Tag Archives: parenting

Fifteen

Somehow we went from this:

Apparently I was 12 when I gave birth

Apparently I was 12 when I gave birth

Oscar at 1 month old

Oscar at 1 month old

To this:

Fine specimen of a teenager

Fine specimen of a teenager

Oscar was 10 days old when they told us he had a rare genetic disorder. We were having cuddles with him, something so precious in the Neonatal Intensive Care Unit, and I looked down at him thinking all the while, “I can’t fix this, this is in every cell, every structure, every drop of blood coursing through your veins”. I looked at the doctor and said, “But he’s perfect”.

There have been plenty of moments since then where I have felt just as hopeless.

The nursing educator of the unit, a wondrous woman, told me with a steely edge in her voice which meant business that if all of us had our genes tested it’d throw up some pretty interesting findings and to just raise him and treat him just as we would did we not know about his dodgy chromosome four.

And here we all stand, 15 years down. It’s so easy to look at Oscar – and indeed any person with special needs or a disability – as a series of deficits, a catalogue of failed milestones, of endless worry. But I’m still not sure how that actually benefits Oscar.

So who is this boy of mine?

His best mate is Josh.

He loves WWE wrestling, AFL, soccer, playing xbox and listening to music.

He is outrageously nosey and social. He knows all our neighbours – some of which I still haven’t met.

He has a heart as big as an ocean.

He’s good on the tooth.

 

For me, the greatest challenge is to not just parent the disability. It is so easy to fall into the functional – trying to bed down routines can take (and still are) years, the doctor appointments, the therapies, the assessments – that I forget the teenager wanting to listen to his music, hang out with his friends and flex the freedom I so easily bestow to his younger brothers.

How do you loosen the reigns when the potential for disaster is so great?

I know two families whose disabled children are now in their 20s and they tell me they’ve just had their worst year ever, both due to issues of mental health. In the Christmas break I witnessed Oscar having what I thought were fairly obvious anxiety attacks but he can’t articulate it and I don’t want to put words in his mouth.

Mental health issues and an intellectual disability. How you like them apples?

But you know what, it is what it is.

I have to look to Oscar – is he happy, is he stimulated, does he feel like a part of something, does he feel loved, safe and secure – and take my cues from him. And when I do that? I think we’re all doing ok.

In this house we might fall down seven times but we rise up eight.

Manchild

Ogga

 

Onward.


Inside the fishbowl

I was at a lunch on Friday put on by Oscar’s School of Awesome to celebrate women with a particular nod to those of us who are mother’s to kids with dodgy chromosomes or some other label that indicates their load will be a little heavier and wonkier than most.

It’s not something I dwell on that much any more but Friday made me realise that is simply because I’m now quite used to wearing the coat that is being mum to a kid with special needs. It was really nice being in a room packed with (295 no less) women and feeling celebrated and appreciated. It was not something I had expected.

Our Principal talked about a series of short films made by students two years ago and the sister project of a documentary following the students making the films. I know, SO post-modern. (I don’t even know what that means.) She described how, in the doco, families of the kids were also interviewed and that their honesty in what it was to have a child with special needs took her breath away. She explained that while she has worked in special education for more than 20 years it was this that truly showed her she (nor anyone else who does not have a child with a disability) will never ever understand what it is to be the parent of a disabled child. She then hijacked a staff meeting and made all the staff watch it. All the wondrous, committed, beautiful staff. She said the silence in the room was immense.

I can not tell you how validating that was to hear.

It explains so much. Why she is such a tireless advocate for our kids. Why every single member of staff at the school live and breath our kids and how to help them be the best they can be. Why that place is a place of daily miracles.

One of the things that came from the doco was the concept of being in a fishbowl, that you can swim around and see out and still be a part of everything but there is always this barrier between you and the rest of the world. Similarly people can see in and engage with you but still that barrier is there.

It is such a good way of describing my life since becoming Oscar’s mum.

I remember when we were first told of his diagnosis and internally railing against it. I did NOT want this for my life. I was NOT going to be one of those women, those mothers you see with a disabled child – you know the ones, they’re always so angry, and either grossly overweight or carnie thin, with bad hair, outdated make-up, cheap clothes and did I mention the angry?

I know, even I would have smacked myself back then.

But here I am, swimming around that god-damned fish bowl, regularly head-butting the glass, grossly overweight, no make-up, cheap clothes, dubious hair (it needs a cut) and on occasion very very angry.

I cried on Friday.

And then life went on.

Oscar went over to a friend’s place today to hang out. A first.

His voice started breaking this weekend.

He made me laugh. He made me cranky. He gave me kisses and cuddles. He asked me many questions many times over.

My life will never ever be as I imagined it. Nor his.

And that is OK.

 

Onward.


Two important questions

Having a child with special needs from Kim at allconsuming on Vimeo.

Just mixing it up with a wee video for you to watch. I KNOW, I’m so cutting edge.

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