Wednesday, March 24, 2010

Life With Autism - A Mother's Perspective

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 emotions erupt from me when the catalyst is a disorder associated with the lack of emotions. I now know that this impression of autism is incorrect. People on the autism spectrum still have the same 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 despised phrase: “he doesn’t look autistic, does he?” How, exactly, are they meant to look?

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. Initial reaction: it is a joke, right? Not your child, 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 hopes and aspirations. It hits you in stages. Disbelief, grief, acceptance, survival.  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 else offer no assistance whatsoever. Expect you to mine through the fields and find the hidden cachet of therapies and support. A secret society who will 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, still retains some compassion in with the professional detachment. Don’t get me wrong, we have encountered some wonderful specialists along the way, but why have we needed to fight to find them? We are exhausted by dealing with our children and their issues, and then are expected to have time and energy to intensely research or discover the many alternatives?

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 special moment keep me going, hold me on 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. 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 mingling with the 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.

Many 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”. Most 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. Those on the front line, the teachers and aides themselves, have allied with us. Former principals 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”  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 school system – submit or leave. 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 made more difficult because of the pressure he places upon himself to be flawless. Did I mention that these kids are perfectionists? He prefers to refuse to attempt a task so overwhelming is his fear of failure. This is why I have framed the first Mother’s Day letter he wrote me at six years of age. My close friends cry when they read it on my wall. They know exactly how hard it had been for him to write this, 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 who he is, just 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 his younger brother’s excess to the older.

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. Tragic.

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 conquered. We had 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. He has already far surpassed what these people predicted for him in the early years.

The internet becomes addictive when 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 onto the horror stories from armchair experts who prophesize doom and gloom for the child.

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. 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.

otherwise known as Tanya is an Aussie blogaholic. She has four blogs of her own, but can be mainly found randomly rambling at Meaninless Meandering from a Madmother. A mother of two boys, her oldest son, now 12, has Asperger Syndrome. She really has a yearning to write, and one day she hopes it may be more than just Madmother mouthing off.


  1. This is one of the most honest, compelling, heartbreaking posts I've read about Asperger's.

    You're doing it right; loving him and fighting for many parents trust the "professionals" rather than themselves, despite what their gut and hearts tell them.

    You're in my thoughts and thank you for sharing this.

  2. Thank you. This was written in 2007, I had started a writing course (the first thing I had undertaken for myself in many years), had not ever witten before, but it was a prerequisite of the course to write around 3000 words. Once I started it all poured out. It is jerky, unpolished, factual, raw. And I would not change any of the intent ever. It is what we lived, and still do to some extent.

  3. My eldest son (now 24) has Aspergers and what you wrote resonated so strongly for me. He wasn't diagnosed till he was 19. Imagine how enjoyable our growing up years were with no support system. On the plus side, I think I was just determined that we would get through this. That he would learn how to eat more than his 5 favorite foods. That he would learn how to have some level of social skill small talk. We wound up homeschooling him from grade 6 on because his greatest strength is his intellect and the school couldn't accommodate his intelligence with his very profoundly weak social skills. Their answer was to place him in a "behaviors" class where he had role models of children acting far worse than he did. I didn't even consider adding children to our family (which is all built through adoption) till he was a late teen as he so needed all my emotional energies and every day was filled with so many challenges that I knew I had nothing left for any other child. Things sort of evened out as he became a late teen and we now have 3 other children as well

  4. At first I looked at this post and thought it was too long for me to sit here and read it right now. But of course my eyes scanned the first paragraph and I was hooked. My son has PDD-NOS and other than that designation so much of what you said could have come straight from me. He is about to be 9 and in 3rd grade. We have so many behavior struggles and he's fixating on some behaviors of another student and picking on her about it. Never in my life did I think my son would be the bully and not the one picked on. But no matter how hard we try or what we do or what his teachers tell him, we can not extinguish this behavior. It is exhausting. Like you, I feel like I should be able to help him through this by my own sheer will. That because I'm working so hard this should change. But then I worry that I'm too hard on him. Or I worry about how having him for a brother is effecting his younger brother and sister. This list goes on and on and on -- thank you for saying all of that for me and being so honest and open.

    Good luck on this path.

  5. I have a 12 yr old daughter unofficially diagnosed with Asperger's Syndrome, a 9 year old son with severe Autism and a not yet diagnosed 7 year old daughter. Our lives are very similar to yours and yes, I cry often, too. I often have very proud moments regarding my son and his new skills. Hey, he just started eating oranges. What a thrill this is for us! At the park yesterday he went up to everybody he saw, asked them their names and if they wanted to ride on the blue seal. I was so proud of him but also afraid he would bowl over a little kid due to his excitement. My Aspie kid actually likes school but has developed quite a rude attitude which I am unsure if it is due to her age or her disability. My little one just has glimpses of Autism which scare me terribly. She has not been given all the shots so maybe she won't be a severe. My son was in a vaccine trial when he was very little so of course I feel that this is my fault to some degree. Sorry to go on. It is nice to know that I am not alone. Thank you, thank you, thank you.

  6. Oh anonymous, it is comments like yours that make me share. It is hard and we often feel so alone, I just want people to know what we live, feel, love...

    You are welcome friend.

  7. Hi,
    I am a mother of two, one is a 6 yr old just diagnosed with ADHD and PPD-NOS.
    Here is the answer to your question about "what happens to children with autism born to reserved mothers, those who do not know how to fight?"
    I am one of those mommies. I have learned to be brave and fight and keep trying, for his and my sake. The first five years were so rough, with family and daycares mistreating him and me, and usually pointing the blame towards me.
    I have had some of my closest relationships demolished because of our struggles. I have failed hundreds of times, maybe also failed my son, but I have grown very strong inside.
    I don't rely on others for support now, rather rely on my inner strength to get through each day, and on God. I think other mothers like me who don't grow stronger just wilt and give up, and their children suffer because of it.
    So there is hope for us demure or "polite" moms. Thank God I also have a sense of humor. I really like your blog. Hang in there, and keep positive.

  8. Hello, I am a 16 year old girl whose sister hs autism and I would just like to tell you that you remind me of my mother. A very strong, very determined woman. I am filled with bitter-sweet thoughts when reading posts like yours on the internet, joyed to see that others are coping with the struggle, but sad to see that you have to. I sincerly hope that things work out for both your sons, and even thought there is no cure, a mother like you is a great head start. Thank you for being who you are and having the passion to share your story with the world, just like I hope to someady, but froma different perspective. Keep fighting, keep loving.

  9. Thsnk you. I will whilst ever there is a breath in my body.

  10. Hello. My son is four years old, has known the alphabet, shapes, colors and has been able to recognize numbers since he was 2 1/2. He's been to about 7 therapists, specialists, neurologists, etc since he started regressing at 14 months (coincidentaly with his shots). Every day is adventure with this loving, beautiful boy who is not potty trained but giggles when tickled, can maneuver a computer and it's contents like a kid in 12th grade but cannot say "mommy". In fact, he says about two words total. My hat tips off too, my heart breaks for and I cheer silently and aloud for all the brave family members of children who are special. This blog has helped me tremendously today and I thank you for sharing your life experience through words.

  11. I am the mother of twin 6 year-old boys, on afflicted with autism, the other with ADHD. I was crying in my bedroom after another screaming episode with my son (he was screaming, I was growing increasingly aggravated). I simply typed the words, "autism sucks" because my brain was flooded with this thought. I was amazed and delighted, depressed and saddened to find this web site that actually exsisted. Autism is so isolating, not only for the child, but for the family. Although only one of us has the diagnosis, our whole family has Autism. It has become who we are. I was saddened to read of your struggles, but I am selfishly comforted to find out that I am not alone. God bless you, and thank-you.

  12. My son has PDD-NOS. He is 17 years old. He was diagnosed last fall. He also has mental health issues. He has been physically abusive to my husband and I. He reported us to child welfare services (and thank goodness we got an understanding worker who listened to us and did a thorough investigation that proved that our son was using them to manipulate us. That could have been the end of our family right then and there if the children had been unjustly removed). We had to make a safety plan to protect our daughter from him. My son has been in a psych hospital 3 times because of his violent behavior. He is also funny, artistic, resourceful, and has the capacity for good. I cannot begin to express the cost to our family of raising this child--to our health, our sanity, our financial stability, our other child. I guess I don't have to explain it you---you already know it.


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