Or ‘Mikeystones’, as I’m now calling them!
If only I had known back then, what I know now. That ‘all in good time’ applies to this kid and that there is no other timeline he’s working on, other than his own.
What a sense of freedom this has instilled in me, as I begin to truly understand what this all means.
Although, I’m yet to fully comprehend it on an ego level. I still battle with what society deems appropriate, and I kind of zone out when people talk about levels and scores. Qualities such as kindness, compassion and humour cannot be taught. Yet he has them all.
It’s taken me several years to come to a point of understanding with this. It was there all along, but with the relentless pull of therapy, specialist appointments and years of hospital, the to-ing and fro-ing of trying to ‘do it all’, left me feeling overwhelmed and a tad exhausted.
I was overwhelmed with it ALL. The pressure of what was put upon me, as the mum to somehow ‘fix it all and manage it all’. However, the true teacher was Mikey who would show us, several years later, how he adapted to his environment to make it work for him. How he used his body and his communication to be understood.
Years later, we would figure this out, that you are the true master of your own happiness and no one else.
Unfortunately, I was focusing too much on one thing in my life at the time, and made no time for self-care. I burnt out. We were heading towards a breakdown in our marriage, and the strain on my friendships and family relationships was inevitable.
Unlike my first baby, who has and continues to develop ‘typically’ and is almost a teenager (eek!); even over the years, with boxes that are not checked or challenges that are faced, it is more-likely to be explained as a very typical and usual ‘delay’ or ‘absence’ (can’t be good at everything, right!). Nothing that can’t be helped with a bit of ‘additional work’. We aren’t talking years of therapy to do what comes naturally to the human body or the usual process of learning.
I received many ‘condolences’ for my sick babies; and as he grew, my disabled son; I actually grew tired of the sadness surrounding it all.
Why weren’t they amazed at his progress like I was? Oh yes, I kept reminding myself, we live in a world, where being different is not actually celebrated as much as we say it is.
Where was the joy, the uplifting feelings of my own gratitude and the unwavering support that things would be ok. He would have a life long disability, but our world supports people just like him, all the time, don’t they? It would be ok, wouldn’t it?
However, the daily responses I continued to receive with ‘oh I’m sorry’ or the cringe-worthy ‘it could be worse’ would get me every time and take me right back to feelings of despair, depression and overwhelm I had felt before.
However, I was fortunate in those early times to have joined a playgroup which allowed me to meet others who were travelling a parallel path to mine. Where their child didn’t tick any boxes at all! We created our own support network, as parents (mostly mums at the time, but sometimes a few dads) whereby we checked in once a week with our feelings of overwhelm, that we knew, on some level, were being understood, despite our different set of circumstances.
I call this my life-line. This was my weekly sanity saver, if nothing else, I dragged my exhausted butt from my bed, put my twins in the car and off we went to our weekly playgroup of children with special needs/disabilities. It saved my soul.
When asked the right questions, parent’s eyes would light up, talking about their child and what inchstones (milestones all the same!) their child was working toward, and what was on the horizon. It was liberating to hear of such progress and joy in a world which at times seems focused on only one thing – unattainable perfection.
As a parent of a child with a disability, I have had to work much harder then that of my eldest daughter to advocate for his needs. Some may not understand this, and that’s ok. Not everyone will understand. It is not their path to travel.
Understanding the significant difference in the first place, helps support the families that need this help, so they may support their child the best way possible. Ask any parent with a child with a disability, they will tell you the hardships and battles they have endured to advocate for their child.
Now I happily realise that he isn’t here to tick the boxes. He is here to show me, and the rest of the world, that by not ticking the boxes, he is changing the status quo. For so long, the strive for perfection, excellence drummed into us by generations gone by is not working. Stress and anxiety are at an all time high in our western society – there is so much more to each individual than the boxes they tick and what others deem as ‘successful’.
So this Summer, with Mikey D’s ‘Mikeystones’; I’ve seen him master riding his bike at a bike park (new obstacles in a different environment). Not once did he run off or dash toward any cars (a pretty regular occurrence once upon a time!) I saw him pick up a hat and run to the mother, to give it to her – ‘hey,hey, hat!’ he excitedly called out to her.
He is seven years old and he is doing life his way. To the outside and usually misunderstanding world, he may look like a little boy who is severely ‘delayed’ but to whose standards is this delay? Our Government, our politicians – you or I? What exactly has been drummed into us?
Is it time to unravel it all – I think it is.
With everything he’s achieved so far in his life, all the challenges he’s faced and continues to face, he continues to keep reaching ahead and push forward.
Some days it’s in leaps and bounds, some days it’s inchstones and other days it’s Mikeystones!