I have finally decided to share my story of my son’s Aspergers. I am currently working on a small E-book which will be out before Christmas…it will have my own personal story, from knowing something was “wrong”, to getting a diagnosis, living with and loving all that Aspergers is – good and bad. It will be filled with hints and tips of how I have managed it and how I have integrated my son into mainstream school where he is currently thriving and getting A’s and B’s in all his subjects. He has friends, we have overcome bullying and most people he meets don’t even know about his diagnosis.
This is a small excerpt. The book will sell for less than $5 and if interested in a discounted early release copy then email me at PreOrderLovingAspergers@gmail.com and I will let you know the second it is available (aiming for Mid December)
Here is an excerpt:
Australian term for marker
Marker or marking pen, a pen which has its own ink and usually a tip made of porous material such as felt or nylon.
My son is sitting on the floor of his bedroom happily coloring in a picture of a horse. All is well and I welcome a quiet respite in a hot cup of tea and five minutes silence. I’m not quite half way through the cup when I hear an audible sigh and like Pavlov’s dog the hairs on the back of my neck raise ever so slightly knowing that this is the sound of something big about to take place. And when I say big I mean big and bad. My son is about to have a major meltdown. I should know. They happen almost every day.
Then I hear the already stressed out cry for help through sobs and heaving breaths. “Muuuuuuuummmmmyyyeeeeeeeeee. Muuummmyyyyyeeeeee!”
I take a deep breath and prepare myself for the worst because more often than not that is what it is. I go in to battle, channeling the Super nanny and determined to have a peaceful resolution just this once. I can do this, I tell myself. It’s just parenting. “What’s wrong bubby?” I try to remind myself he is not the enemy.
“My texta. It’s running out.” Tears are already coursing down his cheeks, his face red and splotchy before I’ve even had a chance to fix things. “Look it’s ruined.” He holds his picture up to me pleading with me to understand his dilemma. The use of the word “ruined” in such a dramatic fashion and from someone so young brings a momentary smile to my face then I remember where I am and what is about to happen and the smile is gone. Long gone. I look at his picture. I can’t see what he sees.
I see a horse half colored in, in brown texta. It looks like the texta he was using has run out and for a moment I breathe a sigh of relief. I can fix this! This won’t end the way I thought it would. I go to the art box, rummage around and come out proudly brandishing two brand new brown textas loaded with ink so he can finish his horse. Yay!
He shakes his head turning the tears up a notch, his look searching my eyes for understanding. “Noo-oooo-oooo-oooo-oo.” He breathlessly hiccups his reply. “No-ooo-oooo. Noooooooooooo mummmmmmmyyyy noooooo.”
I try to remain positive. Think calm blue sky. “Yes, have a look. They are new and have lots of color left in them” I get down on the floor to show him it will work. Calm blue sky, calm blue sky, I repeat as a mantra hoping some higher power will help me get through what is about to happen. I reach for the picture, take the lid off the texta and start coloring in the leg of the unfinished horse.
He screams in pure anguish, desperate to have me understand his plight. Arches his back and wails like a woman who has just lost her child, “It’s not the same, mummy, loooook. Loooook” he looks me deep in the eyes yearning for me to understand him. He stares at the paper then looks at me with the eyes of someone drowning in a sea of despair holding their arm out to be saved seconds before going under the water for the final time.
I want to make it right for him. I’m his mother. I need to make it right for him. That’s my job!
“It’s different mummy. It’s not the same!” He repeats a little louder as if I am speaking a different language and volume might help me understand.
I look at the texta and he is right. The one he is holding is all brown. The ones I am holding have white lids. They are the same but different. In my world they are the same. In his world they are ALL wrong. Calm blue sky. Calm blue sky. “Bubby, have a look. It might look different on the outside but it’s still brown bubby. Look I’ll show you.” I reach for the coloring book again and take off where he left behind.
He screams again, throwing his head back, his body almost convulsing. “Noooooooo”
I look at the picture and cannot for the life of me see what is so wrong.
I try more coloring in the hope he will see that brown is brown.
“Bubby, look it’s working. See its better.” He manages to calm down enough to look at the horse only to shriek in outrage an octave higher.
“NOOO Mummy, it’s not the same, it’s not the same.” I see his point in that the brown is not the exact same brown as the one he had started with but it’s bloody close. And since when was a horse in real life one perfect color? The reasoning races through my brain but I know I might as well speak Chinese as try to reason with my child. He reaches down and tears the page from the book. “It’s not the same color mummy. It’s ruineddddddd.” He is not angry but truly, deeply devastated. I stand by and watch him fall apart not knowing what to do.
He reaches down and grabs his foot and in some kind of yogic like maneuver brings it all the way up to his face and starts kicking his own head with it. Over and over again all the while screaming and sobbing in despair.
He bashes his head repeatedly upon the floor and I wonder if he can give himself concussion. He is doubled up in what appears to be pain and yet I know it is only inside his head or his heart but isn’t that just as bad as a cut that heals?
It’s at this point that I run out of ideas. I try to comfort him but he pushes me away and reacts to my touch like I’ve thrown acid on his skin. “Noooooooooo” he shrieks again and this time starts kicking the walls so hard I can’t imagine him not injuring himself.
“Come on baby, calm down, it’s okay, it’s okay,” I try to soothe but he is somewhere I can’t reach him and to make matters worse he crawls under the bed and into a dark corner almost as if he needs to mimic how he feels emotionally. I try to crawl under the bed to be with him but he kicks at my face. I can see in his eyes he does not want to hurt me but he is hurting so much he does not know how to stop it. Problem is neither do I. It is just him and his grief caught in a place I don’t know how to get to – physically or emotionally.
And so I sit on the floor beside his bed and wait for him to tire himself out. I stare out the window and watch the trains pull in and out of the station directly across the road from my house and wonder how many times this week I have contemplated throwing myself in front of them. I even know which ones go straight through without stopping because they would be the ones to do the job. In fact, there’s been a few times (okay more than a few) that I have stood on the edge of the platform and watched the 4.48pm no stops express train from the city to Strathfield blast past whipping my hair against my face wishing I had the courage to throw myself underneath it.
Just one step.
Sometimes I imagine it would just be me, other times I imagine it is both of us. After all, if I can’t help my son then who can? Surely we would both be better off dead.
The whistle blow from the conductor acts like a bungee cord flinging me back into the room and the reality I have to find some sanity in.
Even though it is only four in the afternoon, we are both spent and we fall asleep on the floor and a few hours later I wake up with the sun having set. The good news is he has now crawled closer and has his head in my lap. I do not want to move for fear of waking him up and having him remember what caused us to be on the floor in the dark in the first place and so I use my foot to push the coloring book under the rug and out of sight and gently and ever so slowly pull the blanket down off his bed covering and now comforting the two of us, then reach for his pillow and settle in for the night. And surprisingly in the silence and regulated breathing of the only family I have, my only child, I find comfort on the floor.
I lie there for hours staring at his beautiful little face, so cute, so innocent, so tired and mine – all mine. I love him with all my heart and soul and I just want to make him happy.
But I am a failure.
I think of all the reasons I am a bad parent and a bad person and somewhere in the wee hours between my hating and blaming myself and me hating the members of my family who have disowned and abandoned me and left me to fend for myself having no bloody idea how to fix this shit (excuse the French!), I finally and gratefully fall asleep.
They say the terrible twos are tough and they are. The only problem is my son is nearly six and this has been happening almost every single day of his life sometimes multiples times a day. I am so so tired I no longer even know what to do.
I am exhausted, embarrassed, disappointed. I blame myself, I am at breaking point (huh been there and beyond a dozen times or more) and I believe categorically that I must be a bad parent – the absolute worst. Because really, what other explanation could there be? And in some strange way it gives me hope. If I can blame my upbringing and the lack of healthy guidance I received then it offers me a glimmer of hope because surely if it’s as simple as that then I can learn how to fix it. I can learn how to be a better parent and then everything will be okay. But deep down inside a little voice tells me it’s just not that simple. And so desperately seeking solace I lie back down on the floor and slip into the only place I feel safe – sleep.
to be continued……………………….and believe me, there iS light at the end of the tunnel!
See next post for the second excerpt.