The day I realised that being a ‘Special Needs Mum’ was part of my identity was an interesting moment.
I was on the other side of the world, in Cleveland, Ohio. I had packed myself up and taken myself to the other side of the world, to work on me.
To learn from someone that taught keeping your priorities straight. It was the first thing to get right, before anything else.
Which seems like a weird time to embrace a statement like ‘I am a special needs mum’. I expected to be having realisations around being a person first, a woman, a wife, a mum, a business person, then a carer. But that’s not how it rolled out at all.
I suddenly realised that not acknowledging and embracing the ‘special needs mum’ part of me, made it impossible for me to get my priorities right and to create balance and peace inside my own head.
I was trying to be 100% woman, 100% wife, 100% business woman, 100% mum, then figure out being a special needs mum in the cracks.
It was not possible.
It did not bring me peace.
This moment set me on a journey to sell my bookkeeping practice that I had built from the ground up. To really invest in the people I found, in the situations I spent time in, as a special needs mum.
The thought of selling my bookkeeping practice didn’t occur to me at that time, As I did things like One Life Saving Step, I began to realise that there were literally hundreds of other parents like me around me everyday. Parent’s who were also struggling with how to balance all of their rolls and their own mental health too.
At a certain point Matthew’s care got too intense for me to continue to do both. To balance my bookkeeping practice with his care and my mission to support other special needs parent’s with their mental health and nutrition. I wasn’t sad.
Yes, it took a little while for me to process. Because of that moment – accepting the intensity of my situation. Accepting that being a special needs mum was now part of my identity – made it easy. Made it the natural progression of my journey.
No one can tell you what your journey should look like.
Our state’s Early Childhood Intervention program accepted Matthew into their program 3 years earlier. The case coordinator said to me, within half an hour of meeting her, “So when are you going to stop your business?”
Firstly, back then I was still in a state of shock. No one knew what was wrong with my son and had any idea what the future would hold. Also it shocked me that you could have a child as sick as mine, be expected to suck it up and carry on. As if that was perfectly normal.
Then this lady comes into my life, “When are you going to shut down your business?”
She managed to say it every time I saw her over the next few weeks. Writing a letter to her manager, I asked for someone else.
I could not work with someone who didn’t have the same goals as I did. I couldn’t work with someone who was going to question my other life choices, without knowing anything about me or even trying to understand.
Owning my own business was just what I wanted, I loved the flexibility. Let’s be honest, I loved being able to bring in an independent income, and not feeling like a burden on the family. I also liked having my own project to think about outside of nappy changes and house work.
Do others sometimes know something you don’t?
Did that case manager know somethings I didn’t about how Matthew’s life was going to be? Probably.
But just because something is going to be hard or an unusual way to approach something didn’t mean it wasn’t the right way for me.
I am so glad I had that woman replaced though.
It was my first lesson in changing care providers, something that most special needs mums and parents have to do during the journey.
It was over 3 years later that I found myself in Cleveland, saying to someone ‘I am a special needs mum, and I just realised that is who I am.’
What does this have to do with getting yourself back?
How is this ‘not just a special needs mum?’
Well this mum has always had a passion for business. Known that she had to look after herself if she was going to live a long and happy life.
Playing the roll of the panicked, stressed out special needs mum, took me away from that person. I embraced being a special needs mum, it was wholly different journey. It allowed me to refocus and adjust, to find peace in that.
Only then, was I able to choose what I did with my time. After adding something to my diet which helped my mental health, beginning this journey, I choose to work on me.
To me that state of panic and stress, made me just a special needs mum. Most of us are like that.
Stepping back, embracing that. Making it one of my strengths, and my reason to be in business, to build relationships, and to take care of me. That made all the difference.
How do I feel about this now?
Having lost my precious little boy?
Having lost Matthew doesn’t make me any less a special needs mum. I still have all of that knowledge and experience. I still am the person I became, learning to be Matthew’s mum. Loosing him didn’t take that away from me.
So most days I choose to use my experience as a special needs mum, to support other special needs mums. It’s a complex and painful journey in so many ways. The people who can stand by you and say ‘I get it’ are some of the best people in my life.