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.

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