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

 

 

 

 

 

 

 

Open Your Eyes To See Me: I AM YOUR CHILD

Screen Shot 2017-06-13 at 3.27.07 pmIf he could write to me, this is what I think he would of said.

The First letter in a series letters from my 3 year old child to me, his Mother.  Bless his cotton socks.  My reply of love follows.

 

Dearest Mummy,

Please open your eyes.

Here I am. Raw. Innocent. Pure.

Look and see me. The real me.

I am your child. Your love.

I share your biology. Your DNA.

I am dependent, fragile and new.

I am Me.

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I am whole and complete and desperate for your love because I am your child and you are my mother. It is the natural order of things.

What is this Autistic I hear you talking about? What does this mean? Am I Austism?

Why are you anxious? Being so connected to you, I feel it. I feel everything you feel. It scares me. It makes me worried. You are my security, my everything. Are you going somewhere? Are you leaving me?

Why do you look at me with such concern? Am I sick? Am I wrong? Do you not love me? No, ……..You love me. But do you really love me? I ask because I’m not sure you see me. The real me.

How come we go and see different people, therapists I think you call them? They are nice but I don’t like going. Can you not see I am happiest in my home where everything is familiar and predictable?

That is where you are.

In between your eyebrows, there are frown lines, like train tracks on your forehead. I don’t know what is means when your forehead crinkles like this. Am I not answering you right? Doing something right? The furrows; they are there often.

Mummy, please see me.

Know me. Understand me.

Try hard Mummy because I am your child and I need you. I need you to help me, to decipher this world and mostly, to love me. Always.

Your child,

MG xx

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My Letter of Love to Him

My Dearest Child, My Mini Giant, My MG,

Forgive me.

It has taken a little while, but I see you clearly now.

I see the real you. Your core, your soul, your purity, your spirit, your love. You.

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You are beautiful, unique, sparkling and rare. An individual and my special child.

I treasure your every breath.

And to answer your question:

No my darling. You are not “Autistic.”

You are my child who has Austism.

PDD-NOS to be precise. It means you can struggle with things like social interactions, self regulation, understanding non-verbal behaviour, and sensory hypersensitivity but your challenges are not so severe or some even present, to be classified as having “Classic Autism.”

These words are medical labels my love. The Doctors also refer to Autism as ASD. (Autism Spectrum Disorder). The titles help health professionals identify areas of disability. Your obstacles are serious, real and when know about them, we can work with you to overcome them, to help you function more easily. Together we will quieten the noise of your world to make it a little less scary and overwhelming.

I will write about what this means and how we can implement strategies to help in my next letter.

At the moment, I want to keep talking about how I do now see the real you and what you mean to me. Most of all, I want you to know that I love you with every atom in my body.

You are and will always be, firstly my beautiful child.

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This ASD journey has been unlike anything I have ever experienced before. As your mother, I am not sure I have ever been prepared for this. A mad whirlpool of emotions has spun my thoughts into a frenzy each day as I have tried to madly get up to speed in order to best understand you and how you view life.

Because what you see, think and feel is very different to how I process our world.

I have panicked and cried and fretted and mourned for you. Unsure of what I am doing or if indeed, I am the best person to be your guide.

As your mother, I have lost my way in your diagnosis. Trying to learn everything yesterday.

Focused solely on the label, I forgot that you were my little Angel. My child. I saw you equally as my son and as a patient to treat; Autism to battle.

Trying to fix you, yet you were never broken. I was looking for anything that would plaster over the challenges you faced.

I did this with love in my heart but concerned panic in my brain. I was very conflicted, confused and close-minded.

I am sorry.

I’m sorry that I was blind to the real you then. That my emotions and frenetic thinking pulled a thick, heavy curtain between us. Perhaps, shielding you from me for a time. Unintentionally, making me less emotionally accessible. Not fulfilling my role as a mother in the way you needed.

I have cared for you, played with you and tried to be present. I have fed, clothed and bathed you. I have rocked you to sleep, sung songs and danced with you. I have calmed your body and soothed you. I have nurtured you to the best of my ability but always in my head was the PDD-NOS. Like a coal miners head torch shining constantly from my forehead, a spot light putting the Autistic label in the lead role and centre stage.

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Activities I planned were always around therapy outcomes and skill acquisition. Educational, social, behavioural. “Lets draw a smile. It means you are happy. Like a sideways banana, yes that is a smile. Happy feels like warmth in your tummy. Your heart might beat a little faster. Your body can be tingly. You may want to run around. Happy is a yellow colour….”

Nights spent researching, learning, questioning. ABA therapy. Gluten free/Casein free diet. Supplements. The importance of the Brain- Gut Axis. Social stories. Visual aids. Sensory blankets. Sleeping Aides. Melatonin. Hours upon hours in the dead of night desperately looking for the Holy Grail that would “save” you.

Only, you don’t need to be saved or fixed.

You are not damaged my darling. You just need to be seen and understood. I know this now.

Like trying to smash a round peg into a square hole, our world is frightening, chaotic and confusing place to live for you. Dominant yet unwritten rules seem to form a delicate and intricate web that is the foundation of our human interaction. Operating in this neurotypical world, everyone seems to intrinsically know what these invisible rules are, except you. This in part, is what makes living with Autism a challenge for you.

You are not alone. As a neurotypical individual, those rules confuse even me at times. But I am here to help you navigate those situations and learn some general guidelines.

My darling, you have been unconditionally accepting of me. You have also taught me so much.

 

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Tangible Happiness

You teach me daily to be patient. To stop, breathe and to listen.

You teach me daily what it is to be a mother.

You teach me daily about trust.

But most of all my dearest child, you teach me daily about love. How to love, how to be loved and how to accept love.

So my gorgeous Son,

Forgive me for my mistakes.

I see you.

You are my child with Autism.  Autism does not define you.

I see you.

You are so much more, so much greater than any diagnosis.

I see you.

My love. My DNA. I will always love and adore you, for you.

You are seen.

Mumma xx

 

 

 

 

 

Puberty Smells, Bells & Whistles Update: I found Instructions!

I found some INSTRUCTIONS!!!!!!!!

God I love Google.

Look at what my internet trawling discovered…..

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That’s right People.

Some instructions on how to address the onset of puberty AND its tailored for our Mini Male Munchkins with special and extra needs. I know, right? Celebration time.

Whooooo Hoooooo. [Sound of the champagne cork popping]

So excited that this is in part, the guide and the answer I was looking for.

I have ordered my copy and will let you know once it arrives if it is worth the hefty price tag.

EX.CITE.ED  Yes, Indeedy I am.

If you wish, you can order yours from Booktopia which I did (Australia) or visit Secret Girls’ Business direct.

And as the name suggests – yes. They have books for Special Girls’ too. Actually, they have 2.

Please still send me your nuggets of info about how you approached this topic with your child. Books are a fabulous guide however, nothing beats personal experience for me.

Lot of love everyone,

Neve xx

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.