Monday, April 2, 2012

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.


Easy Peasy Kids said...

Gorgeous I will share this now for you Nx

kelley @ magnetoboldtoo said...

Love you girl. So very very much.

I know I don't comment much but you are in my heart. Even more so now we have hugged.


Madmother said...

Thank you ladies, all hugs and support gratefully received, believe me.


Lisa @lybliss said...

Oh, That hurt my heart to read, but as we said at breakfast, these a crap choices, with crap options and no easy solution. Hope child 2 is doing better today, and you can hear your own thoughts above the thumping of your heart xxx

E. said...

Wow, just wow. I'm in tears.

You know where I am if you want a chat, okay?

Twitchy said...

I was blown away by how many other magnificent mums I met at #dpcon12 in a similar boat. Not all of us share these experiences on our blogs (I don't), but because of the way we live, we strongly need to blog for ourselves. Our voices yearn for a place, especially at times when there feels like very little space left over for them to be heard. It's also wonderful to know we're not alone.

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

Geez. We've had nothing quite like this. How does a heart find strength after such a battering? I was unprepared for how many brilliant Mums I met at #dpcon12 in a similar boat.

I wish you a smoother road, and hope that in the absence of any solutions, that it helps to know you are not alone.

jaak said...

Oh MM :(. I'm here to listen. You and your beautiful boys are in my heart, you've saved me a dozen times, please don't he storage to reach out. Love you all, give your beautiful boy2 a very big hug from us, as it wasn't just boy1 who made an impression the day we met xo

Leanne said...

Hi MM. After sharing that car with you I can't believe how bloody well restrained you were (considering). I have posted you on on my personal Facebook page and on my Achieve Beyond Facebook page. I feel this post and acknowledging World Autism Awareness Day needs to go farther than the blogosphere ...

Madmother said...

Hey DFF,
You did but I have post approval on, lol. Deleted spare.

Renee | About a Bugg said...

Beautiful post lovely. Thank you so much for sharing and give Boy 2 a huge hug xxx

The Bumpiest Path - Jules said...

Tears for you, for your son and especially for your younger son, sibling of Autism. Siblings are overlooked, I saw the Current Affair show and my 15yr old daughter left the room in tears. No one stops to think of the siblings, they are expected to stay strong and be grateful.
Thank you for being strong to write this post, with sharing will come change… eventually.
I'm glad you came to Melbourne.

Kylie said...

That sounds absolutely terrifying :(

Your and your beautiful sons are in my thoughts


tracey said...

I tip my hat to you! I just brought up the issue of Sibling Support at our Autism specific day care - I want them to have a few sessions about it. I absolutely have to work on it - aswell as a whole tonne of stuff that comes along with Autism..

MaidInAustralia said...

Oh, how you made me cry. I get it, I do. What a rocky road it is... but how lovely ALL our kids are. And I loved your blue hair.
Sorry I missed the linky, but I am posting this week and will share your post. You inspired me to put blue in my own hair!