World Autism Awareness Day 2013

Today, April 2nd, in fact EVERY April 2nd is World Autism Awareness Day. It is a day specifically set aside to educate, inform, share autism awareness.


The thing about having a child diagnosed with autism is beyond the grief, shock and disbelief, you get the "he/she will never" list. For this special day I thought I'd share you some of ours:

• "Shame it was not 20 years ago and you could place him in care and start afresh" Speech Therapist when he was 3. This was less of a "He will never" and more of a "He is so badly broken you may regret him..."

• "You are an overbearing, obsessive mother who cannot admit her son's shortcomings and is unduly scarring him in the process. He cannot learn." District Head for Special Needs for our area in a placement meeting when he was 6.

• "Why does my child have to put up with a special needs child in his class? It is a drain on resources we could use to push him higher." Parent to teacher, Grade 6. He was 12 and puberty had hit. Anxiety and meltdowns were occurring on a weekly basis. Weekly, not daily. AND we had funded an aide OURSELVES to help and to lessen any impact on the other children

• "No, we didn't put him in the Eduquest team because of his autism. He would not have coped." Grade 7 teacher who should have known better by then as he was achieving amazing things. As the principal of the school this competition was held at said to me a year later "You do realise he probably could have won?" ... yes, yes we do. We knew that at the time but you pick the battles you will win, and not the ones where ignorance will never be changed.

And then we come to the now. All those dark times where you wonder "Is it worth it?" "Is this making a difference?" "Are we doing right or are we putting him and us through all this stress for nothing?"... let me tell you in our case, and yes we wondered all of that many times, and other's words echoed consistently through our minds, it is a resounding "YES!"

This is what I posted on a Facebook group page earlier this week:

This is the boy who was told he could never learn, would never socialise, had an intellectual impairment, and whose sensory meltdowns were legendary and incindiary. This is the boy whose family always believed in him, treated Asperger Syndrome as differing abilities not a disability, who always set the bar higher so he could soar...

This is my now 15 year old performing a monologue in front of an audience of 60, a monologue he chose, directed, acted and blocked. This is my Super Aspie Boy:



My son. My amazing, compassionate, talented, confident just turned 15 in January son who has Asperger Syndrome.

Is it all worth it? You tell me.

World Autism Awareness Day april 2, 2013. Differing abilities, not disability.

A very, very proud and totally in AWE of her boys (cause her youngest rocks too)

ASD Awesomeness

I should have thought up a better title, I should have been writing of this earlier. Actually, no, I couldn't as today is the first of the performances and who knew where this would end?

My son, my oldest, my glorious 14 year old Aspie has one of the main roles in his youth theatre group's play.

My oldest son has seven performances in this very professional production. Today, tonight, tomorrow, tomorrow night, Monday, Tuesday and Thursday evenings.

SEVEN!

Did I mention his role really is one of the most important in the play?

He plays The Beast.

To top this off, starting Monday he has EIGHT exams - his finals for Grade 8.

Pressure? Hell yes, for any child. For one on the autism spectrum? Overwhelming for most.

But not for this boy.

I AM SO DAMN PROUD I COULD BURST!

He aced the first performance, and as we walked away when I picked him up two little girls were talking to the director and excitedly whisper "Is that The Beast? We liked him best."

I cannot wait to see him in action tonight, but even without having witnessed him in action yet I could not be on a greater high.

And he is self-assured and calm about his exams (which strangely is how he has been all year - stresses over assignments, relaxed and  confident in his intelligence and knowledge for exams... go figure) without a sign of anxiety.


This was undreamt of EVER!



 ~Refer early years posts~

A Rehash: Rose-Coloured Glasses in the ASD World.

Many, many moons back (even more moons than months due to the blue moon last night) I entered a competition on another blog. You may remember from my reference to it in this post.

Since then I have been asked by a number of people to post my actual entry on here. It was a limit of 250 words, and the requirement was to tell your story of rose-coloured glasses... do you or don't you wear them?

This was my tale:

I have a pair of rose-coloured glasses. When they said “your son has autism, he will never socialise or have friends, you need to consider the options” I put on my rose-coloured glasses and told them “Pfft, what do you know?” As he made friends and proved them wrong, my glasses turned a deeper hue of blushing pink. When the educational professionals stated, “You are an obsessive mother who cannot accept your son’s shortcomings and thus will unduly scar him” I grabbed my hot pink glasses and enrolled him in a mainstream class. I knew in my heart of hearts he did NOT have an intellectual impairment and my glasses tinted the darkness of their words into softer hues of manageable pain. When he excelled at school and grew into this unique, confident, happy young man, open and proud of being on the autism spectrum… the glasses glowed in magenta-tinted splendiferous pride. I am going to wear them right to the end of my pessimistic life. Did I not mention the pessimism bit before? Well I am a glass half-empty sort of person, but my rose-coloured glasses thrust me blushingly into an optimistic world. A world called motherhood.

I won.

And my glasses continue to shine brightly with the reflected magnificence of my incredible son.

Mine... No Mine! No - MINE!

Sometimes it feels like this journey on the autism rollercoaster is like a pissing contest. You know, whose story is the worst, or who does it right, or what therapy works, or what boxes does your child fit into?

Copyright Madmother

And I am just as guilty as the rest of them. It is hard to remember at times that everyone's experiences and more importantly, everyone's children are unique. Individual. What issues they or you face, whilst similar to ours, will not be identical. What quirks their or your child have may sound the same, but will not be.

At this time in Boy 1's and our lives we are gifted with some wonderful advantages: clarity and hindsight, but this does not give us the right to dictate to others. Our path, our strategies, our philosophy, is just that. OURS. And whilst it may have worked for our son, it does not mean it will work for anyone/everyone else's.

Experience is a wonderful thing, and it is a joy for us to be able to mentor and support other parents who follow behind, but we also need to allow them to choose what works for them. They will blaze their own trails.

I had a lovely morning with some other parents this morning, and whilst I admit, I find it hard to relate nowadays (and I am sure the reverse is same for them - they cannot see where we are from the point they are at), it was really nice to discuss our differing ideas.

I have a hell of a lot of knowledge stored in this befuddled brain, and am always very happy to share and offer advice (okay - I do talk a lot, lol) and the solutions that worked for us, but from now on I am going to add a disclaimer...

WARNING: Whilst the following produced the stated result in our son, feel free to disregard if it ain't for you.

YOUR CHILD, YOUR PATH, YOUR WAY.

The What If's... FYBF Our Story

Firstly, a disclaimer. I am not a psychologist, psychiatrist, paediatrician, doctor, speech therapist, occupational therapist or any other type of specialist. What I AM is a mother of a son on the autism spectrum, which in my opinion, makes me a little of all of the above.

My oldest son is fourteen years of age. He stands five foot eleven inches, tall, slender, and to be totally unbiased, drop dead gorgeous. He is in his first year of high school (Grade 8 here in The Queen's own land). His smile could break a million hearts, his laughter warm a million more.

My son. My beautiful son. My wonderful amazing straight A, acing school, report card written in such glowing terms you need sunglasses to read it, son.

My son who has Asperger Syndrome.

He was three when we began this journey. Three. He was five turning six when we began to formalise it. Back ten years ago there was no financial aide, little support and not much information. Early intervention was a mix of public and private chaos. We were lucky, we muddled our way onto the very path that is recommended for all littlies on the spectrum today. Speech therapy, physiotherapy, occupational therapy, psychologist, social skills group... somehow in  the confusion we got it right.

Which leads me to the point of today's post.

Intellectual impairment and autism.

My son was assessed using all the modern diagnostic tools, I could use all the lovely letters here but they may not mean much to a lot of you. Things such as CARS, WISPII, DSM IV.

But the actual results do not stick in my mind, what is frozen there was the psychologist's words.

Moderate Intellectual Impairment.

My son. My baby. My beautiful boy. I cried that day. And probably the day after too. It is all a little foggy now.

What I didn't know then is that the IQ testing part is notoriously inaccurate in results when testing CHILDREN ON THE AUTISM SPECTRUM.

What I didn't know was that these amazing kids do not test well at all, and their ability is often recorded far lower than it actually is.

What I did realise within 48 hours was whilst testing was well and good, he was still MY son, the exact same child as before diagnosis, before testing, before this specialist's words.

My son.

Whom nobody knew as well as I, his mother did. And in my heart there was no doubt that he DID NOT HAVE AN II.

Over the next few years many people, teachers, specialists, parents treated me with sympathy as they decided I was delusional or in denial. I even had one senior special needs educator (they brought in the BIG guns to deal with me) tell me I was "unduly scaring my child with my inability to recognise his shortcomings"... yeah, that one I can quote word for word nearly a decade later. 

Poor, poor woman. Silly, delusional Madmother.

The crazy woman.

The mother who knew, loved and accepted her child whilst still believing in him. The mother who fought tooth and nail for his rights, for who she KNEW in her heart, he was, for the man she knew he could be.

For the young man he is today.

I guess my point is this. For those of you on the start of this journey, believe in yourself. Trust your instincts as a parent, have the guts to stick to what YOU know your child to be no matter what the so-called experts say.

Boy 1 Grade 7 Graduation 2011

It is worth it. It is beyond worth it, it is incredible, amazing, heart-filling, bursting with pride, jaw-droppingly WOW!

A Funny Thing Happened to Me on The ASD Ride...

A woman walks into a supermarket.

Bumps into a woman who had cared for her child in a Long Day Care Centre many moons back. Woman asks, "So, how is Boy 1 doing?"

The first woman says "Excellent, doing wonderfully well at High School (this was before reports released and she learnt just HOW wonderfully well said child was doing), and has submitted a childrens' book to Penguin."

Second woman beams, and replies "I always knew he would do incredible things, he just had that aura about him."

They part, first woman walks off with husband who looks bemused and asks, "Did she?"

Woman one giggles quietly, looks around and states, "Oh, I'm sure she did. Which is why she isolated him, berated him and generally made him feel boxed in. And why I requested politely to the Director that she was removed from contact with him, or changed her tune quick smart. Shame she left so suddenly."

This was the person my little boy had nightmares about. The one the then four year old told me had "shoved me in a box Mummy, but I didn't fit. So she kept pushing me in until she could shut the lid."

How they forget. But mothers have a long memory, especially mothers who have had to fight tooth and nail for things that NEVER should have to be fought for.

Don't think I will be sending her that signed first edition. Don't think so at all.

The Highs and Lows of High School

I sometimes wonder if I am living in blissful ignorance, oblivious to the realities. Or maybe denial, not admitting to myself or anybody else the dread of what lies ahead.
I don't think I am, but our life seems so far removed from so many we have travelled on this rollercoaster with, you have to consider the fact it may be the calm before the storm.

We are awaiting his first report card for high school. The result of two terms/one semester in his new environment. A time full of change and challenges, anxiety, tears and angst.

He is still fairly socially isolated, but like the echidna that rolls itself into a prickly ball at first sign of attack, slowly but surely he is unfolding, opening, showing glimpses of his true self to others.

The anxiety has lessened, the tears have slowed, the hormones settled (a little).

Exam week was tolerable, made harder by the illness of myself and Boy 2. Pumping immune boosters and probiotics, we prayed he would fight off any lurgies until it was over. He made it by a hair's breath, going down like a ton of bricks on Saturday night, still ill three days on. Last week of school. No biggie if he misses now.
The social limits of school have been abaited by his two wonderful best mates. Last Friday he had a sleepover at his former school mate's house (to avoid the primary school disco), and even with no TV (it blew up THAT afternoon), he had fun.

The prior long weekend his oldest bestie, my honorary third son, was up for two nights. Watching those two is a balm to any worried mother's soul. Just so very, very solid. Boosted him for the week after, the exam pressures, the personal expectations he has for himself. That lack of belief in his work and ability even though he is a good student who loves learning. Okay, not confident, but okay.

Boy 2, Boy 1, C

Happy 80% of the time, what mother of a teenager, let alone one on the spectrum, could ask for more?
Am I in denial? Am I really basking in blissful ignorance?
I hope not. I do not think I am for many around are in awe of him. I pray we are not missing something vital, letting the ball drop after so many goals.

I can only sit and wait and be alert, vigilant, aware of the risks, challenges, pitfalls.

And love and support him unconditionally. The way I always have.

The Invisible Boy.

He walks, invisible. They move around him as if he is not there, because, for them, he is not.

No one acknowledges his presence, nobody stops to say "Hello" or even nod.

My. Heart. Breaks.

How can they not see the brilliance of his smile?

How is the warmth of his heart ignored?  How can they be so cruel in their dismissal? They are teenagers, that is how. Even those who have grown up with him now move aside as he passes.  Alone.

One friend, just one. It is all it takes.

Has nobody learnt that loneliness can kill?

Hello?

Hello?

Please... anybody? Somebody? Help him. Save him.

April 2nd 2012 - World Autism Awareness Day

Today is Monday the 2nd of April 2012. It is World Autism Awareness Day and part of Autism Awareness Month.

I sit here struggling to decide what post of mine to add to the link. What powerful part of our story would be the best bit to add to raise awareness of such a major part of our lives? The Road Less Travelled posts which detail our journey through to a couple of years ago? The Hope posts, which describe the incredibly powerful young man he has become today? The myriad of other posts with the massive highs, the bottomless lows, the fears, the dreams, the days of gripping on for dear life on the autism rollercoaster as it soars and dips?

Boy 1 & Boy 2 2011

So many stories, so many years. But I cannot decide, for deep in my gut there is a knot of anguish so deep it festers hidden.

And this is the story which must be told today.

My mobile phone rang as the cab crossed the bridge, heading into Melbourne. Sitting, laughing with my friend, I glanced at the screen. The school, oh fuck, it is the school. The one rare time I get away... the school. I answer, already in my heart knowing. "I'm sorry to ring, but we have a situation here," my child's teacher shakingly tells me, "He is standing in the rain threatening to kill himself."

Boy 1 & Boy 2 Sept 2011

Oh God, I knew it, I knew I shouldn't have been selfish enough to come.

Boy 1 was formally diagnosed with PDD-NOS under the umbrella of an Autism Spectrum Disorder at age 6. The paed had unofficially told us at age 4, but in the days of over a decade ago funding was not involved, age cut offs were not a concern, official paperwork was not needed until Grade 1. There was no assistance.This was the period of the meltdowns, the obsessions, all the glaring running riot signs, the restricted life, the childhood depression; oh God, THE MELTDOWNS... controlled our lives.

The Boy 1 of younger years. Now in this turmoil of a life lived another boy, Boy 2. A child of amazing beauty, strength, laughter, intelligence (well, really a lot like his brother, but without the complications of being on the spectrum). A child who, at age not quite 3 would circle his brother as he lay screaming on the floor "I want to be dead!" and gleefully join their mother in sniffing and uttering "Ooh - he's starting to smell! The worms are coming... better chuck him onto the compost before the rot really sets in" until said child screaming would giggle and twitch and forget the blackness and surface back into the light.

Boy 2 2003

This was the child, around the same period, who nappy on bum, dummy in mouth, walked up to the older bully in the playground who had just pushed his OLDER brother who was now in tears, shoved the much older, bigger him and told him in no uncertain glaring terms, "You leave my brudder alone or else!"

This is the child who was punished for refusing to leave his Grade 2 midst of major meltdown brother in the unattended forest area of the school. Yes. PUNISHED. For being a loving, loyal brother and doing THEIR FUCKING jobs for them!

Don't worry, we soon corrected it... but how do you undo being told you are naughty, and wrong when you are 6 years old and just trying desperately to help your sibling? No matter what they say later?

I watched this special on A Current Affair a few weeks back. The sister of twin boys on the spectrum spoke of her life. I cried bucketloads for her. And then, on my return from Melbourne "The Black Balloon" was on. The torrential downpour of tears increased hundredfold. The siblings, oh dear Lord, won't someone think of the siblings?



The teacher continued to babble away. He had threatened his best friend too, something along the lines of punching his head in. They needed him to be collected, but what the fuck was I going to do from Melbourne?

He had struggled as he grew older, social niceties were lost, the pressure of his life moulding him into a new, insecure, angry boy. A teacher bullying him, punishing him for not being her accepted norm, the loss of friends as they moved, and then the final straw that changed him completely, the loss of his beloved Nanna, Wise Woman.

He broke. We thought we would lose him. The school stuffed up time and time again (not the teachers, but the system and the disgustingly incompetent passive-aggressive bitch of a barbie-doll principal). Friends dumped him in droves. Little boys don't know how to deal with threats of self-harm.

And of the two that had stuck to him like glue, and supported him when he was slipping under, well, one of them had just had his head threatened to be punched in...

I hung up, looked to my friend, shook my head, and rang my husband.

"You need to pick up Boy 2. He has had a major episode, get there fast." With little explanation I knew he would leap to it. But I wasn't there. My baby needed me and I wasn't THERE.

The siblings. Autism Awareness. The brothers and sisters shunted to the side again and again and again. Not deliberately, but choices have to be made, and when you are dealing with some major emotionally and physically straining meltdowns the drawing little Johnny is trying to show you gets lost as you scream "NOT NOW DARLING!" whilst holding flailing arms and punching fists and kicking legs.

Not. Now. Darling.

My older child has Asperger Syndrome. He is doing well, really, really well. My younger child has a brother with Asperger Syndrome.

He is not doing so well.

World Autism Awareness Day 2012.

Please, add your chosen link below.

Closed Mind, Closed Heart - Open Mind, Open Heart... My Weekend Grateful.

A minute ago I read a status from a friend on facebook. Now this lady is a very devout Christian, and was making a comment about how upon meeting the local transference healer and saying "Hello", the other person's eyes rolled back in their heads. Following on was lots of happy clapper comments on demons and the spirit of Jesus and the power of God. Judgement.

I did not expect to feel as angry and disappointed in the whole thing as I did.

Closed mind, closed heart.

I was brought up by Wise Woman who was, as she termed herself, a happy clapper. A born-again Christian strong in her beliefs, devout in her devotions, true in her worship. I attended many conferences and meetings (through choice, Mum would say "I am going to this, you want to come?" and sometimes I would, sometimes I wouldn't), many lectures and church services.

Some of them were fantastic, inspiring, wonderfully full of passion... some we sat at the back and watched the obvious charlaton lay hands on people. And as they fell backwards, she and I would giggle and whisper "Damn, he's pushed ANOTHER one over!"

But never, and I mean NEVER did I feel judged for my lack of faith or choices in these places.

And this is what I find hard. My mother was a true Christian. A woman, kind of heart, open of mind. She never lectured, preached or even discussed much of her beliefs with others; and yet she was much loved by so many. I can remember her floating in to my house after one such conference, this one about the healing ministry. A group of my Uni friends were gathered in my lounge room. Mum came in, sat, chatted for a few moments then walked out. My friends all were in awe of how she glowed with some indefinable spirit, shone with joy. They asked me, where had she been to come back so very obviously uplifted? I told them. The jaws dropped - floored by the fact she never preached, lectured nor judged any of them. The term "a true Christian" was muttered under many breaths that day. I sat and smiled. That was exactly what my mother was. The local Jehovah Witnesses loved to drop by her home even though their beliefs differed. They enjoyed nothing more than listening and debating details, revelling in her articulated knowledge.  Oh, the arguments they all delighted in, sitting on a sunny day on Wise Woman's verandah. Their hearts broke a little on the day we lost her.

I guess it is no surprise that for me Christianity is about understanding there is so much more in the universe than what we know, being open to ideas, to debate, to learning. THIS is how I was brought up. Not this close-minded "Get thee behind me Satan" bullshit.

As my mother approached the end of her life, she watched on in joy the growth of her oldest grandson. Boy 1 is a very devout Christian, unlike his parents. He also believes in the power of nature. He is an open vessel, he reads runes, practises crystal healing, has an ongoing interest in transference healing, chakras and reiki. His love of God and Jesus is unshakeable, deep, strong.

One religion teacher at the primary school made the mistake of asking who knew about a particular quote from the bible... An hour later he walked out shaking his head muttering to Boy 1's aide... "That child is incredible! He knows and understands more about the Bible and God's work than I do." Grade 4.

Open mind, open heart.

This, for me, is the true definition of Christianity. A love so pure and generous that it does not close the door on the other powers in life. Being a Christian is not about judgement or preaching, it is about belief, strength and love.

I know I will offend some with this post, but to be honest I feel so strongly about this that it was not a choice, it was a compulsion.

It is how my mother brought me up, and how my son expects me to be.

Open mind, open heart.

And I thank God that he gave me two such wonderful human beings to be in my life. And for that, and so much more, I am truly grateful.

Time for a Turn Around!

Gah, I have let the emotions of the last month overrun this blog. No more!

Time for some "awwwwwwwwwh" posts.

My oldest son graduated Grade 7 last year. Yes, here in the sunny state of Oz we hold a little graduation from Primary (middle) school. It was a glorious venue, and a wonderful night.

But more than anything, my eyes shone and my heart burst with pride at my tall, relaxed, happy, articulate son.

Who would have thought that anxious little boy would grow into such a fantastic young man? Okay, okay... we did, but not many others had the vision to see past the influences of the spectrum into his mind and heart.

They even did a dance. And he had a little solo bit on the end. Nervous, hell yes... oh, him? Well, yes, dance is not his forte'. But he pulled it off well.

And now we head to High School, with all the challenges and changes that will bring. Let's hope it is as big a success as these formative years have been!

But seriously... take that you naysayers!

Knock Knock, Penny, Knock Knock... FYBF

Boy 1: 2005 - First day of school.

We are coming to the end of the final term of the final year of his Primary school years. The child that was is now the young man that is. For those of you who have followed our story you will know what an incredible difference these years have wrought.

I am bursting with pride at the person before me. This year I had asked him and encouraged him to enter one of the more popular public speaking programs in our district. I said "His was a story that should be told... maybe he could speak of what his school years had done for him? Wouldn't that be a wonderful thing for his teachers to hear?"

He refused. "Why?" I asked, thinking of myself basking in his reflected light.

I must admit I was influenced by another who had done something similar a few years back, though I knew her story had been written not by herself.

"Because they see me everyday and know what it has meant to me."

BAZINGA!

This is the child who has written an illustrated children's book, this is the boy who is happy to market and talk and educate in any public arena to help those younger on the spectrum and to assist those around them to understand and support those kids.

He knew perfectly well my request was not born of my usual educate, advocate, demonstrate philosophy, but rather of a "Ner, ner" motivation. Not to our teachers, but to others who had not believed, who had belittled and made our my life difficult.

He loves me, he loves so very deeply, and yes, he teaches me to be a better person. He is right, they see him every day and realise what an impact they have had on this once lost, little boy who has blossomed into this gorgeous, strong young man.

I see less and less of Sheldon, and more and more of my Deepak boy emerging.

Boy 1: 23/11/11.

Thank you my son, for taking me with you on this incredible journey that is your life.

When Parents Go Feral...

Look, I of all people know there are times you have to advocate for your kid or kids. But I also know there is a time you butt out and let them work things out themselves. Some people DON'T know how to or are incapable of letting it happen.

I am sitting smack bang in a situation created by an interfering parent. We send our kids to school and entrust their welfare to the teachers on a daily basis. They see our kids in a different dynamic to their mammas and pappas, and they also probably understand the class/friend energies better at times too.

My two are off to the Grade 6/7 camp. The kids were allowed to work out there own cabins, their own combinations. We were told to stay out of it (but nicely, I'm just pissed and writing abruptly), and in all honesty, I figured the teachers knew well enough which combos could spell disaster, and the kids themselves would bring it up if it arose.

All good. Then a parent goes in, carries on, changes have to be made and boom:

one spectacularly upset apple cart.

God there are some idiots in this place.

And as I said in my conversation with the teacher, I fully recognise that they are doing their best, it is just a shame someone has to make it all so hard for everyone. And like dominoes the repercussions flow down the line... With my kids smack bang in the middle of it. Which means I now have to be one of those interfering parents and delve in and advocate for them. Not happy Jan.

Weekend Grateful: Boys, LAN Parties and Friends

In case you are wondering I live in a house of geeks. Otherwise known as nerds, or maybe comparable to living in a younger household of Big Bang Theoreticists.

Last night, at our house, we had nine boys with laptops for the second monthly L.A.N. Minecraft party. It was meant to be twelve but a few had last minutes disasters which prevented them attending. So, not only did I have a T.A.R.D.I.S. and the fourth doctor in scarecrow form out front of our long driveway, but also a house full of boys madly sitting building a server world. Local Area Network party. Seriously hilarious.

Geeks I tell ya! GEEKS!

But gorgeous ones, every single one of them.

So very grateful for friends, for all of us.

Funny, I thought it would be a few more years before this...

Ah Yes, The Autism Hasn't Miraculously Vanished You Know...

I sing his praises so much you could be forgiven in thinking he was out of the spectrum, but of course he is not. He is doing well, so very well BUT it is incredibly frustrating when the fact he has Asperger Syndrome, will ALWAYS have Asperger Syndrome (AS), seems to be forgotten. Or ignored.

Big Boy & Boy 1 - Byron Bay
Copyright Madmother

The pressure at the moment is immense. We are coming up to the last week of third term and the work is snowballing. Why they do this is beyond me. Even Boy 2, who does the same work as Boy 1 though is in the grade below, Grade 6 (in a composite 6/7), is finding it terribly stressful. Tears of frustration are becoming the norm in this house.

Last weekend we had meltdowns, trigger tempers, tears. This week has been much the same. And it could have been avoided with a little forethought.

Boy 1 had a week off, the week before last. The whole family went down with some nasty virus, but he was hit the hardest. The school knew, because it was from school I picked him up on the Monday, green as the grass.  So he missed a week.

On his return the following week this is what he was hit with:

• Poster for his marketing/technology poster due on the Wednesday, he found out Monday afternoon. Given extension to Friday.
• Rough draft of debate due Friday - AND they put him in as THIRD speaker for the negative! WTF? Who in there right mind would do this to a child on the spectrum? Debating is hard enough, but THIRD SPEAKER? First speaker, maybe he would cope, but never in the think on your feet last rebuttal final speaker position...
• Science experiment parachute construction due Wednesday.
• Thursday off school at college orientation day.
• Assessments and class withdrawal by education department OT and also another session of assessment by physio.
• LOTE test on Friday sprung on him as he missed it the previous Friday.

Yes, I picked up a boy in tears on Friday afternoon having missed first break and part of second (thus not eating as much as he usually does - which is a part of his routine which keeps him settled).


Boy 1 Sept 2011
Copyright Madmother

 I just cannot comprehend how a school could not see this was setting him up to FAIL. There is no way possible for us to have managed or prevented such, and to be honest I really felt like letting them reap what they have sown for I feel they forget he is still a young man on the spectrum. Yes, he is amazing and doing so very well this year - so what? You want to bring him back down? You want to pull all the struggles back into the light?

And they wonder why I get frustrated with the system. The bloody system doesn't work!

Note: Big Boy and I went in first thing Monday morning. Big Boy was very proud of me for no teacher was harmed in the making of this post. Yes, I kept my cool. On the outside.

Weekend Grateful: Hope.

I follow a lot of blogs of Mum's with kids on the spectrum. I AM the mother of a kid on the spectrum. Autism has kicked my arse and the legs out from under me more times than I can bear to remember. Search this blog for ASD, the posts are endless.

Ten years we have been on this ride. A decade. My first born is now 13, quickly approaching 14. Puberty is running rampant, hormones are in overdrive, Year 7 school pressure is mounting fast.

Should be a horror story in the making, eh?

I am here to tell you otherwise. I am here to offer other mums something I struggled with during the bad days, the early hard days. I am here to give you hope.

If you had met my son when he was little, you probably would have reacted the way so many did. Pity. Pity for me, pity for us as a family, pity for the lack of quality of life you assumed this low functioning, severely affected little boy would have.

Yes, he was that badly affected.

Big Boy & Boy 1 2008

No matter that I adored him and believed deep within my very core that his strengths would win out, you, as an outsider, would have thought I was deluding myself. Hell, there were a lot of days I thought I was deluding myself.

But some stubborn, gritty, intense thing deep inside me would not accept the dire predictions of the professionals, of friends, of random acquaintances. Something called a mother's gut instinct. I fought against the world like a lioness in full attack, WE fought against convention, traditional ideals in the autism world, the specialists. Me, Big Boy, Wise Woman, even Boy 2. Our family core, our battalion.

He is thirteen. When you meet him you sense he is different (oh God, don't get him started on string theory...pleeease). He will never be your typical bloke. No, he is far too extraordinary. I could go on and on. But all I can tell you is the fight is worth it. And fight you must, for this is their very future we are talking about.



Boy 1 & C - August 2011
Best mates for over a decade

 This boy was with seven other boys at Adventure Parc for his little brother's birthday last weekend. Climbing rope bridges, swinging from pulley contraptions, launching over huge drops on a flying fox. He and his bestie only completed two of the four runs. Why? Because his mate has an issue with flying foxes and a fear of heights. I met them both walking out of the bush, only to be surprised at the role reversal. For once it was Boy 1 supporting, encouraging, just being there for his friend. And happy to do so.

My young man. No longer a boy. Well on the way to becoming the incredible adult all around him can now see. Yes, even the naysayers have had to succumb to a mother's vision. To acknowledge this amazing teen. Most want to bottle him, or at least swap their surly ones for him. I, of course, refuse.

I am so grateful to be able to post this, to share with others a positive outcome (so far). To offer hope. Believe in your gut, fight with your heart. The impossible is possible.

Thanks Maxabella, for giving me the opportunity to give back.