Mikey is quite the chatterbox, yet for all intents and purposes he is still labeled ‘as non verbal’.  I guess when it comes to the technical definition of verbalisation, he is unable to express himself the way a typical person can.  Instead, he uses a combination of single words, gestures, sign language and PECs.

The other day I had a most interesting call from his school.  In that the teacher was very concerned about Mikey’s recent behaviour seeming to change in the afternoons at school.  The lashing out and being very ‘hands on’ is out of character for him.

Um well, I had to fess up to her.  ‘It wasn’t out of character – he was actually in character.  You see, he thinks he’s Batman.  He’s obsessed with Batman.  Everything is Batman.  He loves Batman!’

He breaks out his Batman moves but unfortunately he doesn’t realise the strength in his little body and the ‘lashing out’ are actually his moves which quite rightly, looks like he is going head to head with a Batman nemisis! Unfortunately, it’s another child or teacher in the playground that cops it.

My conversation with Mikey that night went something along the lines of – mate, I’m sorry to tell you but you are not Batman.  Mikey looked at me with his little furrowed brow and said ‘uhhh??’.  ‘You are Mikey and you can play Batman, but you are not Batman.  There is only one Batman’.

He seemed happy with that response.  We practiced ‘gentle hands’ and I told him about keeping hands to himself when he’s at school.  Maybe we will stick to the trikes at school instead, where you can play cars? Ok, he nodded.

The next day. I had a follow up report from the teacher, to say that our little Batman had a wonderful day playing different games, engaging as Mikey and leaving his alter ego of Batman at home!

The thing with my non-verbal little boy is that although he can’t use all the words to express himself, he can and does find other ways.  To engage with him, and others like him, takes a skill that most of us possess but don’t realise.  It is the skill of understanding that language is not the be-all and end-all.  That just because you speak the loudest, doesn’t make your right, or important.

In fact, words are over-used frequently, and most of the time are misleading.  When I slow down and engage with someone who doesn’t verbalise as much as myself, I realise that the message I receive is clear and to the point.

I don’t have to overthink it, I just need to embrace it.

Besides, Batman barely talks yet he conveys his message extremely well, doesn’t he? 😉

 

 

The other day fb popped up a photo I hadn’t seen for a while.  It was a 6 year old photo of when Mikey first became sick.  He was sitting up in his highchair with his little lopsided smile, which at the time, we thought was caused by a stroke.  He was out of ICU and had moved onto the ward for rehab.

All the memories came flooding back of the party we had been to the week before.  He was a ‘normal’ baby at that party.  He actually started crawling too!  A week later he would be fighting for his life.  It’s amazing how much we take for granted.

Even now 6 years on, I find it hard to comprehend how our lives changed instantly overnight back then.  We didn’t know it, but for whatever reason, fate had another road for Mikey to follow, and it wasn’t one of the ‘norm’.  It would be a journey of a little boy defying the odds of a seizure syndrome that was only to be managed through brain surgery.

He wasn’t going to hit any of the ‘normal typical’ milestones.  He was going to do things in his way, in his time.  He was going to teach us, that following the normal life isn’t our path – it wasn’t meant for us, it never was.  That being different is such a breath of fresh air!  Seeing the world as our boy sees it, is a fresh of breath air.  Boy is it.

Yes it’s challenging, it’s scary and it can be hard work but what human on this planet hasn’t had some life challenge that has made them feel this way?

Being different is a wonderful asset in the staid world of normalcy.  In fact, the more I discover Mikey’s way of life, and his way of doing things, not to mention the amazing little people in his life, I realise how these kids are here to teach us something.  And if we don’t start taking notice, we ‘the normals’, will miss out.

The developments that he is making through his ABI (acquired brain injury) has showed me how is neuro diversity is a gift.

I would never have thought that 6 years ago.  I felt it was a curse, that we had done something wrong, he was being punished.  There was sorrow and heartache of what we had lost.  Society told us that not living a normal life, would be a curse.

They were wrong.  It is a blessing.

Whatever challenge your ‘special child’ has, is just that – a challenge.  But it doesn’t define them.  Their personality will shine through regardless.

One day our culture may catch up to the fact that being different is a gift and that uniqueness is what occurs when something out of this world happens.  When you feel all is lost, you have reached the point of no return – then a miracle happens.  The darkness starts to lift, you start to feel hope again.  There is a breakthrough.

All you have to do is follow your child and they will show you a new way.

That’s what I see now, a new way.  And it’s pretty damn great.

We’ve been very fortunate to go on a trip recently to celebrate Mr Danger’s surgery and the mammoth year we had as a family.

We had some great news earlier in the year from Danger’s doctor to say that he was all clear of his seizures!

Shortly after, we started to notice some changes in Danger.  He was making great gains with his speech and expression, but had started to have some different body jerks we hadn’t noticed before.  Sure enough, we jumped on Google and YouTube and saw that he was having, what looked like – Myoclonic Seizures.

A trip back to the hospital with a follow up EEG and it was confirmed, he was having abnormal brain activity on his ‘good hemisphere’ and seizures were confirmed.  Back onto a small dose of meds and so far so good, the seizures are controlled.

I guess what I learnt in this time, we had 8 months seizure free, he was going great and so was my anxiety!  Apart from this small hurdle, it’s manageable and it hasn’t slowed him down. He’s independent in that he catches the bus to and from school each day, he high 5’s all his mates when he sees them and hugs all his teachers!  He’s a very tactile little dude – it’s another way he can express himself.

As much as my anxiety crept back up to a place I felt uncomfortable with, once we had him back on meds, things started to settle again.  The best we can hope for is that he keeps going, one foot in front of the other.  It is our goal to let him live his life to the fullest.

It is tough at times to really let go of the anxiety, as the intellectual disability at times makes me wonder how as a society we can help and understand these little people better, because one day they will be grown.  I read (too much!) of where the ‘system’ lets people and families down, and I hope to God, things change and I do believe together with awareness and understanding, these changes and adjustments will be made.  It still astounds me how much staring goes on towards us when we go out.  Bryce tells me he doesn’t even notice the stares, because he simply does not give a shit what other people think.

I do think there is a real lesson there, where caring what others think and taking their discomfort personally, sets me up to fail.  If I simply didn’t give a shit, I would just enjoy the moment, anxiety wouldn’t be high and would be much more manageable.  It’s simple and something I have to work on.  I guess like everyone, I have my good days and bad days, and some days get to me more than others!

The behaviour difficulties are getting tricky to manage as he’s getting stronger.  Generally he’s pretty chilled, but there are a few things that tick him off, and like all kids, he will let you know!  The only thing with his outbursts, it is hard to reason – the intellect there is not developed – you can bribe all you like, 9 times out of 10, it won’t work.  Think a stubborn 2/3 year old – no reasoning!

But that’s ok, we can deal with that, for now and we will manage that and get the support we need as time goes on.

We are grateful each day to have him, out of hospital, living his life.  We know that very fiercely that he may not have recovered nearly as well after being set free from his bad hemisphere – and for that, we are always thankful.

Now, please pass me the chips 😉

Under Pressure – just like Freddy.

We ALL have pressures.  Every single one of us.  Our circumstances vary but we are all under ridiculous amounts of pressure.

To make money, to keep money, to buy food, to make food.  To keep on top of this, to keep on top of that.  To stay fit, to not be fat.  To be energised and not de-energised.

Our kids NEED us.  Our kids with special needs NEED us more than ever.  Mikey Danger needs his mum to be HERE, to be PRESENT and to be here for HIM.

Every week, I feel pressured.   The pressure stems from my feelings following the conversations I have with others who suggest I am not doing enough and that I should be doing more.  I should possibly try this and maybe stop that.  There are a couple of people  – therapists – who DON’T do this, and I LOVE THEM!

Why?  Because they embrace the little person in front of them as exactly the way they are and not what they could, should or need to be.

There are also teachers that do the same important thing – they accept Mikey for exactly who he is, on that day.  Whether he’s cheeky Mikey, quiet Mikey or ‘chatty’ Mikey.

There are very few people in this world who want us to be who we are.

WHY?

Because when they feed our minds with fear and doubt, and we allow this doubt to creep in, it makes them money.

When we choose carefully who to allow the privledge of working with our child, then we allow our little person to thrive as they need to.  To be exactly who they are, in their own skin.

It doesn’t mean that I stop looking.  I continue to look for other ways to do things to benefit Mikey, to help him to thrive but not to the detriment of his or my own, mental health.

  1. We keep it simple.  Two therapies a week – we change it as we go, focusing on the priority for that particular stage.  Everything else we incorporate into our daily life.
  2. Dressing/self-care – a chair in the bedroom to allow him to assist with dressing.  A stool in the bathroom to help him towards independence with brushing his teeth.
  3. As much outside time as possible – where we are in our local environment, learning about the community we live in, simply by experiencing it.

It’s different for everyone, but since his surgery, I have found that by focusing on a couple of things, instead of the mountain of things we COULD do, means that the couple of things that we do, achieves a better result.

There is no race.  Our most trusted doctors have always said the same thing – he is a child first and foremost.   You want him to enjoy what he’s doing, otherwise it’s a constant battle.

And sometimes, we need to pick our battles.

February Post for Rare Disease Day!

27655046_2084354794914319_7518656112282901298_nThis week we received the long-awaited news at Mikey Danger’s hemispherectomy post-op check-up – 7 months to the day, that we’ve been longing to here…..

You no longer need to see me –  come again in 12 months!

These were the words from our neurologist who we have been in a close relationship with for the best part of 5 years.

He has answered every question we have had via email, phone call, skype call and face to face consult. He has guided us through the most difficult decision of our life – to make the decision to disconnect our son’s 2 hemispheres for the hope of a better quality of life for him.

He was suffering seizures every single day since the age of 10months and each of his EEG’s during these 5 years, showed as abnormal.  Every medication he tried, would be short lived until another break-through of cluster seizures would inevitably lead him to an increase in dosage.  An increase in dosage that had serious side-affects for him.  Limited speech, cognitive regression, behavioural difficulties, sleep difficulties.

It is quite surreal when I speak of this experience now, I almost feel as if I’m talking about someone else.  And yet, from time to time, the anxiety of those days, creeps up on me and squeezes my heart like nothing else can do!  Fortunately for Mikey Danger he was a successful candidate for surgery due to the type of rare syndrome he had – HHE Syndrome (hemi-convulsion hemi-plegia epilepsy syndrome).

His strength was lost shortly after he had learned to crawl at 10months but was replaced with the strength of commando crawling, followed by bum shuffling, pulling himself up and eventually, walking with a limp.

All of these stages were huge at the time, and we celebrated them fiercely!  His loss of speech followed by a resurgence  8 months later after the initial seizure to his brain, and then single words slowly but surely followed.

As time ticked on, as it inevitably does, we saw some changes that were positive and others not so.  The to-ing and fro-ing of the decision making process weighed up on many factors, but one that would ultimately lead us to surgery which happened on 26 July 2017, exactly 2 months prior to his 6th birthday.

We were making a decision opting this surgical procedure, rather than waiting anymore in case a seizure were to take his life.  His risk was high as the odds were stacked against him.

This week for rare disease day, unlike previous years, we are all slightly more relaxed!

With an outcome that we could have only dreamed of, our little Danger Boy is thriving.  Living a life seizure free surrounded by people who only want the best for him, we count our lucky stars that he is able to go forward every step of each day, fearless like the little Danger Boy that he is!

Many people have commented over the years with regard to my parenting style of my son with his array of special needs.  I’ve had well meaning people tell me that I am ‘too soft’, am ‘over-protective’ and a specialist once questioned whether I was a ‘lazy parent’!  I’ve had people tell me ‘he will be fine, look at him – he looks normal!’, not even knowing the destruction his seizures at the time were doing to him, and what would eventually lead him to having his brain surgergy.   I would smile and nod, too tired to go into detail the real storm that was going on deep down in his little head.

The thing is, I know these comments were coming from a place of ‘good’, most of the time.  The problem is, when people who don’t have a child with special needs make a comment like this, it’s completely misses the mark on supporting the parent!  A point I think that even the most well-intentioned would be suprised to hear.

When you are a parent of ANY child, you are sure to receive a two cent worth opinion that you didn’t ask for along the road of this parenting gig.  No one likes to be told what they are doing wrong.  But we all like to be told what we are doing right.  It’s a set of different challenges for each and every family.

The way we support one another makes a huge difference.

When we start to acknowledge this, it takes away the competition of comparing children.  Why do we even do this?  Is it because of our out-dated educational system of standardised testing that this way of comparison is programmed into us?  With the thought of believing we must excel at all the same things?  That we must all have similar timelines?  How crazy is that?!

Some challenges in families are more common than others. 

In the case of special needs families, we have a set of common problems that are not found in other families.  Listen, and I mean really listen, to a parent of a child living with a medically complex condition – you will hear that our children don’t hit the milestones and pass the standardised tests that are found and used for typically developing children, so where does that leave us?

No matter what you see on the surface, parenting a special needs child is an intensely  different challenge than when a child is developing typically. 

When a child has a set of medical issues that interferes with his/her development, there is a team of people behind that child – paediatrician, allied health therapists, medical specialists, social care workers, support workers and so on.  It’s a pretty amazing thing to think that we live in a country whereby we have systems in place to support these little beings that teach us much more than what a result on a piece of paper, or a ‘diagnosis’ name could ever tell us.

Behind closed doors, families are reading, researching, filling out forms all in the aid of trying to make a path for their child to be able to access what is necessary for them to live a fulfilling life – the right health care, the right education, the right for a happy and supported social life and beyond the school years?  A right to be an active participant in their community whereby employment IS an option.

‘It’s tough for all parents” is a common statement we hear. 

The problem with this statement is that yes, of course, parenting is a tough gig!  No denying that.  The issue is when the families of special needs children are made to feel that they somehow don’t fit in to their community because the right supports aren’t in place, because it hasn’t been set up correctly due to lack of understanding of what these families need.

We want what you have!

Access and inclusion for our children and our families to education, parks, activities, fulfilling friendships, fulfilling employment, the list goes on! With careful planning and consideration, all the above can be achieved but there needs to be the right kind of adjustments and supports in place to achieve this.

Of course, this isn’t to overlook some of the great improvements of inclusion and adjustments which are happening all the time through different organisations pushing forward with these initatives, but there still needs to be a lot more done!

We need people to understand that it’s very much a way of life for us, and it’s not a stage that will disappear as time ticks on.  For this to happen, people need to be informed so attitudes can change! 

I hope that in 2018, we continue to see the growing acceptance of all people in our communities, with making the necessary changes to support people who don’t live a ‘standard or typical’ life.  We need to see more diversity and options in our abilities to support each and every person.

We are about to experience a different kind of Christmas this year – our first Christmas without seizures!

It’s been about 5 years since when looming up to Christmas I haven’t been full of anxiety with the anticipation on whether our little Danger would be having a hospital trip, recovering from a cluster of seizures or just be too worn out from his seizures, the side-affects from the meds and the combined pure exhaustion of it all!

I am very good at masking my anxieties, I think you have to in a sort of self-preservation mode.  You have to put on a different face, when you go to work or meet friends for a drink – you have to just push that aside for a moment to be able to function at a different level, I know my life awaits when I return home!  The mask comes off when I can get home and fully relax.  A quiet cry or a quiet wine, to take the edge off whatever I have had to deal with that day.  Pushing down my own insecurities in the process.

For the first time in a long time, I have been able to really slow down and just enjoy the build up to Christmas, the excitement in his eyes for every time we are out we bump into the big man in red!

When Danger squeals ‘Ho Ho’ (his word for Santa!) it fills my heart with joy that he is truly understanding the connection of Santa, and that he is here to bring joy to children and of course, presents!  I didn’t think it would be possible, that so soon after surgery, we would be and out and about meeting different Santas and just enjoying the moment.  His cognitive connection has really amazed me these past few months and the fact his brain isn’t struggling with an obscene about of drugs in his system, as well as an abnormal hemisphere – is a sight for sore eyes!

We have kept it pretty structured this year, with returning to the Christmas Parties that we attended to last year (prior to his surgery).  The difference in attending pre and post-surgery has been pretty eye opening to say the least.

We were very fortunate to be invited to the Westfield Special Kids Christmas Breakfast both in 2016 and 2017, and as it was a local shopping centre and play area, Mikey was very familiar with the space and so were we!  It was well gated and all the volunteers remembered us from last year.  Some even had a tear in their eye when I explained to them that Mikey was now ‘post-surgery’.  They were amazed at the little boy that they could see before them.   Mikey tried to escape a couple of times, but we were onto it, as were the volunteers!

The second big Christmas party was the big Variety Christmas Party at the Brisbane Exhibition Centre.  It is a huge party with loads of families who attend from in and around Brisbane, the Gold Coast and Sunshine Coast.  It is so well thought out and everything is available.  Rides for the kids, Santa photos, animal farms, face painting, the police and their motorbikes and cars, food, drinks, presents and entertainment – you name it, it’s there!  And of course Danger’s favourite – Bat Man!  He squealed again when he saw Bat Man – and ran straight over for a hug.  Bat Man was beaming and it was just such a lovely interaction.  All the volunteers there do an amazing job with the number of families that go through their doors.  Mikey was pretty good with the noise this year, and even though he is more sensitive to noise after his surgery (a side-effect of surgery) he managed it very well.

The days following these big events have also amazed me at how he has re-adjusted.  Prior to surgery, the tiredness following these big days, would see Mikey very hard to self-regulate and ‘just be’.  He would cry for hours and just need constant cat-naps to recover.  This year, we were able to go home, and he was able to self-regulate by playing on his iPad or going under the sprinkler to cool down.

It has been a true miracle to watch the transformation of Mikey as he is being weaned off his meds and coming into his own true personality without having to constantly battle seizures with an abnormal hemisphere – really, in hindsight, that hemisphere didn’t do anything since it was damaged at 10 months, and the left hemisphere started rewiring to bring across the ‘remaining goods’ from the damaged side.

We still feel incredibly lucky that Danger’s surgery has been the saving grace for him and his epilepsy.  And even though his HHE Syndrome is a part of him, it does not own him nor does it define him.  But it has made him who he is, because of the strength he has endured to fight this insidious form of epilepsy and the agonising decision we made as his parents to proceed with this type of surgery.

To simply say, ‘you made the right choice’, feels like a platitude.  It wasn’t really a choice as such, but an opportunity to rid him of his seizures that were hampering any real further development.  It was a slow and carefully measured decision by the top paediatric neurologists in Australia – both in Melbourne and Brisbane.  Those guys don’t just flip a coin!

Danger can now experience the world in his own way with the freedom of no seizures interrupting the new connections his brain his making and developing.  That for me, is the best Christmas gift of all!

I finally watched the movie ‘Wonder’ the other day with my mum. I just loved it and in so many ways, I feel this movie really got it right. It was an insight into a family’s life of living with a rare condition and with the associated issues that this kind of life brings. For me, I felt it struck a great correlation between what you see on the movie screen and real life.

It explored many topics relatable to living as a special needs family. The story was about a little boy – August ‘Auggie’ living with a rare facial deformity. It focuses on the family dynamics; the bullying that arose when Auggie joined a mainstream school and the ultimate friendships that were formed by other kids and adults, once they truly opened their hearts and minds in accepting Auggie for who he was as a person. It showed a family, living their life, just like many any other families but with a very different set of challenges.

It went through the main characters and gave a spin on how their world was affected with having Auggie in their lives.

The big sister could’ve been Danger’s older sister! Feeling that she never wanted to ask for help, to be an additional strain on her parents. No matter how much she felt she was being overlooked she always did the right thing by her brother as she had the understanding and compassion that he needed help differently to her. She was able to push aside her very real and valid feelings of resentment by always choosing kindness towards her younger brother.

No matter how people may have felt in the immediate circle of Auggie, that they were perhaps somehow being overlooked or not appreciated enough, whether it was the sibling relationship, or the relationship between the mum and dad, all the characters were able to put aside those feelings because they had compassion and insight to see something bigger.

And this is the lightbulb moment that I have had for myself this year!

Despite my own internal battle with how I may feel that I can’t be there in the way I would like to as a wife, friend, daughter or mother, it is due to something bigger than myself. Sometimes, we have to stop and realise it’s not about us at all. And if you are lucky, the people that surround you, will appreciate and understand the fact that it’s not about you at all, but something bigger that cannot be measured in any form.

It is simply pushing our own ego aside to help someone who needs our help more. Someone who through no choosing of their own, is vulnerable due to their personal set of circumstances.

Mikey Danger, although don’t be fooled by his middle name(!), is vulnerable along with many of his little friends at school. They are in a secure, gated school because I can’t even imagine him going to a mainstream school – 2 seconds without watching him and he’d be off like a shot! And it really only takes a couple of seconds.

Simple routine procedures like a trip to the dentist means paperwork the size of War and Peace due to his complex medical condition.
**Funny story – I couldn’t get Danger into an appointment until the new year. Bryce gets on the phone and calls me back 2 minutes later and says ‘it’s done, I rang and said my son has half a brain, you have to help him prior to Christmas otherwise we will all be suffering!’ Talk about impact! The stars were aligned and right away Danger and Dad were travelling up to Brisbane for a pre-surgery appointment! Doctors and staff listen intently when you explain your son is living with half a brain (and given the fact normal brain development and function is supposed to be made of 2 hemispheres, you tend to create impact!) Even the doctors cannot predict that a simply GA may go astray. It’s very rare, but it still has to be considered.

So even though Danger is more vulnerable than say his twin sister, his presence and personality IS strong and forceful! Just like ‘Auggie’. With the right supports, and the right people around him, he can achieve anything. When people are willing to push aside their own egos to help these little people grow into adults who are very much part of our communities, is a true gift.

We as a family have been very fortunate this year to have a lot of family and friends that have pushed aside their own lives to stop and help Danger achieve all that he can be.  From both of our mums helping within our home, pre and post surgery, to our own siblings – Danger’s Aunty (Bryce’s sister) and Uncle (my brother) flying from Melbourne to help us (even when my brother’s wife was pregnant with their own baby!).

It is an ongoing process and it will never stop. It will change and evolve over time, but it won’t ever stop.

Families who have children with additional needs/special needs and/or associated disabilities never take for granted the village that they have around them. Whether a small village, a global village or a bit of both. I like to think we have a bit both which is why I feel the support from family and friends near and far is equally beneficial to us in different ways. The joy of being able to ‘facetime’ with our family is so great for Mikey as he can see and recognise who his family are, near and far, he is beginning to make a greater connection to how he fits in to this big crazy world. We have our own little family but we too are part of something bigger.

And to acknowledge and understand that we are part of something bigger than our own selves, is a sure fire way to grow as a person!

my two front teeth... a clear EEG for Mr Danger!

It’s been a massive year, and thankyou for all those that continue to read our Blog and join us on this journey rollercoaster ride!

I think it’s safe to say that 2017 has been our biggest year yet!

Mr Danger and his twin Jaz E began their first year of schooling in Oz – Prep, and Kat finished up her second last year in Primary School.  The twins had very different experiences through prep this year – some negative but mostly positive.  Mikey absolutely thrived at school and pretty much every day of school was a joy for him, in so far as him accessing what he needed to learn with some beautiful teachers (the seizures at school weren’t great!).  Jaz had a rough start to her schooling life, but we hope that will turn around as we get to the bottom of what she needs in the way of therapy and helping those understand her, for her best to thrive.

In any case, Prep was a massive learning curve for all of us!

Mr Danger had his much anticipated and long awaited hemispherectomy surgery in July this year.  His 2 hemispheres were disconnected with the abnormal hemisphere, still in his head(!)  This type of hemispherectomy surgery is called a ‘functional hemispherectomy’.  His follow-ups with the surgeon and neurologist were quite astonishing.  It is a very surreal moment when you put your absolute faith and trust into the doctors that are dedicated to their work of helping children with catastrophic epilepsies.  We cannot thank them enough and I think the smiles on their faces in Mikey’s post-op follow-ups was enough for us to know how happy they were to see that they had truly given a little boy his life back!

We are still on cloud 9 about that one, and will be for some time!

The other big event this year, was making it through my dad’s one year anniversary of his passing.  God know’s how my mum, brother and myself did it.  I guess for me, I focused on the kids and took it one day at a time.  It is still very hard as time goes on, time sure isn’t a healer in this case.  Danger asks about his Poppy daily and we talk about him all the time.  Mikey’s expressive language has come on in leaps and bounds since surgery, and the love for his beloved Poppy, is expressed aptly.

As a family, we have experienced extreme highs and lows this year, but I think we are coming to an even space now, where things are being fine-tuned to balance out the bullshit other stuff!

I am hoping that 2018 brings our family more peace with living a life seizure free and being able to enjoy all that it entails!  It is always bitter-sweet however, because when you are catapulted into this life (my favourite term for special needs parenting!) your circle starts to change and evolve as you meet others in similar territory.  Unfortunately, not all of us have happy second-chances and we are reminded daily how very fortunate and ‘lucky’ we are.

I read this quote the other day, which summed it up beautifully between the meaning of sympathy and empathy.  I do believe that is why many special needs parents feel differently towards their children and because of the uncommon life we are living, we feel differently about things.  We know all to well, how quickly healthy babies/kids lives can change in a second.  It has happened to us.

It is just the way it is, it is something that is learnt.  No matter how hard you try, you cannot imagine what life would be like with a child with a disability, until you are living it.  It is a different life and that is ok.  Because I have finally understood that to be Mikey’s mum is a privledge and something I never take for granted.  It is not to say we don’t have bad days, we all do – we are all human, but there is an understanding in our family, that Mikey needs extra help and will need it for the rest of his life.

Apart from when it comes to motorbikes as he’s got that!

We wish you all a great Christmas with your families – with much love and peace 🙂

The Wiltons
xxxx

sympathy-is-easy-you-have-sympathy-for-starving-children-swatting-5358903

 

 

 

The Time IS Now.

THE TIME IS NOW.

Imagine, as soon as you give birth, your baby is whisked away, and not only are you are on a different floor in the hospital, you can’t hold your baby for days.  No one told you about this.

Imagine, feeling so alone, that to ask for help, paralyses you with fear because you are even more afraid of the ‘not coping’ tag associated when we do ask for help.

Imagine, you pluck up the courage to ask for help but no one answers.  No phone calls, emails or text responses – no family, friends, health workers to support you in this foreign situation you are in.

Imagine, not knowing the path that you are now faced with, because you didn’t plan for this.  This was out of your control.  This just happened.

Imagine, being told that your child ‘has a very high chance’ that they won’t meet any of their milestones.

Imagine, battling with the local school board to gain a place for your child’s education, appropriate for their needs.

Imagine, your child being expelled due to ‘bad’ behaviour.

Imagine, people coming and going from your home constantly.  Therapists, doctors, social workers, support workers.  Imagine having these ‘extra’ people in your home during the most intense times of the day – even when you and your partner aren’t speaking to each other.

Imagine, a medical professional rolling their eyes at you because they are questioning your parenting skills.

Imagine, your family or friends doing the same.

Imagine, being suggested to that ‘it’s all in your head, you are over exaggerating or that your child will grow out of it’.

Imagine, because all the above is very true behind the closed doors of many in our Australian special needs community.

Now imagine this.

Imagine, being in the same room as your baby and being able to stay with them for as long as you like.

Imagine, you are not alone.

Imagine, family, friends and health professionals listening to you and not asking you to justify the reasons behind what you are saying.

Imagine, there are others who have walked a similar path before you.

Imagine, being supported by a group of parents who get this life.

Imagine, your child being supported in an education setting appropriate for their needs, in which they have the opportunity to flourish and grow.  Misbehaviour is a sign that action is needed to help the child, not punish.

Imagine, living in a society and having access to appropriate supports for both your child and your family.

Imagine it.

THE TIME HAS COME – THE TIME IS NOW.

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