There are days I wish I could erase, and this photograph speaks a thousand words of a Mum who isn’t afraid to admit that some days I struggle to hold it all together and it’s okay not to be okay.
The days when I finish the day as a broken woman, are the ones I wish I could forget.
These days aren’t because of job I do, or the hours I work. They aren’t because of the people I deal with or the struggles of daily life.
They are because of autism in our lives.
The part of him who some days I cannot understand, with all of who I am and who he is to me, some days the autism in him defines who we are.
Today was one of those days.
A day when I realise what inclusion really means. When the harsh reality hits me that I’ll always be one of the very few people who actually understands what it’s like to be in ‘his world’, and that he isn’t going to be like everyone else that surrounds him.
A day when I find myself focusing so much on the negative parts of what he cannot do, completely forgetting the amazing achievements that he had made so far in his little life.
A day when I feel like I’m failing as the one person who is meant to keep it all going when no one else can.
A day when no strategy or coping mechanism will stop his screaming, his anger, and his ability to do only what’s on his agenda despite what plans I have made for him.
A day when I realise that the strong-willed individual I created has somehow exhausted every part of energy I have to fight, to cope, to manage his behaviour because again today, I feel like the challenges he faces because of his autism, is too much.
Despite the tears from not only him, but me, days like today remind me that behind me I have two people in my life who hold me up when I am falling, who never give up on me when I want to give up. Life changes and it’s often the people who you once underestimated that are there right by your side when you need them the most.
Two people who constantly remind me that bad days happen but it’s okay to lose your shit from time to time because that just makes me human.
Two people who hit me with the truth when needed, who give me a kick up the arse to remind me ‘I’ve got this’.
They will never understand the value of their presence in not only my life, but his life too.
Me and him are lucky to be surrounded by these two people who have never once failed us or let us down.
We will love them unconditionally. Always.
Today can take a big fat, middle finger. Tomorrow is a new day, and I’m yet to see what it will hold, but one thing is for certain, I will readjust my sails, fight those battles, but I’ll never give up.
To every person struggling – remember ‘we are all just winging it’
Jade is a 28 year old (she thinks) Mum to four year old Grayson who is made up of a combination of the best and worst of who she is. He’s recently been diagnosed with autism and although the journey to get that diagnosis has been long, drawn out and heartbreaking at times, she knows they are still in the very early days of their autism journey. Autism was just a word, something she never knew anything about. Now it’s daily life, and for as much as at times she finds it hard to deal with, it’s helped her to see the world differently, for the better.
Jade contributed this post as part of our guest post series from parents/carers who are members of the Joseph Spectrum Squad, parent/carer group on facebook.