at school have recently had haircuts with a spider web track pattern cut into the side of their head.

As soon as L saw his friends at school, he declared "me want too please!" The last time he uttered these words was roughly a month ago and we'd thought that he'd forgotten about it.

Apparently not!

Today it was time for another trip to L's most favourite hair dresser and on the way there L told Daddy superhero that he wanted a spider man hair cut.

After gaining my approval, because he didn't want me to lost my you know what, Daddy superhero, L and O set off to find Sarah.

I can honestly say that I was quite dubious as to whether or not L would go through with his request and I will admit that I thought that I would come home to L with a partially shaved head as I thought that he might chicken out part through the hair cut.

I am very happy to say that I was completely wrong.

L now has spider web tracks on the side of his head and I must admit, L looks like a pretty spunky kid with his new haircut!

We really have found an awesome hairdresser who "gets" L!

Thanks Sarah.

P.S. L wants a lightening bolt next time!!

Monday, 7 August 2017

How does one communicate when the world can be confusing?

Up until his third birthday L spoke a grand total of roughly 20 words. A typically developing three year old, should have a repertoire of roughly 200 words. L was missing quite a number of words from his repertoire.

Whenever we mentioned this to L's child care Educators or to medical professionals, they would defute what we saw with "no look, L can say more than that, watch, L say ...." and he would be able to repeat the word to them.

However the words that they were getting him to repeat were not a part of his everyday vocabulary.

So how does one communicate when the world can be a very confusing place?

Children with ASD generally find other ways of communicating their needs and wants. They have their own unique way of communicating and L was no exception.

Through L's autism diagnosis we were able to identify the many ways in which L was communicating with us and others, at the time we just did not know that they were all autism spectrum disorder traits.

So I thought that I would write a post detailing the many ways in which L used to, and still does at times, communicate his needs and wants.

Key Word Signing

Key word signing or Makaton is a simplified version of Sign Language and as the name suggests, the actual signs just represent words. When signing the word, you also need to speak the word so that the child begins to make the connection between the two. Key word signing isn't intended to replace the need for speech, it is used to assist the development of speech.

L picked up key word signing from a very young age and it was truly wonderful to see his frustration at being unable to communicate ease a little. At first L picked up the signs for please, more, finished, eat and drink. He would never say the word but the signing action was very clear.

I have used key word signing for children with special needs, children for whom English is their second language and for babies and have had great success with all groups. Key word signing is a very effective communication form and it really does alleviate a child's frustration at being unable to communicate.

Non-Verbal communication.

From an early age L also used a series of sounds, grunts and random hand gestures. He would point at a direction that he wanted to go in or at an object that he wanted. The sounds and grunts that he used, while they did not resemble words at all, they all had a meaning. O became an expert at being able to interpret L's communication form for us!

In the ASD world, non-verbal does not mean quiet!


Quite often if we or anyone else asked L a question such as "where are your shoes," L would answer with "Where are your shoes? Dunno."

But again L would never repeat the words voluntarily. They were only ever repeated after hearing a statement or being asked a question.

Echolalia describes the act of a child or individual repeating verbatim what you have said or asked prior to answering the question or carrying on the conversation. In effect, echolalia is the repetition of the speech of others and it is generally a consistent trait among individuals diagnosed with Autism.

Echolalia is a very normal way of learning to communicate and most children at some stage in their development use this form of communication to learn to speak. If you listen to babies babbling, it is usually done in a rhythmic way. A baby will mimic the cadence of their parents or carers speech. As their speech continues to develop, a young child will copy sounds, words and sentences that they hear adults and other children say.

So echolalia can be described as an attempt to communicate to others, to learn new language and to practice new found skills.

Most children tend to grow out of using echolalia speech, individuals on the spectrum generally do not. L was still using echolalia speech well after turning three years of age and he still uses it occasionally.

Another reason that has been explained to us for L using echolalia was to give him time to process what he had so that he could retrieve a memory on how to answer the question.

Mimicking the speech of others.

Another form of echolalia is mimicking what others say. When L was asked as a toddler to say a specific word, he was merely mimicking exactly what he heard.

L could say other words by simply copying what he heard. His speech wasn't very clear but he could repeat the word.

However the word that he repeated was never said voluntarily.

Scripted Speech

Scripted speech is another form of echolalia but it describes the act of repeating verbatim phrases or words that an individual has heard from interactions with other people or from television shows or movies often during completely random moments or for children during play.

Scripted speech is a facet of autism that fascinates me and it is something that both L and O do on a regular basis to this day. Quite often L and O will repeat entire sections of movie or television shows while they are playing and usually in the accent that they heard it in. Quite often the scripted speech will be during completely random moments! The accents that they both come out with are astounding!

What O and L repeat never changes from one play experience to another and it seems to be an ongoing action. I'm not sure that either L or O will outgrow this form of communication.

What? What did you say?

Quite often when you ask L or O a question or ask them to do something, they will respond with "what?" or "what did you say?" or "can you repeat that please?"

Quite often individuals with autism struggle with processing what they have been asked and as such it can take them a little longer to respond.

When L and O initially respond with "what" or "what did you say," we simply repeat exactly we have said. Quite often L and O are then able to respond appropriately to our request.

By answering with "what," they are processing what we have said and again retrieving a memory on how to respond. It's not that they are being rude, they just need a little extra processing time.

Communication Boards.

L has also used basic communication boards to communicate his needs and wants. A communication board consists of different symbols that represent a variety of words and/or phrases.

The communication boards do not replace the need for speech, again they are used to assist in the development of speech. While pointing to the symbol or picture, it is recommended that the word be said as well so that the child begins to make a connection between the symbols and the words that they represent.

There are many others ways in which individuals can communicate, these are just a few that L and O have used or still use.

So the next time that you are struggling to communicate with a child and they are responding in a way that you do not understand or seems frustrating to you, take a  step back and look at the bigger picture.

Is the child not communicating effectively or are we looking at their communication form from the wrong angle?

Friday, 4 August 2017

Migraines suck

For as long as I can remember, I've always suffered from migraines. They come from out of no where and can last for days.

The migraines that I suffer from are truly debilitating - all that helps is a dark room, no noise and sleep, lots of sleep. I do take a migraine medication when I need to, but it is something that I try to avoid as it generally makes me very sleepy.

I can go for months without having a migraine and then get hit with one that grounds me for up to three or four days. And no amount of pain management makes the migraine go away.

I've come to realise that I have certain triggers for my migraines and where possible I try my hardest to avoid the triggers. However this is not always possible.

I have been hoping that neither of my little superheroes would inherit migraines as they are not something that I would wish upon anyone.

In the last few months O has described to me that she has come down with what appears to be a headache. But she has always bounced back with a dose of Panadol.

Last night O went to bed with quite a bad headache but we put it down to the late night that she had the previous evening and the number of pillows in her bed that cause her to sleep at some very odd angles.

It did not occur to me that perhaps she had the start of a migraine. When she woke this morning, she was complaining of feeling unwell but she toughened up and went to school.

This afternoon however, my little girl was hit with her first full blown migraine. How she looked and how she described the pain in her head, the pain that noise and bright lights were causing her, was exactly how what I feel when I have a migraine. The educator from the outside school hours care facility who brought O over to my workplace this evening said that just by looking at O, you could tell that she was in a lot of pain. She guessed that O was feeling how I felt yesterday.

And the fact that O crawled straight into a warm shower after having some medication, didn't eat all that much for dinner and then voluntarily went to bed very soon after arriving home confirms my thoughts.

I do hope that she feels much better in the morning. My poor little superhero, I feel quite guilty for sending her to school today :(

Migraines suck! So please go away migraine and leave my little one alone.

The Elusive Ball!

At the beginning of this week I wrote a post about The Monsters Inside, during which L helped me out with a book review.

He was more interested in talking about a ball that he uses at Tara's School to assist with his breathing calming strategies.

When L initially told me about the ball a week and a half ago, he described the ball as a something that stretched. I thought he meant a ball that had a spring inside and came apart in two halves.

How wrong I was!

My background is tertiary science so when I finally saw the ball at Tara's School on Tuesday just gone, my first thought was that it reminded me of a bucky ball. Yep, it's a science term! The ball had a structure similar to that of an expanded bucky ball.

L was right, the ball did in fact come apart, it stretched to become larger and could be collapsed back down.

Do you think that I could find said ball anywhere? Of course not!

Everyone who I showed the photo to, knew what it was and where they used to be sold but not one store that I visited had them in stock. Nor were any of the stores planning on restocking them in the future.

I searched online and can I say that some very, very inappropriate images were shown, so I quickly gave up!

Eventually I put a call out on my personal Facebook profile in the hope that one of my friends would be able to find said ball. And as luck would have it, one of my wonderful friends just happened to have one at home. Thanks Bec!

You know that you are onto a winning sensory toy when L stops watching his favourite show on television to play with the said toy.

But, whatever you do, do NOT call it a toy in front of L.

This statement evokes a very prompt response of "IT NOT A TOY!"

L was very quick to show me how to use the expanding ball.

The idea behind it, I think, in terms of it being a calming strategy is that by expanding and collapsing the ball while breathing in and out, that that motion alone gives L something to focus on. He's not realising that he is taking time out to calm down as in his mind he is just "playing" with the ball.

The ball is also a great tool to assist with L's hand/eye co-ordination, his fine motor control, as well as assisting with L's sensory input to assist him to recognise when he has to be gentle (sensory proprioception input.)

See I told you that I can turn any child's toy into a therapy activity.

Now to find another elusive ball as O has now decided that the ball is great to help her focus when she is completing her spelling homework!!

Tuesday, 1 August 2017

The Monsters Inside

**** Please note that I do not receive any commissions of any sort for the book that is mentioned in this post. It is simply a book that I have found useful. ****

Let me start by saying that I am on quest!

I'm on a quest to find story books that not only explain BIG emotions to children but also give children different strategies that they can use to manage these BIG emotions.

In the last twelve months I have stumbled across quite a few gems and last weekend, I came across another in the most unlikely of places!

Unfortunately for me, our local book store closed its doors last year, so if I'm not browsing one of my favourite online stores, I occasionally head to one of the big name department stores to peruse their very small book section to get my book fix!

You can never have too many books, right???

Whilst in the store last weekend, O picked up a book and commented that it looked interesting.

And interesting it was. The book was exactly the type of book that I have been searching for to add to my ever growing collection of resources. It was wonderful to see this book available in the department store and I truly hope that more parents wander into the book section and snap this little gem up!

The Monsters Inside is written by Belinda O'Brien and follows the story of a little boy named Jack and his emotion monsters that come out to play when Jack doesn't get his own way. During the story, Jack's mum teaches him how to keep his monsters at bay using the calming strategy of taking deep breaths and counting to ten.

L still struggles with recognising and managing his BIG emotions and I've yet to find a book that he can relate to.

During his weekly therapy sessions, L is doing a lot of work at identifying his and others emotions and he's also learning new skills to manage his own emotions and how to respond appropriately to others. L has come such a long way in the last twelve months but he does still struggle at times. He is definitely a work in progress!

When children are able to understand the reasons behind BIG emotions like anger, sadness and frustration as well as the positive BIG emotions, they can begin develop the skills that they need to manage their own emotions and respond appropriately to others.

We're hoping that with time, L will be able to independently manage his own emotions and respond to the emotions of others.

Before we had even arrived home, O was reading the book to L in the back seat of the car. When we arrived home L declared "this book for me!" and he went and stashed the book in his bedroom!

Each time we have read the book at home, L has been mesmerised by the story. He loves the illustrations in the book and is always pointing out the different monsters and talking about how they make Jack feel. When I collected L from his therapy session this morning, he proudly told me they had read the monsters book at Tara's school.

So this afternoon I decided to ask L his thoughts on the book!

Me: What is this story about?
L: The little boy and he gotted monsters when he was angry.

Me: What does his Mummy teach him?
L: She tell him to breathe in, out, in, out, like with the ball at Tara's school and count!

Me: How many does he have to count to?
L: Count to 10! 1, 2, 3, 4, 5, 6, 7, 8, 9, 10! Like that!

Me: And then what happens?
L: The monsters go'd away!

Me: How does the boy feel when he has his monsters?
L: Very sad! And angry! (insert growl here!) And frustrated!

Me: How does the boy feel when his monsters go away?
L: He very happy! Like me! But I gotted monsters sometimes!

Me: When you have monsters that make you sad, what can you do?
L: I breathe in, out, in, out. Mummy, I needs a ball like I gotted at Tara's school!

Me: I'll try to find a ball like at Tara's school. What else can you do?
L: Ummmm, count! You get me a ball please?

Me: I'll try to find one for you. And then what will happen when you are breathing and counting?
L: My monster go away and I be happy!

Me: Good work buddy.

The book is definitely a hit with L! It has fast become one of his favourite books!

I've also read the book to my Kindy charges at work and have had the same response. The story is written in language that young children can easily understand and relate to and the illustrations really are fantastic.

This book really does have it all!

On a side note, I am still on my quest so if you have any suggestions of other book titles, I would love to know what you've found helpful.

And the ball that L kept referring to, it is an expandable ball that his therapists have been using to teach L and his peers breathing techniques. When they breathe in, they expand the ball with their hands and when they breathe out, they collapse the ball. So my next quest has begun!! When I find one, I will let you know!