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