Saturday, 2 February 2019

Be the Change that You want to See

Just recently a number of Autism advocates have been shamed, ridiculed and bullied on various social media sites. Some are self advocates and some are advocating for their children. Some have been forced to shut down their social media sites due to the level and intensity of bullying that is being thrown at them.

Those who are self advocating have found their voice and are able to do so. 

In my case, my little superheroes are 9 years of age and 6 years of age. They've yet to find their voice to be self advocates. So until they are capable of speaking up for what they need, I am their voice. There are many other parents and carers who are in my position and who speak on behalf of their children. Some of these children are young children, some are adults. The children (or adults) that we advocate for, have yet to find to find their voice.

All of us who are advocating for either ourselves or our loved ones are doing so for one reason. And one reason only.

We want to bring Autism from out of the shadows and into mainstream society. We all want to spread a little Autism awareness and acceptance far and wide.

And to do that, the bullying and silencing of others needs to stop. The shaming, the ridiculing and the ostracizing also needs to stop. Pronto.

We need to spread Autism awareness and acceptance with love, respect and adoration. We need to remove the shame, the sorrow and the fear.

The longer that the bullying and the ridiculing of others who want the same thing as us continues, the longer that Autism will be seen in a negative light in society.

Every marginalized group in history has faced, and often still is facing, this challenge. They're seen in a negative light by society and this breaks my heart. And sadly nothing will change until we are supportive of each other.

Find the courage to speak up for yourself or your loved ones. No matter what group you are part of, be the voice that you or they need. Be the change that you want to see in this world.

We're in this together. Let's be supportive of each other and spread awareness and acceptance far and wide.

Saturday, 12 January 2019

The Appearance versus The Reality of Our Autism Journey

Looks can be deceiving and to an outsider looking in who knows very little about autism, our life, at times, must look quite confusing. On reflection, I can see why we get the odd comment and odd look for time to time.

But what people see versus the reality of our autism journey can be quite different. 

So here are a few appearances and their reality's of our autism journey. Keep in mind that many of these appearances versus reality's are common among other families who are also on an autism journey.

To an outsider it may appear that we are constantly running late but the reality is that when we are running late it is often due to a meltdown from one or both of my little superheroes. The wrong socks, shoes too uncomfortable, shorts that have pockets in them ….. all of these and more can cause a meltdown. And when O or L are in meltdown mode, there is absolutely nothing that I or Daddy superhero can do other than ride out the storm. Then once my little superheroes have calmed, we start again. And if we're not running late, we're running super early. Why? So that we have plenty of time just in case a meltdown does occur! 

It may appear that my little superheroes are "just having a tantrum." The reality is that they are in meltdown mode. Please, please learn the difference between meltdowns and tantrums as they are not the same. They're not having a tantrum because I wouldn't buy them a lollipop at the shops, they're in meltdown mode due to the sensory input around them.

To an outsider it may appear that O and L have awesome toys and gadgets aplenty. But the reality is that the majority of these toys and gadgets serve a therapeutic purpose. L does two hours of intensive speech and occupational therapy a week during school terms, O does one hour every fortnight of occupational therapy and psychology respectively during school terms. From these sessions we often have homework to do to extend on the skills that they are both learning in their respective sessions. As a result, I can turn any toy or gadget into a therapy tool, hence our living room and the bedrooms look like an occupational therapy room!

I may appear to be just a mum. The reality is that the terms proprioceptive input, interoception, executive functioning, postural stability before distal mobility and many more are more common in my everyday vocabulary than the terms play date, laundry or housework.

I may appear to be a bit of a know-it-all when it comes to autism. The reality is that I don't know it all about autism. I know about my little superheroes autism, I have to. I want the best for them and because of that I can constantly reading to further develop my knowledge. The more I know, the better equipped I am to assist my little superheroes. I know what it is like to fight for what my children need at school to be successful and as such I will offer to help others. Not for the gratitude from others. Not for the acknowledgement from others. I want to help others so that no children with additional needs are left behind.

I may appear to be a forgetful mum (or bad mum depending on who you ask) for forgetting O's library bag for the second week in a row. The reality is that I have more important things to remember to pack in her school bag and in L's school bag each day. For example I remembered to put her block out ear protectors back into her bag and these alone can mean the difference between a good day at school and a tough day.

I may appear to be "that mum," the annoying one. The Mum who is always at the school, always speaking with my children's teachers. The reality is that if I don't speak up for what my children require, then who will?

It may appear that my little superheroes are enjoying a run around on the playground equipment every afternoon after school. The reality is that they are both receiving some extra sensory input after school to help keep them grounded. They've been craving this sensory input all day and receiving it now, may mean that we can prevent a meltdown later in the evening.

I may appear to be not enjoying the social gathering/party/event that we're at. The reality is that I am looking for sensory inputs that could potentially put O or L, or both, over the edge. And if I spot any potential sensory inputs, I am then pre-planning on how I can prevent them entering into sensory overload. I am looking for escape routes that L may use when he takes off at full speed. I am looking for potential danger spots that L won't see if, and when, he takes off.

I may appear to be a highly strung mum who just needs to relax and let her kids have fun. The reality is that L has no sense of danger or fear what-so-ever and when he takes off to escape the sensory input that often bombards his brain, he is not aware of his surroundings. So I have to be. He isn't aware of road safety or water safety - although he is much more aware than he was three years ago - so at the moment, I am his eyes and ears. I am his safety blanket.

I might look like I am some form of a permanently exhausted penguin and the reality is that I am. I have two children who both have additional needs which means that they both need additional support on a daily basis. 

And you what? I wouldn't change anything for the world. Our autism journey may be tough at times, but no two days are the same. And that is the way that I like it.

My children are my world and they are both blessings to our family.

Monday, 7 January 2019

Anxiety. How can it manifest?


It's one of those tricky issues that is quite common in society and yet it seems to be some what of a taboo subject to talk about.

And it is all due to the fact that anxiety is a hidden illness.

Some people in society seem to believe that if they can't see the illness then it doesn't exist. This makes it extremely difficult for adults to talk openly about their anxious feelings. Now imagine how difficult it is for children to talk about their anxious feelings, when unfortunately, some people simply don't believe that children are capable of suffering from anxiety.

Children suffer from anxiety? How can they? Children have nothing to worry about. Children, at times, have a lot that they worry about. 

Friendship woes. Pressure at school to perform academically to a high standard, thanks NAPLAN. They may have issues at home that are affecting them. Peer pressure seems to happening at a younger age. Being bullied by their peers. They may take on the worries that their friends have.

Some children may express to their parents, teachers or peers that they are worried, others may not. O is one of those who will not tell a soul that she is worried or anxious. Partly because she is still learning how to recognise the internal feelings of her anxiety. And partly because she doesn't want to burden others with her worries.

The number of times that we, as parents, have been told that O can't possibly suffer from anxiety issues is staggering. And this is because she doesn't present as having anxiety.

You see, in children, anxiety can present in a number of different ways.

O's anxiety is sneaky, it doesn't often look like worry. O's anxiety manifests itself in a variety of different ways, and it can differ from day to day.

So what should you be on the look out for? Read on!

O's anxiety sounds like physical complaints …. "My head is sore," "My tummy hurts," "My heart is beating too fast," "My throat hurts when I swallow," "My muscles in my legs hurt." This makes it difficult at school when she presents at the sick bay and appears to need to go home due to illness. We now have a flow chart for O to work through prior to attending the school office and again if she does end up in the sick bay. Nine times out of ten, it is her anxiety causing the physical complaints. The hope in using the flow chart is that the school staff can attempt to assist O with whatever is causing her anxious feelings to determine if she is anxious or in fact ill.

O's anxiety can manifest as anger, verbal outbursts, irritability, defiance and frequent meltdowns. And it is well and truly after she has vented that we are able to get to the bottom of what is causing the anxiousness.

O's anxiety manifest itself as procrastinating in doing the things that she ordinarily loves to do like choir and cubs and sporting activities. O loves school to the point that when she is sick, she still wants to go. The mornings that she is overly reluctant to go to school, we know that her anxiety is at play. O has always been a social butterfly, she struggles in social situations but she loves meeting new people so when she decides that she just wants to sit in her room and NOT be social, we know that's her anxiety speaking.

O's anxiety can manifest itself as becoming clingy, worrying about where other family members are and when they'll be home (even though she knows where they are and when they'll be home.) Her anxiety can manifest itself as O asking the same question over and over and over again

O's anxiety can present as BIG emotional feelings that are too overwhelming to describe or to manage. Cue meltdown central.

O's anxiety can manifest as feeling physically, emotionally and mentally exhausted all of the time. Her anxiety can also present as fatigue …. "I'm too tired to play, too tired to run, I just want to sit."

O's anxiety can present as an overwhelming desire to control those around her, including her friends, and events that she is involved in. If O can control what is happening around her, she knows exactly what is going to happen and the unknown becomes the known.

O's anxiety can manifest as an inability to pay attention to what is happening around her.

O's anxiety can manifest as having a super high expectation for herself at school.

O's anxiety can also present as worry. O will worry about the big and the seemingly small things in life. But to her, the small things are often the biggest.

O's anxiety manifests itself as her twisting her hair, chewing on her shirt collar, chewing or sucking on the lid of her drink bottle. 

O will internalise all of her anxious thoughts and feelings all day and then explode in the afternoon the minute she walks through the front door.

On any given day, you may see all of the above in O. Other days, she may only present with one or two of the above.

The ways that O's anxiety manifests itself is quite common in many children as well as for many adults.

The next time that someone says to you that they are anxious and you just can't see it. Please take a closer look. Look at their body actions. Are they desperately trying to tell you something.  

Saturday, 29 December 2018

My Favourite Autism Awareness Memes, 2018

This year I have gotten into the swing of creating memes for my blog and for our social media sites. I wanted to share a few of my favourite memes that I have created!

I am very big on spreading a little more Autism Acceptance and Awareness, so here are a few of the memes that I created throughout 2018 which are along this line!

Friday, 21 December 2018

My Favourite Memes, 2018, Part Two!

This year I have gotten into the swing of creating memes for my blog and for our social media sites. I wanted to share a few of my favourite memes that I have created! 

The following are a little tongue in cheek, just for fun, and describe our crazy, fun filled autism journey.

First up, the 12 days of Christmas (an Autism version!)

Two for all of you who feel like Mumbie's and Dadbie's!

Monday, 17 December 2018

Additional Needs versus Special Needs .... Which phrase do you prefer?

Additional Needs or Special Needs …. which phrase do you prefer?

Before we get into discussing the phrases, let's look at what these terms are defined as.

The Merriam Webster dictionary defines special needs as "any of various difficulties (such as physical, emotional, behavioural or learning disability or impairment) that causes an individual to require additional or specialised services or accommodations (such as in education or recreation.)"

The term additional needs is often defined as an indicator that a child requires extra support and/or services to enable them to be able to fully participate in education settings.

I will often refer to O and L as having additional needs as opposed to being special needs children and there is a reason why.

I truly believe that all children have their own unique special needs, regardless of whether they have a diagnosis of any description. All children are special in some way and the things that make them special, make them unique.

Are my children special? Yes they certainly are to me, their Dad and to those who love them for who they are. Are they considered special by other members of the community? There's a fairly big chance that the answer is big fat no! To the majority of society my children's needs are not considered special.

Do my children have additional needs when compared to their peers at school? Yes they do and I have no doubt that while their needs may change as they grow older, they will always have additional needs throughout their schooling. They both require support while at school, often more support than what their peers require. 

L needs frequent sensory breaks so that he can keep on track of what is required of him. O requires support to manage her anxiety that frequently crops up while at school. L requires one-on-one support when it comes to independent work. Both O and L have sensory processing difficulties and as such their teachers need to be aware that at times, O and/or L may enter into sensory overload from the environment around them and that they may require support when in sensory overload or at least some level of understanding from their teachers. O is working at a much higher academic level than some of her peers and as such she needs to be extended in her learning to keep her engaged at school. 

O and L require these additional supports to enable them to be able to fully participate in their own education. If they did not have these supports in place, I can only imagine the larger struggles that they would both have while at school.

In the schooling community children with additional needs are referred to as special needs students. There are support units within education departments that are known as Special Needs or Special Education Units. And this is fine with me. I am fairly certain that this will always be the case.

The two terms are interchangeable but know that if you are speaking with me about my children, I will often use the term additional needs.

Sunday, 9 December 2018

Sensory Santa 2018

This is our fourth year of visiting a Sensory Santa and three out of the four years both my little superheroes have been in the photo with Santa. Winning!!!

Essentially Sensory Santa, or Sensitive Santa as the sessions are occasionally known as, is held in selected shopping centres that host Santa each year leading up to Christmas. Santa's Kingdom is opened up to families whose children have additional needs prior to the normal shopping centre hours. Families book in advance so that there are no queues and as such no noisy crowds of people. The lights are kept low in the area, there is very little or no background music and very few staff within Santa's Kingdom itself.

All these factors often contribute to children who have additional needs struggling to participate in activities that families who do not have children with additional needs, often take for granted. Too much noise or bright lights and L just shuts down as there is far too much sensory input.

We first heard about Sensory Santa in 2015 when we were living in Perth. At that stage the only way that we could get either O or L to sit anywhere near Santa was to have Daddy Superhero and I in the photo as well. Cue an impromptu Christmas family photo.

In 2016, Santa was running quite a bit late - sleigh mechanical difficulties and he had to feed his reindeer - so by the time that Santa arrived, L was completely over the whole Santa thing. But we did get a wonderful, smiling photo of O and Santa.

Last year, we'd just moved to Queensland. We found a Sensory Santa not too far from where had moved to and both the little superheroes were keen to visit Santa - they were a little worried that Santa might not have realised that we'd moved. O was wonderful as always in assisting L to feel comfortable. She did all of the talking and kept a reassuring hand on L the entire time. The photo was lovely, O was sitting on the chair with Santa while L was sitting on the floor snuggled into O's leg. O is an amazing big sister.

This year, well the Santa that we visited recently was hands down, the best one yet! He either had a lot of experience in engaging with children who have additional needs, had done a sleigh load of training, is a natural or a combination of all three! Both little superheroes were keen as mustard to visit Santa but when we arrived, L shut down. He was able to make to the inside of Santa's Kingdom and then that was it, he parked himself on the floor and started grunting at us. O on the other hand, marched straight over and parked herself on the chair next to Santa!

Santa sensing that L was struggling, turned his back and essentially ignored L - which was the best thing that he could have done. Santa had a short conversation with O about what she would like for Christmas before getting up to go and talk to his elves.

At this point, L was intrigued by the bubbles that one of the elves was blowing into a fan, so up he hopped to go and sit next to the fan. When Santa saw that L was happy and comfortable playing with the bubbles, he snuck back into the area and sat on the far end of the chair next to O. By that stage L was obviously feeling comfortable enough to sit on the chair as up he hopped and snuggled into O and then Santa just went with the flow!

At one point both O and L had their feet tucked up on the chair, so that's exactly what Santa did!

When O and L were trying to catch the bubbles, Santa joined in! When L started dabbing, so did Santa. I would never have thought that we'd have difficulty in choosing which Santa photo we wanted!

It was such a positive experience for both O and L. And even better, L let Santa put the sparkly reindeer antlers that all his visitors received onto his head. This was a first, L won't even give Santa a high five or fist bump. To allow Santa to touch his head, wow!

It makes me so very happy to see more and more shopping centres becoming involved with the Sensory Santa sessions. Families who have never been able to get photos of their children, both the young and slightly older, are now being able to add this yearly tradition to the calendar. 

And touch wood, we've not had a screaming child in a photo in four years! The little superheroes have been all smiles!