Monday, 18 November 2013

You can't blaze trails without us ~~ Flash.Blog.11.18.13 - What Autism Means To Me - #thisisautism

I love somebody with Autism ~ I love many people with Autism or those who consider themselves Autistic or perhaps led lives undiagnosed or are still discovering how Autism touches their own lives.

Our youngest children have challenges that might at first glance appear to be “behavioural”.  I had always feared that term & since our son’s diagnosis have avoided using it.  I have felt put into a corner during a pre-interview for our local ABA services & felt that the term was being used to blame him for the things that he faced in his everyday life.  Was this because that is how it was framed or was this because he is bright & therefore would try to manipulate the situation?  Far from me to be an expert in the area of Autism or A.D.H.D. back then or even today, even I was guilty of tending to be so confused by his bright mind & his need to negotiate to the point that it would just became exhausting.

Today I DELIBERATELY  do not use the term “behaviour”  ~
for I get him – I believe I always have – I just didn’t know how to express it to him, for him or in his everyday life to support him.  Now I do – he has Autism & I will Never.Ever use this as an excuse to explain away his behaviour...

As he matures – he can sure be challenging & sometimes I can determine when he might be trying to get his way ~ as is human nature ~ but I can guarantee I can tell when it is about his sensory issues, his executive function challenges & his need to be busy almost all of the time (it’s like a little Brain.Gym the way he always seems to be asking what’s next to fill gaps of pre-planned activities) & I will continue to use those areas of need to support him & even challenge him ~ for these areas can sometimes be used as strengths too & that is how we’ve found our greatest success so far.

As for how Autism can be a less visible disability ~ for our daughter – it might appear to those who don’t know her at all & for some who think they know her would see her anxiety as defiance when it is usually just  about the need to try in some way, any way to control her environment & to feel safe....  I could continue with how we are just now seeing similarities in her areas of need with those of her brother (hers seem to be much more noticeable now or somehow developing through her experiences in everyday life) ~ & with her being that much older – I foresee people thinking they get who she is – when they might be surprised to find out she too is dealing with Autism.

***There are symptoms or daily challenges &/or secondary disabilities which aren’t always obvious to others (who just don’t happen to be touched by Autism directly or indirectly or to have become familiar through various campaigns or even news items) & sometimes even with those who do:

Emotional Dysregulation & Stamina Levels have been central with our children – but not necessarily constant or daily issues.  Motor planning, Learning Disabilities, Low Muscle Tone, Digestive or “Gut” Issues, Food Sensitivities & Intolerances & even more common or commonly recognized Food or General Allergies. 

Many of these circle right back to the Sensory System & although I feel I learn more & more every single day, I make an effort in some areas & sometimes just by living with Autism in our family & yet I still feel overwhelmed by it all ~ as I’m certain our children do too!  For I have always felt that to live a good, healthy & fulfilling life is to understand our children & that was set in motion the day they were born or even while I was pregnant with them & even while we planned & hoped to get pregnant & to have children together.  This did not change with the diagnosis of our son nor the journey our daughter is now on to confirm, she too has Autism.

So today I share stories of our young children ~ for we are in the trenches with how we hope to navigate, support & advocate for & with them in a world where we are supposed to have better awareness ~ to hopefully enlighten you & ask that you also find it in your heart to accept them for who they are... 

& what does Autism really mean to me ~ it might be best to say ~ Acceptance & Inclusion for our children & for anyone with Autism &/or within the Autistic community in all areas of life ~ at this moment in time we don’t have different dreams or hopes for our children  before his Autism was suspected and eventually diagnosed nor before we started to understand how she might be struggling too ~  we do however know that in order for them to Dream for themselves & succeed in their own dreams – we will have to continue to teach the way they learn best & that is quite often ~Very Different~ than the way mainstream society teaches & expects them to learn & grow ~~ we will help  them to develop their own voices – by any means necessary & we hope to advocate enough that society at large understands & accepts that providing a safety net for them while they are young does not mean they won’t learn to stand on their own & use their own voices ~ however those voices communicate!!

Thank you for taking the time to read & share this Blog Post – on this Flash.Blog.Day!

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