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 know 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.