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.

Shop

Every Wednesday Oscar’s school has Shop. Shop is their version of canteen. Each class comes in an orderly fashion and the kids can buy some lunch or a treat.

Yesterday was the first time I helped out and as the boys’ primary school doesn’t have a canteen I was pretty darn excited.

Along with four other mums we got the various offerings ready and then the kids came.

Oscar’s class and some of the girls in it who know we were positively apoplectic with excitement about me being there and well, it was just an awesome experience.

These kids. With all their challenges and deficits and impediments and whatever other speed hump their body and mind decided to throw at themselves. Up at the counter. Saying hello, saying who they were (so if they’d ordered something we knew to get it) and then working out the correct money to hand over. Mr B and each classroom’s aide were there helping them if need be.

I just felt like my heart was going to explode and turned to one of the other mums and said as much. Then made a comment about what a special place this school is.

And then proceeded to cause both of us to burst into tears.

So while M from 9M was trying to hand over the correct coinage for his sausage roll and strawberry milk I was facing the other way frantically fanning my face and wiping away tears.

Because I’m an absolute idiot for this place.

 

Onward!

A big day.

Somehow this:

turned into this:

I know! HOW THE HELL DID THAT HAPPEN. Well a hell of a lot of angst was involved, a fair amount of nights lying awake, a shitload of therapy, several snake0il dabblings and in the case of the parents a significant consumption of alcohol. That I know. But we’re here! We made it to the next BIG milestone.

High School.

Most of you are aware that Oscar is attending St Edmund’s School in Wahroonga. A special ed high school of the most special order. Go visit that website and tell me you’re not moved. Inspired. Blown away.

Yesterday was Day 1. Yesterday was also 4o+ degrees celcius. Oscar doesn’t do heat well so it was that more than anything else I was worried about.

More than the fact he’d been up at 11pm asking if it was time to get ready, then up at 3 and by my bedside showing me he was all dressed in his uniform and ready to go, and then, well, that was it. He was up at 3am.

He couldn’t eat and anyone who knows Oscar will know that speaks volumes about the kid’s nervous excitement.

His bus was due at 6.50am. Of course it arrived at about 7.25am.

Meet Mrs J. Mrs J has been hanging around with the special kids too long so talks to everyone as if they were special. A few times I felt like saying, ‘no, no, it’s my son with the brain injury not me’. Imagine one of those filibustering creatures who flap around in mass confusion while trying to create the pretence she knows exactly everything that’s going on. Seriously that Oscar even makes it to school let alone home from it is evidence greater forces are at work here than the law of physics.

And then, just like that, he was off!

I must say I did not shed a tear. I did not come undone. I was pretty relieved actually. AND MAN did I enjoy the silence that followed for the rest of the morning.

Then, at about 2pm, in the middle of Myer in Chatswood where we were hanging out in air-conditioning I turned to Chef with a quiver in my voice and queried if he thought Oscar would be OK.

Of course Chef looked at me like the bloody idiot I was being and reassured me that yes, Oscar was fine.

And here’s the thing, we had an awesome primary school experience but there was always an element in me of waiting for the phone call about some thing or another. About going on an excursion and would he be OK etc.

But here, at a high school specifically for kids just like Oscar? I have implicit trust and complete piece of mind. I mean, complete.

And I realised that in the almost 13 years he has been in this world, that was a first for me.

and just like that he was home.

A big day for all of us.

Onward!

End of an era

In two days time an era for this family will come to an end. A major chapter in Oscar’s life will finish as a whole new exciting one begins.

Starting school for a child with additional needs is a monumental undertaking. We started a good 18 months out from when it would finally happen. We desperately wanted him in a wonderful program offered by a specialist special needs primary school in a satellite class at a school literally a few blocks from our home. An anxious wait ended beautifully with two fabulous years in a program called Start Right. Indeed.

And yet, we had barely drawn breath and relaxed with that decision that the whole process had to start again with finding the best school for Oscar to then transition to. Unbelievably that school ended up being our local public primary school. He started there in Year 2, aged 8. (and look at how dinky and cute Felix was on his first day of school too!)

To say this school has gone above and beyond is an understatement. This school has treasured Oscar. They have seen him as ‘just’ another student in his year group all the while making the adjustments and allowances so many schools and anti-integration voices say are impossible. He has had the same opportunities and experiences as his peers plus more. He has been taught, loved and celebrated just as any child should be. They have regularly taken my breath away with their can-do attitude and soothed my worried heart through their zero-tolerance approach to bullying and their capacity to celebrate Oscar’s achievements as the Everest they sometimes are for our boy.

Tonight was Oscar’s Year 6 Farewell Dinner. This is a wonderful evening at the school, where the Year 5 and Year 6 students get all dressed up and have a good time.

I had been marvelling how unsentimental I’d been feeling about Oscar finishing primary school. I had put it down to the fact that Felix will still be there and Jasper is starting there next year. And then this happened:

Oscar’s Year 6 Farewell Dinner presentation from Kim at allconsuming on Vimeo.

I think it was the cheering that did it. Or maybe how he bounded up there. Who knows but once that happened I was a blubbering mess. Through the tears and snot and breaking voice I managed to get the teachers and Aides of Awesome who have taught Oscar at the school:

Our life? Full of wonderful people.

Different strokes for different folks*

One thing that never ceases to amaze me in having a child with special needs** is how differently people cope/parent their child. I have no idea why I am surprised, I mean, every person on the planet parents differently and from what I can tell most of us grow up into functioning adults with minimal need for years of therapy. With that in mind why on earth would I be surprised that parents dealing with children with a disability would be any different?

A friend was recently telling me about someone they knew who – from where they were standing – seemed to be in complete denial about their child’s predicament. Here was a child about to start school who was still not talking and not toilet trained and yet the entire extended family is in some bizarre ‘don’t mention the war’ scenario.

Now, for all we know, the family is completely on top of their child’s development but simply chooses not to divulge that aspect of their lives with others. Or perhaps they are in denial and doing absolutely nothing about it except willing the delays away.

Here’s the thing, I am so conflicted when I come to stories like this. I mean, can you imagine the crisis you must be feeling in yourself at maintaining that attitude/facade? But then I think, wow, to be so confident in and of yourself that regardless of what milestones your child is or is not hitting you don’t worry in the form of seeking assessments and pouring money into every form of therapy known to man.

It made me remember when we first told family and friends that Oscar had a rare genetic disorder and that we did not know what his future would be. So many people – including very close family members – were all, ‘OH he’ll be FINE. Just FINE.’ Someone very close to us said, ‘you know, if they’d never done those tests you never would have known and wouldn’t have these worries. HE’LL BE FINE.’

I don’t know about you but I just could not adhere to that attitude. Everything was not fine. He was not fine. He had a system completely compromised by a dodgy chromosome. ALL the research shows that the greater the repetition or deletion of genetic material the more dramatic the impact will be.

The nursing educator of the NICU said to us, ‘now listen to me, if we all had genetic testing I think there’d be some pretty big surprises. You just treat him as you would as if nothing was wrong and when something presents itself as needing to be addressed, you address it just.as.you.would.for.any.child.’

That basically became our modus operandi. We knew the repetition he has on chromosome 4 was large so early intervention was a definite. Early in that process someone noticed his speech sounds and lack of range and mentioned dyspraxia. Way too early to tell they said, but just keep it in mind. Of course it was not that much later we knew he had profound verbal dyspraxia and some motor issues as well. So off we went to speech therapy, off we went to swimming and off we went to kindy gym. And so on and so forth. Rinse and repeat.

Oh sure, did my heart break into a thousand pieces when I’d watch him through the one way mirror at assessments just not completing any of the tasks? My adorable bundle of smiles and smooches and cuddles. Did I just want to scream how unfair it was watching my wee little chap sit in a booster seat with a handful of other kids with special needs in an early intervention program trying to learn the signs to Twinkle Twinkle Little Star? Did I just feel more isolated and alone more than any other time in my life during those early years?

Absofuckinglutely.

But I knew, I knew that as hard as it was for me to watch. As unbearable as the charting of deficits in my child was, I had to keep going. I had to do everything I could, give him every opportunity to be the best he could be, whatever that was going to be.

My GOD it hurt. It still does. When I see him trying to process what other kids just get straight away. When I see him watching the other kids to know how to act in a particular situation. When I see him just sitting slack-jawed staring vacantly off to nowhere. When he’s stimming.    

But denying it. Refusing to see it. Defiantly ignoring the science in front of me? Never.an.option.

Every now and then – as you all know – I fall in a complete heap but I have a rule now. 24 hours. I can have 24 hours to feel miserable. To wallow. To wail. To have a pity party with as many black balloons and streamers as my mind sees fit to imagine. But that’s it.

Because – and this became my benchmark – how is this helping Oscar?

Just because it is hard and it hurts does not give me permission as his parent, his mother, as an adult to just dump it in the too hard basket and ignore it or pretend it does not exist. How does that help Oscar?

At the end of the day Oscar is a 12 year old boy entitled to the same experiences and opportunities as his peer group. He may not be as good at those activities as an able bodied child, he might not enjoy them but hey, there could be absolutely nothing wrong with him and still not be good at it or enjoy it.

All I can think of for children whose parents are making the choice to adhere to the ‘he’s fine, he’ll be fine’ approach is while at the end of the day for them it may all come out in the wash, maybe it won’t. They could be using signing to communicate, they may have real talents in some areas that could have been unlocked. I guess I’m trying to say there are as many doors that could open in a diagnosis as are shut.

Onward!

* This post originally appeared in a different form in relation to a situation relayed to me by a friend so the first  series of comments may seem a bit off-centre or to be talking about something completely different to what appears here. Just, you know, so you don’t think you’re going mad.

** ‘special needs’ being those in your child that are more challenging and drive you even crazier than the standard needs of an offspring