We have now dived into the school holidays… well more like a side-way shuffle into bed on a Friday night at 7.30pm after watching eps of Peppa on the iPad!  Mikey D has had a great term 2, and his report card was just perfect!  And by perfect, I mean no crap about what he couldn’t do but all about what he could do, what he has achieved, what he is working on and how as an individual, he is making sense of his new school environment.

This is such a different experience for me.  When we entered the Special Schooling system at the start of the year, I had no idea what to expect.

Instead, I have enjoyed the learning process of the new structure a special school brings.  No homework.  Why?  Because all these kids, have extra-curricular activities.  Some sport, some therapy based, but all to help them progress in their making sense of the world and their ability to learn what is important to them, in the way that suits them best.

To me, it’s a beautiful model of learning and one in which I try to remember when I deal with the mainstream setting for Mikey D’s twin, who is currently undergoing the verification process.  It’s a long-winded process when there is no clear defining diagnosis.  But that is the way it is, at the moment, and despite what the report card says, it doesn’t indicate that Jaz has any ongoing health issues (despite the reports that I continually have to produce!)

I feel for the teachers in mainstream schools with the enormous pressures they are under to reach the targets that are set for them to prove their ‘teachability’ (I’m not even sure if that’s the right thing to say, but you know what I mean, right?!)  I have had meetings in this past term at mainstream with HOSE (head of special ed), teachers, teachers aide and guidance officers and have just been left feeling that it is a complicated process when you have a child, or children who require a lot of extra assistance.

There is simply not enough support for any teacher and/or teacher aide, to give the children what they truly need.

gap

On the flip side, I feel that Mikey is getting that support incredibly as the numbers are so much lower in a Special School – 5 students to 2 teachers.  Remembering also that a lot of the time the children may have reduced physical ability – Mikey has hemiplegia cerebral palsy so needs assistance requiring anything bilateral, as he has one functional arm/hand.  Don’t even get met started on toileting and the assistance that is required along those lines of the necessities of self care, a basic human need!

It will be really interesting to see what develops in the second half of the year.  I will be sure to come back and let you know!

The most important thing for me is that my kids are happy as they are being supported in their journey to adulthood.  So to get the following comment from Mr D’s teacher, warmed my heart:-

His outgoing and happy nature endears him to others, and he has made many friends at school. His amusing antics have also brought a lot of laughter and joy to our class.

What a great start to his schooling days 🙂

That’s a wrap!

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!

Mikey D’s Update on Prep Life!

We have had a kicking start to the school year and now we find ourselves in Term 2!

Mikey has a great class with 4 other little fellas, and 3 incredible teachers.  1 Teacher and 2 Teacher Aides makes sure that all the kids get the assistance they need to thrive in school.

This term, they are checking on their plants, that they planted in Term 1.  The school has a little garden where the budding green thumbs go to check their progress.

There is also a break-out room with a nest swing (one of MrD’s faves!) as well as big padded mats, wedges and tunnels.

There is a trampoline room, where, yep they go trampolining!,  and a pool also for hydrotherapy.

There is tonnes of sensory activities and science.  One day I went to pick Mikey up early for hippotherapy, and for science they were tasting different foods for the different textures and tastes – that was a big hit with MrD!  They also had a popcorn making day 🙂

Mikey is learning independence and how to communicate with his class mates.  They use a combination of Verbal, Pic Com Cards (Picture cards) and Makaton Sign.

He catches the bus everyday, except for Thursdays, when I take him. When we arrive, there are so many friendly happy teachers and volunteers to greet us and high five Mikey and all the other kids as they arrive.  It is simply the best way to arrive at a place – can you imagine if you went to work and every morning you were greeted with friendly faces, cheers and high fives?!  What a difference to the start of the day that makes 🙂

Before Mikey started at his Special School (also known as Developmental School) we were very keen to have him start with his sister in a State (Mainstream) school.  After we were told that he would be in a class with 25 other students, there came a point where we knew that it would not have been the right fit for him.

I think, as parents, we thought that keeping the twins together was the best way to go. It wasn’t.  Since he started at his Special School,  he has not looked back.

Unfortunately there is still a bit of stigma attached to Special Schools.  But as time goes on, this IS changing.  These schools have a very firm place in our communities for some very special individuals.  For successful inclusion in our communities we have to acknowledge that it takes different environments, to foster great foundations of our future generations, unique as we all are!

 

 

 

 

Another life lesson learned the hard way – going off track!

This week we have started the process of pre-surgery testing.  It is overwhelming, mind blowing and scary.  Despite the fact we have been gearing ourselves up for this, doesn’t make it any easier!

I was taken a bit off guard when my heart broke a little bit the other day as I watched my eldest neuro typical child break down after a running race at school.  Not just any old running race, but the race she has been gearing herself up for since last year.  Because now she is at the ripe old age of 10! she is able to compete in Districts for running, if she placed in the top 3 (no pressure!).

MrD’s eldest sister has done a few fun runs to raise awareness and funds for the CPL.  She has loved doing them and is competitive by nature, just like her dad.

Unfortunately, today something went wrong.  She ran off the course by mistake, and had to be geared back on track and subsequently, did not make the top 3.  She was heartbroken as she had set her sights high.

The irony of her running for her brother in the past couple of years, hasn’t been lost on us.  A lot of siblings do tend to push themselves to want to be ‘perfect’ to compensate for what they see that their sibling with a disability is unable to do for themselves.  Physical sports is one of them.  I have read a lot about this over the years.

Both of us were there and we saw the disappointment and we felt her emotional pain and frustration.  The thing is, and I am sad to say this, it never entered my mind that this would happen.  Because she is so strong willed, capable and driven, I didn’t think anything would go wrong.  But it did, and I was heartbroken for her.

It made me realise, that despite what we do as a family together and what we’ve been through and will continue to go through, there are times when we go off track – and which we can’t stop from happening.  It was one of those times, that from the mistakes, we have to learn a hard lesson from and move on.

With MrD’s experiences, we can explain them to a point to our girls, as there is some rhyme and reason to why things are difficult for him and challenging.  He teaches me as a mum, more often than what I teach him, that’s for sure.

Now watching Jaz’ run was a totally different experience again.  My eyes filled with happy tears, we saw Jaz in a group at the back of the runners.  Jaz was beaming and proud as punch to be running.  Mikey was thrilled for her and loved seeing all the kids.  He sat in his chair, waving his bag of popcorn as Jaz ran past us, holding hands with a girl older than her, guiding her along the course.

After the race, Jaz was full of the thrills of it all – telling us how fast she had run and that it was so much fun.  It didn’t occur to her that because she was at the back of the race, it wasn’t as special.  Jaz was genuinely happy to have been apart of it.

The thing is, I personally don’t think life is meant to be on track.  But it’s hard to tell a 10 year old that, when it’s taken my 40 years to figure that one out!  We are almost always told, we have to have some kind of plan, knowledge of where we are going.  A clear cut path.

Try telling a bunch of adults that it’s ok to go off track and listen to the pin drop!   Some of the best things in life happen when we go off track and that is when our lessons come to us.  Apparently, the pressure on our kids (NT kids) to have clear cut ideas on where they are going, and where they are headed to from after school – are pretty real.  To not have a clear idea, is apparently, not ok (??!!)

I don’t really know how the next few months are going to pan out for us, it is going to be hard work and many times we are going to find ourselves going off track, and having to readjust our priorities.  But that is what we must do for now.

And you know what, that is ok!  A lot of people are no longer ticking boxes and conforming to outdated ideas that no longer suit their situation.  Disability and the life that goes with it, from what we are experiencing, certainly doesn’t have a clear cut road.  It is fraught with many challenges and it constantly challenges US to think of new ways to do things – let alone MrD who lives with it!

Of course, our little big girl learnt another life lesson and bounced back excellently.  I think her ability in her resilience is being tested all the time.  And that is one life skill that is earned, not taught.

 

 

 

What are the chances of lightning striking twice?

What are the chances, that you will find someone who is walking down a very similar path to you, at the exact same time as you are?  Facing fears, deliberating on issues that to other people, don’t even enter their minds as the rarity of the situation is so extreme that you even struggle to comprehend it?  What are the chances that you will actually find another person, where amongst the madness, you can share similar fears, worries and most importantly, your hope!

Well, stranger things can happen and for us, this did happen!

Last October, Bryce and MrD flew to Melbourne for a week long hospital EEG.  A mum had reached out to me via the HHE Rare Connect webpage.  Her name is Jenny and her son is Win.  They are based in Melbourne and we are based on the Gold Coast.  Two different cities, two unique boys both with the same rare form of epilepsy – HHE Syndrome.

Jenny met Bryce and Mikey during his EEG.  It’s a small world with rare epilepsy syndromes, Jenny was there for a neuro review with the same doctor that was reviewing MrD. They briefly discussed many things in that short space of time.  They parted ways and Jenny and I kept in touch.

As the months went on, Jenny told me of all the things they had tried with their son, as I told her what we had tried with our son.  The only difference between Mikey and Win, was their age – 5 years old and 9 years old, respectively.  Both right-sided hemiplegia.  Both cheeky chappies, both hard workers with their therapies over the years, both fighters and both loved by all that crossed paths with them.

Jenny told me that they had been given the news roughly the same time that we had our news.  We both knew that our sons had intractable epilepsy, but late last year we were both told our sons needed radical brain surgery called a hemispherectomy.  There were no more waiting periods, what-if’s and what may’s.

Win is booked in for the second half of the year, as is MrD also – confirmation soon to come – we are both waiting on the dates!

Both of us as mums have found a connection through a very unlikely and unfathomable set of events, but here we are, about to take the leap of faith that our doctors are guiding us on.  We are both fortunate to have partners that are here with us too.  Both sharing this roller coaster ride with us, along with our boys’ siblings.

What are the chances??!

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

It’s all sunshine and sandcastles over here! The comment from a stranger that made me look at things differently.

People say – think positively, and it will all work out.  If only it were that simple!  But yes, I try and take opportunities and run with them, and at times I try and ignore the ignorant comments (but again, that’s easier said than done).  I only have to jump into a forum and see that parents and their special needs children are being ridiculed or made to feel ashamed because of their personal situation.  It’s just not right.  But when do you say something and when do you just hold your head up high and keep walking on?

I was recently at an event (does that make me sound fancy?!), I was just out with Bryce enjoying a friend’s birthday and not drinking nearly as much wine as what I usually do (!) and I had a really interesting conversation about Mike D.  The stranger said to me, after I explained that despite the growing awareness of disability, there is still a lot of rudeness and ignorance shown towards people living with disability, and their families that support them.  I don’t usually get that heavy at parties, it’s because I wasn’t drinking wine!

He then said to me “You will find a lot of people can’t look themselves in the mirror, let alone identify with a person that is so different to them’.

It was sad but true.  A lot of people live a lie.  They can’t face the truth within themselves, so how on earth could they possibly identify, feel compassionate towards or show empathy toward a situation so vastly different to themselves?

On the other side, you come across wonderful people, who are 110% interested in your situation and truly listen to try and grasp an understanding of what life may be like for us, but more importantly, for Mikey.   It will be Mikey and his sisters that will be handling the complexities of life and all that comes with it, when they are adults.  As a young family, we are helping them, but that won’t be forever.

It is very interesting to see things in this way.  It puts a new perspective on what to concentrate my energies on as a special needs parent.  I’m not going to waste my time having a conversation with every Tom, Dick and Harry to try and let them understand where we are at.  That’s not my job.  What it is, is to support Mikey so that we can go out into the community and access just as many experiences for him, as his sisters.

And that my friends, is how you say “F*CK YOU” to the stares, the whisperings and the sideway glances, as you stroll/roll/limp on by with a smile towards the sun! 

An update of the Mr D – The Bushfire

Hi guys,

So to give you a little update on Mikey, we are currently awaiting a trial arrival of Medicinal Cannabis.  Once we trial him on that, we follow with an EEG as the neuros are very interested to see the results also.  It is a very grey area this MC business and is not as easy as the media would like us all to believe.  Just because it has been passed through legislation, does not mean we have access to it, or more importantly, that doctors have access to it and can prescribe it to us.   Oh no, we are like many other parents across Australia, having to access it on our own means.  (You figure it out!)

However, we’ve been researching this stuff for quite some time now, and the people you may have seen on shows like Insight, Compass and Q&A and the recent SBS doco are the ones that we speak to.  Let me tell you, it’s a small world out there for rare syndromes.  Mike D is known throughout the different portals of health channels that we have been dipping our toes in!  We are very fortunate to have doctors support us in this decision.  I mean, come on, we are disconnecting/removing half his brain, it’s not like it’s a light decision!

The plan is to have an EEG, following the MC and see what it has done (if anything!) Medical Cannibas is another form of medication that we haven’t tried, so for one last shot, this is it.

This is what it comes down to – these are the facts we have been told by our incredible Paediatric Neuro team in Brisbane as well as the incredible Paediatric Neuro team in Melbourne.  You see, we have them all on our side.  There is no time for egos in this game.  These health professionals are about getting the best results for the children that are under their care for these debilitating, catastrophic forms of childhood epilepsy.

What we know, is that the damage has been done.  Just as we were told in the recent Hemispherectomy Conference in March, to the recent consult we had with our Brisbane neuro.  I hope it makes sense to you too.

Think of Mikey’s condition as a Bushfire.  The Bushfire came through when he was 10 months of age and did most of the damage then.  It pretty much destroyed his left hemisphere.  As he was so young, his young brain naturally began to reorganise itself by rewiring across to the good hemisphere (his right hemi).  This is why over the years, we have seen strength in a lot of his gross motor skills, fine motor skills and development in speech and concentration.

However, the problem we have, is that the bushfire is still smouldering.  The left hemisphere is showing far too much activity with the amount of medication he is currently on and is interrupting his good hemisphere from making great leaps of progress.

We want to give his good hemisphere the best possible chance of development, so what do we do?  We trial him on more drugs – once you hit 6 medications, you are pretty much done – you are just swapping names around.  Or do we decide on the surgery?

So this brings us up to now, to April 2017, where we are excited, terrified but determined that this next step, with the guidance of our very special doctors, is to move forward with preparation of surgery. mik

We have pre-surgery assessments due to begin next month.

We will keep you posted!

MrD & Co 🙂