This is the second chapter of my new E-book on Aspergers coming out before Christmas and selling for less than $5. If you want to pre order it or know when it goes up on Amazon then email me firstname.lastname@example.org
The light at the end of the tunnel
It was less than a week after the brown texta incident when serendipity stepped in and changed the course of our lives forever. In that short time we “survived”, or perhaps endured is a better word, the lumpy sock syndrome resolved by cutting the corners off all his pairs of socks, the scratchy shorts incident which was not resolved but ended in another afternoon sleep underneath the bed, the itchy sheets (no sleep till midnight), the utter devastation of realizing he had grown out of his favorite pair of shoes (that one resulted in five hours of crying and insisting on going bare foot for two whole days including at school which then resulted in him being sent home until he could wear shoes again), the “I no longer like long shorts” discovery resulting in finding all the legs of his shorts cut off and spread out over his bedroom floor, the all apples are poisoned apples (find a solution for that one!), the my room smells funny so I can’t go in there anymore phase, the I only eat food if it looks like a face statement, another brown texta except this time it was red and god knows how many more dilemmas we either overcame or that overcame us. Just a normal week really. Nothing special. Sigh.
And then something wonderful happened. After years of hounding doctors, specialists, counselors, therapists, psychiatrists, social workers, occupational therapists, hypnotherapists, massage therapists, psychics, osteopaths and probably even sociopaths (hey when you are desperate you are desperate) I stumbled upon the information that would transform my son’s life.
It had been a tough morning, just like any other really. We’d had two rounds of tears before breakfast, an outburst of “I wish I was dead”, a begging to please not send him to school, an I want eggs for breakfast for the tenth day in a row, an I want eggs for breakfast even though we have none, an I still want eggs for breakfast even though I know I can’t, an I want to wear tap shoes to school even though I’ve been told I can’t and the eventual insistence of going to school with two different shoes on and allowing it despite knowing he would get teased and therefore start another world crumbling catastrophic meltdown that would also result in him probably being sent home again.
It had taken me fifteen minutes (after the bell) to talk him into actually entering the classroom and with the hardened eyes of his teacher, who was new and had only had him for three weeks ( and was already over him being in her class for the rest of the year) boring into me as I left him on his own pressing himself into a corner on the opposite side of the classroom, the other kids sitting on the mat waiting to get on with their lesson while the teacher attempted to talk my son into joining the group (something I knew he could and would only do in his own time).
I quickly made my escape and judging by the morning we had had, calculated that I had about an hour or two before I was called back to the school to take him home or talk him out from under a table or down from a tree. A refreshing cup of tea and a quick flick through the gossip mags was all I craved. Just reading about other peoples glamorous lifestyles with the photographs of their beautiful children in pretty white dresses and red ribboned hair was like a magic carpet whisking me, albeit very briefly, but very gratefully far away to a place I somehow intuitively knew I could never visit not even in my dreams.
I was sharing a house with my best friend of fifteen years and she yelled at me from the shower telling me to check out a page she had marked in one of my favorite mags she’d left on the kitchen table. I sat down unaware that five and a half years of wanting to bash my head against a brick wall was about to come to a head.
In the article there was a young boy about ten years of age who had been continuously suspended from numerous schools, starting back in pre school just like Kai, his poor mother struggling to help her son adjust and make friends, unable to control his unusual and tyrannical outbursts, never understanding his hyper sensitivity, unable to satisfy his need of perfection and routine, embarrassed by his inability to read social situations, not knowing what to do to make her son happy and desperate to find out what she was doing that was making her son behave this way, believing that it was her fault and something she was responsible for.
Then after years of torment for both of them he had finally been diagnosed with something called Aspergers Syndrome – a mild form of autism, something they also called Autism Spectrum Disorder. On the side of the page was a helpful list of attributes which lend themselves to this particular disorder. And as my tea went cold and my eyes made their way down the list I ticked and ticked and ticked and kept ticking almost every single box. The hairs on the back of my neck rose again, but this time for all the right reasons and I read and reread the article again and again, this time with fresh eyes and a quiet excitement (with just a small dose of fear) that this was what my son, Kai had. This was the demon we had been chasing since he was old enough to sit up. And as I reread the list for the tenth time a movie like scene flashed through my mind recalling all the brown texta moments we had “survived” and just how many of them fit on this life changing list:
He hated change.
He was hypersensitive to smell, sound and light
He flapped his hands
He didn’t like to be held.
He over reacted to touch (a gentle hold felt like his arm was being crushed).
He craved order.
No eye contact
Little social interaction
Zero empathy for others
Clumsy or unco-ordinated movements (couldn’t catch a ball or hold a pencil properly)
Be preoccupied with their own field of interest
Have major meltdowns over the smallest things.
He babbled constantly.
He was obsessive.
He didn’t play normal games or even play with toys – other than those he obsessed about.
He banged his head against the wall.
He kicked himself in the head repeatedly.
The list went on and on and I knew I did not need a doctor to diagnose my son. There was not a box I didn’t tick. For the first time ever I thought that if he had this Aspergers Syndrome, whatever that was, then maybe things wouldn’t be so bad after all and maybe, just maybe there was not only a diagnosis but a cure too.
And maybe that meant that I might not be a bad parent after all. He might not be the devil child everyone thought he was. There might at last be a way out of this for us. We would not be enemies forever.
At last there was a glimmer of hope. I tore the page from the magazine, raced to my doctors and was told I had to wait up to six months to get into the specialist who may or may not be able to diagnose my child.
Fast forward seven years
Yes I can now say without doubt I am the mother of a child with Aspergers Syndrome – otherwise known as autism spectrum disorder. My beautiful but constantly challenged son’s name is Kai. Despite the last few years being harder than I ever imagined motherhood would be and even though sometimes I have to overcome the most debilitating obstacles to be the best I can be for him as I attempt (and often times fail) to teach him how to live a normal and happy life and regardless of all the hard work, blood, sweat and tears – I WOULD NOT swap it or even change it for the world.
I love my son exactly as he is. He is perfect in his imperfections and God has made him this way for a reason and now, after ten years of it I am finally in a place where not only can I see that, but am thankful for it too. I am a writer and have always been one. Writing about this is my destiny. This is what I am meant to do to teach others in similar situations that all is NOT lost and these children CAN live happy, fulfilling, meaningful and purposeful lives – it jus takes little bit of extra leg work but let me tell you the pay off is great!
There is one thing I have come to know of late and that is the toughest roads hold the most meaningful memories, the hardest paths the most memorable lessons and we are never ever served up more than we can handle. I believe that. No matter how bad it is, nor how terrifying it seems, you are truly only ever given as much as you can handle and we are ALWAYS stronger than we think we are.
Now, when I see dark times ahead, I smile (whilst screaming) because even though I may not know my ultimate destiny or the even the path I will be traveling but I do know and accept that I am being presented with an opportunity to succeed and for that I am grateful.
But it wasn’t always like that. There have been nights when I have crawled up into a tiny ball and wished myself dead, days where I dropped my kid at school, went home to bed and cried all day till three o clock, got up, wiped the tears from my face, put on a pair of sunglasses and picked him up from school – day in, day out, just sleeping and crying, sometimes up to five days in a row.
Some days have been horrifyingly slow. Others have gone by way too fast, but every day has been precious. And now, when I meet other people who are either diagnosed with or have a loved one with autism, particularly Aspergers, I want to spend time with them and make sure that they are doing okay because even though it’s a hard, long and lonely road it can also be a wonderfully enlightening and entertaining journey as long as you have the knowledge to make the most of your particular situation. And the one thing I know without a doubt is Aspergers is not a disorder it is a gift, a super power, something that will one day set YOUR kid apart from the rest in the very best of ways. There are people who have made amazing changes to this world who are believed to have or who have actually been diagnosed with Aspergers and it is their very ability to see the world differently that enables them to be pioneers like Steve Jobs – people the world will never forget.