Sensory Souls Train Day!

Back in April, I wrote a post about a Sensory Souls event in which the little superheroes had a go at paddle boarding. This was our first sensory event since moving back to sunny Queensland and both O and L loved the experience.

Well just recently there was yet another Sensory Souls event - a model train day and seeing as though both O and L love model trains, we went along for the ride. Pun intended!

As I have previously mentioned, on numerous occasions, both O and L struggle on outings if there is much noise or too many people. The events that Sensory Souls organise and conduct are brilliant as the number of participants are limited so hence the noise and busyness of the event is also reduced.

Prior to the event I was told by the lovely ladies from Sensory Souls that the little superheroes were going to love this event and boy were they right. It was a truly amazing day. We took one of the little superheroes friends along for the day and all three had a ball. We started the day by finding a few playgrounds to explore on our way to the model trains location. They were a little excited so burning off some energy was much needed as was getting a little proprioception input!

When we arrived at the trains, all three didn't know where to look first. There were steam trains, electric trains, tunnels, bridges, stations and more as well as park areas to explore.

Our first stop was being a train driver. Those who were attending the event were given the opportunity to drive a small electric train, under close supervision of course! L's favourite part of driving the train was having his finger on the horn the entire way round!

After three trips around the small track as all three little superheroes wanted to drive the train, we went and joined the queue for the big track. The big track is just amazing - to see all of the track, which is four times around, takes anywhere between an hour and an hour forty five minutes. It was huge.

I spotted the grand old steam train and convinced the three little superheroes that we should ride on it. They were all enthusiastic about it until we went through thefirst tunnel. Faces full of soot and steam equals three unimpressed children!! Ah, what's a bit of soot between friends! All three quickly learnt as when we went through the next tunnel, heads went down and eyes were closed!

So once again, thank you Sensory Souls and all of your train loving volunteers, it was a great day out. L is already counting down the days until next years train day!

Lunar Eclipse July 2018

As you know, O loves everything and anything to do with space. In January 2017, she researched eclipses as she wanted to find out all about them. Her goal for last year was to watch a lunar eclipse but alas we were never in the right place at the right time to watch an eclipse. Her highlight though of last year was getting to meet Dr Scott Parazynski, a former NASA astronaut who also happens to be the only person to have both flown in space and climbed to summit of Mt Everest.

So when she worked out that there was a lunar eclipse this year that we would be in the right place at the right time to view, the alarms were set.

As O said "It's going to be the longest lunar eclipse THIS century and the moon will turn bright red during the eclipse. We HAVE to watch it. Please!" How could we resist!

The clouds in the sky prior to us trying to catch some sleep eye were rather ominous. But to our surprise and delight the skies were clear in the early hours of the morning on Saturday the 28th of July. The moon was magnificent and to O's delight we were able to spot Mars very clearly.

It still amazes me every time we gaze at the moon through our telescope. The sight of the moon never gets old!

The eclipse began at 3.14am. This was the Penumbral stage when the earths penumbra, or shadow, began to touch the Moon's face. The spectacular part of the show started about an hour later and oh my gosh, I don't think I have ever seen O so excited! Lots of bouncing and stimming!!

L got up, saw the eclipse and then prompted decided to go back to bed! O on the other hand wanted to stay up and watch the eclipse for as long as we could. Unfortunately for O, the moon dipped behind the trees and we weren't able to watch it turn red. However it pays to have friends who were able to watch this phase of the eclipse!

So, where were you when this eclipse occurred?

Neurotypical, Neurodiverse, Atypical ..... What does it all mean?

When talking about Autism Spectrum Disorder, there are generally a lot of terms thrown around. Neurotypical, Neurodiverse, Atypical and Neurodiversity being some of them.

The term Neurodiverse was first coined in the late 1990's by two individuals - by an Autism advocate and sociologist, Judy Singer, and by a journalist, Harvey Blume.

Judy Singer first used the term in her not well read sociology thesis that she presented in Australia (go you good thing!) in 1998. As Judy states in her book, "Neurodiversity: The Birth of an Idea," 

"I am generally credited with coining the word and Harvey for being the first in print."

Harvey Blume is credited with popularizing the word! In the September 1st 1998 issue of The Atlantic, Blume wrote -

"Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general."

But what do all these terms mean?

In the Autism world, Neurotypical refers to those individuals who have not been diagnosed with Autism Spectrum Disorder.

Atypical refers to those who have a different way of thinking, feeling and being. Those who have been diagnosed with Autism Spectrum Disorder.

Now let's talk Neurodiversity!

Neurodiversity is short for Neurological Diversity and it refers to the diversity that is present among us all in regards to our brains and minds.

To me, Neurodiversity is the idea that having differences in the way that we think and process the world around us is natural and this diversity is a valuable asset to the world in which we live.

When you think about it, there is a great deal of variation among human brains and human minds. No two people think alike. We all process the world around us in a different way. We all learn differently.

The way in which we think and process things is in part due to the differences in our cultural backgrounds and our personal life experiences. But it is also due to the fact that our brains are wired to work differently from individual to individual.

Neurodiversity should be considered as a natural form of diversity in much the same way that there are diversities among us in the forms of our ethnicity, our race, our cultural backgrounds, our gender and so on. And just like other forms of diversity, Neurodiversity can enrich societies and communities all over the world.

But unfortunately, just like other forms of diversity, individuals who are Neurodiverse are often met by hostility by those who think that there is a right and a wrong way to think, act or feel.

But and here is the kicker for all those who think that being Neurodiverse is a bad thing, Neurodiversity, just like Autism Spectrum Disorder, can be viewed as a spectrum. We're all Neurodiverse, regardless of an ASD diagnosis or not, as we all think differently from the next person.

It is important to recognise and remember that Neurodiversity doesn't only refer to Neurotypical and Autistic. There is a lot of different ways of thinking and being between Neurotypical and Autistic as well as on either side of both. 

Neurodiverse simply means that everyone's neurology is different and unique. No one person is more important or less important than the next due to the way that they think.

Let's embrace Neurodiveristy. It can only make the world a better place.

A Short Story by O - The Five Amazing Friends - Transformation!

The Five Amazing Friends - Transformation!

One school day, five friends were playing around the trees. Their names were Livy, Jemima, Harry, Xavier and Maximus. As Livy and Jemima ran around the trees, one of the biggest trees began to glow a bright iridescent blue so they yelled out to the others, "Guys, you HAVE to come and see this!"

Maximus, as always, he was the first one to come running over. Next was Xavier and last came Harry. Maximus asked "Whoa! What is it?"

Livy replied "I think it is a portal!"

Everyone nodded in agreeance and with a burst of light, they all got sucked into the tree!

When they came out, they were in a strange land. It looked nothing like their school playground. They also looked nothing like themselves. They realised that they had all transformed into a different animal. Livy had transformed into a tiger. Jemima had transformed into a unicorn, Harry into a hedgehog, Xavier an Owl and Maximus was a cheetah.

Harry with a hint of excitement in his voice yelled "Hedgehog, yes! I wonder, can I run as fast as Sonic?"

Everyone loved their new forms, and spent sometime exploring what they could do but they all wondered why they were in this new foreign land.

Time in this land seemed to fly by and before they knew it, night had come and gone and a new day had started.

The next day as they were exploring their new surrounds, they met a lone wolf standing at the entrance to a cave. The wolf begged them to help her. She told the five friends that she needed help to regain control of her kingdom from Draco, a terrible evil dragon.

Without any hesitation, Livy told her that the five friends would be happy to help.

Harry cupped his little paws in front of his mouth and went "Pfffttttt!"

As one, Livy, Jemima, Xavier and Maximus yelled, "Not the time Harry!"

In a small voice Harry murmured "Sorry, I was trying to get into the spirit!"

The five friends huddled together and thought of a plan. Harry said "We need a name! We should be the Furious Five Animorphs!"

Jemima said "Oh my gosh, that's a great name."

So it was decided, they would be known as The Furious Five Animorphs.

Harry and the wolf were to be the bait, they would wait at the throne in the castle. Xavier and Maximus would pretend to be guards at the entrance to the castle. Livy and Jemima would hide out of sight and do hand signals to the others - they would warn the others when Draco was at the castle and when they should attack.

Somehow Draco found out about their plans and he with his army of guards snuck up on the five friends and the wolf.

When Jemina spotted Draco and his guards, she dabbed and out of her horn came the most amazing rainbow which knocked the guards off balance. Livy touched one of her stripes and she suddenly had a sword in her hands which she used to send the guards back to the evil palace with one swipe. Xavier yelled "Owww, my eyes hurt," and at the moment laser beams shot out of his eyes. Xavier started shooting the remaining guards, knocking them to the ground.

Harry started zipping around Draco yelling "Fast not slow, fast not slow," causing Draco to become dazed and confused. Maximus became super strong and started to punch the ground yelling "Kapow, kapow!"

The five friends and the wolf fought and fought until Draco was sent back to the evil palace.

After Draco disappeared, the wolf turned back into the Queen and gave each of the five friends a badge of honour.

Then before they could celebrate their success, the five friends found themselves standing back in the school ground looking like themselves - five school kids dressed in their school uniforms.

Harry, with a hint of dismay, said "Oh man!"

At that moment they heard the school bell ring for third session, so they all wandered off to their next class whispering, "What will be our next adventure!"

A Short Story Series by O!

Where is this year going? We're midway through the year and the school holidays have come to end. O has been a very busy, creative little superhero this school holidays with writing a series of short stories as well as doing some research on various topics.

I had no idea that she'd been writing and the fist short story that she showed to me, blew me away.

Whoever said that individuals with autism have a limited imagination and no creativity, needs to meet O!

When I asked if she wanted to publish them on the blog, she jumped at the opportunity. Within seconds of mentioning about publishing them on the blog, the pencils and paper came out and she was drawing pictures to go with her first short story.

So, keep an eye out for them on the blog, I have a feeling that there will be more than one short story being written in the near future! I'll be adding links to each story as O adds them!

The Five Amazing Friends - Transformation!

Dear Ms Shanahan

Recently I read an absurd article in a major Australian newspaper in which the author states that autism should be removed from the NDIS. In essence, the author states that individuals with autism shouldn't be able to access funding, that autism shouldn't be classed as a disability and that disability funding should be given to those that really need it.

Whhhaaaattt!!!!!!

But before I get onto my open letter, I'll give you a little background on the NDIS.

The NDIS is the National Disability Insurance Scheme that is slowly rolling out Australia wide. The scheme has been in the trial stage in many parts of Australia over the last number of years and is gradually replacing other funding schemes Australia wide. In the last figures that were released about the participants that are currently in the scheme, it was stated that there are 142,000 individuals in the scheme. Of those 142,000 individuals, 29% of them are listed as being ASD. This is quite a large percentage and the scheme is yet to be rolled out nationally.

It would appear that the sheer number of individuals diagnosed with autism wanting to access the NDIS was grossly underestimated and the administrators are scrambling to "fix" the issue.

There have been several reports leaked to the media over the last month in regards to the NDIS changing the eligibility of Autistic individuals in being able to access the NDIS. If the proposed changes are put in place, it would mean that autistic individuals with a level 1 or level 2 diagnosis may find it much more difficult to access the scheme.

From a personal level, the NDIS has been instrumental for our family over the last three years in enabling L and O to access services such as multi-disciplinary therapy services and support services. Without the NDIS we would not have been able to pay for the level of support that both O and L have been receiving. And without the level of support that they have and still are both receiving, I doubt that they would be making the progress that they currently are.

I stumbled onto the most recent article quite by accident and as I was reading it, I could feel steam coming out of my ears. So here is my response to the author.

Dear Ms Shanahan,

For someone who has three adult children with health and subsequent disability issues, you are not showing any compassion towards others nor are you showing any knowledge about autism.

I am in a quandary as to which if your misguided, incorrect and downright offensive statements to address first.

There is no such thing as "mild autism." End of story. You either have autism or you don't. Mild autism is like saying someone is slightly pregnant. You either are or aren't. Autism presents differently from individual to individual. Yes the diagnosis of ASD is presented as a scale, but Autism itself is a spectrum. Individuals diagnosed with level 1 ASD still have struggles. The struggles may differ from those who have been diagnosed with level 3 ASD, but the struggles are still present.

We too sought and are receiving "practical help" for my children, as you put it, in the form of occupational therapy, speech therapy and child psychology sessions. Both of which are assisting my children to flourish both socially and in the education system. It's called early intervention therapy and the idea is that if a child receives therapy services early on in life, then they should not need as much support as adults. We are giving O and L the skills now that they will need as adults. We're setting them up to succeed as adults.

Both of my children were diagnosed in Western Australia and I can guarantee that we did NOT doctor shop for their diagnosis of ASD. We didn't choose to spend thousands of dollars on specialist appointments and assessments. It was a necessity and none of which we could claim through Medicare or through our private health fund. The assessment process took a good six months, three separate assessments and a lot of heartache. Times two. Why anyone would doctor shop to go through an assessment process amazes me.

And at no point during either of my children's assessment was "the parents level of stress," i.e. mine, taken into account. This does not form part of an ASD assessment. Period.

I have an idea Ms Shanahan, how about you sit in on an ASD assessment (from start to finish, so you may want to clear the next six months in your work schedule) just so that you can personally see what an assessment details. Keep in mind that most specialists are booked out for up to six months so you will be waiting in limbo until an appointment becomes available. You may also need to cancel plans with very short notice if an earlier appointment is made available. You will also need to factor in travel time, not all specialists are located in the same area so an hour appointment session may, in fact, take an entire day due to having to travel to and from the specialist.

You would have children like O and L go through a community education program instead of receiving vital funding and therapy. Pray, do tell, like what?????? And who will pay for such programs???? Who will run such programs???? Specialist sessions are not cheap. Where would community education programs gain the level of funding required to conduct intense therapy similar to early intervention programs for high numbers of children?

Without our amazing OTs and Speech therapists over the last three years, I highly doubt that my children would be making the progress that they are and continue to make. And without an ASD diagnosis, neither of my children would receive the support in school that they need.

You are incredibly fortunate that you received all the services that you did for your children. We receive very little financial assistance from the government. And many families that I have come to befriend through the therapy that my children attend, are in the same boat as my family. The small allowance that we receive, pays for fuel to and from therapy. I'd love assistance to pay for their various medications, very few of which are on the PBS list. We had to fight tooth and nail to receive the small amount of financial assistance that we currently receive.

Please educate yourself on autism before you next write an article on why Autism should be removed from the NDIS.

Yours Sincerely,
This very angry parent.

Why I Do Not want to be Diagnosed with ASD

From the moment that we received L's and then O's ASD diagnosis, I began to question what I knew about my life and how much I really understood about myself. 

As I have mentioned in previous posts, I have had many struggles as a child, a teenager and young adult with anxiety, social interactions, understanding the behaviour of my peers and so on for as long as I can remember. I have always felt different from my peers but could never put my finger on what the issue was.

It was during O's assessment sessions that I really began to ask questions of myself, reassess how I felt about myself and what I knew about myself.

O is my mini me. She reminds me so much of myself at the same age. She always has, and I dare say she always will. Her struggles, her anxiety, her highs and lows - oh my, it really is like looking in the mirror at my younger self. 

When I was answering questions from O's psychologist and speech therapist, I began to realise that if I was asked the same questions about myself, I would be giving the same responses about my own struggles.

When I have broached the subject with the various specialists that we've had to see for O and L, I have been told by the specialists that they unequivocally believe that I am on spectrum.

However I have no desire to seek a formal diagnosis.

At this point in time, other than having it confirmed officially and receiving a piece of paper in my hot little hands, I honestly can not see the benefit for myself.

Yes, it would be good to officially know. It would be good to be able to say that all of my struggles as a child, teenager and young adult were due to the fact that I really didn't understand social interactions because my thought process was different from those around me.

But  other than that what will it prove.

I don't need assistance now. I don't need therapy to assist me to function successfully in life. I have learnt all of those skills over the last few years.

I would prefer to put all of my time and energy into assisting my little superheroes to provide them with the skills that they will need to navigate through life.

I don't want to see them struggle in the future with social interactions, anxiety and potentially depression as a result of the impact of these struggles.

I know first hand how it feels to struggle as a result of not understanding social interactions. I want to set up my little superheroes to succeed at anything that they set their minds to.

So while it would be great to have a diagnosis simply for my own peace of mind, my priorities lie elsewhere.

I don't want to dwell on the past and the what could have beens.

I want to look towards the future and the endless possibilities that lay ahead for my little superheroes.