Thursday, November 26, 2009

Life With Autism

I wrote this story prior to my first foray into creative writing. We were required to write a piece up to 3,000 words to submit at the first class. Once I began I could not seem to stop and the words flowed from me in a cathartic outpouring. An edited version was runner-up in 2008 My Child magazine competition. I am posting it here (and it will have been read by many on another site) after reading another blog and realising how impossible it is for many to understand our world. If this opens the eyes of one other human, then it is worth it. For Boy 1, whose strength and belief in the good of all humbles me, and for Boy 2, who is the most compassionate, supportive child, even if he is a smartie pants. I love you both infinity plus 1.

I never dreamt I would grow up to be the sort of woman who cries at the drop of a hat. I always despised women who ride a huge rambling rollercoaster of emotion. Keep it to yourself - exercise a little self-control for God’s sake. Now I have joined this emotional little clique. I read an article this morning, sitting on the toilet of course – where else would I have the time alone to read, and I cried yet again. What was this inspirational topic? Another Hollywood celebrity discussing life with an autistic child. Autism is not selective. People from all walks of life are affected by it. An elite club you do not really know much about until YOU are invited to join. Even now, when a new member is revealed, I cry tears of empathy, grief and relief. I will have another congenial companion on the journey, they will understand. At the same time, my heart breaks for the path I know they will have to tread, the challenges and compromises they will have to consider on a daily basis.
It is quite ironic that emotions erupt from me when the catalyst is a disorder associated with the lack of emotions. Of course, I now know that this impression of autism is incorrect. People on the autism spectrum still have the gamut of feelings but react and reveal them in a different way to the average person. Every child on the spectrum is an individual so the disparities are endless.

How would I describe my son? He is eccentric, unique, pure, complicated and has Asperger Syndrome. He is emotionally challenging, heart warming, and eminently loveable. My prayers are that he is happy and content in his life. I dream he will marry, have kids, follow his dreams, fulfil his potential. He is angelic of face, volcanic of nature but only those who witness him in full meltdown see those masked eruptive depths. Generally, people use the hated phrase: “he doesn’t look autistic, does he?” I wish I knew what autism looks like.

For a parent, those four words: “your child has autism” is paramount to someone telling you: “sorry, you have a terminal disease.” The phrase has a terrifying fatal ring that you did not see coming. Pow, take that. It is ironic that Time magazine nominates autism as the only condition equivalent to cancer in its genetic complexity. Gut reaction: it is a joke, right. Not your child – hey – he talks and is loving! Don’t autistic kids sit in a corner barely emoting let alone being verbal? Must be a mistake, they have to be wrong!

Your whole view on life changes, not in a split second, but gradually, little by little, as the implications of this diagnosis kick in. When a child is born, it enters into a world of parent ambitions and dreams. When that child is diagnosed with a disability, it is the parents who grieve for their lost dreams and ambitions. Disbelief, grief, acceptance, survival: these are the steps. Like a reformed alcoholic following the Alcoholics Anonymous guidelines, we follow our own AA path: autism awareness.

Enter the minefield of lovely, helpful professionals. Sadly, a high number will bombard you with worse case scenarios accompanied by literature to terrify, or offer no assistance whatsoever. Expect you to mine through the fields and find the hidden gold of therapies or support available. A secret society and they must not tell unless the parent unlocks the concealed code. It is only once progressing through the system you learn to become ruthless and track down the rare professional who understands. Don’t get me wrong, we have encountered some amazing specialists along the way, but why have we needed to fight to find them?

As parents, a pervasive, encompassing loneliness engulfs you. Like two shipwreck survivors, you cling to each other, reassure each other, and sometimes loathe each other. Too down beaten even to try to communicate with external connections, friends fall like flies. The child becomes the centre of your focus – the marriage just has to coast along under its own steam. Time is in such short supply to even shower seems an unnecessary waste. The internet and its wealth of knowledge becomes a constant lure. Conversation revolves around droplets of information to be shared. No wonder so many frailer marriages implode under the pressure of a special child. Thank God, ours has not. Thank God, we both follow the same path. Thank God, we still love each other enough.

In the dead of a long, dark night I once wrote:

“What can I say to people to let it out? They say how average, normal he seems but they don’t live it. The fights, struggles, mood swings – his and mine. And the questioning of how much damage I am doing to his brother. How wrong am I getting it? The doubts, anger and frustration of living day to day. The struggle to do normal things like taking a family break. He told me today “I will kill you” and he probably will, somehow, sometime; the heart attack or stroke from the stress, the gun when he is older and angrier… the alcohol I use to feel better... or not to feel at all. So now I sit, unable to sleep; and type and cry.”

This is still my reality though not all the time. My son makes me proud in so many of his actions, methods and beliefs. These are the moments that keep me going, that hold me to the path we have chosen. So many different therapies thrown at you, to pick a direction and stick to it is fraught with uncertainty and doubt. What if it is the wrong choice? What if I am damaging his fragile psyche and another choice would have smoothed his life for him? The consequences could be tragic if we get it wrong. Think Columbine or Arizona Tech. Asperger Syndrome was one of the terms bantered around in connection with the perpetrators of these crimes. The frustration and isolation that erupt into violence, a newsflash revealing a frozen glimpse of a parent’s greatest fear. My greatest fear. How did their mothers feel? The pain and questioning. What did they do wrong? The unbearable guilt and shame, overwhelming loss and grief.

I second guess and doubt my choices already. It is easy to feel that a decent mother would be able to fix things for him. No matter how many times I am told otherwise, I often wonder if I did something to cause this. It is so much harder because I swim against conventional thought. MY child. Don’t they get it? MY child. Nobody on this earth understands him the way I do. Not even his father who acknowledges the truly unique, special link I have with my firstborn. His little brother probably understands him well, but still not that iron, heat forged, binding chain we share. Yet I am probably the toughest with him. I have never subscribed to the school of “poor me, poor him”. I have never allowed the boundaries to differ in relation to both my children. My oldest has to live in the real world, thus he has to learn to cope with the real world. Some mothers think I am harsh. Some mothers think I am obsessive. Some just think I am delusional.

Most education professionals cringe when they see me coming, or if my name is mentioned. One very senior special needs educator said: “you are an overzealous mother who is causing her child undue anxiety and stress by your attitude. He cannot learn and you will scar him with your belief otherwise”. Five of the eight people present believed he was right. I wonder if that man considered how he was scarring me with that comment. Years later his words still taunt me in the sleepless 2am worry sessions. But time has shown how incorrect they were. If only I had the energy to track them all down to flaunt his school report cards.

The tragedy is we are meant to rely upon these “special” educators, these experts. The special needs teachers, the special needs guidance counsellors, the special needs directors in the education department. Those on the front line, the teachers and aides themselves, have allied with us. Former principals have pushed boundaries for us. For this, I am so endlessly grateful. They put their hearts into helping my child, but are often bound by the ridiculous ideas and limits placed by the so-called specialists. I despise some of these authority figures. What was it Mark Twain said? “In the first place God made idiots. This was for practice. Then He made school boards.”

I try not to compare my children. I leave that to the school system. In the household where I grew up, we were treated as individuals. Comparisons were frowned upon. The phrase “why aren’t you more like your sister” was never uttered. I have always told both my children from birth they are unique, special, different. It is heartbreaking to see the way society likes to knock us all into the same monotonous shape. Especially the education department – submit or get out! Comparison is the name of the game. No wonder home schooling is the greatest growing teaching mechanism in the developed nations. I hope both my children survive the educational world with some eccentricities intact. Conform to cope, not to become the round peg. Have the confidence and self-belief to embrace their differences, but still be accepted within mainstream society.

Writing is an ordeal for my son due to his fine motor problems. In this day and age, you would think the system would get it. He will never be comfortable with penmanship, it tires him beyond belief. Most autistic children have low muscle tone, which affects both fine and gross motor skills and it is more difficult because of the pressure he places upon himself to be flawless. Did I mention that these kids are perfectionists? He often will refuse to attempt a task so overwhelming is his fear of failure. I have framed the first Mother’s Day letter he wrote me. My close friends cry when they see it on my wall. I know exactly how hard it had been for him to write this. It is equivalent to another child writing it in blood. The last line in it is “You are very special because you always save me from falling.” When questioned about this line, his reply was “you always save me Mummy, from falling sad, from falling mad, from falling over.” My son. Who believes Mummy will fix anything. I have to live with the knowledge that I will not always be able to save him from falling. I will not always be there when he falls. And so I have to give him the tools to be able to pick himself up, dust himself off, and keep moving. Physically and emotionally. Is it any wonder the pressure pulls me down at times? In my life there is a constant undertow of emotion, ready to drag me under at my first sign of tiring. But if I go down, he goes down, so I swim on.

My child has the typical autistic sensory issues: smell, touch, taste, sound, sight. Like a superhero, these are fine-tuned to hypersensitivity. Makes for fun on any day, is excruciating on bad days. You know he cannot help it, but it is the whinging that wears you. Oh God, the whinging. If you think all kids whinge, then multiply it by 100 and you have life with an autistic child. These children are the eternal pessimists of life. I think Murphy was autistic (you know – the one who wrote “what can go wrong will go wrong”).

It is probably why I joyously revel in my child’s cheekiness. To hear my son use sarcasm or throw a witty comeback makes me glow with pride. ASD children do not have usually this ability. Everything in their world is factual and literal. When his teacher says “good day, no hiccups.” he looks at her in bewilderment. “I didn’t have hiccups today or yesterday or at all last week.” Why would his teacher mention hiccups? He really does not get it. So when I hear him say, “you punch like a girl” or twist a word for a wholly different meaning I know we are slowly winning the battle. The anthem I can hear in the background right now is music to my ears. “My brother’s a pinhead, my brother’s a pinhead.” The chant of a champion. We struggle to teach him the things other kids just seem to know as they get older. I do not want him to lose whom he is, just to make the journey easier throughout life. And to do this he needs skills that others take for granted. If only I could transfer some of the younger brother’s excess to the older brother.

What do autistic children born to demure mothers do? What happens to the children diagnosed with autism whose mothers do not know how to fight? The reserved ones. Do the mothers learn to fight? Do the children become self-sufficient? Or are these the children who fall between the cracks? The system fails them, then Mum does. Future massacre perpetrators. Terrifying. Heartbreaking.

I am by nature a doer, but battle has now become a way of life. I fight my son every day. Eat breakfast. Please eat breakfast. Son, you will run out of time, eat breakfast. JUST SIT THERE AND EAT BREAKFAST! Get dressed. Please, get dressed. Just get dressed. SON GET DRESSED RIGHT NOW OR I AM TAKING YOU TO SCHOOL NAKED! No Mummy is not trying to cause you stress by yelling. Son brush your … Well, you get the idea. Sadly, the biggest campaigns have been waged against those who are meant to be our greatest support. The medical and educational specialists. The burnt out ones, I call them. They look at you as if you are an illiterate idiot, or an obsessive parent in denial. Don’t you understand? Your child has autism, it is not curable! I know the diagnosis. Disbelief and grief were dealt with and then conquered. We have to or the family will remain in an endless limbo. Acceptance and survival are far more complicated, and the impossible is discerning what his reality and potential may be. Exactly who gave these so-called masters a crystal ball? I want one! They are so positive of the outcome for MY child, so definite in their projections. There are so few who understand our plan, who bolster and cheer us on. Give us the positive reinforcement we so crave. Why can’t more of these professionals realise how much we need to hear those few words: “You have made the right choice.” It is not that hard to say!

I do NOT accept the restrictions and the doubt imposed on my child’s abilities. I know what he is capable of. I am aware that many things will not develop with maturity and age if we do not intervene now. Therefore we do. We give him the grounding he needs to become a happy, fulfilled adult. Teach him to use his own judgement to overcome the obstacles. To make the best choices, not the worst.

The internet becomes addictive once you have a child diagnosed with autism. I grasp onto little bits and pieces, ideals and ideas, beliefs and gut instinct. Weave them into our lives. Our path. Our way. Our desire to help him be whoever and whatever he chooses. OUR WAY. The World Wide Web can be your greatest resource or the most insidious tool in the universe. Who was it who said, “A little knowledge is a dangerous thing”? So true. The search for information and ideas can backfire when you stumble upon the horror stories, and the many armchair experts who prophesize doom and gloom for the autistic child. “They can’t” people, rather than “they can!”

I have a signature underneath my username. “Please don’t annoy me, I’m running out of places to hide the bodies…” The original was actually a bit stronger than this, but I adapted it to be a little more politically correct. Just to warn some people I meet on the internet highway that I am a lioness protecting her cub, the warrior queen using my wit to take down any enemies.

It is terribly amusing that I am writing all this. Baring my soul, ripping off the scab from my heart. I try not to ramble on too much about him. People’s eyes glaze when I am spilling too much. Therefore, I do not. It just seethes in the pit of my stomach until I get through it, or until I purge it all on the internet to my close coven of friends facing the same battles. Yes, we do actually call ourselves a coven or sometimes a clique. A clique where nobody ever has to fight for membership. A group of emotionally turmoiled mothers grasping hands, baring souls, trying to bandaid the wound. Now I sit, and again I cry. This time with gratitude that these special women get it. I can stop fighting and breathe. Just for a moment.


Jen said...

We have only had our sons diagnosis for a few months. I want to say THANKYOU so much for posting this! You have described my son, the mornings especially that are tearing me apart at the moment and making me feel so useless. When he is not getting ready, when I am begging then yelling, then he is yelling at me not to yell, then I am yelling that if he did it I wouldn't yell and the cycle goes on. Noone 'gets' it. Already i also have eyes glazing over, they don't want to know, "my child does that too" they say..does your child do it with such emotion, anger, resistance though? I dont think so.

This journey is so hard and we have only just started. I am searching for the strength to get through it. Perhaps I should venture back into EB and also lean on others that know. Thankyou once again for writing is wonderful. Do you mind if i link it to my blog?

Madmother said...

I would be honoured if you link it. It is so hard, isn't it? You know people mean well with the comparisons, but in reality they have no idea.

And as Mums all we want if for our kids' lives to be easier, happy and fulfilled. Not so much to ask for, is it.

Anonymous said...

A friend gave this link to me when i read your blog i felt relieve a bit that i am not alone in this battle but still i feel for all of us in this world of motherhood toward an autistic child. There were times yes i yelled and then i paused then i said to myself he is like that and no one can change that. As i read your blog i started to cry thank you for making this blog.

Melissa said...

I wish that he and Xander could meet. Xander would be lucky to have another wonderful Aspie boy, so similar.

That perfectionist nature - that fear of failure that stops you starting..I dont' know how to get around it.

BTW - Totally off topic. But I actually laughed out loud at the "I don't hate comments" banner! ;-)

Anonymous said...
This comment has been removed by a blog administrator.
Bronnie Marquardt said...

Well said. You have described our mornings perfectly, - and the joy as well. I was actually relieved when our son was diagnosed, because once the condition has a name, you can work with it - to bring out the joy and help cushion the 'falls'.

Anonymous said...

Hi MadMother, Love the blog mate. I have a 13 year old Son Dylan that is Autistic and he is a wonderful extremely helpful, quirky and amazing little person. Apart from the incessant whinging that you describe here (gladly I must say) our Dylan is and/or has been the boy you describe here.
Thanks for sharing. We are so much better people by far, and will continue learning from our sons so much more about them and the world we live in than people without a wonderful ASD child. I wouldn't have it any other way now.
I will put a link on my website now to your blogpage.
My website is
South Australia, Australia

Anonymous said...

Done! Link appears on my special Links page at :

Would love a link back to my page if you want to put me on your blog or another page (at

Andrew Barre

Valerie Foley said...

I think this is beautifully articulate, and a testament to you and your family!