The cold hard truth

Well that last post was a bit of a doozy wasn’t it. Sorry about that, I think we can call that “the breaking point”. I guess the rather obvious subtext of it is that this shit is hard. Then we move into a holding pattern for a while until the next drama unfolds.

Life with a child with special needs – be they physical, medical, intellectual or all of the above – is bloody hard.

Everyone nod sagely at that. Offer a ripple of how amazing we are to rise to each day, an empathetic “I don’t know how you do it”, the occasional “God only gives you what you can handle” from which you should be grateful you walk away without multiple stab wounds from a splintery stick lined with rusty nails.

The most unrelenting part of it is the cold hard brutal truth that it never goes away. Every day this is what, for me, having a disabled child entails:

  • are you going to wake to a wet bed,
  • a random epic melt-down triggered by who knows what,
  • the daily battle to put clothes on,
  • discovering yet another dawn raid of the cupboard for inappropriate breakfast items which totally decimates the weekly shop you did to.the.dollar. for school lunches, afternoon teas and so on,
  • waking up at 3am when they’re trying to sneak in some Xbox,
  • realising they’ve padded next door, outside, in their pyjamas, at 6am and are just loitering around on the corner,
  • the ongoing issue of wiping and I’m not talking benches,
  • the complete incapacity and/or unwillingness to dry themselves after a shower. I now have a child with a man penis who still needs help (but doesn’t want it but can’t do it himself) getting dry after his shower,
  • navigating puberty with a moderate intellectual disability,
  • is that left foot rolling in again, no not really, oh yes it is, will it need a splint, do we need to have surgery again, we need to see the specialist again,
  • anxiety with a moderate intellectual disability,
  • how to occupy them beyond the realm of Xbox and stalking the neighbours,

and on it goes.

Then there are the big picture worries you basically ban yourself from thinking about – work placement, housing, relationships, a happy and fulfilling life.

Stuff just goes wrong with these kids. Their systems are compromised, they get sick, they get inexplicable ailments, they need surgeries and ongoing interventions and regular reviews. It is tiresome, exhausting and emotional (not to even mention the costs involved) to do this with different groups of people over and over again.

You find that you stop seeing their character and start focusing on the mechanics of it all – toileting, anxiety, boredom. It takes you by surprise when doctors, nurses, friends, neighbours all talk about your son so positively. About his sense of humour and gorgeous nature. Sometimes all I see is the fifty million questions asked over and over, the refusal to dry himself after his shower (now probably the cause of the cellulitis. I KNOW), the constant falling asleep on the lounge and then agro lashing out when I try to move him on to bed and so on and so forth.

It takes other people getting upset at seeing your child have bloods done to remind you it’s OK to feel about all this.

This is what it’s like to have a child with special needs.

The way our society works though does not make any allowance for this reality. We need me to be working to be able to feed, clothe and educate our children. We need two incomes to be able to give them experiences and to be able to cope when and if something goes wrong.

There’s no way you can have two adults working when you have a child with special needs. If you do then, well, RESPEK.

So then the self-flagellation begins – he was your first so why did you have any more, you knew it’d be expensive having lots of kids so why’d you have so many. THIS IS YOUR BED.

But then I think we did not choose for Oscar to have a dodgy chromosome, cerebral palsy, a moderate intellectual disability or a penchant for foods high in saturated fats to be consumed before dawn. So why then are we, why is HE, punished for it?

Services and support for the child AND the parents is imperative. I have it because I have a coherent voice, I tend to like being shouty, a clanging symbol. But for every one of me there are 1,000 others without a voice and it’s just not good enough.

This post wasn’t meant to be about the importance of the National Disability Insurance Scheme but it seems important to mention it here. We, as a nation, are at a point where we can truly ensure no one gets left behind. Where for something as simple as splints for Oscar’s legs do not involve me having to go to multiple agencies with my hands out saying, “please sir, can I have some more”.

I escaped the hospital earlier this week with Chef to go to the Sydney rally to support the NDIS. Our Prime Minister was there, I saw her and her remarkably cute security protocol (well played Julia, well played) for the first time ever.

I don’t care what your political leanings are, but this woman, despite every spike laid on the road before her, has put the NDIS on the table, she has made it happen (from next year in fact). It was flagged by Menzies as a necessity FORTY years ago and she, SHE, has been the one to make it happen. I can’t help thinking, ‘trust it to take a woman to make this happen.’

So yeah, my life is quite a stressful one. I am feeling it keenly at the moment and it does not shine a light on the best parts of my character. Don’t hold it against me.

I know many of you want to help us out, please be assured that being here, reading this, getting it, holding it in your hearts, standing up for someone or fighting for what is right for people whose voice is small or broken is enough. It is enough.

Onward.

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  • http://www.singularinsanity.com Dorothy @ Singular Insanity

    Here, reading…. I don’t know how you, how anyone does it. Huge respect from me, Kim.

  • Denyse

    Hi Kim….bloody cold in Mona Vale tonight? Must be just the pits staying in a ward …I’d hate to be sharing space too. Anyway..I’m here. I care. I can listen. Sometimes when I’ve railed against being married to a very very unwell spouse for more than 30 years I actually pull back from any emotional attachment because it is too painful to admit what I have lost in my relationship & my future …like I said in My DPCon speech “this is not the retirement I had even imagined” So I understand how you can seem like you stay “cool” about Oscar’s many different compromising conditions & procedures because if you admitted the toll they take and gave into the realizations of the enorminity of it all then maybe “you” would not be able to do what you can to support him
    Sorry… Not coming across too psych babble I hope. Whatever you do you know you have friends who might just have an inkling of understanding.
    Bloody glad Julia got her act together on National Disability Scheme. Hope your night isn’t tooooo drawn out D xx
    Denyse recently posted..Schools’ Week. Day 3. Books I Read To Kids.

  • http://www.farmerswifey.com Farmers Wifey

    Sweetie, I’ll just send you a big hug and a nod of some understanding as I am an auntie to a very special 18 year old nephew…my brother could be your kindred spirit because alot of the things you wrote here applies to him..

    It breaks my heart to see my brother struggling with his son, it takes a very special parent and I think you are one xoxo

  • trash

    Witness.

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

    Spot. The fuck. On. And beautifully expressed.
    Kathy recently posted..An update for your Tuesday

  • http://www.lifeanddandelions.com Annieb25

    So much respect for you Kim. So much. x
    Annieb25 recently posted..I want to crave you …

  • http://www.baby-mac.com BabyMacBeth

    I’m here and you bet your arse I am nodding sagely.

    Surely we can do something? ANYTHING? Let me know ploise x
    BabyMacBeth recently posted..Solving the big issues: The saucy one

  • Teah Wood

    No response necessary…you have said it all.

    Just know I am hugging.

  • http://www.livinginthekingdomoftoomuch.com librarygirl

    Wonderful post. I have enormous respect and admiration for you. There was a story on the radio last night stating that TWENTY PERCENT of the population has some form of disability. We are ignoring the ongoing needs/marginalising a fifth of the population. It is WRONG.
    librarygirl recently posted..shawl: I wore it

  • Pia

    Dear Kim,

    You may not recall me but I was at school with you and swam with Jac, and her sister Kirilly. I have read your website for many years as a mother of a “unique child” I feel some of what you are going thru and can imagine with ease the rest……and whilst he goes to main stream school, and life is some what less complicated if that is the right word, I have lost count of the OT’s/Speeches/Autism specialist? physio’s?/Ped’s we have visited and the high cost involved. I too have budgeted down to the last $, especially last week when his one Dr’s appoint cost $1,200 oh did I mention that Medicare told me the scheduled fee was only $700??? I have almost cried when I have found “treats” bought after budgeting down to the cent have been eaten, when under the state run specialist team here I have been speechless when after trying him on new meds (with one of the highest Classifications on them) the Ped, leaves and simply forgets to assign me a new DR, or when I wait 2 years to see a a new DR. How much easier would it be if only a million $ came into our hands…..

    Some days I too feel like I am one step away from Greylands (mental hospital here in WA), we have daily melt downs of the feel of school clothes, cannot eat certain food as it taste slimy,…… some days I feel I have not one elephant sitting on my chest but a hurd! I am also to scerd to think about 10 years time or god forbid if I am not there to demand help fro him in class or make sure he learns to be good at something he can use later on life rather than just his quirky brain….

    Kim, you are not alone keep on fighting for the NDIS…. ithe changes it will help bring at home will be worth teh figh

    x

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

      Oh Pia, of course I remember you and I shake my head and fists at the sky that this is happening.

  • http://re-inventingfashion.blogspot.com/ Jody Pearl

    I’ve stood on the outside watching my friend parent a child with a severe disability, while parenting 2 other children and endeavoring to maintain a relationship with her husband – and I learnt very quickly that on the outside was where she needed me….. so she had somewhere to go, somewhere she could be herself, somewhere she wouldn’t be judged, ignored, alienated…somewhere she could just be and feel safe sharing the bullshit she had to wade through on a daily basis, knowing I couldn’t do a thing to help her win those battles other than be interested and listen.

    If I was to offer any advice it would be that next time you see another human being with a child that obviously has a disability that you walk up and say hello.
    Jody Pearl recently posted..Latest REinvention – The Boobs & Bottom Jumper

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

      My friends are my sanity. My Tough Mudder partner came up last night with a chai and we just sat and talked shit for half an hour and that, that is oxygen for my soul.

  • http://www.dearfii.com fi

    you are awesomepants dear lady

  • Lara

    Hi, what wise words from you all! Kim, what amazes me is not only how you rise to the multiple challenges each day brings but how you look for fun and find ways to enjoy life despite your incredibly packed schedule and the difficulties you’ve mentioned. I am just in awe, also because you still have time to be interested in others. And Oscar is very special, in the best way as well as in challenging ways. When we visit he often finds ways to reach out and connect when it should be the other way around, and his beautiful nature shines through. Hope you get out of there soon xx

  • http://www.travellersyarn.wordpress.com Ingrid

    I’m impressed that you are able to hold it together to write a coherent political argument. Good luck – I hope that he gets better.
    Ingrid recently posted..I like ‘em big

  • http://www.my-speck.com rakster

    f*ing great post Kim.

    Not sure how you have the energy but you’re out there changing the world – in small and big ways.
    rakster recently posted..Books

  • Jane

    You’ve just found the word I was groping for. Thank you.

  • http://www.browneyedmystic.wordpress.com Pooja

    I have not been there, and I don’t know how it feels. I can only empathise with you. Your courage is shiny, bold. It’s magical. It’s monumental. And your love? It’s beyond words.

    Love,
    Pooja

  • http://arthousehomelife.blogspot.com.au alison

    Well said Kim.

    My amazing sister is single mum to a beautiful little girl with one teeny eensy weensy inverted duplicated chromosome (Chromosome 15, in case you were wondering).

    My niece is 11 years old, can’t speak, isn’t toilet trained, doesn’t communicate except with beautiful smiles and hugs. Some days she can use a spoon, some days she can’t. She has seizures and lives on a cocktail of medication that’s constantly being tweaked. She pulls things out of cupboards and strips off her nappies walking the contents into the carpet almost daily. Her body has reached adolescence already and it won’t be long before she has her periods.

    She’s hard work. It’s hard work, for the rest of both of their lives.

    An NDIS is the least we can do people. Absolutely.

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