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.

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  • http://saltycrunchybitterfresh.blogspot.com/ Kathy

    Happy, happy fifteenth (WTF?!) birthday, Oscar! I hope it’s an outstanding day!

    (Special needs teenagers. Yep. Just when I thought I had a handle on what I was doing, haha.)

    • http://www.allconsuming.com.au allconsuming

      EXACTLY. Parenting a special needs teen is like they’ve just arrived all over again. Basically everything we’d learned through childhood has just been thrown out the window and we’re freefalling in a new space with no guidelines or rule books. Yeah, awesome. #notreally

  • http://www.mamamarmalade.com MamaMarmalade

    Happy birthday Oscar!
    Kim, you have done a fine job with your lovely boy. You are so strong and I am so in awe of how you keep getting back up no matter what life throws at you. Oscar (and the rest of your boys), but particularly Oscar, are so lucky they have you as their Mum.

    • http://www.allconsuming.com.au allconsuming

      Aww, thanks bloss.

  • http://blackbird17.blogspot.com blackbird

    Happy day to a fine young man.
    Not a bad bone in his body, that Oscar. (That’s what we say over here.)
    I’m proud to know him.

    • http://www.allconsuming.com.au allconsuming

      Not a bad bone. So true. Wow. So very very true.

  • http://dancingwithfrogs.wordpress.com Frogdancer

    You know some of that freedom stuff? It also comes with being the oldest. Tom21 gets exasperated when he sees Evan16 blithely going off doing things that Tom21 had to beg and plead for at his age.

    Happy birthday to your beautiful boy. I don’t often comment here but I’m a lurker. (I still remember that fabulous restaurant you picked out when I came up to Sydney and we all had the blogmeet. First time I had sashimi!)

    • http://www.allconsuming.com.au allconsuming

      Oh my goodness – I remember that night! In the golden days of blogging. And doesn’t it- I know Felix gets so cross when the little boys get to do stuff/get stuff that he had to wait for. Slipping standards? Exhaustion? Hindsight? All three? But yes, you are so right.

  • http://www.edenriley.com edenland

    Exquisite, exquisite words.

    He’s perfect.

  • http://melody-biglittlesister.blogspot.com Melody

    Oscar is fortunate to have such fine parents. You have done a fabulous job, not only raising a young man but with another three boys. Sheesh. Hope Oscar had a great 15th birthday!

    • http://www.allconsuming.com.au allconsuming

      He did, although his main request – to have a sleepover at Josh’s house – has yet to even be talked about with Josh’s mum let alone actioned. Must get on to that. But there was dinner out at our local Japanese so he was as happy as a clam.

  • FunMumX3

    Could write the same post myself except: girl, 17, trisomy 21 (down syndrome), girly likes & dislikes. The rest? Nailed it! Thanks for making my normal feel normal :)

    • http://www.allconsuming.com.au allconsuming

      Oh Kerri – knowing we’re not alone, that our crazy normal is normal is so so important.

  • http://www.liveandbreathe.com.au Linda

    The never ending parenting worry must be SO HARD to control and contain when it comes to parenting special needs kids. But you must be doing something right dude, for Oscar to crave that independence. Happy Birthday Oscar, (and happy 28th this year Kimmy) xx

  • http://www.liveandbreathe.com.au Linda

    I mean happy 27th (12 + 15) sorry, my brain is jangly this week xx

  • Megan

    What a beautiful post. He got that heart as big as an ocean from you. Clearly.

    • http://www.allconsuming.com.au allconsuming

      I hadn’t really thought of that. I kind of look at him and see all of my dodgy genetic traits in hyperdrive.

  • http://www.dailytrifles.wordpress.com Reemski

    Happy birthday to Oscar, and happy fifteen years of parenting to you and Chef. Two of the best parents I’ve ever come across. xx

    • http://www.allconsuming.com.au allconsuming

      OH man, dude, I do so many things wrong! (But thank you.)

  • http://www.kirstenjohnstone.com kirsten

    A hearty Happy Birthday to Oscar!
    Oscar is one lucky 15 year old to have a mum like you.
    Beautiful words.

    • http://www.allconsuming.com.au allconsuming

      Thanks lovely, it’s not without its challenges, I’ll say that.

  • http://littlelioness.net Fiona

    Happy Birthday Oscar!!!!!!

  • http://www.msmidge.blogspot.com.au Ms Midge

    Beautiful post! I have worked with people with disabilities for 18 years now, and still enjoy it immensely. These precious residents I’ve come to know have taught me so much and continue to every single shift I work.

    Happy 15th birthday to your beautiful son!

    • http://www.allconsuming.com.au allconsuming

      And we are indebted to people like you. Every single person at Oscar’s School of Awesome lives and breathes those kids and for that I will be eternally grateful. To see how far Oscar has come in the 2 years his been there is breath-taking.

  • http://www.adoseofdannie.com Dannie (A Dose of Dannie)

    You are and have been doing a bang up job! my hat goes off to you hon xxxHappy Birthday to you dear Oscar! You know your mum is friggen just awesome ! The words are just beautiful,touching and i just wiped a tear from my eye xxx

  • http://www.theiloveyousong.blogspot.com Suz

    You just gave me a big gift Kim….”for me the greatest challenge is not to just parent the disability” …..I feel this so deeply over here in autism land. Thank you. Happy birthday beautiful boy and love to your amazing mama xxx

  • http://Carlyfindlay.blogspot.com Carly Findlay

    Beautiful post Kim! What challenges you’ve had, but what strength you’ve gained.
    Happy birthday to your amazing 15 year old. You must be so proud.

    • http://www.allconsuming.com.au allconsuming

      Thanks so much Carly.

  • http://www.kerrisackville.com Kerri Sackville

    No matter how agonisingly hard it is to raise challenging kids, we still love the little buggers to death. Beautiful post. x

  • http://Www.desireempire.com Desire Empire

    He’s lucky to have you and visa versa.
    Carolyn

  • http://www.brightandprecious.com Deb @ Bright and Precious

    Beautiful words. Beautiful mother you are to your beautiful young man.

  • http://Keepingupwiththeholsbys Danielle

    Yep, he looks perfect from here, and you?
    You ate remarkably wondrous.
    Happy fifteen to you both x

  • http://www.kellyexeter.com.au Kelly Exeter

    Beautiful post Kim. Wish I had something awesomely meaningful to add but you’ve already said it all.

  • http://Www.siximpossiblethings.net jac

    I have a 15 month old who has just suddenly fallen on her bum at my feet as she tries to climb a step. Fifteen years? Milestone. Sashimi for all. xx

    • http://www.allconsuming.com.au allconsuming

      15 months is THE BEST. Roll around with that.

  • http://www.whatsarahdidnext.com What Sarah Did Next

    I love this post. As a parent of a special needs child myself, I’ve always been a believer in celebrating what they CAN do, not dwelling on what they CAN’T. Congratulations to you all and happy birthday, Oscar! xx

    • http://www.allconsuming.com.au allconsuming

      I went to a formal assessment once and when they asked me what I hoped to get from the day I told them absolutely nothing. They were so shocked and I was shocked at my ballsy-ness. But I explained to them everything they’d tell me would highlight a deficit in Oscar, a focus on what he wasn’t achieving not what he could and that that did nothing to help anyone except their spreadsheets. I KNOW. I am still proud of that day.

  • paola

    Happy day Ogga boy! You are surrounded by love, and you show it in your big smile.

  • http://magnetoboldtoo.com Kelley @ magnetoboldtoo

    Pretty much cut and paste for Boo.

    Happy birthday Oscar, my infuriating but wonderful boy turns 15 this year too. I wish you guys could hang out while your mum and I hover around the edges and you can roll your eyes at us.

    X

    • http://www.allconsuming.com.au allconsuming

      This teenager + special needs malarkey ain’t no picnic.

  • Eden’s Mum

    Happy 15th Birthday Oscar…… and Kim this was a magnificent post, inspiring words, like this quote ” the greatest challenge is to not just parent the disability “, Kim its hard enough being a parent WITHOUT the added challenges you and your husband have. Reading of your own bouts of ill health and trips to Hospital this year, I am gob smacked as how you are getting through each day, let alone coping with the challenges you have. I am in awe of you, just sayin, thats all. Love and hugs and Go Softly…xxxxx

  • http://Www.maryandlil.blogspot.com Nicole

    Thank you so much for this post. I found your blog through Edenland. My daughter is 6. She has a rare chromosome disorder on chromosome 1. Sometimes I feel all alone. I worry about her future and what things will be like. It is so nice to hear this perspective. These kids are so special and it is good to read others stories and the inspiration they bring. Thank you xxx

    • http://www.allconsuming.com.au allconsuming

      Oh Nicole, you are so so SO not alone. Feel free to email me to whinge, rant or ask anything. Also, have you heard of Unique? It’s a rare genetic support group in the UK but hooks up families with similar chromosome disorders around the world.

  • http://landcare.blogspot.com/ Kirsty@BowerbirdBlue

    such beautiful thoughts, I love your parenting spirit

    • http://www.allconsuming.com.au allconsuming

      Thank you so much. My parenting spirit is variable and sometimes very shouty, but we seem to all survive it.

  • http://foxslane.blogspot.com.au Kate

    Happy, happy birthday you guys!
    What a wonderful post.
    What a lucky kid. x

  • http://www.seanasmith.com Seana Smith

    Well said, well said and thrice well said! My Giant Teen is about to turn 16 and although I never blog about him, I must and shall just this once. It’s so good to see the person not the disability.. and really how much more able than disabled are most kids anyway? I love ‘differently abled’ if we must.

    Anyway, one day I’d love to have a natter in person. When IT ALL has settled down for you, jeez what a time you’ve been having. Glad you could celebrate your 15 years as a mum and his 15 years as your son, and that you got to see the PM too.

    • http://www.allconsuming.com.au allconsuming

      The older it gets the harder it becomes – I think this is because they (as in writing about kids in general) move from just being age-related things to reflecting on someone’s personality. Privacy comes to the fore.

      But it needs to be written about because so many of us feel like we’re all alone in the trials and tribulations of parenting these ‘kids’.

  • http://mylittledrummerboys.blogspot.com.au Trish

    Oh Kim , poignant and beautiful words from a mother who rose to the challenge to unconditionally love this young fellow to be the best he can be and spur him onwards !

  • Mrs WOOG

    Nothing. I got nothing. But a million best wishes x

  • http://www.goinganyway.net Jill

    Hiya, looks like our lovelies share a birthday! We just hit double digits, but 15!!! That’s amazing. Well done to both of you.

    (And I love the shouty spirit!)

  • http://www.thehousethatambuilt.com A-Ma

    What a lucky, lucky boy he is to have you as his Mum. Happy 15th to your beautiful son. A-M xx

  • http://www.maxabellaloves.blogspot.com Maxabella

    I think these words: “the greatest challenge is to not just parent the disability” are some of the finest I have ever read about parenting, Kim. I mean it. There is such tremendous love right there. x

  • http://www.maxabellaloves.blogspot.com Maxabella

    PS – And yes, 12 I think!! x

  • Kellie

    Thank you for your beautiful words.
    My baby will shortly be turning 5….she doesn’t ‘fit’ a diagnosis but shows traits of cerebal palsy, has severe physical and intellectual disabilities and global developmental delay. She has not changed since she was 5 months old. She is like a big baby. She has no speech, she cannot self feed, she doesn’t seem to know who I am.
    I’m really really scared. Some days it is hard to just accept that it is what it is.
    Thank you again, I hope your beautiful boy had a wonderful birthday xxx

  • http://www.theveggiemama.com veggie mama

    I think you’re fucking rad. Oscar too. I’d like to meet all your brood one day! xx