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.

Being Me - My Authentic Self

I've recently received a message that this blog should not exist because I am not being my authentic self through my writing. To add insult to injury, the messenger went on further to say that I am not qualified to be giving advice to anyone.

Ah, excuse me? I beg to differ.

If you examine the term "authentic self" there are two sides of ourselves that we present to others. There is our own personal truth and our social mask.

Our personal truth is what we really say, think and feel about ourselves when no one is watching or when we are around our closest family and friends. When we are our authentic selves, we are showing our personal truth to the world.

Our social mask is what we show to everyone else. We might put our best foot forward. We may put all the positive points forward and hide the negative points out of sight. Our social mask is making ourselves appear to be perfect. When we put on our social mask, our authentic self is hidden from sight.

And therein lies the flaw in the email that was sent to me.

What you see and read in this blog is me. What you read is my personal truth. It is my families personal truth.

In 2016 when I started my blog and social media pages, I set out to share our families Autism journey because I was struggling to find support. I needed to clear my mind of all that we as a family - O, L, my husband and myself - were experiencing on this journey.

Through my blog I wanted to share the good, the bad, the highs and the lows and everything in between about our Autism journey. Writing is like therapy for me.

Through my writing I do not hide anything. There have been many a time that I have felt like I have failed my children as I haven't been able to get them the support that they need. There have been times that I have been so overwhelmed by our life that I want to disappear but I haven't because my children need me.

I don't have a spotless house as that isn't the most important thing in our life. My husband and my children more important. If you come to see the house, you've come to the wrong place.

I don't hide my flaws nor do I make any apologies for my flaws. We all have them and if you believe that you are completely flawless then I call your bluff. No one is flawless.

Our life is far from perfect but we get by. In our house there is an abundance of love and support of each other and that is all that matters.

No matter what journey we are on, as a family or as an individual, we all need to know that life is not perfect. We all need to know that everyone has highs and lows. We need to know that is no such thing as a perfect life. There are elements in life that are perfect, but there are also elements that are not so perfect. They go hand in hand.

By showing this side of our life, I am showing you my authentic self.

Since starting this blog, I have had parents, carers and families from all walks of life, express their joy at finding my blog. They are realising that there is support out there. They are realising that other families are experiencing the highs and lows that they are experiencing.

I have received messages from families, teachers, carers and individuals asking for advice on various facets of Autism. In the majority of cases I have been able to give advice. In some cases I have been able to point them in the direction of someone more qualified. In all cases, they have been very thankful that I have been a listening ear to them.

I feel qualified to give advice because I have over 20 years experience in working with children both ASD, other special needs and NT children. I've participated in many courses and workshops on Autism, positive behaviour supports and many other topics not only for the benefit of my own children but to also better my knowledge. The more I know, the better equipped I am to assist my own children.

I have two children who have both been diagnosed with Autism Spectrum Disorder. I have two children whose Autism is vastly different from each other. In my house, I can see that Autism is in fact a spectrum!

In my blog, I keep it real. I give advice that is easy to understand and easy to implement.

What you read is my authentic self.

A Boy Named L.

I want to tell you a story about a boy named L.

A boy who struggles when his routines are changed. A boy who has always wanted to play a team sport but his anxiety and sensory processing difficulties have always stopped him.

Several years ago, L expressed his interest in playing rugby league. We found a club who were willing to have him as a member of one of the junior teams and joined him up.

L was ready and raring to go. He went to and participated in every single training session and thoroughly enjoyed the sessions. He'd often run off and join another team that was training but he was at the field.

But when it came time for the weekly matches, it was a completely different story. When the matches were held at the home ground, we'd be able to get L to the games and he would go and stand near field but the sheer number of people watching the game and the noise would send him into sensory overload. He'd end up retreating into himself and hiding behind one of us or he'd run off from the field.

When the matches were held at away grounds, L did not cope with the change. This wasn't where he trained so in his mind, this was not where his games where, even though he could see all his team mates at the field.

For the entire league season, L played a total of about 15 minutes on the field. We wrote social stories, we took photos of all of the away fields but nothing seemed to help him. So we stopped going to rugby league as it was too distressing for him.

Jump forward to 2018 and L expressed an interest in soccer.

After his experience with league we weren't sure how he would go but he was even more insistent that he wanted to play than he was with league. We found a club that openly said that they were special needs friendly. This time we were armed with a publication called "Autism in Sport" which has been specifically written for coaches which we've given to L's coach to read through. Both myself and Daddy superhero were well prepared that we'd possibly have to be actively involved in the training sessions and the games.

We are about 6 weeks into the current season. L has gone to and participated in most of the training sessions but he's yet to play a game. On all the previous games, his anxiety has set in about the change of field or the crowds and he's not wanted to go. From our experience with league we haven't wanted to push L out of his comfort zone.

Well that changed today.

It was a home game for both O and L, so we suggested to L that we go along to the game just to watch his team play. This he was okay with.

When we arrived at the field, his coach gave us a team shirt for L to wear. This he was not okay with. The shirt was thrown, tears were had and L retreated into himself.

Until about ten minutes into the first half when L told me "I wear shirt now?"

Sure buddy. I suggested to L that I could go onto the field with him if he wanted to play (which the coach was fine with) to which L replied "Nah, I do a self!"

And off he went. I started to follow him but he physically pushed me off the field telling me "No, I do on me owen!"

I can honestly say that my eyes were watering a little with pride as I watched him run off onto the field without either myself or Daddy. I was also honestly expecting him to run off of the field a short time later.

But nope, my little man found his bravery and joined his team mates on the field.

He did come off for short breaks and drinks of water. He came off to get his soccer socks and books put on. He chased the ball down. He did some huge kicks of the ball. He tried to stop the other team from scoring goals.

L stayed on the field, in the game, for over 20 minutes.

Keeping in mind that when he played league, he only spent a maximum of 15 minutes on the field for an entire season, 20 minutes in a single game is a huge step for L.

And when the game finished, L said "I had fun. I going to play more."

From his efforts today, I have no doubt that by the end of the current season, L will be playing full games.

Then to top his morning off, his coach awarded L the player of the match award for not only overcoming his fears to play in his first match but also for being a great team player.

Well done L, no words can ever express my love for you and just how proud I am of you. You are a little superstar!

The future is looking very bright L, very bright indeed.

Being an Advocate.

There is a chain of thought circulating in the Autism community, mainly from Autistic Adults, that parents especially if they are Neurotypical should not be advocating for their Autistic children.

There are a number of groups on various social media sites where this topic of being an advocate is commonly discussed. And let me say that the discussions have become very heated very quickly. Particularly when a parent, who the Actually Autistic members believe is a Neurotypical, comments. Oh my, it is one way to get members fired up!

The thought chain is that an Actually Autistic adult should be advocating for Autistic children or that the Autistic children should be advocating for themselves because no one knows Autism better than an Actually Autistic individual.

Now I have a huge issue with this topic and here is my counter-argument!

These Actually Autistic adults know their Autism, they don't know a thing about my little superheroes Autism. Quite often they will admit that they don't yet have children as well.

So what gives them the authority to tell me how to parent my children? What gives them the authority to tell me that I should not be advocating for my children?

Firstly - I'm not Neurotypical. I may not have an official ASD diagnosis but the comments from my little superheroes psychologists and pediatrician is that I am on the spectrum. So technically speaking, I could be considered as Actually Autistic.

Secondly - Sure Actually Autistic (with a confirmed diagnosis) adult community, I'm going to allow someone who knows absolutely nothing about my children be their advocate. Because that would work really well. Not.

Thirdly - If I allow my little superheroes to fully advocate for themselves, I know what the outcome would be.

L will advocate for no school. Ever. He is enjoying school but there are still days when he just does not want to go. His days would be filled with no school, watching his beloved superheroes on television, lots of trampoline time and Nutella sandwiches.

O would go to school and it would be all about science, maths and reading. And if she wasn't at school, she'd have her nose buried in a book. There would be very little social interaction.

At the present moment in time, both O and L have voices but they've yet to find their self advocate voice. They're yet to gain the ability to stand up for what they need to succeed at school and in the community around them.

Don't get me wrong, the best people to be driving conversations about Autism are individuals who have been diagnosed with ASD. But when it comes to being an advocate, an Actually Autistic adult is not necessarily the best person for the role.

As their Mum, I know my little superheroes better than anyone else - well, so does Daddy Superhero. We as their parents are their best advocate.

I always talk with my little superheroes and gain their input. I gain their opinions, their ideas and their thoughts on most major decisions involving them. I ensure that they are speaking for themselves as much as possible and that their needs are being heard. That is what advocacy is. I am not speaking for them, I am speaking on their behalf.

I may not be able to see, think and feel how they see life but I do know their Autism.

I know my little superheroes Autism better than their teachers and therapists and anyone within the Actually Autistic community.

And if you look it at this topic from another angle - it is incredibly offensive for an individual, regardless of whether the individual is Neurotypical or not, to tell a parent how they should be parenting their children or to tell them that you think that what they are doing is wrong. This is inappropriate and totally uncalled for on all sorts of levels. If you would take offense at being told how you should or shouldn't raise children, please do not tell a parent that they shouldn't be an advocate for their child.

So to the Actually Autistic community, no matter what you say or what insults that you throw at me, I will continue to be an advocate for as long as O and L need or want me to be in that role because at this present point in time, I am the best person for the role as their advocate.

Why? Because that is my role as a parent. To be an advocate for my children.