Tuesday, 2 April 2019

World Autism Awareness Day

This post is going to be raw so forgive me if I ramble… I always do but this post is probably going to jump around a bit in an attempt to convey everything I have been feeling of late.

I was that expectant mom who researched and prepared for everything, I was young and in many ways super naive but boy did I want to be the best mom my future kids could ever need or want, I mean all I ever wanted was to be a mom… a designer on the side you know but to be a mom now that was going to be my greatest achievement.

I did everything I possibly could to ensure that my baby would be born healthy- I didn’t smoke or drink, I ate healthy I exercised and I researched everything I possibly could, I cradled my bump and kept a pregnancy journal and I eagerly awaited my picture perfect piece of perfection… and then there he was at 36 weeks we welcomed this tiny and incredibly yellow 2.5kg baby boy into the world and he was everything and more than I ever could have dreamed and hoped for.  I vaguely remember the NICU pead telling me the possible long term effects of premature birth in children and I remember him specifically mentioning ADHD which I shrugged off at that time I honestly believed that ADHD was a farce that irony is something that still sticks in my mind. Of course for us ADHD was just the start of our path towards our Aspie diagnosis but still the irony is not lost.

I remember thinking that whatever we were faced with we were so incredibly prepared we would be ok, we would overcome as we had already but nothing prepares you for autism and that is the honest truth.

Autism is something that has affected not only my children but each and every person that has crossed our paths it has been both my greatest blessing and my must gut-wrenching test that parenthood could have ever given me.

It has allowed me to see the world through completely different eyes and in a completely different light, it has opened my eyes to difference and acceptance and helped to embrace it.

My sons are an incredible gift and Autism is as well, I am still learning on a daily basis and my sons have taught me more than I ever think I could ever teach them.  They have taught me that things can be black and white and yet everything in-between, that my truth and your truth can be completely different and yet they can still both be the truth, that sight and sound and touch/texture can be a literal assault and that what some may perceive to be a weakness can be someone’s greatest asset if encouraged in the right direction.  

I have learned that a heart can swell with the most immense pride at what may be perceived to be the smallest achievement and that my children as smart as they are they are still children who test boundaries and take chances and yet give you the same ol goo goo eyes that every child gives their parent when trouble comes their way.

But I am not going to lie and paint a picture of unicorns and fluffy clouds because the picture isn’t picture perfect by a long shot- the amount of tears I have cried is immeasurable and the amount of times I have sat and wondered are as well, I have looked into the eyes of my child and he has looked back his eyes filled with pain and frustration, confusion and defeat, I have seen the struggle, the social mental and physical battle that comes with Autism- I have struggled with words when they have looked at me and asked why they cannot be normal, why they struggle or why they are the way they are.

I have argued with people and been on the constant defense when it comes to medication and treatment choices and I have faced losing everything in order to pay for my sons specialists and meds, we have gone through the mill and back again trying every possible old wives tale, natural and non-natural alternative and route available and I have screamed with sheer frustration as I have driven to collect my child after suspension or even worse expulsion, I have held my children as they melted down punching and kicking me or smacking their head against a wall and we’ve dealt with the shame and disapproving looks as our seemingly ‘normal’ looking kids have melted down in public on an epic scale. 

It is heart-breaking and gut-wrenching and to see your child in pain whether it be emotional or physical is something I would not wish upon anyone but it is something more often than not which we and so many other special needs parents and families are faced with on a daily basis.

There have been many times when I have asked myself why- why the universe saw fit to give me this task, there are many days when I question whether I have the ability or strength to give the boys the support they need, days when I feel like I just can’t anymore, I melt down, I scream and cry and lie in bed heartbroken and defeated only to get up the next day and push on because at the end of the day if my children can then so can I, if they can face the world then my place is beside them, they are incredible souls with different outlook that if fostered correctly and given the chance to grow can do so much in a world that has become so ugly.

Autism is something that entered our lives unexpectedly, it is both beautiful and tainted, both a gift and a trial but I am so incredibly proud to be a part of its world and I am so incredibly grateful to the many people who have loved and supported us along this journey and to the many amazing children I have worked alongside and crossed paths with each with their own special needs and ways each with a lesson to teach and an infinite amount of love to give.

No comments:

Post a Comment