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)

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.

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.

"What ARE You Doing" Autism Awareness Film

This is an e-mail I received today:

Autism Awareness Australia is proud to announce a special premiere screening of our short documentary film, “What are you doing?”, at Parliament House in Canberra on Tuesday 28th February 2012.
The evening will be hosted by television personality and narrator of the film Tom Gleisner, and is sponsored by the Parliamentary Secretary for Disabilities and Carers, Senator the Hon. Jan McLucas.



We have invited all of Australia’s sitting MP’s and Senators to the screening in the Parliament House Theatrette - this is where we need your help!

All of Australia’s Federal Politicians will be in Canberra that evening and we want to encourage as many of them to attend as possible. We are asking the autism community, families and supporters across the nation to contact their own local member and urge them to come along to this important and educational film.
So it is time to ‘get your members out!’ for an opportunity to educate them more about autism and how if affects families across Australia.
Here's how you can help!
Contact your local member and Senator. You can find their contact details below

Find your local member

Find your Senator

Send them an email, call, fax or write a letter requesting they attend our special premiere. Share your personal experiences with them and urge them to take the time to learn more about ASD and the impact it has on our nation.
Let us know the action you've taken and the response you receive!
Help Autism Awareness Australia and ‘get your members out!’ to our special film premiere at Parliament House, Canberra. Check out our Facebook page for the latest updates and RSVP's!
Thanks for your support!
The Team at Autism Awareness Australia

Please, take, share, contact YOUR politicians.

Here is my plea to the representatives of our electorate... (And yes, I have linked to you, I just hope you take the time to read a little).

I have a son. A glorious, tall, handsome, strapping son. A son about to turn fourteen. My oldest son (the first of two). If you met him you would be impressed by his warmth, knowledge, friendliness and his quirky intelligence. If you met him it would not take long to realise he is a little different. My son has Autism Spectrum Disorder, in his case, Asperger Syndrome (AS).
If you are interested, THIS will tell you more, though it is a little long. It was written in the dark depths, when things were so hard, and the future uncertain.

Boy 1 2003

The young man of today is very different to the child of yesterday, he reads Deepak Chopra, dreams of being a motivational speaker, mentors younger children on the spectrum. He has written a children's book for those with Asperger Syndrome because (in his words in a letter to a publisher):

I want the reader to feel how I feel about Asperger Syndrome, that it is just a new kind of normal and people with it are just as important as everyone else. Difference is a good thing in my perspective.

Boy 1 December 2011

He likes himself, is confident in his own skin. But without help and intervention his story could... would have been so very different.

Please, if you possibly can, attend the screening of "What are You Doing" at Parliament House on Tuesday 28th of Feb. It may give you an idea of the world that is ours. And with knowledge and support, then the possibilities are endless.

Sincerely

Our name is legion for we are many...

I should be working on my Weekend Grateful or Weekend Rewind link ups. No, actually I should be asleep considering it is just after 3am in the morning, but that is a whole 'nother post.

Instead I am sitting here pondering the sheer magnitude of autism spectrum disorder. Otherwise known as ASD. It is a spectrum for a reason. The incredibly large range of diagnosis and the massive scope of this disorder is, to most, unfathomable. The term Autism Spectrum Disorder is the broad umbrella (at this point in time, until the DSM V comes into play in 2013) which covers such labels as:

• Autism Disorder - this covers what used to be termed classic autism or Kanners autism as well as a variety of behaviours and characteristics. Oh, that's another thing. The terms are constantly changing, as if this world on the spectrum was not confusing enough.
• Asperger's Disorder - otherwise known as Asperger Syndrome. Apparently this is going to vanish *poof* when the DSM-V is introduced. Great. Just great. The condition my son associates with himself, the one we have worked years on becoming an accepted part of his being, the identifying factor that forms a part of his self-belief, identification and confidence is no longer to be recognised. He will just be autistic, fancy that. Or don't. More to the point, DON'T.
• PDD - NOS - Pervasive Development Disorder - Not Otherwise Specified. I call this the limbo one. It is given in many cases in the early days when there is obviously something going on, but it is just not clear what. When help is needed, but the direction of the child's ASD has not become obvious. This is the one we were given in the beginning.

In the old days, when we first began this rollercoaster (around 2002/3) there were two other conditions under this broad cover:

• Rett's Syndrome
• Angelman Syndrome

Both lesser known genetic disorders with very serious and life-long implications. Apparently they no longer come under this ever changing cover.

This line of thought has been triggered by a heart-wrenching article written by a mum I am on several support sites with. The incredibly articulate Kirsty wrote this post which was published on the MammaMia blog.

After reading this, crying for a bit, then thinking on it, I started down memory lane. Our journey is unique to us. Whilst we have travelled a very different path to Kirsty, it has been no less painful, raw. (Refer Road Less Travelled) I think this is where a lot of people make assumptions, that Asperger Syndrome is a lighter sentence. It is not, nor is it a life sentence. It is a part of who he is, and always will be. His struggles are no less heartbreaking than those of others on the spectrum. Our hopes are no less valid. Our pain no less excrutiating at times.

People in my life (real and online) have commented, comparing us to others... you know the "Oh, but look at so and so's situation. You are so much better off than they are, you should be grateful." My answer is and always will be, "Yes, I feel for them. I can offer sympathy, compassion and to some degree, empathy. But it is not my life. It is not my child. It does not make our journey any less difficult, it is does not make the fear, pain and fight we experience any less valid."  Let's face it, EVERY EXPERIENCE of every parent in this complicated world is VALID. It is just that those of parents facing the challenges on the Autism Spectrum resonate far more deeply with me, for they are the battles I have fought, be it to differing degrees.

Our name IS legion, for we are many. It never fails to surprise me, just how many. I talk. A lot. I talk to people I encounter in every part of my life. I talk as much as I blog. And the huge number of people who confide in me that they too have a child, sibling, relative, friend or student on the spectrum... it takes my breath away.

Perhaps this is why when a mother such as Kirsty writes such an honest, powerful, evocative piece, it has a big impact. Read the comments that follow, the multitude of "I hear ya sista"s.

It is not 3am anymore. It is after 9. I can hear my two boys playing together, laughing, arguing, being typical brothers.

Boys 2 & 1 - 2004

I guess this has turned into my Weekend Grateful. Kirsty is right, he is so very easy to love. It is the easy bit. And as I listen to my boys laughter, I am so very grateful for both of them, as unique and quirky and boundary pushing and mind blowing as they are. As Maxabella says... it's all about perspective.

Blatant Promotion of Fundraiser!

Don't you just hate it when bloggers do this? Blatantly promote something of interest/benefit to them and theirs?

Well, tough. Cause I am doing it anyway and it is for a good cause. You know how my last couple of posts have been from ASD world, where mothers wear self-centred t-shirts, and others claim to push the boundaries of what is acceptable in the special needs world? No? Go back and read it then. Well, anyway, I have a compatriot, a cyber friend from this world. A congenial companion on the rollercoaster ride of autism. A soul mate of sorts, who thinks outside the square and pushes those boundaries way out.

She is a bad mamma jamma, advocating, educating and doing far more good in the world than a Madmother ever could.

Well Kirsten, my friend, is running in the City 2 Surf on August 14th. She is running for her daughter, my son, and the many who are nameless in the ASD world. She is running to help give these kids a future. She is running for the ones who need that extra help to reach their full potential, the ones who find it harder in this fast world, the ones who struggle if they don't have people to aid them in their journey.

She is running for this child...

And this one...

And so many others. So please, go to her page here and pledge or donate. As little or as much as you can. Because intervention can mean the difference between joy and pain. And every child deserves joy in their lives.

World Autism Awareness Day

That is all.

Go here for info.

Autismination

I never know how much to tell, if it becomes repetitive for older followers, or whether new followers read back through to past posts and know anyway.

I have two sons. Boy 2, my smart-arse, sensitive, witty, too damn intelligent for his own good, little boy with an adult mind child. He is eleven years old, turning twelve in the second half of this year.

He is also my child teetering on emotional vulnerability at this time.

And Boy 1. Oh, my Boy 1. My child with Asperger Syndrome (see - I used person first language there, all politicially correct ya know). For those who don't know AS is within the Autism Spectrum Disorder classificiation (for now, anyway).

Boy 1 has just turned thirteen. He is flowing full tilt into the puberty years, the time where life is said to become unpredictable (scary), full of mood swings (scary) and irrational (terrifying). Yet for our son, who showed all the signs of beginning this teenage phenomenum at eleven and a half, it is not true. We have a young man making great strides in becoming independant, who is happy and content in his own skin. He likes himself. If only we all could say that about ourselves.

Lately there has been a lot of commenting about terminology on the Special Needs sites and boards I frequent. I must admit it does not phase me if someone does not use the first person, ie a child with ASD, I even tend to use my Aspie boy as a phrase just as I would use my blonde child, or my blue-eyed son. It is a part of who he is and always will be.

But there is something I do take issue with, it goes against everything we believe. We have some great help in the form of an OT and a physio from the education department of our state. They have been wonderful in their interaction, assessment and advice for Boy 1. What distressed us though is a casual comment, no harm intended, but still not acceptable. "This community is very accepting of people with disabilities and problems." Ah, no... never, for he is not disabled, in fact many would love to have this amazing boy in their lives (over a moody, angry teenager). Disability is not a term we ever use in our house (except maybe when it comes to their Madmother and technology, but that is another story).

Differing abilities, this is what we live with. We have always encouraged the strengths of Asperger Syndrome with Boy 1. He is very comfortable with who he is and having Aspergers, probably somewhat to do with how his syndrome is accepted in our everyday lives. The last thing we want is for anyone to go "poor you" and tell him he is disabled, because he is not. He is incredible - just ask him!

Please, if you are in the community always remember these kids have big ears and you can do so much damage with words. You wouldn't like it if someone said something disparaging about you and yours, would you? Even the simplest and seemingly acceptable language to you may not be to others.

Just think before speaking, advice we should all follow (me included). Because it just may be someone's future you are playing with, and their whole perception of themselves.

Have a good one!

Wordless Wednesday - A different beat.

Wordless Wednesday is where you normally post a photo and nothing but a photo.

Today I am doing it with a twist. It is not a photo but two episodes of a kids cartoon show

Arthur.

And his friend Carlwho has Asperger Syndrome.

Watch both parts, show your children, friends, whomever. Fantastic explanation for kids in part II.

So not wordless, but important.

"You might even learn to fit in. But you'll always feel a little different."

Must. Not. Cry.



Do You Remember The Autismness Posts?

I seem to be meeting more and more people who are beginning their journey into the quicksand of special needs. Early last year I posted a series of posts about our path and experiences.

The Road Less Travelled 1 - The Tale of a Boy & his Journey into Autismness

The Road Less Travelled 2 - The Tale of a Boy & his Journey into Autismness

The Road Less Travelled 3 - The Tale of a Boy & his Journey into Autismness




Be warned, they are long and emotional. Why am I posting these? Well, as I said, I am finding more and more people on this or similar journeys and I think it helps to read of another's experiences. AND because I am working on no. 4 in the journey. I think people need to see the other three before reading four.

And let me tell you this one will be worth looking at. Just sayin'.

Autism Sucks

GUILT

My latest offering on the Autism Sucks (but our kids don't) website.

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.