The elephant in the room.

At times it can be hard for me to keep smiling.  Oh yes, I’m very good at slapping on a fake smile – aren’t we all?  It’s easy in this fast pace world to fake it, til we make it, but that’s not really healthy for our mental health in the long run, is it?  Sooner or later we snap.

I have seen a lot of people close to me suffer with not speaking up.  In some respects, even though the dialogue is out there and many awareness campaigns, there is still somewhat a taboo about admitting that you are feeling worn down, emotionally exhausted and the physical exhaustion that goes along with it.

During our time as parents to MrD, it has occurred to me that over time things have become easier in some respects.  The transition of pre-prep to school has been amazing.  The structure of the classroom to meet his needs has really helped.  It’s the meltdowns at home, I never realised that would get to me so much.

I had a little getaway to Melbourne over the weekend, and as usual, couldn’t see everyone I would have loved to, but made the most of who I did see.  When I returned home, I was shattered, and it wasn’t just that I’d been in Melbourne for a long weekend, dancing into the wee hours to some of my favourite 80’s/90’s bands… (!)

Because I had 3 days ‘off’ when I got home, I was back ‘on’ and the first day back ‘on’ we were back at the hospital.  The whole reality of life with chronic health conditions, disability – both intellectual and physical, really hit me again, as I came back from my respite.

It dawned on me, like it was a new thought, that this way of life is actually bloody relentless.  And unlike my neurotypical child, there will be a time, when she is so independent she will take off into the world and not really need me.  Of course, I know she’ll need me for money and advice(!), but not in the same sense that Mikey will always need me and Bryce.

I guess this is one of those things that is always at the back of my head, and I know I must not look too far into the future, but the relentlessness of it all at times does and no doubt, will continue to play with my mental health along the way.  It is a bit of a silent one, because as soon as I open my mouth about it, I feel that I need to justify and readjust my thinking pattern to the here and now, which is really hard when you are mentally exhausted!

The reality of the amount of help Mikey needs and will continue to need, even post-surgery, is a reality that I must face and be realistic about if I want to embark on this adventure and keep my sanity in check!

Do you agree?  Do you think it is a constant process that we have to readjust our thinking patterns and expectations? Let me know! 

Today MikeyD got verified!

Today MikeyD got verified at his Special School!

What does that even mean?  For the first few months, MikeyD has undergone assessments at school for his cognitive abilities as well as physical abilities.

All kids that enter the school need to be verified for ID (intellectual disability).  As MikeyD’s physical disability goes hand in hand with his intellectual disability, he has been successfully assessed as verified!

That means that up until Year 12, he will be fully supported in his school environment, accessing a cirriculum tailored for him!

If you had told me early on that MikeyD would be fully supported in this way, I would have called you crazy! Everything seems to be geared up nowadays about whether you fit into a box and if you grade well.

But guess what?  When we have to navigate a system for our kids with a disability – and I am talking about all of them – educational, medical and societal… there is great support out there.

I think if I had known this early on, some of my anxiety would have definitely been alleviated!

Onwards and upwards Mr MikeD!

Being Grateful is a Daily Practice!

Don’t worry, it’s not easy to be grateful all of the time.  It takes time and practice.  In fact, it is only human if at times we look at the glass and see it as half empty.  It is difficult in this fast pace world to think that we need nothing more to be bigger, do better and strive for the best of every opportunity that comes our way.  To do anything else, is seemed to be a failing.

Of course, depending on who you speak to on any given day, you could be confused in thinking that there are many things we should be striving for.  But really, I have asked myself lately, what IS IT that is so important?

After losing my dad last year to pancreatic cancer; he was not only my dad, but a wonderful Poppy to my beloved kids.  Now we are dealing with an aggressive form of epilepsy with MrD – HHE Syndrome – and all that comes with it pending his brain surgery later this year.  It doesn’t surprise me that as brutal as this has all been, it has made me question many things.  What is the quiet but forceful voice whispering in my ear – egging me on to just say it, say it as it is?  Unapologetically.

I ran into our speech therapist that MrD’s twin – Jaz – is accessing through her mainstream school and it was a great exchange of how we look at progression with children with their development.  I was told that Jaz is currently at a level quite low to what is expected of her peers.  In fact, despite her extra therapy – OT, Speech and Physio, it has been said that she is progressing slower than what they had liked to have seen.

You want to know what my response was?! Of course you do! 

I said to our Speechy, I am really happy with all of the above, because the fact that Jaz is healthy enough to attend school, is a win in my eyes.  I know that she will progress in her own time, in her own way.  It may not suit the current climate of the classroom and she will be deemed to be ‘falling behind’  but falling behind who?

She is unique, as all the others in the classroom.  She will get there and there is no reason why she won’t.  Just as MikeD, he is given the tools in his school, I believe that she will be given the tools in her school.  I do have faith in the school system and I appreciate them advising me, but really it doesn’t phase me.  True.

The thing that I wish for is that the neuro-diversity of all kids in school – whether they may be in mainstream or a special/developmental school is that they are ultimately celebrated for their strengths and abilities, and are giving the right supports for those that they may lack and need help with.

I am continuously learning to be grateful for the experiences my kids have gone through to remind and show me what it is I need to focus on.  It would be great if that was normal rather than this striving for something that is not really real.   We actually have it within us, if we just slow down for a moment.

Self belief.

Soldier Down

Today in Australia it is ANZAC Day.  April 25th is a national day of remembrance whereby we remember the men and women who fought for this great country in honour of the freedom we have today.  We thank them for the country we live in – one where we have options that wouldn’t be possible, were it not for their bravery.  As our Australian troops continue to fight battles all over the world, we continue to thank them for their bravery so we may continue to live in this beautiful country.

Of course, today Mikey D is fighting another kind of battle.  The internal battle of the dreaded hidden disease of childhood intractable epilepsy.  He has suffered today.  He has had many seizures.  He has had about 6 naps and wakes up very distressed.  He has been very clingy and even when we went for a walk with our pooch, he was not happy, just asking for Dadda and to go home.

Once we got home, he would not settle easily.  He ended up on the couch, with his twin who was giving him a sympathy sleep.  She lasted 2 minutes.

He went to bed early tonight and was not interested in food – definitely not good and not like him at all.

I hope tomorrow he rises after a much deserve rest after the battle that continues daily in his head.

Tomorrow is a new day and the sun will rise again.

Peace to you all x

Disability and Your Response

I find that we have to be so careful of what we say in fear of offending someone, that we either say too much (and we don’t hear the other person) or nothing at all.  Both to me, can be equally damaging, depending on the circumstances.  The only way we can possibly learn from one another is to show genuine interest and ask questions, offer to help in our endeavour to try and understand a situation that is out of our comfort zone.

Believe me, when Danger is throwing a shit-fit at the supermarket, body crashes to the ground, squealing louder than the motorbikes he so loves!, stares don’t help.  I generally have his twin with me and a bag full of crap!  If he has his AFO boot on, I get more ‘concerned’ looks than if he doesn’t have his AFO on.  I will get whispers of – control your child, what the hell is wrong with him and what is with that crazy woman?!  These responses have not changed in the past few years, in fact, they are getting worse as he gets bigger.

Does that person have ‘special needs’ or ‘additional needs’, aren’t we all ‘special’?!  I personally don’t mind what order you put the words in, as long as it’s followed by action – and that can be as simple as a kind smile!  If you are getting the gist of it, or at least trying to understand it, then that’s better than saying nothing at all.

I love talking with people and the more parents I listen to, the one thing strikes me.  We are just wanting to help our kids, that’s all.  We just want them to be accepted in a world that often can forget you and leave you behind, if you are anything other than the ‘norm’.  There are many parents sharing their piece of the world via social media to bridge the information gap, to help those who may not experience disability in some form, in their daily lives or to help those that are new to this way of life.

The Australian Bureau of Statistics say,

In 2015, Almost one in five Australians reported living with disability (18.3% or 4.3 million people).

With earlier diagnosis, this number is sure to rise.  Yet, I find there is still an attitude of ‘if it’s not happening to me, then it doesn’t concern me’.  Well, I think it does, I think it concerns all of us.

Apart from getting out there and beating our drum about it, writing about it and just talking to others, I guess, like all changes, it takes time.  I do believe, however, that some things could change sooner. I would love to see a natural acceptance take place over time, something that becomes ingrained in our society’s view of what we perceive as ‘normal’ – just as we accept different family structures, why haven’t we done the same with our children with challenges, chronic health conditions and disabilities?

This is what has been on my mind these past few weeks, in my ever searching quest for actually being able to leave the house and feel truly at ease with it all.  Last week was a shitty week and I wasn’t in a great place emotionally, so it took it’s toll.  However, I heard from a lot of others who in their support, spoke of their experiences, even spanning to some 40 years ago, this continuing prejudice towards disability or situations that are different.

Yes it is different, but different isn’t bad – it’s just a different way, that’s all! 

#acceptdifference

 

 

Campaign for Change!

trolleyThere are loads of petitions out there concerning inclusion, or lack thereof, for our kids and adults alike – so if you are fed up with a current situation in your local community, setting up an online petition is a great way to get the ball rolling with spreading awareness.  You can set one up through Change Org

I started my own Change Org campaign in December 2014 after my own experience and frustration of not being able to put my son safely in a shopping trolley and the lack of response I received weeks after from both store managers of Australia’s 2 largest supermarket chains.

I then shared the campaign on Facebook, hounded people to sign and share – and it spread like wildfire.  It appeared on loads of Facebook sites of organisations that were also campaigning for change for special needs.  We had over 37,000 signatures.  I then contacted multiple media outlets for assistance to run the story.  My local newspaper ended up running the story – Gold Coast Bulletin – Special Needs Trolley.  The trollies were then rolled-out (sorry, couldn’t help it!) across Australian stores in May of 2015.

So much more awareness is needed for issues in our local communities surrounding inclusion –  we have come a long way in some areas but we still need to improve in many others! 

Sharing is Caring!

I’m going to thank everyone again so much for sharing this page and others that I will be sharing over the coming months.  When you share/like our page, it makes us feel that the bigger community supports us.  I read an article the other day interviewing Nathan Elvery of Change Org.  The article is from last year but still very relevant.  I have had the pleasure of working with Nathan on a couple of different projects and I have asked him for advice in previous times.  In this particular article, there is a term used ‘Clicktivism’.  Womens Agenda – Change Org

The thing is, whether you believe it or not, simply clicking like on a page shows support and sharing a page also.  There is a common goal that people who write these types of blogs and set up Go Fund Me pages all want to achieve.  It’s a greater understanding of what their world is like, because it’s not the norm.  We can sometimes live in a very fragmented world where fear can take over.  To share that, in whatever form, is a great sense of relief for some and a step towards understanding from the greater communities that we live in.

Looking at an even bigger picture, the more support we get the more there is a reason for Researchers to get on board.  Currently, I am looking at working with researchers in the EU to find a cure and better treatments for HHE.  If it wasn’t the support from those who have taken a look at the page and taken an interest, those in my immediate community and those family & friends around the globe – even if you just scroll through my babble!, that’s great.  Your ‘like’ is another supportive voice for us and is very much counted!

So please remember, sharing IS caring 🙂 

PS And who gives a crap if you post the same thing over and over again – if a bloody Kardashian can repost the same images and get ridiculous amounts of clicks, shares and publicity, then surely pages intended to raise awareness are a little, dare I say, deserving of the same recognition?

I might not be a Kardashian, but I am a Kelly and I’ll selfie the crap out of myself if that what it takes to keep this page going and to raise awareness.  One of my ambitions is to setup a non-profit org for HHE families.  Again, I’m getting ahead of myself… let me find the duct tape and I’ll start snapping those selfies!

I’m having a midlife crisis – but it ain’t no pity party!

Ok, so I have decided that if I’m going to have a mid-life crisis, then this might just as well be it.  Or it could just be instead ‘a mid-life awakening amongst a state of crisis induced moments?!’  Either way, I’m not getting a boob job, they are far too expensive.

So what’s this all about then?  This 10 Feet Tall business?

  1. Firstly, I have wanted to bring wider attention to HHE for a while now – in fact, for about the past 3.5 years!, in some type of web page format – I just never quite had the ‘ah hah’ moment until, quite literally, a couple of weeks ago.  I’ve been following a few blogs for about 12 months now (a couple of different ones, regarding various topics);
  2. Secondly, after the trolley petition of last year (yes, there are those trolleys again!), it got me thinking about other ways that things need to change to encourage inclusion in our community.  I read a lot of negative stuff, hear a lot of negative stuff on the news, it’s all there, but surely, there is some good stuff going on.  And you know what?  There really is.  If there was ever a ‘good time’ to be in a shit-storm, then I’d rather be in this era, right now.  We have great researchers, doctors and medical professionals fighting the good fight. They are doing incredible things with research and medical science and we are extremely fortunate to have Prof. Ingrid Scheffer on our team – as do a lot of families with children with rare and aggressive forms of epilepsy;
  3. Thirdly, 10 Feet Tall is not just about our experience as a family but it’s about yours too.  What’s it like to be a brother, sister, Grandparent, Aunty, Uncle, cousin or friend of a 10 Feet Tall Kid?  Remember, when you support us, you boost us up and together, we are 10 FEET TALL.
  4. And lastly, 10 Feet Tall is an attitude our kids have – all our kids have.  Let’s celebrate it, in every shape, colour and form!

**Pic is of me with my cousin Scotty – who is a TFT’er supporter – he took me to the Madonna concert in Brisvegas earlier this year in March, which was one of  the best moments of my life.  If this is my ‘mid-life crisis’, I’m loving it!