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.

Whiplash - The Day My Boy Broke.

"I thought you had it easier, don't tell me it is still going to be hard!" Recent words from a dear friend whose little spectrum man is in Prep.

Autism Spectrum Disorder. Asperger Syndrome. A way of life. A lifelong disorder which doesn't miraculously vanish.

My oldest son is an amazing young man. But he is still on the autism spectrum. My oldest son is exceptionally bright, intelligent, smart... whatever you want to call it, but he still has Asperger Syndrome. His inner light can be dulled, crippled by his anxiety and stress. Strangled by isolation and assumptions of others.

My boy is compassionate, wise, inspiring and giving. But with change all this can be masked under uncertainty, fear, misjudgement.

New people look at him and they see only the label. Lost is the security of the school he attended for seven years, lost is the knowledge of what an incredible journey it has been, lost are his achievments in winning through some of the crippling challenges life has thrown his way, lost is the vision of his personal growth and amazing strength and beautiful heart.

Lost. They only see today.

We knew it was going to be hard.

And it is.

We just have to believe his light will shine through once more.

We know it will.

I just sometimes wonder why life has to be so damn painful for these kids. The most special kids I know. The ones who take your breath away with their ability to forgive.


He is not a label. He is Lewis.

Remember his name, for one day you will sit back in awe and say "I know that boy."

P.S. This is the reason I called a halt to any movement on his book. I am his advocate, HIS. For him to add the stress of the trail to publication onto this massive change year... well, it would not be a positive for HIM.

It is not forever, and as I explained to him, it will always be the book you wrote at thirteen, no matter how old you are when published.

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.

The Beautiful Words of Wisdom from a Deepak Boy.

Driving down the mountain to pick up Boy's best mate C for a few days, I asked my oldest what he would say about Asperger Syndrome if he was trying to explain it to a room full of people. Now, you need to remember he is only 13 and still finding his path on this journey. But I was curious, after reading another blog and discussion on the topic, as to exactly what he would say.

Boy 1 today - Copyright Madmother

"It is embracing your own kind of normal" he begins, "Whilst there are things it makes me struggle with, it also gives me a different outlook on the world and uniqueness creates greatness." At this point I am struggling not to tear up.
I ask him what would he do to explain it to people who don't know anything about Asperger Syndrome, to pretend he is a motivational speaker (which he dreams of), in a big hall with lots of people who have no idea about ASD.

He is quiet for a little. I ask him if it is too hard... "No, just unexpected and I need to think about my answer."

He is silent for a moment longer.

"Asperger Syndrome means you are different, not bad or good, it just means you are different. You stand out from the rest. You should enjoy it because it means you are a unique individual. It also means those hyper-senses can be used to your advantage.
Keep an open mind and you may learn new things. I would tell them about the things I found hard when I was younger, like noises and changes, and writing. I would also explain that these things are less hard now I am older. They also need to think how they are different and how it would make them feel if people teased them or tried to make them feel bad. Maybe if they talked to or asked us kids on the spectrum they would find out we like the same things and can be friends. Everybody needs friends. I am really lucky with my friends.

Do you think that would be good Mum?"

Yes, my son I think that would be very good. If only we could teach everyone to embrace the unique, wouldn't the world be a wonderful place? I adore my own little Deepak, he makes this world a positive place.

On this same note, a friend on Facebook just this minute sent me this link, ties in nicely methinks (though about ADD, it also resonates for ASD).

VIVE LA DIFFERENCE!