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)

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.

World Autism Awareness Day

That is all.

Go here for info.

FYBF - Light It Up Blue & Why The Hell Do I do This?

Tonight is the school disco. Today is Light It Up Blue day for Autism Awareness.  Pretty apt mix really. Wonder if the kids would complain if all the disco lighting was various shades of blue, hmmm? I'm on the glowstick stall after swearing "no more" last year. What can I say, I'm a control freak who can't stand by and watch without twitching. And I happen to like and respect the 2011 committee members too much to stand idly by and not offer to help. So instead of just lighting it up blue we'll be lighting it up green and pink and ornage and yellow too!

For FYBF this fine Friday, after the discovery of the impact the poetry of one little boy has made (even if copyright liberties were taken by others), I have renewed hope in the power of words. So I am adding a few of my own in celebration of ASD awareness.

April 1st  - Light It Up Blue Day, in preparation for
World Autism Awareness Day on Saturday April 2nd. Landmarks around the world will be a beautiful blue in support of this important message.

It is the 4th WAAD. Statistics now show 1 in 100 children are affected by ASD. If you don't know someone on the autism spectrum you are the exception.

I won't be sharing his poem today (learnt my lesson well), but rather some of my own. From a while back now, but the second is so apt as our lives are now.

Ignorance

Look not into my eyes for fear

Unknown things just not clear

Someone holds me very dear

Ignorance keeps pain so near

Look not into my heart so pure

Never tell me you want a cure

I am unique, that’s my allure

Angry people please be fewer

Look not into my tears so loud

I’m not just someone in the crowd

It could be your son being cowered

My Mum says she’s always proud

Walk Before You Run

You have to crawl before you walk,
Walk before you run
But now you need to spread your wings and fly.

I always held your hand before
Locked it tight in mine
But now you have to soar alone so high

The time is now upon us
To loosen up the ties
For all to let you show the world yourself

For I am just a mother
Who must learn to stand aside
And not wrap you up and give you so much help

So now your running strong my son
We truly are so proud
The boy you are will be such a great man

But just remember when you race my son,
And pass the blurry faces my son,
Please still reach out and gently touch my hand.

Happy FYBF. Spread the message. Please.
 
(Will be back to link up when linky up).  

One for the DADS of ASD kids...

One of the blogs I follow is a writer and dad of a son who has ASD. This is a great link for the men in the family who need the support just as much as us mums, but don't like to reach out. For you, guys: Kicking and Screaming by Brian Patrick Tracey.

World Autism Awareness Day

Need I say more?

Good Friday is also World Autism Awareness Day for 2010. Please wear something blue to show support. So very many of us either love someone, know someone or are someone affected by autism.

Boy 1: The human face of Asperger Syndrome;

an Autism Spectrum Disorder.