Special Boys’ Business Instructions – LOVE ‘EM

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Special Boys’ Business – what a book! It is THE INSTRUCTIONS!

This book has been especially written for boys with special needs. Specifically autism, communication disorders, and intellectual challenges.

I purchased Special Boys’ Business and Secret Boys’ Business as I wanted to see the information presented for neurotypical and compare that with the text for neuro-diverse children regarding puberty and the changes boys’ experience.

As you know, my Mini Giant is on the cusp of puberty and I have been looking for text to support the conversations we are about to have in an age appropriate manner.

For us, Special Boys’ Business is a fabulous first start.

The visuals are great and the information concise and clear.

Acknowledging that many people on the spectrum are primarily visual learners, the illustrations are the perfect medium to communicate the key messages about bodily changes, the importance of hygiene, what to wash, fluctuating emotions, “sexy” feelings, masturbation and privacy.

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The language is simple and direct. My MG can struggle with complex verbal loading and when approaching this subject, I want the information to be easily understood and non threatening.

Transitions are difficult for my child. We do a lot of work at home to minimise anxiety surrounding transitions. Puberty is yet another time of significant transition. Overlay this with the anticipated hormonal surges, moodiness and increased anxiety and OMG, any and all preparation we can do to help him understand what is happening, is vital.

Why use the word vital?

Because mostly, I am concerned for my child’s mental health.

I want him to have a healthy self esteem, to know that everything is progressing normally, to know it is safe to come to me if everything is not developing as it should. I want him to not fear his emotions, to stuff them down and fester, to be ashamed of what he feels. I need him to hear the information from me before some kid in the school yard fills his head with rubbish or fact but my MG cannot understand the context and it frightens him.

As part and parcel of PDD – NOS, my Mini Giant operates on a baseline level of turbo charged, heightened anxiety that neurotypical individuals would potentially self medicate to manage or numb.  It must be exhausting to be so anxious and ready to fight, flight or fright as your regular response to everyday life. We are working on strategies to remediate this however puberty is anticipated to exacerbate anxiety symptoms. I want, need, desire my MG to be fully aware of what is happening to him so as to minimise his stress and anxiety around this time of transition. He will have enough to be concerned about, worry over, mull and brood on as part of teenage life.

So, Special Boys’ Business is a great starter for our developmental journey.

Secret Boys’ Business has a significantly greater verbal/written loading and therefore more detailed information. As per Special Boys’ Business, the pictures are beautifully drawn and support the text. For us, I think we will also use Secret Boys’ Business. Probably more for me as script support during conversations with MG or maybe we’ll read it together when we are done with Special Boys’ Business. Anyhoo, it is a well written book and perfect for my not-so-little person.

Heather Anderson, Fay Angelo & Rose Stewart with illustrator Jeff Taylor – this Noctilucent Mumma thanks you for your excellent work and for making my job a truck load easier.

Btw, Here is the link again:

http://secretgb.com

N x

ps: this is not a sponsored or endorsed post. This is my independent opinion based on my child, his needs and our developmental journey. xx

 

 

 

 

 

 

 

Australia: Is not the lucky country if you’re different.

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On June 21, 2017 Pauline Hanson, one of our federal politicians who holds a significant level of influence, spoke out against including Autistic and Neurodivergent children in mainstream schooling.

She stated that “we need to get rid of those people” and there was a strong implication that “those people”….. “do not want to get ahead”,  that they hold their neurotypcial peers back and take all the attention of the educators as they disrupt the class.

Her language was divisive, crude and her personal opinions whilst clearly ignorant, were also morally contemptible.

Public commentary has widely condemned her. There have been those who have white washed her comments with excuses that she was generalising and just being clumsy with her rhetoric.

She has refused to apologise for any offence and staunchly maintained her position.

That position: Autistic children should be removed from mainstream schooling.

As a mother of a child on the spectrum and a wife to a husband on the spectrum, both high functioning for what that is worth, I am beyond annoyed, disappointed, incredulous and FUCKING ANGRY!

Her comments are discriminatory, out-dated, and most of all, so hurtful.

I am not on the spectrum. I am the odd one out in my household. Even my dogs have issues. That’s not to say that I don’t. I am considered neurotypcial and “normal” whatever that means. So why am I hurt?

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I am hurt to my core because this politician is denigrating and promoting segregation of the people that I love. People whose difference is the norm in my home. People who love and adore me and would take a bullet before seeing me hurt. People who are incredibly smart, successful, productive members of our community. They are kind, passionate, quirky, funny as hell and craving love, connection and purpose like we all do.

My son, now 9 is thriving in mainstream school. There was a time when he was very young (baby – around age 6) when we were facing significant challenges with his behaviours, his sensory issues, his inability to sleep for long periods, his determination, his inflexibility. This all lead to catastrophic meltdowns, hitting, punching and screaming. I didn’t believe we could ever toilet train him and was a firm believer that he would be attending a non-mainstream, supported education centre. It was a time of intense emotions, crippling fear and a level of fatigue that I have never, ever known before. (I think I am still recovering from that actually but that is another post for another time.)

 

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Through earliest intervention and committed daily work at home, my son has managed to understand in part his regulation issues, to a point where they are exhibited less frequently.

Melt downs are never demonstrated at school. The age appropriate strategies we have taught and over practiced, help him to be manage his emotions like any other child in his cohort. His school reports exemplary. The teachers’ comments: he is a gentle, compliant, polite and a good, hard working student.

That is not to imply that he is “cured”. I would never insult my child, my husband or anyone on the spectrum in that way. What I mean is that he is now more able to manage, to regulate his behaviour at school and meet the behavioural expectations set.

What I am saying is that my son is on the spectrum and therefore different.

He is different but not less.

He is as different to his peers as I am to you or you are to your friends.

Tall, short, intense, anxious, happy, clinical, analytical, warm. All traits and in our household, we see Autism like a trait. We celebrate its strengths, focus on capabilities and understand where it presents as a challenge.

Whilst your child might be having extra coaching with maths, my child will have extra coaching with social skills. Where your child may be quiet and shy, passionate about ballet and music, mine is reserved, analytical and passionate about space and the human digestive system. As with our own friendship circles, we all have areas of similarity and connection and yet we are all very different too.

People living on the spectrum or with other special needs do not deserve mandatory exclusion. They require understanding, tolerance and your acceptance. Just because some people look and think differently, whom are marching to the beat of their own drum, doesn’t automatically equate them to being a threat. Their diagnosis is just a medical term for the challenges they face.

Clearly the decision to be mainstream schooled or attend alternative supported education is a decision that parents DO NOT TAKE LIGHTLY.

Parents want the best for their child and best is where their child learns, thrives and develops towards independence. Best does not mean what everyone else is doing.

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Parents of special needs children choose schooling like neurotypical parents do. Private or public if funds allow? Single sex or co-ed? Travel time from home? Are we in the right catchment area? However, the decision for my family was also made more complex and layered by these questions: Can he cope with the demands of mainstream schooling? Academically yes, but what about the fluidity of un-structured play; the level of unsupported social interaction at recess and lunchtimes; independent toiling; independent eating from a lunchbox; non assigned seating in the classroom????????

Will the school we choose understand and support his needs? That means, do they have the knowledge, time and empathy to do that? Will the school want him? It has to be a decision based primarily on the child’s capacity and function and then, in conversation with the prospective school.

There is a brilliant rainbow of children in every Australian classroom.

Children the vibrant elements, the colours that make up the beauty that can be seen when the sun comes out after the rain and causes you to wonder whimsically where that pot of gold is at. Children can and do, come to school without breakfast, hungry, angry, from hurt homes, from stressed homes, from a myriad of issues that have a direct impact on their behaviour which the teacher then needs to diagnose and work to resolve, before individual learning can begin. If we are going to scapegoat Autistic children as the reason for disruptive classrooms then surely this precedent means we have a segregated classroom or special school where troubled children are also shunted off as they take up too much of the teachers time when they lash out, call out or disengage.

Going along this line of thought whilst we are at it, the latest research says that in any classroom, there is up to 7 years emotional age difference within that single classroom cohort. So, those children that are emotionally immature compared to their peers, who have some issues with self regulation because of their age, the precedent is set where we must pop them on the conveyor belt outta there and offsite to their segregated special room until they grow up and can re-join the norm.

Out-dated, archaic and ridiculous thinking.

We have anti-discrimination laws in this country to protect the vulnerable, the different, the marginalised. Laws that promote equal rights for all. Pauline Hanson is a beneficiary of those laws as she is a woman in power. Something that was very difficult not so long ago. She should know what it is like have stones thrown at you, to be bullied and dismissed because of her difference – in this case, her gender.

I would like to remind us all that the diagnosis DOES NOT DEFINE AN INDIVIDUAL.

Rather, a diagnosis is part of the make up of an individual. And when you have met one person on the Autism spectrum, you have met one person on the Autism spectrum. It is a spectrum like the rainbow. Each parent must consider the child and their individual needs when it comes to education decisions.

All neurodivergent people are individually beautiful and add to the tapestry of our existence. Many neuro-atypical people are hugely successful and some eclipse even the most notable billionaires if that is your yardstick of measurement.

“These People” are voters Ms Hanson. “These People” are future voters Ms Hanson. You are elected to represent “These People.” Our children, our partners, our lovers and your countrymen.

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With great power, comes great responsibility. Words must be carefully crafted as they change community perceptions and normalise attitudes either positively or negatively towards difference. Pauline Hanson knows this.

Difference does not equal threat. Blind stupidity does.

So controversially I say this:

People living with Autism, ADD or other “special” needs, you have a medial diagnosis to help explain your challenges. (Not that you need to btw)

There is no excuse for stupid.

So given that, now the question should be this:

Pauline Hanson, what’s your F’ing excuse??

Neve xx

Apols for the rant but this is too important in this day and age to let pass unnoticed. I will always stand up for my child, my husband, my friends and anyone else who is marginalised, excluded or discriminated against on the basis of bullshit, ignorance and ill-informed people who unfortunately hold positions of power and influence in my country.

 

 

Mini Giant sets the Agenda

Nearly 9 years ago, Mini Giant (MG) popped into the world.

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Several weeks overdue, he didn’t want to leave the comfy, cosy safety of “his” womb, putting up a serious fight that required forcible eviction.

Despite all my birth preparation, pre reading and research, I was left exhausted: bewildered and completely unprepared mentally and emotionally, for when he arrived. Suffice to say that there was a massive disconnect with the reality of having a child versus anything I could have anticipated.

MG did not sleep from the moment he arrived.

He was a cat napper. 20 minutes here. 30 minutes there. I was lucky if he would go a full hour at night. He only wanted to be held by me and then only in certain positions. If I didn’t hold him, he would scream. Screams of deep distress, turning his cherub face purple. Then more frighteningly, the screams where there is no sound at all. Controlled crying didn’t work. Neither did sleep school or the well-intentioned night nurses.

Trotting him promptly off to the Paediatrician, we were told he was in perfect health.

Maybe he was a late learner to sleeping. So exhausted I couldn’t, didn’t question this advice further. “Every Mum goes through this,“ my friends all said. “The first year is tough”. I thought I was weak. I thought I was failing. “Suck it up Princess” became my mantra.

Still cat napping and now fast forward to 9 months of age.

MG has a room stuffed full of age appropriate toys and books. He plays with just 3. They are bright shiny cars with big colourful wheels. He spins and spins and spins those wheels. Faster and faster, over and over. Total and unbreakable concentration. Never, ever using the toys as they are intended. Not interested in anything else but the spinning.

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Coming out of my psychotic sleep deprivation haze, I mention to Husband, “Do you think MG has a hearing issue?”

MG doesn’t respond to his name. He doesn’t often smile. He rarely looks at my eyes. He does scream to rival the girl in the shower scene of psycho when the vacuum cleaner is on, or when the lawn mower is going or if a motorbike goes by. He does scream when it is windy. He does scream if anyone else other than me, holds him. Not a hearing issue. Hypersensitive to noise?….Hypersensitive full stop?

A conscious thought bubbled, gelatinous and demanded attention. Maybe, just maybe there is something more here. Could it be that MG is on the spectrum? Is he …could he be……[whispered]….Autistic?

Baby play date with a girl friend and I bounce that off her. The angry, frustrated response: “No. Don’t be so stupid. Shit Darl, calm down. He’s fine. He’s fine.” The thought bubble was promptly popped and erased.

All other milestones are being met. Well, maybe not language. Although his Nana did say that she understood him. I perhaps was the only one who couldn’t.

Fast-forward again to 2-year-old childcare.

MG is an only child and so we enrolled him there twice a week to socialise.

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We said he was an anxious child. We said he was very sensitive. We said he was frightened of loud noises. We said he was obsessed with ceiling fans and spinning objects. He wouldn’t separate from me. Husband was on drop off duty. Then one day from childcare came……The Heartbreaking Phone Call.

They told me he cowered in a corner and refused to come out for an hour after a carer raised her voice at another child to stop some dangerous behaviour. They said they couldn’t console him. They said they tried everything. They said his anxiety was different. They were concerned how sensitive he was…….

I knew then.

I knew at my core what I had known 18 months earlier.

He was on the Autisim spectrum.

I began the diagnostic process in earnest. Trying to make up for lost time. Feeling guilty for not recognising it earlier. What are we dealing with here? When you know better, you do better right?

Seeking advice from others, I came up against a wall of silence and dismissal.

No one in my circle of Mums had a kid like mine and only a few seemed really willing to acknowledge any issues they were having. Fuck me. Really?

The façade of PollyAnna perfect Mum was clear and present. All virginal, white and Stepford like. Not sure when popping out a kid wiped your freak party slate clean but ladies please, you forget I have known, loved and played hard along side you long before your munchkins were made.

Using my professional network, I found a psychologist whom I trusted. There were no holes barred in her approach. Blunt and to the point: Yes he is on the spectrum. PDD-NOS the diagnosis. This needed to be confirmed by another health discipline in order for it to become official but yes, he’s a spectrum kid.

A rapid fire gun sprayed questions in my head: What? What does it mean for him? Did I do this to him? Did I eat a fucking orange/peanut/not-organic-enough,-despite-the-billion dollar-per-kilo-price-tag-certifying-it-had-been-harvested-by-angels-from-Mount Divinity, vegetable when preggers? Fixable? What do I do now? Why didn’t I know? Why didn’t I know? WHY DIDN’T I KNOOOOOOOOOW???

I did know. I didn’t want to know. I was too tired to know. I loved and love MG not to see anything but his purity.

What now?

For me, you are initially shell-shocked by the diagnosis. King Hit. Smashed back to the floor and winded.

The realisation crashing down all the hopeful aspirations you may have held for your child’s future. Gone. And then….then you grieve. Hard. Deep, way down in the most private part of your soul. You cry oceans of tears for your child, for you, for the lives you had imagined together. You grieve for the loss of what you thought would be. Because you know the goal posts have changed and you know that you don’t know anything.

You grieve until you are raw, spent, and empty.

The internet search begins. You look for support, information and answers. Trying desperately to right your world back on its axis. My experience found only more despair. Website after website. Some uplifting stories dotted infrequently within the lakes of sadness. ASD children being bullied, socially maligned, unsupportive schools, marriage break down. Financial stress. The stories so profoundly painful that I had to switch off.

Then I made a decision.

Not for me this despair. Not for my child. Not for my marriage.

My child is more than his diagnosis. My child is more than his differences. My child is beautiful, kind, quirky, idiosyncratic and an endless pool of possibilities.

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My child is different.

But then so am I, as are you.

Life is not what happens to you but how you choose to react to it and I choose to shift my focus and look at his neurological condition akin to a personality trait.

Not minimising the symptoms nor trivialising the differences but rather seeing it as just a part of his make up.

For me, tilting my view enables us all to focus on capabilities and function rather than incapacity or deficits. I listen to understand him, not parent for me. He tells me his story daily with his actions and I more and more, appreciate what makes him unique.  He teaches me to be the mother he needs, not the one I originally thought I would or should be.

Fast forward to today. Almost 9.

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MG is mainstream schooled. In Year 3 and achieving. He is well supported by caring and nurturing teachers who understand his individual points of difference. He has a small posse of friends. He is well mannered, and eager to please. He learns tennis, taekwondo and swimming.

Of course, it hasn’t all been easy. We have scaled mountains only to fall with our very next step into an abyss. MG has worked hard, supported by years of external therapy. The OT in me has unhealthily blurred the lines between mother and therapist. Our family has had permeant seats on the daily rollercoaster ride of sheer ecstasy and bowel wrenching heartache – sometimes at the same time.

My knotted, corse battle scars from ugly fights waged with small-minded people and institutions, feels real. We have been not invited to parties and outings because of the “label.” Strangers have proffered unsolicited advice and judgement especially when MG was in a full – blown meltdown. Others have told me he is fine and will grow out of it or more insulting, it is all in my head.

Like with all children, I know we will face many challenges as the years roll on. Our challenges just may look a little different to yours.

At this very moment, who MG is today and the young person he is developing into makes my heart happy. 😊

Those fleetingly rare moments when he focuses his laser like gaze past the window of my eyes, burrowing in to really see me. Our connection; so intense and palpable. Spontaneously he then delivers: “I love you Mum.” Floored, winded and struggling to find my breath for a different reason now. His love is pure gold.

This is my experience. What nugget of advice would you give parents just starting the ASD journey?

Neve xx

Key pointers from our experience that may be signs of ASD:

  • Chronic Sleeping issues
  • Not responding to name
  • Not engaging in eye contact
  • Hypersensitive to noise
  • Hypersensitive to textures
  • Only attaching to the one person
  • Not using toys for that which they are intended
  • Spinning, chewing, head banging
  • Highly anxious
  • Rigidity with food choices

Please note that this is a small indicative list. It is not exclusive, exhaustive or intended to diagnose. Furthermore, behaviours identified above may or may not indicate the presence of ASD or other medical conditions and /or behavioural issues that have not been commented on here.

As a mum, you are your child’s voice and greatest advocate. If you are unsure, or have any concerns, trust your instincts and seek advice from trusted professional sources.