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.

Autism & Me - 1 Bloggingfundamentals

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Obsessed with shoes, I am the classic over-thinker trying to get my balance right in a world that is filled with expectations.

I’ve been labeled driven and borderline neurotic, fun, crazy and focused. Having left the management consulting world behind, the newest addition to my collection of labels is: Mum.

Now a full time Mum to a gorgeous boy and a wife to the love of my life, both these intelligent and quirky males are part of Autism Spectrum. In addition to our 2 nutbag, nosey and noisey hairy hounds, they all teach me daily what patience, love and understanding is.

Generous, Mother, Cranky, Wife, Wise, Smart Arse, Listener, Anxious, Strong, Emotional, Clinical Advocate, Funny, Known-to-Love-A-Drink.

These are just some of my labels.

I am all these things and so much more.

Just like you.

2 Comments Leave a comment

  1. Wow this is lovely for you to be letting us in on your world. We have a 12 year old boy just recently diagnosed and we are on the up and down journey of good days and bad. But we have a motto in our house and its every day is a new day with nothing carried over from the day before. We have found that this works for our son as he knows that he can move forward without the threat of something that has caused him to get anxious or angry and react in way that is considered wrong but is really him not being able to use the words to say how he feels. This is what we are working on at the moment techniques like breathing etc when he feels ready to explode to help bring him back into a calmer spot. He is an amazing boy and we are so proud of him and we do not want to change him as he is who he is and we love him being him but we do want him to function well in this world that we live in so that he can have a happier life. It is our job as his parents to learn and grow with him and teach him skills to survive out there.

    Thanks again for sharing Lisa

    • Great comment Lisa. I really love and respect your family motto that every day is a new beginning. Positive and full of potential. And that’s what every child needs to hear from their family isn’t it! That their parents love them unconditionally first and they believe in them, regardless of the diagnosis. We use a similar script in our Casa that “everything can be fixed” (in some form or another) and “let’s start again” when things go awry. I’ve also found that having water bottles everywhere around the house – with straws – helps diffuse the anxiety and build up. The simple action of drinking water, sipping, has a positive physical impact that quells the potential explosion. Strange hey, (nah – there is science behind it) and it works.

      On another note: Maybe you are on approach to puberty with your son? You may like the “Smells, Bells & Whistles” post. If you read it, drop me a line. I’ll need your tips and tricks for addressing that conversation as my Mini Giant is showing the signs………eeeekkk!

      Cheers and thanks for commenting,
      Neve xx

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