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.

Eden's Fresh Horses Brigade - Who The Fuck Am I?

I am the party animal who can no longer party.

I am the writer who can no longer write.

I am the derby girl who can no longer skate.

I am the debator who can no longer argue.

I am the blogger who no longer blogs.

I am the motherless and fatherless daughter.

BUT

I am the mother who will mother until she draws her final breath.

This sums up a lot of who I am and how I think. At least for my firstborn.

So, who are you?

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.

Can I Scream Now?

There must be something in the water, or should I say something stirring my waters... But like the wonderful Kelley over at MagnetoBoldToo I have had this horrible feeling of dread for weeks now.

Waiting for the other shoe to drop...

My child is a complex blend of brilliance, blinding beauty and batshit craziness. My child dazzles in his happy moments, and despairs in his darkest depths. My child, who puzzles all of us... even his psych, with his inability to understand the social web of life, whilst being so far advanced of his years in articulation, emotional perception and intellect.

His teachers, whilst wonderful, just don't get what his short life has been like with a brother on the spectrum.

One of them did the unthinkable today, the cardinal comment sin. We talked of the incident last term, when he once again lost the plot. We discussed the "why" theories... the catalyst of this climactic conflict of character that is my youngest son. And then whilst I brought up and spoke of the content of the post I wrote for Autism Awareness Day (though I cheated and called it an article, lol), of how he had been shunted aside in the early years... she brought up the dreaded comparison of "Oh, we all do that, I did with my kids due to the age difference..."

I did not scream. I did not curse. She meant no harm.

But seriously? Don't ever fucking tell me it is the same thing. Don't ever, ever dare to compare the white bread niceties of your life with the charred black toast of ours.

Fuck.

Seriously.

Or as my youngest son would say... Indubitably.

Still waiting for the thud of my left foot shroud to tell me it has hit.

Blue

Yesterday was World Autism Awareness Day. Yesterday was also Light It Up Blue for Autism all over the world.

And so there I was in my blue dress.

MM 2010 - but this IS the dress I wore

With my blue hair.

Copyright Leanne @ Deep Fried Fruit
Who was edited out because she is so
damn hot she would overshadow my blue hair!

And how did I feel?

Blue.

Surprised? After the last week, I'm not.

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.

But He's Doing So Well!

He seems so normal... He is normal. Normal for a kid on the autism spectrum. What is normal, anyway? Or should I ask how you personally define normal?

He is doing so well. Yes, yes he is. But do you understand the little things we do every day to keep him on track? The things nobody but myself, and maybe his Dad and brother would ever, EVER remember to do?

You should be proud of him. Oh, I am, believe me. Especially as I know the effort it takes both him and us to keep the act up. For it is an act, you know. There are things that are a part of his nature, a part of the syndrome, that just would not be acceptable in this society.

I couldn't do what you do. Um, if it was your kid you could. You would. You don't get the choice.

But he's doing SO well! Do you know I make him laugh? That constantly I make little jokes, or smart comments, I twist and mock and cajole until the mirth explodes and drowns the anxiety in endorphins? Did you know sometimes he is so overwhelmed with the pressure of life that he hits his head and pulls his hair screaming "I can't do this anymore!" Do you know a lot of the time I want to join in? Do you know that the stress can overwhelm every part of his incredible mind, and stunt that beautiful brain? That sometimes I need to go in, soothe, talk, oil those mental cogs with silliness until the frozen fear melts and allows the intelligence to shine once more?

Do you know I worry endlessly about what would happen if I was not here? Who would he turn to, who could take away the pain, who could bring out the positives whilst minimising the negatives? Who knows him through to the truth of his soul and pushes the perfect buttons to make it right?

Who saves him from falling if I am gone?

Who?

Who would see the beauty and the endless potential of a boy who soars into worlds unseen by others all within the mind of mayhem?

But he's doing so well...

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.

Fussy Eaters - A Blog Trail of Hope!

"You never know the impact your blog post will have."

I followed a link this morning from a favourite blog. I must admit the title had intrigued me, especially after my little episode last week. But it was the tale of how not to get your knickers in a twist about your child's eating habits.

Now, I know a lot of Mum's with kids on the autism spectrum drop by here. In fact, this post... which linked to another blog post is written by the mother of a young boy on the spectrum.

Well, we all know how I rely on riding on the coat tails inspiration from other blogs, and this one certainly is no different.

In a warped way I was blessed to be the mother of my TWO picky, fussy, sensory kids. Yes, both, not just my young man on the spectrum. In fact it is the younger son who was by far the worst, and in many ways, still is. Just like his MOTHER.

I was THAT child. My mother, Wise Woman, swore if it was not for Vegemite Saos and Milo milk, I would not be here today. For many years, right into late teens, my diet was unhealthy, limited, and unhealthy. I didn't eat any vegetables except potato (baked, mashed or chipped) and green beans. NO salad vegetable EVER passed my lips. Fruit was an irregular visitor to my digestive system, though Mum could persuade me to eat apple and orange cut up together if drenched in sugar.

You get the picture. My dad, Grumblebum, attempted the force route. I could sit at that table for hours, easily out-waiting him, refusing to touch the now cold and even further unappetising food "your mother has cooked you and by hell, you'll show her some respect and eat it."
Yep, he was from that school. I perfected the go to the toilet/shovel food into pockets of clothing purposely selected for the number of such/hide food in the back of my mouth and in the cavern of my facial cheeks until I could manage to get to the first (toilet) to spit it out techniques.

So, when the universe deemed it suitable to send me two sons cut from the same cloth, well, let's just say I didn't follow in my father's footsteps.

I'm here, I'm reasonably healthy, and I survived to widen my eating habits as I grew up. And so it wasn't a big issue. For me. For my parents it was. And it didn't help or encourage me to change.

Don't get me wrong, I have tried to get my fussy boys to broaden their food tastes, and now, as they are 14 and 12, they really aren't too bad.

To cut to the chase, here is the Madmother (very short) tip list. It may help, it may not, but you never know.

• Imagination - one of my friend's who has a boy on the spectrum creates these amazing scenes for her kids. She calls them "dinner art". Amazing ideas which go down a treat. I only used to make up stories, more when the boys were younger. We would sit at the table, and I'd tell them of the giant who gobbled up all the trees (broccoli) and the good people of the tiny village who tried to defeat him by shooting carrot spears into his mouth. The pea rocks they shot at him... you get the idea.

"Fly away"
Copyright J. Negrin

"Let's go Surfing"
Copyright - J. Negrin. Brilliant mother.

• Mates or extended family members. My children, even now, are far more likely to try something new if it is suggested by a friend or for us, family outside the core group. More the former now they are older. I cannot tell you how many new foods have been tasted and approved all because a friend has told them to! Get over for playdates and include a meal ANY friends who are more adventurous in their appetities. It may not work the first time (though it usually did for us) but persevere. At worst, they get to work on their social skills, and form a stronger friendship bond (and if you use some of the ideas in point one - your house will become the cool one to visit - a little bribery positive re-inforcement for such friendships to be encouraged never hurt).
• Try, try again. Do not force, make it fun. As they get older, explain the nutritional benefits. It took my youngest to get really sick with some horrific virus before he really began to open up to healthy eating. Now he is a different boy. And yes, this is not my child on the spectrum.
• If there are sensory issues involved - cater to it. If they prefer soft food, blend, puree, whatever. Then slowly, over time, introduce the food in a less smooth consistency, more textured, gradually, patiently bringing it back to its normal state. Baby steps. And if rejected go back to the pureeing.
• Wine. For you, not them. Pour yourself a glass, sit, breathe. Kids grow up eating far, far less than yours. Seriously. (And yes, this is the same advice The Gourmet Girlfriend suggested, but it is what I have followed for many moons too: wine for the whine.)

And that is it. 

P.S. If this blog post had any impact or helped, please let me know. For I am still pondering on the future of this blog as the comments diminish. 

Kathy Lette, Asperger Syndrome and my New Girl Crush...

Yes, back after my early morning brain fart moment. Slowly crawling out of sooky la-la land back to my normal snark world.


I WAS going to write a really heartfelt review of the article in this month’s Australian Women’s Weekly about Kathy Lette and her son, but instead I am going to write something far more appropriate considering the target of my latest stalking obsession girl-crush.

Seven Reasons Why Kathy Lette Should Really Pick Me as her New BFF:

1. And this is indeed Number One! I not only have an intravenous drip to a bourbon bag, I also at numerous times have been hooked up to wine, liquers, port and even, under really strained circumstances, the odd cocktail. But here is the heart of the reason you need me Kat... the real why of this point. Hell girlfriend, ain't anyone ever told you that GIN and VODKA are depressants? The last paragraph of her interview mentions gin is her lifeline of choice. Do you really think you need something that aids the darkness? Like fuck you do! Alcohol is your therapy, remember the ASD Mummas' code: wine for the whine. Man, whomever was keeping this bestie spot warm for me seriously fell down on the job. Kathy, you NEED me. You know it.
2. We are on the same page with those ASD dilemmas. So much so that if I didn't know better I'd swear you've been reading my written works all these long years. In fact, reading your interview was a little worrying, as many of the examples, phrases, attitudes and expressions were uncannily similar to much I have vomited purged articulated in my blog, on parenting sites, and in published pieces. Okay, one published piece. Well... one internet competition published entry if you want to be specific. But a person of lesser self confidence could be threatened by this apparent coincidence. I am not. It just shows to me how well we fit as besties, m'kay? And who would ever accuse their No. 1 girlfriend of plagiarism anyway. That would just be nasty.
3. Puberty Blues. Whilst you may have been referring to some south Sydney beach culture, my youth on the Mid North Coast of NSW was eerily similar. Hey, I have been in the front of a shaggin' wagon only to overhear my bestie and her paramour discussing "is it in yet?" Gag. Also, the term "going slops" was not an unheard expression echoing from the sandhills at those random beach parties. And I usually was the one defending, dragging away, fighting for those who did not have the self-respect to say no. Not even going to mention the brawl at the 24 hour servo on the night of my 21st which started from my guns-blazing, white-horse charging, heroine to the rescue bravado, okay? But believe me, those puberty novel years? I lived it. 
4. Photo opportunities and the great publicity machine! We look good together, need I say more? Oh... I do? We both have that certain something, call it chutzpah or spunk, passion or fire. Man, we are so hot from the inside out, it sizzles! Just check out this photo - it works, don't you think? You may have more polish and style, but I bring a certain something to the table too. And I can honestly say without a doubt, in a battle of wits and one-liners I am more than capable of holding my own. Especially after being hooked up to the lifeline for a bit (refer reason 1).



Handbag, Kathy, Madmother

5. Age. Not much separating us here my lovely. You are a 1958 chick, I'm a 1963 babe. Both baby boomers, both holding those years well. Refer photo above. What better for a bestie, than someone who gets the jokes, remembers the culture, can relate on the same wave-length. And why would you want someone NOT of our generation, who you waste much time in lengthy explanation to. Becomes very tedious. Whereas moi - well, I have no doubt that frequent hilarity will be had from merely a look, no words necessary when you are on the same wavelength!
6. We share a love of our rainbow swirl sons! Boy 1 wrote this when he was 7. Screw Black & White - only looks good on zebras. Or me. Actually black and white really suits me... as does red. But my son is technicolour, even though his opinions may be black and white - HE is not. And apparently neither is yours, Kat. In fact, he sounds very much similar to Boy 1 and I do think as you and I are heading into this bestie thing, your boy should seriously, as the older, 21, think about mentoring my younger man. Just as Boy 1 does for those younger than he. All together now - AWWWWWW. Bucket please.




2010 - Madmother Derby Dame


7. Roller Derby. Who doesn't want a roller derby chick as their bestie? Come ON! Great street cred, whole new cache of story ideas, and I can madmother splat any other stalkers crazies. Sorta like a bodyguard and bestie all rolled into one (get it... rolled? Bahahaha. Okay. Not funny. Little too desperate maybe?). And don't tell me you never picked wheels over heels back in the 70's, K. We both know better! Oh, and I can even sub as a waitress for dinner parties and the like! Cool, huh?

I was going to continue, but as this post is getting pretty damn long I'll stop here. Because we both know this is inevitable, eh K? I could use same lamo terms like two peas in a pod, or sister's under the skin, but that would be tragic.
And that, I am not... merely a

The Art of Friendship... Or How To Make a Friend in an Autistic World.

Friendship. Something a lot of us take for granted. Something we all want, but for those on the autism spectrum, something that seems, at times, impossible.
It seems this topic is a hot one this week.
One of my favourite blogs, the crack and the light, addressed it a little ago.

Autism and Empathy, only a few days later.

And then Parenthood had a massive reaction to their episode: Tough Love (not available in Oz yet).
More discussion on this episode, and a great article, here.

One of the diagnostic requirements to be assessed on the autism spectrum is (as per Autism Spectrum Australia) :
Impairment in social interaction
May include:

• Limited use and understanding of non-verbal communication such as eye gaze, facial expression and gesture
• Difficulties forming and sustaining friendships
• Lack of seeking to share enjoyment, interest and activities with other people
• Difficulties with social and emotional responsiveness

Friendship does not come easily in an autistic world. Social skill impairment and obsessive interests make it hard for the child to connect and make friends. Add in language difficulties and self-focus and *boom*,  you have a nearly impossible friendship cultivating experience.

And it is, as parents, our deepest desire, OUR obsession, our dream for these kids, for whom life is already far more challenging than your average joe, to have a friend.

We do not, like some, want the most popular. We do not yearn for the cool group acceptance. We just yearn for them not to go through life alone, lonely, isolated from peers.

It is why that episode of Parenthood has hit home for so many people.

A friend.

A lot of my regular followers may be sitting here going: "WTF? HER son has a friend! Her son has more than one!"

And they are right. We were lucky in a way, we were well on the trail of diagnosis when Boy 1 was very young. We also were blessed to be able to think outside the square of those days. We were given little guidance, and no information. One of the few things recommended to us by our paed was to foster one-on-one friendships. So we did.

To get to the bone, the advice I would offer to others today is this.

1. Encourage friendships outside of group settings. Arrange playdates (for the young) or social excursions (for the older) ONE_ON_ONE.
2. Be open to parents of other children. You may be surprised at how supportive they may be of a friendship. Fear comes from ignorance, we chose to be loud and proud, open and informative, all questions welcome and answered.
3. When a connection/friendship is made, enforce "friend" free days at school. The very intenseness of these friendships (and let's face it, our wonderful spectrum kids are VERY intense) can be what burns it out. The pressure on the other child, hell, on both of them, can be massive! We instigated this at least once every few weeks. This was more in the younger years, as they get older they manage it themselves if given the skills to see and acknowledge the need for personal space. Make sure you also explain to teachers and parents why you instigate these. We always found they not only understood, they appreciated these actions. And to watch the two run to each other the day after, pure joy. (I always found it refreshed and strengthened the bond in our case).
4. Teach social skills. This is a big one. We actively, in every situation, explained to our son what the expected/accepted social norms were. Still do today at 14. Most of them he has retained (but they need to be reinforced - apparently, a lot of children with ASD regress in behaviour during teenage years. This is not only due to hormones, puberty and typical teenage angst... it is also because we, as parents, go "Phew, he's got those ones, now we can breathe!" Uh-uh. It is  proven that kids on the spectrum do not keep learned behaviours until their EARLY 20's! Yikes! But yeah - keep on drilling 'em in), some of them he is still working on getting. Small talk is a big one he struggles with ("What? You don't want to know all the details of string theory?").
5. Do not be disheartened if at first you don't succeed. It is hard to find another they click with. This goes for ALL kids, on the spectrum or off. It is just a little more limited a pool for those on the spectrum.
6. Realise that kids are accepting. If you work on them understanding when young, the odds are they will still understand when older. Boy 1 has many peers who, whilst not friends, are not enemies either.
7. Breathe. And do not cast your social expectations and beliefs onto your child. Hard, I know. But important. It is their journey, not ours, and all we can do is cheer from the sidelines no matter what or with whom they are playing.

As I write this Boy 1 is at a sleepover at one of his best mate's houses. HE is finding High School hard. He has had this friend by his side since Grade 3, to laugh with and relax during break times. To support and be supported. Now they are at different schools, and whilst Boy 1 likes his new school, it is the social side that is suffering. I see it in the tenseness of his body as he treads carefully through the school week.

But the nice thing is that his mate feels somewhat the same. The last two weekends these friends have been together. This friendship, like his other mate C, is strong enough to survive the different schools. But it is hard for both of them right now, finding their feet. And I think they appreciate each other that much more.

S, Boy 1, C, Boy 2 - January 2012

We know we cannot force him to make new friends. At this teenage stage, we can only guide carefully, and support him. It is harder to meet new people and make new friends when older. And we have to allow him to take his own path. In his own words (as we gently push him to unfold those beautiful dragonfly wings once more), "I am taking things from a more observational perspective for a while." Fair call. For now.

Hyperventilation - The New Coping Mechanism

Yes, I have been off the radar AGAIN.

Yes, I know this poor blog languishes untouched.

But I have rather a lot on my plate right now.

We have until January 31st to be completely out of our shop. That means packing stock, files, fitout and anything else not nailed down and moving it into our storage shed on our property. Which is an hour from our shop.

I am listing madly on eBay only to have some idiot buy one of the expensive display cabinets (one of five) but not win any others thus "he doesn't want it" and becomes abusive when it becomes an issue for me.

And tomorrow... tomorrow... is Boy 1's first day of High School.

Hard for any child. Especially hard for a child on the spectrum.

We feel it is the right choice. A small private school (capped at 225) which caters to the individual, encourages success socially and academically, sets the bar higher but not out of reach.

BUT... it is a totally new environment.

"I am nervous" he tells us.

"I am excited" he tells others.

The truth is somewhere in between.

I am hoping that he is okay, that he is just nervous, not on the verge of meltdowns or terrified. It is so hard to gauge the degree to which this nervousness will affect him. It is so easy for him to lose his grip on his emotions with such a major change.

We have done all we can to facilitate this move, have prepared as much as possible - both him and the school.

His two best friends are not here, they both are going to the public school. This is part of what worries me. How will they see him? Will they get past the differences and see the wonderful person he is? Or will he be alone, no-one to talk too?

He pulls into himself when he is scared, will anyone try to bring him back out?

And to top it off, the one child who has continually mocked and bullied my son is going to be at this school, but I can only hope the school is onto it (which they tell me they are, for of 4 boys attending 3 mothers have been in to request this child NOT be in the same class... says it all really). To be honest, I hope this new start turns this boy around. If it does not then I have been assured he will be gone, removed from this school community. But what damage he could do in the meantime...

But now I must concentrate on my child, not what ifs.

And try to pretend I am not terrified and on the verge of meltdown.

"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