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.

16 comments:

  1. My husband has Asperger's/Autism.... And it can certainly be difficult at times but he is also very open about it so we discuss it a lot so as to help me get a better grasp of the situation. Our communication is IRON CLAD and that's what makes us work!

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    1. My two little ones are becoming much better with their communication, it makes life much easier.

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  2. Although my children do not have autism I have friends and family whose children do. The children with autism that I have encountered are truly special and I believe they understand things on a greater level than we can ever understand. <3

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    1. Oh I totally agree. O understands things on a much greater level than that of other children her age! She really is an old soul at times.

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  3. You are an amazing momma. The best thing is you are learning and you are keeping your composure. The best thing is you are bringing yourself to a level where you understand. Keep it up he is a lucky guy to have you for a momma.

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  4. It surely is very difficult on a a daily basis! You sound like you are just the perfect mama for those two sweet superheroes and they are lucky to have you!

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    1. Thank you, I feel very lucky to have both of them too!

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  5. Thank you so much for sharing so we can understand a little bit more.Your kiddos are superheros! P.S. they adorable.

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    1. Thank you, I think they're pretty adorable too :)

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  6. I loved reading this post so much, I'm currently babysitting my nephew who is autistic and have had a hard time understanding everything he needs from me. But he is an incredible kid :) yours kids seem pretty awesome too!

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    1. Thank you, they are the most gorgeous kids when you get to know them!

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  7. These photos are so cute! I have such an appreciation for how you really explain and understand your children and their behavior. It can be so tough navigating life and learning about our kids but really understanding their situation is so important. My oldest has some of these difficulties as well as he struggles with sensory processing.

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    1. Sensory processing difficulties make life incredibly hard don't they! And because it is another hidden , it is so hard to explain to others.

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