Seeing past autism

It’s taken me years to process and get my head around how to even start to appreciate my boys without accepting their autism and ID diagnosis! It wasn’t until about 3 years ago (1 year into my Christian journey) that I actually learnt about a loving God, who didn’t give you autism to teach you a lesson or punish you for your past indiscretions! However, this beautiful life changing revelation also brought with it a lot of sadness and a sense of failure on my part, because for the next 3 years I struggled with understanding how you could live a life where you didn’t have to have autism (because our God is not a God of sickness), and yet autism was a part of my everyday life. Unfortunately, the stresses of raising three boys diagnosed with autism led me to the darkest depths of despair that I’ve ever experienced in my life!

Anyway, yesterday for the first time I had a realisation that my boys are not autism, their identity is not autism BUT they are affected by autism and thus their behaviours, struggles with communication, sensory issues, and unawareness of danger and social boundaries reflects this. I do not love autism, I do not like autism, I believe in miracles and God’s power and that there is no autism in heaven BUT it’s not my job to fix or get rid of autism (because boy have I tried for 9 years to get rid of it), NOW though I can trust in God for that (which isn’t an easy task, but one I am looking forward to trying).

As mum to these bundles of energy, it is my job to provide love, care, attention, a safe environment and nourishment to these boys (even when it means cooking three different meals so that they’ll all eat one thing off their plate). It is my job as their mother to raise them to be the best them they can be- whatever that looks like! AND It is most definitely my job to stand up for their rights, and to speak up for their needs in a society that can be harsh and uninclusive.

It is my privilege to celebrate every success and bit of progress they make- like helping to pull up their own pants, or recognising the phrase “go car” and heading for the door, or amazing progress- when you yell the word ‘stop’ as they go to run too far from you and they actually listen to the word- no bribe required. It is my privilege to learn who they are as individuals and interact with them the best I can. For the first time in a decade, it’s life changing and exciting to be valuing my role as a mum/carer!

The last point I want to share is that I’ve realised that this life I’m living is about seeing past the effects of autism which can too easily steal, kill and destroy your joy, happiness, enthusiasm and zest for life. And I am so very ready to start living a life where I stop comparing my own life to that of neurotypical/ normal situations (it’s just torturous). No one’s life is perfect, and autism is stressful to deal with BUT my boys are beautiful unique individuals and I want to focus on who they really are- their real identity, the essence of who they are BECAUSE they are NOT autism!

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from victim to victor :)

 

The cold grip of sadness clasps my heart as who you really are drowns under the heaviness of struggle

The disgusting injustice you undeservedly experience taints too many of our interactions

Cruel stares and icy judgements uninvitedly pierce our existence when we are anywhere other than the sanctuary of our home

Why try venture out of isolation when the world in which we must live steals or destroys our minute moments of happiness?

A poem by JaimeeRae

For the past decade I have been CONSUMED by autism. My brain has literally focused on the pain, the stress, the unpredictability and insane workload autism brings with it. Whether it’s the autistic spectrum disorder diagnosis itself or the unpredictable sleeping pattern, excessive anxiety the children experience, intellectual disability, the non-verbal/ unclear communication system or sensory issues- a combination of any of these has and does wreak havoc in my life. As if this wasn’t enough, trying to access things in society such as early childhood centres, supermarkets, playgrounds, doctor’s offices, shops- far too often these experiences have been riddled with negative judgements and comments from strangers.

Thankfully, these past few months have helped me to realise that I am no longer consumed by autism and stress- yes I am definitely still affected but I am in a more exciting headspace! I feel as if the chains of autism that have bound me for years are finally broken!

I am excited to be in a headspace where I am looking forward to further developing my self-identity.  An identity that will co-exist with my firmly established identity  of “mama” “mum” or “mommy” to three beautiful boys.

Kororia ki te Atua…

 

My definition of Acceptance

having autism in my life for the past 10 years has lead me to experience some of the scariest and most stressful moments I’ve experienced, as well as being a major contributing factor to my downward spiral into depression.

However, from these depths of despair I have been learning to redefine my life and one of the significant changes that continues to help me figure out how to THRIVE in this life is because of my redefinition of acceptance.

For me Acceptance is when you acknowledge the challenging, excessively demanding lifestyle and workload that a life as a solo mum of 3 beautiful boys affected by autism brings.

Rather than being okay with the current reality my focus is to learn how to best live with the challenges of unfairness, the pain of injustice, and the high levels of stress involved in daily life.

Acceptance in this instance allows me to withdraw my energy from the loss, shift my attention from the lack, and begin to invest in life

A life where anytime is a great time for a miracle, nothing is impossible with God, and love never fails……

 

me me me me me :)

The purpose of my blog is to be able to have a place to write down my thoughts- in all their honesty, and I hope those who read it can relate in their own way to my journey. Also, I would love for readers to share in my newly founded belief that “YOU can live a life where YOU thrive regardless of your circumstances”.

Some minor details-

My name is JaimeeRae and I am :

  • a solo mum to three beautiful boys – (diagnosed with autism 😦 ),
  • a “new” Christian -(IMPORTANT NOTE- I am about relationship NOT religion)
  • of Maori and Niuean descent – (I have so much to learn about both of these cultures that make up who I am)

Thanks for reading