Penned on May, 2017, after finally hearing the words - "Your son has ASD".
1 in 100 children are affected by one of the many disorders on the autistic spectrum, and they are all as unique and individual as a fingerprint. That means 1 in 100 carers have been chosen to help one or more of these souls navigate and nuture their way through this life.
This is my story.....
C O N F U S I O N.
I’ve been in a constant state of it for four, long, years.
My mind skips from thought to thought. It never stops trying to work out the whys, the how’s or the what-if’s. Why can’t I fix this? How can I do it better? What if I had done things differently?
What if, what if, what if?
No matter the reassuring, dulcet tones from loved ones, specialists and strangers, it is hard to quiet the incessant voice within.
The voice that tirelessly tries to calculate, correct and make sense of why you can’t connect with the very flesh and blood that came from your own?.
Spectrum days, as I call them, can be relentless & exhausting. I have all but sold my soul to understand, accommodate and discover ways I can help my child thrive. To make this world less jarring for him.
In my minds eye, if my son was part of a tribe, he would be their greatest asset. He would be their fastest runner, their best hunter, and their greatest protector. He would be their best problem solver, builder and leader.
After 12 months of observations, appointments and endless talking, I finally got a phone call confirming what I already knew; that my son has landed somewhere on the autistic spectrum and most likely has ADHD too.
Imagine having your stereo stuck on full bore; some days you can tolerate it, other days it quite literally drives you insane. That’s how my son feels when something fires his little spectrum trigger. Life can simply just be too loud and the only way he knows how to express it is by retreating to his own little universe, which to us, his parents, can feel impenetrable.
Non-verbal communication replaces verbal, and reasoning can be almost impossible. Actually, it can feel as frustrating as f--k for everyone involved, I'm not going to lie.
It can be soul-destroying, rage inducing, and at the worst of times it strains our marriage, pushing us to the brink of everything we thought we knew about ourselves and who we imagined ourselves to be as parents.
I dislike the ‘label' my son has been given, society can make it feel so negative; but at the same time, it has been a huge release for our family, in fact, I can now view it as his super-power, not a disability.
Finally, we can move forward with the power of knowledge behind us. We will no longer question ourselves incessantly as to we are doing wrong, or why our little man seems to come up against more obstacles than others.
It has given us freedom, and I am so grateful for the paths I have pursued to get this answer.
He is not a naughty boy. He is sweet, kind and affectionate.
He is incredibly bright, funny and witty.
He has an infectious energy and quite literally lightens up a room when he enters it.
When he is tuned in and present, he has the most tender touch.
He feels people. That’s the best way I can describe him. He FEELS you. He reacts to the energy within you. Me especially.
He swings between two parallel universes. Ours, and his own, beautiful, complex world, and the world we live in with rules, regulations and expectations. I’d love to go there one day, to his universe, but I know I might never get the privilege to visit.
During the sojourns to his world, he doesn’t mean to be so abrasive and rough. He simply can’t control his impulses like we do. They can be confronting, but he doesn’t even realise he’s lashed out until its done.
He often bites, or hits, and immediately says “sorry mum”. He enrages me, then softens me within the space of a millisecond. It’s a confusing place to live within, day in, day out.
He doesn’t mean to defy us at every single request. He simply just doesn’t understand that there are rules in life and instructions to follow. In his land, there is no reason why he can’t do as he please.
Personal space doesn’t always exist in his world, however it's this very trait that makes him so incredibly tender and affectionate when he’s part of OUR universe.
It’s truly beautiful to witness when it is in its right place. He feels with his whole soul, his heart, you can see that, as plain as day. He is going to make an exceptional father one day. A beautiful friend and an amazing partner.
He is our little prince, and whether he is in our universe or his; we love him endlessly, beyond anything you could imagine because he is so special, talented, warm and divine. Mothering my son is not how I expected motherhood to be. But then who am I to “expect”? Who am I to think I have the right to control of the life-journey of another soul?.
I believe it to be true that God gives us abundant blessings; blessings that are often in disguise. We are selfish creatures at times, so often blinded by what WE want, our dreams and ideals, that we can’t see that what we have before us is perfectly more than perfect.
Every time I have stumbled in my journey of mothering my son, or fallen into darkness, someone has landed on my doorstep, or invited me to theirs.
I have never been without angels, literally waiting in the wings for me to reach out and ask for help.
How Divine is that?
I have amazing women in my tribe who can mother him when my heart and soul are depleted. I have fathers that can father him when my husband feels the same. There are abundant arms to hug and reassure him. Wisdom to teach him. Ears to listen, and eyes to watch.
There is a whole village of love, care and understanding at our fingertips for our little man, but they couldn’t truly help me until I swallowed MY pride and admitted that I couldn’t do this alone. It took until that point, for me to surrender and completely lean on my family and friends to truly receive the support we needed ….need…. and may need for many years to come.
The path is winding. It is long, it is vast and it is wide, but it is MINE. It is OURS, and it is ours for a reason.
Who would I actually be, if I wasn’t where I was?
I would be a sad woman longing for her little boy; his uniqueness, his touch, his heart and his soul. I would be longing to be his mother, praying, daily for him to be part of my life no matter what the challenge that lay before us. I love my little man more than anything.
To be chosen to mother this little boy was the greatest honour God could have bestowed upon me, for I know that his future relies on us, his family. What an honour it is to be entrusted with this appointment to guide & nurture such a divine little soul.
Susanna xx
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