Tag Archives: special needs

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.


Team Oscar: the year in review

I don’t think I could exaggerate what a tough start it was to 2012 for Oscar. Watching New Years Eve fireworks from a Mona Vale Hospital bed was not on anyone’s agenda and the fact we were back there for 12 days in April/May was a curve ball that took both of us months to recover from.

Oscar

Do you remember the April/May stay? It was really the beginning of my downfall into the abyss that is chronic depression and anxiety. I keep going back to those posts because now? A mere seven months later? I am not there anymore and indeed am so far from that place I need to keep checking it ever happened at all.

But this year has been challenging. Parenting a 14 year old with an intellectual disability is HARD. There’s anger and energy – physical, emotional – that needs to be channelled somewhere, SOMEHOW, but as to where and how is something every parent of a teenager with a disability wrestles with ever.single.day.

At Oscar’s School of Awesome presentation day last week the Principal spoke of exactly that. How once these kids hit high school you basically throw out all the strategies you used in early intervention and primary. It is still about communication and relating to others and all the rest but as a teenager? There is so much more at stake. Friendships come centre stage, how do you negotiate those relationships as well as all the hormones. There is violence and aggression. My GOD when Oscar loses it… the little guys are SCARED.

I mostly handle it badly. I mean, how do you treat someone like a teenager when they are essentially still a kid? How can I give him responsibility and rights and privileges when he can’t/won’t dry himself properly out of the shower. When every.single.night you have to oversee the going to bed routine or face a wet bed in the morning? When he can’t do up his school shorts or tie his laces?

I have had a lot of quiet despair this year about being Oscar’s mum. Knowing he’s at a school which comprehensively understands that makes it all a little easier.

Last weekend Oscar went to the Ignation Children’s Holiday Camp at Riverview. Four days, 30 kids with a physical or intellectual disability aged between 5 to 15. Free to families and sponsored by the Sony Foundation. Sometimes things come your way that restore your belief in the human condition to be nice to each other.

The most remarkable and heart-exploding part of all this is that students who have just finished Year 12 volunteer to be a part of it and are buddied with one of the kids for their entire stay. I’m presuming they’d already gone off and been carefree foolish teenagers on schoolies but I suspect these young adults are a bit of a special breed. Let’s say hello to Tom:

Oscar and Tom

Oscar and Tom

Tom just happened to be Head Boy at Riverview. He wants to be a doctor. Our HSC (school leaving results) came out today and he was in the honour’s list for five subjects. Yeah, Tom is probably going to be cure cancer, become Prime Minister and establish world peace. (Can you imagine being his parents. Dear GOD if they are not so proud of him their hearts explode daily… although I do wonder if he puts his dirty washing in the laundry and is, at least on occasion, a complete shit to his little brother.)

For four days he and Oscar hung out. They went on a ferry, which Oscar got to steer. They went to the aquarium, seemed to swim for about 10 hours a day, went for a ride on a Harley Davidson, dressed up as Batman for a disco and myriad other things. They made it to the nightly news:

 

Oscar came home with a scrapbook Tom had compiled for him which ended in a letter he wrote to us. Dude is SO going to be a doctor with THAT handwriting. This is a snippet:

I have discovered much about myself over the last few days and in Oscar I have seen the raw beauty of the human spirit.

From the roughest and most challenging of starts, 2012 came good.

 

Onward.

 


Thin line

I dumped my brain on here the last few days. I haven’t done that in a while, I try not to. It makes people feel uncomfortable. It makes me feel weird.

I want people to understand that the little things each day shit me just like the next person but I also want none of us to forget that while we bitch about picking the slow queue again in the post office or the idiot driver who pulls left to turn right (what the FUCK is wrong with people) there are so many bigger fish to fry.

Sure, I spend a large portion of my day trying to ignore the worries and stresses I have about Oscar.

Sure I, as a mother, spend an inordinate amount of time worrying about my boys, particularly Felix as he hits high school and enters a decade of becoming a man all while negotiating puberty, school work, who he wants to be, believing in himself, becoming more responsible, comprehending consequences on a far grander scale that what happens if you flog your brother again, having fun.

I didn’t really have fun as a teenager, my life was a pretty intense one with mum working her arse off and dad being absent but expectant all at the same time. When it all went pear shaped one of my aunts told me I had to grow up now, be responsible for mum, to be sensible and to help. Having fun and being a ‘typical teenager’ doesn’t really come into action when someone says that to you when you’re 11. I was the good Christian Girl going to not one but THREE youth fellowships (really covering all bases) and while it truly did get me through a lot of my teenage rage the pay off was guilt. I look back and think much of my adolescence was spent holding my breath. For the next bad thing to happen, for not being good enough, for letting people down.

Where do these emotions come from? I think they largely come from self, I can see it in Felix, but they are then compounded by external factors.

Fast forward a few years.

Fast forward to now.

I just can’t shake this feeling that I have done it all wrong. I mean, who the hell at almost 40 lives with their mother? Who at almost 40 has to ask for a hand-out from their in-laws to pay for car repairs? Who at almost 40 reduces three of their children’s bank accounts to zero to pay for car registration?

 

I’m doing it all wrong.

 

Where did I imagine my life to be at this stage?

Well, not living rent-free with my mother for one.

Not living pay-packet to pay-packet for another.

Not having to accept charity from friends.

 

Someone said to me the other day that accepting charity from others, help from people is about being humble and that having humility is the hardest virtue to learn.

 

In the last two weeks people have:

– looked after and cared for my children unconditionally

– picked up my kids from school and pre-school and looked after them for me without question

– texted me to say they’re having my kid over for a play, no discussion entered into (so so good)

– dropped off food parcels for my family including homemade dessert

– dropped off food parcels for me, to me, in the hospital

– brought me chai lattes at the hospital and hung out to talk shit and make me laugh

– taken my kids to and from footy practice

– dropped off a toiletries and cleaning products care package – anonymously. With one of those double Cadbury Family chocolate blocks in it. That I’ve hidden. And won’t be sharing. Maybe.

– sent us a crate of Gourmet Dinner Service meals that I keep looking at and bursting into spontaneous tears over. Because re-entry into family life after 12 days at hospital is just as hard, in some respects, as 12 days in hospital.

– sent me texts and tweets and Facebook shout-outs telling me you’re thinking of us, willing us a swift trip home

 

I have been humbled by all of it. Blown Away. Driven to tears at people’s love for us, for me. Bolstered by people’s generosity of heart and spirit.

I know we are blessed, that I am blessed to have a world so full of love and friendship. Plenty have pointed out to me they wish they had family and friends to help them out in times of need (subtext I am so lucky) and they need not fear me not realising, appreciating and being infinitely grateful to have so many holding on tight to the safety net under me, ready to catch me as I fall.

I know everyone has wanted to do this because I know when I see a friend struggling I want to do something, anything to ease their burden just a little.  Sometimes it’s words, sometimes something I’ve made, sometimes my hilarious company. (Remember when I was funny?)

 

So why is it sitting so uncomfortably with me?

Somehow all this makes me feel like I’ve failed.

Having to accept help is about having failed, of not being able to manage, of not coping.

I feel I’ve let everyone down.

That I have done it all wrong.

There are so SO many should haves swirling around in my head.

 

We have some family friends who are the most beautiful people in the world, but bad things happen to them all the time – a child off the rails, poor health, financial stress. There is always a feeling of unfairness when they are talked about, that they don’t deserve all this, why does it happen to them?

I do NOT want to be that family people talk about.

And yet I totally know we are.

I DO NOT want to be the sympathy card. The “Poor Kim”.

SO I just want you all to know I won’t let you down.

I will try harder.

You will not have to keep picking me up  or carrying me.

I will not let you down.

I will not fail.

 

Onward.

 

 


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.


Day 10


Yesterday was bone and CT scans and a drug reaction.

Today was a new cannula.

Getting a cannula – hereto known as a cuntula – into a kid with bad veins trumps pretty much everything.

Sure letting a kid die from an infection is negligent but getting a cuntula in is cruel.

 

I do the tough love thing for about 80 per cent of it because Oscar’s protests are loud and – at 68kg – now quite physical. The kid can make quite the attempt to flee.

The other 20 per cent I tell him what a champion he is and that yes it hurts but it will soon be over and how brave he is. All done with the internal monologue of DON’TCRY DON’TCRY DON’TCRY.

I don’t know, maybe it was because it was Day 10, maybe it was because it took a couple of goes and eventually had to go somewhere there hadn’t been any numbing gel or maybe just because it sucks but I came a bit undone after this round.

When you do this often enough you do go onto auto-pilot. A friend was here the other day when there was a very poor attempt at taking bloods. Her reaction made me realise, remember, that this is a big deal, that it is traumatic, that it really is shitty.

 

Mum arrived just after it was done giving me time to flee for just an hour.

I got in the car, rolled a cheeseburger and chicken and cheese because if there was ever a time for comfort eating this was it.

The eyes were damp and my heart was still racing.

I could feel the shell cracking. Fast.

I got home, discovered we’d run out of toilet paper and washing powder, that a friend from Grover’s pre-school had not only made the boys a curry last night but also apple crumble. She made my boys apple crumble.

Generosity of heart is all around me.

 

We missed an appointment on Monday at Sydney Children’s so I had to email and fix that. I asked them about seeing the orthopaedic surgeon who did Oscar’s legs in 2010 at outpatients because we can’t afford to see him privately. (The reason I hadn’t made that follow-up appointment with him after the first incident and which if I had may well have seen us not end up back here.)

I also expressed my concern about Oscar’s left foot and that it is starting to return to the position it was before surgery and that I think he may need an AFO (splint) for that leg at least – and that we need to do that through the hospital too as there’s no way we could afford to do it privately.

We’re now four months behind in our private health insurance payments.

I’m getting really adept at this hand-out, “please sir can I have some more” routine.

Our awesome contact at Children’s got back to me, as did the person he’s referred me to re appointments with the ortho and re splints.

That’s when I just threw my phone down and just gave in to the big heaving sobs of sadness and rage.

We can see him that way but only on this day, there’s a wait-list for AFOs at the hospital so maybe approach our contact at the Cerebral Palsy alliance and then they can put us in touch with a funding body to access to then get an AFO through them but we could do it through the hospital but but but…

E-FUCKING-NOUGH.

I still have to get a new referral for Oscar to see a paediatric endocrinologist as the one we were referred to is no longer there.

I still need to reconnect with The Cerebral Palsy Alliance to get a speech therapist back on board so we can be eligible for a grant to trial a speech device even though we’re already talking to the technology team at CPA.

You want to know what it’s like to have a child with special needs?

Relentless.
Constant worry.
NOTHING being easy – be that accessing services, finding schools, ignoring the idiots

Having a disabled child means that unless one of you is earning squillions, you are pushed further and further to the periphery of society so you have no choice but to beg and appeal for charity, thereby feeling beholden and worthless.

I’m so sick of feeling so fucking downtrodden, of falling down and rising up. I just want to lie down and go – TIME OUT. DO OVER. MAN DOWN. CODE RED.


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