Friday 28 July 2017

What Autism Acceptance Means to Me!

Autism awareness and acceptance mean different things to different people.

April is traditionally the month of Autism acceptance world wide. During the month of April positive, respectful and accurate information about autism is shared by many different organisations world wide.

But it is July I hear you saying! Why are you promoting Autism acceptance in the month of July?

Don't get me wrong, I think that it is wonderful that the month of April is when the majority of the Autism acceptance events are being held, but shouldn't Autism acceptance be a year round event?

One month, or even a week a year, shouldn't have to be set aside for the awareness of any disability. Disability awareness should be something that is occurring every day of the year.

So what is Autism awareness and acceptance and why do we need it I now hear you ask!

Well, what can I say......

In my mind, Autism awareness is all about raising the communities awareness of the needs and the accomplishments of both children and adults who are on the autism spectrum. Individuals with autism are capable of achieving great things but quite often there is a stigma that is attached to an autism diagnosis.

Autism awareness is about breaking this stigma.

In superhero headquarters we are very autism aware, especially at the ungodly hours of the morning when L decides that we ALL need to be awake! My autism awareness increases ten fold when O starts telling me about how she thinks or how she creates files in her brain to store new information or when I watch as L leaps over yet another obstacle.

Autism awareness is about educating the community that there are many different forms in which autism can present. Autism isn't just Rain Man or an individual sitting in the corner of a room rocking back and forth.

Autism awareness is increasing the communities understanding of how autism can present among individuals on the spectrum. Autism awareness is truly understanding the difficulties that individuals with autism experience on a daily basis as they try to navigate a world that can appear completely foreign to them.

When we raise the level of Autism awareness in the community, we can then raise the level of Autism acceptance.

Simply put Autism acceptance means the inclusion of individuals who are on the Autism Spectrum.

Deep down, we all just want to be accepted for who we are. We all have things about us that are unique, different, possibly annoying even to those around us. We all have different perspectives on what goes on around us. We all have different strengths and weaknesses. And we shouldn't have to change who we are just to be accepted.

Individuals with autism are no different.

Individuals with autism should not be left out simply because they have autism. Individuals with autism have just as much of a right to live their lives, participate in experiences and have the same opportunities as the rest of us.

Generally speaking, when people are aware that an individual has autism the response is usually "oh Sam has autism so he/she can't/shouldn't do that."

No, Sam probably can do/participate in the experience, they may just need a little help or some modifications may need to be made.

There's a quote that goes along the lines of "if a child is unable to learn a particular way, shouldn't we change the way that we teach.?

The way the child is learning is not the problem. The way that we teach is the problem.

Every individual is capable of learning new skills and knowledge, sometimes we just need to come at it from a different angle. We need to think outside of the box.

If we accept that autism is just a neurological difference, that it is a natural variation of the human form, and we accept that individuals with autism can do most things that the rest of the population can do, that is when we reach true autism acceptance and inclusion.

Acceptance of any individual, autism or not, is about being respectful and listening to what they have to say about themselves and accepting them for who they are. Acceptance is celebrating their achievements and acknowledging their strengths.

Individuals with autism aren't going anywhere so instead of exclusion, let's all work together to create a world in which difference is celebrated and accepted.

After all, this world is big enough for us all and as Dr. Temple Grandin has said "This world needs different kinds of minds to work together!"

Monday 24 July 2017

How much do I really understand?

As each new dawns, I have a much deeper understanding of just how little I really know and understand about my little superheroes autism.

I have had many people say to me that I know a lot about autism and the related issues that individuals with autism can present with. But this is completely untrue.

I know a lot, but not everything, about my little superheroes autism. I don't know everything about autism. There is a difference.

L's key therapist and the team at the early intervention centre that he attends know the complete ins and outs of autism. I know the ins and out of my children's autism. I know about the "symptoms" of autism and the different therapies that are available.

But in saying this, there is also a lot that I don't know, and will probably never know, about my little superheroes autism.

For example I cannot hear sounds the way that O and L hear them. There are times when particular sounds really grate on my nerves and I can feel my brain recoiling at what I am hearing. But not to the extent of how O and L are effected by different sounds and noise in general.

I also do not see colour and light the way that O and L see them. O and L can pick out the minutest amount of colour in the greyest of grey skies. O can tell the difference between magenta and violet just by glancing at it and she is always correct! How???

When I visit a hair salon, I do not have the same terrifying feeling that L usually gets with something as completely ordinary as getting a haircut. To L a hair cut can feel like torture and can be an absolutely terrifying experience.

Nor do I sense touch the way that O and L sense it. O is over responsive to touch, L is under responsive. And both can be variable in their responses from day to day!

There are days when all I can do is sit back and watch my little superheroes as they experience levels of pain and fear that I cannot, do not and probably will never feel. I know that they are in pain or are fearful as I can see the emotions written all over their little faces.

And all I can do is be there for them to reassure them, to keep them safe from themselves. There is nothing else I can do but be there for them and offer them sensory breaks in the form of block ear protectors, squishy cuddles or simply helping them to physically escape from the sensory overload.

I will never know how it feels for my little superheroes to go through life with autism. There are particular facets of autism that I understand, as I see those little snippets in myself as a child. I see O struggling with her anxiety and I know exactly how she is feeling. I also know what I need to do as her Mum to assist her.

The social communication and unwritten social rules that we all take for granted, are a completely foreign language to both O and L. The social rules do not make any sense whatsoever to O and L but they must both learn the rules. And I must teach them.

I can explain the social rules to my little superheroes until I go blue in my face, and they still won't understand them. However O and L will follow the rules simply because a rule is a rule. That they understand, you have to follow the rules. But just because they follow the rules, does not mean that they understand them.

O and L live inside their own little worlds, inside our world. And that feat alone is anything but simple.

Every time we leave our house, they both leave their safe place where they understand the rules. Their safe place is where there is consistency, schedules and routines that never change. Every time they step out of the house, anything could change at the snap of a finger and they have no control over it whatsoever.

There are days when I close my eyes and I try to imagine their world. A world in which they feel safe, where everything has a place and a purpose. A world which they leave each and every day as they desperately try to understand others around them as they try to fit in. Oh how I long to completely be immersed in how they experience life as I will have a greater understanding of the emotions and thoughts that run through them.

How O and L experience life is different to how I experience life and I will never know the full extent of how they experience the world around them. I can take guesses as to what goes on inside their heads but there are days when even these guesses cause my little superheroes pain and fear.

But through tyring to understand my own children, I am able to see the bigger picture of just how wide the autism spectrum really can be. Then I begin to understand that I have so much more to learn. We are all on this very steep learning journey together.

Thursday 20 July 2017

What autism looks like at Superhero headquarters

Since we began on our autism journey I have had too many people say to me "but they don't look autistic!"

I'm always curious to find out what they think autism looks like. People tend to hear the word "autism" and think only in extremes. Quite often the only interaction or knowledge that people have of autism is either through watching the movie Rain Man or they have an idea of an individual sitting in a corner of a room, rocking and banging their head against a wall.

But the truth is that every individual on the spectrum is as unique in his or her functioning level and personality as the rest of the population. No two people on the spectrum are alike! Autism can look like many things.

Recently when I was sorting through photos of my little superheroes, I began to come up with a mental picture of a blog post of our autism life told through a series of photos. And this is what I cam up with!

This is what autism looks like in our house. Two little superheroes who love each other to bits. O is 8. She loves to read - one of her favourite texts to read is the complete works of Shakespeare which she began reading at the ripe old age of 5! O doesn't line objects up, she groups her toys and belongings. She loves all the female superheroes and anything to do with space. L is 5 and is obsessed with superheroes, you name one and he can tell you anything about them. L lines things up, which makes life interesting when he goes into Os room and rearranges everything! L is boisterous and constantly on the go.

O and L are my little superheroes, through and through. Time and time again they come up against obstacles and time and time again they overcome these obstacles with massive leaps and bounds.

Living life with autism has it's full share of challenges. Little things that other families take for granted are quite difficult for O and L. Simple outings like going to a restaurant for a meal poses issues with what my little superheroes will and won't eat. Doing the shopping can end in a meltdown as my little superheroes generally enter into sensory overload due to their surroundings.

Block out ear protectors are a must, they go everywhere with us. Both little superheroes have a set of these and they have saved many an outing from turning pear shape! We do get a fair number of side way glances but we take that as an opportunity to spread a little autism awareness!

Even simple outings like a yearly photo with Santa is a nightmare. However now that more and more shopping centres have come on board with the Sensory Santa concept, we've been able to visit Santa two years in a row without any meltdowns occurring!

Both of my little superheroes need regular sensory breaks at school - I always try to give them both some sensory input before school starts! Sensory breaks are something that they will always need - the trick is getting them both to recognise when they need a break. I know that both O and L will get to that point, it is just going to take time.

Wash day! L has more superhero costumes than you can poke a stick at. Wash day looks like the Avengers have off loaded all their washing into my laundry! On any given wash day, I can guarantee that there will be at least 3 different superhero outfits in the laundry!

This is what the tail end of a meltdown can look like. This is the side of autism that people don't like to share or talk about. This is what happens when a child is in the midst of a meltdown and has no control whatsoever over their actions. This is what happens when you stop a Ninja Turtle figurine with your head. And oh my gosh, this hurt on all sorts of levels.

The bruise and swelling itself was incredibly painful. Seeing the confusion on L's face the next day was emotionally draining. He had no recollection at all as to what he done the previous evening. Thankfully this type of injury only happens once in a blue moon and when it does occur, I cannot hold it against either of my little superheroes. Neither of them would intentionally hurt us or each other, I was just in the wrong place at the wrong time.

Trying to get L to bed, at times, can be likened to trying to get a cat to take a bath. It really is a pay per view worthy event. He just isn't tired, not even a little. L has melatonin every night without fail and this will cause him to become sleepy, however if he isn't tired, it will not keep him asleep. Period! This means we have countless nights of very little or no sleep at all.

The wild and the calm - autism at it's finest. I'm not here to tame the wild within my little superheroes, I am here to guide them back onto track when they veer off. There is a place in this world for the wild as there is a place for the calm. We need both to balance out life!

Through my little superheroes, I am able to see life from a different unique perspective on a very regular basis. O's observations about the world around her can absolutely profound! O really is an old soul!

Autism Heroes!

Last year when we were on holidays in Queensland, we walked past a tattoo studio every morning when we went for a wander, and I began to get the idea of a tattoo that I wanted. Now the thought of needles causes me to become very queasy and it took me a good nine months to work up the courage to actually walk into a tattoo studio to book this baby in.

This tattoo, to me, sums up both my little superheroes perfectly.

L and O are my little superheroes, they are my autism heroes.

Saturday 15 July 2017

Wow, another Blogger Recognition Award!

Imagine my absolute surprise and delight when I opened up my emails and saw that Dr. Elise Cohen Ho from over Ask Dr. Ho had nominated me for the Blogger Recognition Award. My second this year and my blog has not yet been around for twelve months.

I must admit that when I saw the email from Dr. Elise Cohen,I had to read the email several times to check that I was reading it right. The nomination made my heart sing! So thank you so much Elise, I really appreciate the nomination as it came completely out of the blue and made my day.

As I mentioned in my post for my first Blogger Recognition Award, I really am proud of how far my blog has come since August last year. I truly do feel blessed to be part of the blogging community. It is such a diverse community and the Blogger Recognition Award is a lovely gesture that shows appreciation to bloggers right round this wonderful world of ours.

There are a few rules that I do have to mention prior to accepting the award.
  • I have to thank the blogger who nominated me and provide a link to their blog. ✔
  • I have to write a post to show the award. ✔
  • I have to write a brief story of how my blog started. ✔
  • I have to give two pieces of advice to new bloggers. ✔
  • I have to select 15 other bloggers that I want to pass this award onto. ✔
  • I also have to comment on each of the 15 blogs to let them know that I have nominated them and provide them the link to this post. ✔

Why did I start my Blog?

I started my blog in August 2016 as a means of clearing my mind from all that we were experiencing on our Autism journey. At that stage we were 6 months into our official journey as we had received L's diagnosis in January 2016 and I had quite a lot on my mind. I wanted a little piece of the internet to clear my thoughts on and hence my blog was born.

As I have said in a previous post, writing for my blog acts like a soul cleansing - writing gets it all out there, there is nothing left for me to dwell on. I can mull it over while writing, analyse it while re-reading and editing the post, and then my mind is clear when I hit the publish button. Writing for my blog is like therapy!!

I have been asked why I chose the name "Raising My Little Superheroes" for my blog and the explanation is really quite simple - and there's absolutely nothing deep and meaningful to the explanation I am sad to say!

As a Mum I am raising both my children and in my eyes, they are both little superheroes. They have both been through so much in their short number of years. L's obsession is superheroes and O is also partial to watching superhero cartoons and television shows, so I figured that the name of my blog really explains what I do!

Being on an Autism journey can be quite a lonely experience. You truly do find out who your true friends are, those that understand and accept your children for who they are. I am sad to say that we have lost a few friends so far on this journey, but they are the ones who are missing out!

I truly hope that by sharing our experience, I am able to let other families know that they are not alone on this journey. An autism journey can be a positive experience, if you are willing to let it be. We have our fair share of rough days and I am happy to share these as well as the positive days - I want others to know that we understand and get what they are going through. I want others to know that support is there to those who want it.

Over the last 11 months I have come across many a blog that has been going for quite some number of years and I honestly hope that my blog will be one of those in years to come that inspire others to share their own story.

Looking forward my aim for my blog is raise awareness and acceptance of Autism and to educate others by sharing our families story. As I said in my first Blogger Recognition Award post I hope that my blog provides an insight into living life with two children on the Autism Spectrum as well as educates, inspires, and supports others who are also on this journey.

Advice for New Bloggers!

The first piece of advice that I have is to write with passion. When I first floated the idea of starting a blog to my husband, I was very clear in my mind about what I wanted to blog about - I wanted to share every facet of our autism journey. I have found that being passionate about your topic makes it incredibly easy to think of and write post ideas. I have come across many bloggers who write with passion, and it really shows in their writing. Passionate blogs are easy to read and they are the blogs that I constantly return to. They are the blogs that I want to keep up to date with. They are the blogs that I feel connected to!

The second piece of advice that I have is seek out and make some networks within the blogging community. The blogging community is so diverse - you name the topic, there is probably someone in this wide world who is blogging about it! And if you ask for advice, take it on board. The blogging community is here to support you!

Now this is the part I am looking forward to. I love visiting other people's blogs. I've yet to come across a blog that I haven't enjoyed reading and there are so many amazing bloggers who write with passion. I am going to do something slightly different this time as I am going to include why I want to pass the Blogger Recognition Award onto them!

So without any further ado and in no particular order these are 15 of my favourite bloggers.
  • Tasha over at Meldrums on The Move - this is one lady who knows her stuff! Have a read of the post about assisting on a community project in Kenya!
  • Doris from over at Sugar, Spice and All Things Autism - I love this post about helping our ASD children to reach for the stars.
  • Kelly over at It's a Tink Thing - Kel's daughter Tink, also has autism so I can relate to everything that she blogs about.
  • Meghna over at Love, Life and the Little One - I love her post about Dad's who are Rocking Fatherhood!
  • Jessie over at Two Little Homeschoolers - she has a great no cook playdoh recipe on her blog!
  • Sara over at Travels with Tots - I love all her reasons why she takes her little guy with her on her travels.
  • Grandi over at My Aggrandized Life - Have a read of the post about lessons in grace and courtesy.
  • Marissa over at Diytified - Marissa has some great DIY projects on her blog, like this DIY Growth Chart!
  • Rachel over at A Life with A Little - I love Rachel's post on the 5 things that she learnt from a self-care weekend. A must read!
  • Emma over at Mummy's Munchkins - I love her Ode to her Kids as I can relate to a lot of what she has penned!
  • Shawna over at Mish Mash Mommy - she has a great post up of 26 books to include in your toddlers library!
  • Lisa from over at A Life Less Ordinary - I love Lisa's post on the 5 reasons that her son's autism diagnosis has made her a better person.
  • Joseph over at Insert Chaos Here - this is a man who writes with passion and humour. This post about an encounter with a bee made me laugh!
  • Brandon over at Right Brained Mom - I love the post on the rock race track!
  • Megan over at Restless Meg - Her open letter to herself is very honest and powerful.

Thursday 13 July 2017

A perfect winters day for a playground adventure!

If you have been following my blog, then you've probably gathered or heard by now that Tuesday is my day off of paid work. A typical Tuesday for me usually consists with running the little superheroes to and from school, therapy sessions and specialist or funding appointments. Tuesday is normally a very busy day with barely enough time to stop!

Well not the Tuesday just gone.

For a change there weren't any appointments or therapy sessions to attend and as it was still the school holidays, I wanted to do something fun with my little superheroes.

When we woke, it was the perfect winters day for a playground adventure - rain was forecast for the afternoon but the sun was shining, the wind was low and what is a little rain between friends anyway! When I mentioned to the little superheroes what I had in mind, they both leapt into action. I haven't seen them get ready that fast in a long time!

First up was a new playground, well new for us anyway, called Livvi's Place Playground in Whiteman Edge. It was established last year as a joint initiative between Stockland and the Touched by Olivia Foundation. The play area was designed as an all abilities play space with features especially designed for those children with special needs, in particular Autism Spectrum Disorder, physical, visual, hearing and mobility impairments. Although obviously it is open to any families wanting to enjoy the space. I'd been wanting to visit the play space for some time with my little superheroes and we'd just never got around to going.

When we first moved to Perth in 2010, I made a conscious effort to take O to a different playground in the Perth area each week. There are literally hundreds of play areas to visit, some small and some very large, but all are great fun. We've yet to find a playground that isn't fun. We've had many a playground adventure!

I'm a big believer in letting children play outside, either in the backyard or in a playground. There are so many benefits that can be gained from just playing.

Play really is a fundamental part of childhood and if you have ever read the United Nations Convention on the Rights of the Child, you will know that it states that "it is a child's right to enjoy play and leisure!"

Aside from having fun, children learn so much through the simple act of play!

There's the hand-eye coordination, hand-foot coordination, the development of fine motor and gross motor skills. Children learn to problem solve and take calculated risks.

Then there is the social aspect of play - children learn the art of playing and socialising with other children, they can practise turn taking and sharing. This in turn assists in the development of their communication skills!

Mmm, play is beginning to sound like a therapy session, isn't it!

Without realising, both my little superheroes were participating in a spur of the moment unofficial therapy session. And they both had a ball! 

There was lots of climbing, spinning, sand play and sliding. Livvi's place really does have it all and the play equipment was accessible for children (and adults) of all ages and skill levels.

There was an abundance of sensory equipment as well which was fantastic to see. L spent a lot of time on the spinning equipment. This kid just does not get dizzy, ever!

The twirly slide was also very popular. Both O and L went DOWN and UP the slide numerous times! There was lots of "yee haaing" and "woo-hooing" to be heard!

After roughly an hour of play, they both tired of the area and wanted to go somewhere else. So it was onto one of our favourite play spaces, Woodbridge Riverside Park. Now considering that rain was forecast for the afternoon, I was hoping that the park would be relatively clear of other people. I was completely wrong.

Woodbridge Riverside Park, or the pirate park as my little superheroes know it as, is a fantastic play space. It has a flying fox, a sunken pirate ship, climbing equipment and a lot of natural play areas and it is a very popular play space for families.

Unfortunately for us, there were loads of people enjoying the area and the busyness of the area became too much for both O and L. We weren't there for long before they were both begging to go somewhere else.

While this wasn't a great thing to hear them asking to go somewhere else, it did mean that they were both recognising the signs of anxiety within themselves. This is a good thing!

One of the aspects of this park that I just love, apart from the fact that it has an on-site coffee shop, is that scattered throughout the park are keyword signs. It really is an inclusive play area. We are already familiar with these signs as we regularly use them with L when he struggles to verbally communicate with us. L's face really does light up when he sees the signs that he recognises and can use.

Before we left the Pirate Park, O and L were fortunate to spot and collect a painted rock. Throughout the month of April we participated in the #autismrocks project. The idea behind the project was that people would decorate small rocks with autism awareness messages and they would then leave these decorated rocks in public places for people to find.

The #autismrocks project was based on a similar idea, I just can not recall where the idea originated. Well since then, the idea of leaving painted rocks in public spaces has really taken off and it is now popping up all over the world. Here in Western Australia there are a huge number of people who participate and while we have left a lot of decorated rocks in play areas, we had yet to find a rock.

You should have seen my little superheroes faces when they realised what they had found. L guarded the rock with his life and I am sorry to say that their first rock is probably never going to be re-hidden! The idea is that when you find a decorated rock, you re-hide it for others to find. Not this little gem though! L has not let it out of his sight!

After finding their very first rock, both O and L were keen to find some more rocks, but at a different park!

So off we went -  a dual adventure, playground and rock hunting!

We located a new park that was completely devoid of other people, albeit it was a little wet at that stage. O and L had so much fun, there was lots of squeals of joy as they found rock after rock.

They both re-hid several rocks and I currently have two in my car to re-hide at another park at some stage. I had to bribe them back into the car with the promise of buying them lunch, chicken nuggets and cheeseburgers of course!!

O was stoked to find out the next day that some of the rocks had been painted and hidden by one of her school friends!

And that was my Tuesday, so much more fun than sitting in a car or at specialist and funding appointments. Although I'm not sure what is more tiring, a typical Tuesday or running around like a head less chook on a playground (and rock hunting) adventure.

I know which one I'd prefer to do on a regular basis! Bring on the next school holidays!

Sunday 9 July 2017

The wild and the calm.

I've had many, many people pass the comment to me that life with autism seems hard and wild and I have been thinking about this a lot. I've also been asked many times how do I remain so calm - that I have the patience of a saint as I am so calm but I'm not sure if that is true.

Life with autism is wild but within the wild there is always calm. The wild and the calm balance each other out.

L is my incredible, uncontrollable ball of never ending energy. He constantly buzzes around superhero headquarters, jumping on, over and climbing under furniture. He fills our lives with constant laughter, noise, lots of WTF moments and the occasional trip to the Accident and Emergency Department of our local Children's hospital.

His world, and our world, really is where the wild things are. We don't need to read the book, we live it. Every. Single. Day.

L is very much a Mama's boy. My boy. L is my wild hearted child.

But the truth is that sometimes the wild in L's heart makes me emotionally, mentally and physically tired. Completely and utterly exhausted.

There are the days, weeks even, where it feels as though L and I are constantly clashing. That nothing that I say or do is right. Life, at times, feels as though we are playing a constant game of tug of war. I set boundaries for L and he is constantly testing them and then jumping clear over the boundaries.

L is a child that likes, nay loves, and needs to be in control. He always has been. And at times I feel as though he has joined the Rebellion. L tests my patience on a daily basis.

My patience is the frayed rope that is desperately trying to reign him in and he's on a swing on the other end, going higher and faster. I do worry about what may happen if my last bit of patience is ever used up. Will the rope break? What will happen to L? Where will he end up?

But then I look at photos of my little superhero and I no longer worry. I have lots of photos of him, mostly taken using my phone when he isn't aware - he isn't a huge fan of the camera! I am always drawn back to photos of a spur of the moment visit to the beach.

The last time we took the little superheroes to the beach, they were both having a fabulous time frolicking in the waves without a care in the world. In the photos that I took that day, I can see his, and O's, fiery little souls captured and beginning to calm as they played.

Watching them play in the waves was an epiphany to me about our life with autism and two wild hearted children!

To me, ocean waves are both beautiful and wild. Ocean waves dance and crash and roar onto a beach and from a distance it seems like absolute chaos. I have always felt a connection to the ocean and have found peace in sitting and watching the waves play with the shore. I feel calm and at ease when I can sit and watch waves play.

But behind the chaos of the waves, there is calm. If you think about it, behind the waves there is a quiet force at work. A gentle giant that is constantly pulling, fighting and guiding the ocean to attempt to create order and calm amongst the waves.

The moon and ocean - both at odds with each other but also both working together.

Myself and L - constantly at odds with each other, but also working together to navigate through the minefield of life with autism.

My epiphany was that my role is not to be at odds with L (and O,) my role is to simply be there. To be there to try to guide them on this roller coaster ride.

I am the calm and consistent. L is the wild. I am not there to calm L's wild, I am there to quietly pull him back into order, to keep him on track.

Life needs wild. There is a place for calm as there is a place for the wild in this world.

I now let L be wild. And while he is being wild, I simply sit back and appreciate the incredible beauty and sheer hearted stubbornness that exists, and will always exist, within the heart of my wild child.

L is the wild, I am the calm.