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

Puberty Smells, Bells & Whistles

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Hey Mum, smell this! MG is standing there proudly with his arm held aloft and pointing to his armpit. Thinking it was a prank – ok, I’ll play along. Nose dive in, take a deep whiff and I almost pass out. WTF? MG stinks. Ripe and sour. Sweaty pong. He’s not yet 9.

Brain on FFwd. OMFG MG. It’s happening. Is it happening? Puberty what? Panic rises quickly into my throat and I swallow it down. How is it that my MG smells like the typical male putrid teenager on a hot, sweltering 40 degree day after an hour of sport?

I am not ready for this. This is my baby. My little boy. My mini munchkin….only; only he is not.

Banishing the fear to the background and swallowing down the urge to barf at the stench, I laugh with MG and we giggle about the stink. I mean seriously. If I don’t laugh, I’ll cry. I tell MG that was a good one and he tricked me well. I march him firmly to the shower and celebrate the fact that he can now use deodorant like his Dad.

Well done Mini Giant. You are growing up and on your way to becoming the man you are meant to be.

Except what is happening here?

 

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Everything normal for my MG? Check. Marched him off to his GP to ensure that it wasn’t abnormal or please no, precocious puberty (where puberty starts before age 8 in girls and age 9 for boys). Perfect health. His body is just ready to grow. I should be happy.

The signs of puberty are a fraction early so then why was I fearful? Because his body is changing, telling me he is changing and emotionally we are BOTH. NOT. READY.

Yet are we ever ready?

I’ve had the where do babies come from talk. I even purchased the book. I just haven’t broached the subject of puberty yet.

When we had the more detailed talk about babies, MG was 6. In his uniquely ASD special way he was interested in the process and the micro level mechanics of the information.

How does that work? Does it hurt? What if your wife says no? Why does that need to happen? How do you put it in? Why does it go hard? What happens to the blood when it leaves my head and goes to my penis? Will I faint and die? OMG MUMMY WILL I DIE? Does the blood go back to my heart? WILL I DIE? How many babies can a woman have? Why can’t I have one? Sheesh mate. You’re six. Chillax.

So am I ready for the puberty talk?

Hell no.

I struggled with the sex talk. Not because of the information. Not because I am uptight or shy. Not because I have hang ups about sex. But because my smart bunny asks me questions that I am trying to answer honestly, in an age appropriate way and that satisfies his deep and different modes of thinking. Something that is foreign to me.

I want to do this right for him.

 

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Got my homework ready but this book aimed at older boys…..

 

I want to celebrate the changes and for him to be proud of his growth. Not like my parents who tried to be all scientific but wound up projecting their Roman Catholic strict “sex-is-naughty-and-you-will-become-pregnant-if-you-so-much-as-look-at-a boy” issues.

I need to bridge the imbalance between his emotional immaturity and his physical changes whilst providing enough information to satisfy his intellect. All this without scaring the bejessus out of him or worse, embarrassing him. There is no book for that.

Of course, there are book’s that can guide me but not provide the much needed examples of scripts to employ when he asks me curly questions. In an attempt to understand, he’ll will throw me many curve balls. (Ha ha – ok no. No inappropriate pun intended). Like Emmit in the Lego movie, I need THE INSTRUCTIONS. I probably don’t but it would be a F of a lot easier if I did.

For now, we talk about hairs that will start growing in places. MG examines his bald skin searching for those elusive tuffs of fluff that signify he’s A Man. We talk about getting taller and stronger. We celebrate today as an almost 9 year old and I tell him how excited I am to meet the man he will become.

Seriously tho: I could really use those instructions ………

Neve xx

ps – this classic over-thinker did much research and has her beloved Stylish Chic Fashionista Advisor to the Stars, Mon_Rue_ to thank for pointing us in the direction of MooGoo. Shameless product plug. It is our preferred deodorant. It is age appropriate and contains no hidden nasties for young and developing skin.

GIVE AWAY TIME

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Whoo hoo. I’m giving away a Moo Goo deodorant to 10 lucky readers.

To win:

Follow @mynoctilucent on Instagram

and

 Share below some of your best nuggets of wisdom instructions on navigating the puberty journey with your ASD child.

Please submit your entry by August 10, 2017.