The day I had a bath!

respite!

What’s so interesting about that, I hear you ask?  It’s because the bath was following a 4 hour respite package which has been long overdue (plus I had a bath just by myself, which is always rare!)

7 years we have travelled along the special needs path and like so many other families, we have just bumbled along doing the best we can, running on empty and hitting the exhaustion hump more times than I care to count.

With our respite, it’s come at a time where, we again, are undergoing transformation and change.  Oh, isn’t life always the way – it sure seems to come around in circles.  The latest change is that I’ve returned to work full time after working part time for 12 years.  To say it’s a huge adjustment is an understatement, but for the kids and us as a family – even more so.

The husband has had his own dramas too, with ending up in hospital with a staph infection and a bout of scarlet fever. During that time, we were very lucky to have my mum able to step in and help while I was able to continue to go to work, and not actually lose my job in the first few weeks that I had started, never a good look!

This respite package has been given to us by an organisation that has seen us struggle and like many others, we are still waiting for our NDIS package. In the past, accessing respite was always through an emergency means – in which case it’s a short term answer to help you out of the rock bottom you have hit. Ultimately, we want to try and avoid hitting rock bottom but we can’t always do that at times.

The respite not only helps my mum who stepped in and stepped up during the hospital stay, it also means that we can have a bit of a break while we regroup ourselves again.

The thing with special needs parenting is that while these hiccups of life intervene, life still goes on.  There are still the therapy appointments, schooling, the toileting dilemmas, the meltdowns, the communication issues, the health issues, the medications to be administered all under the watchful eye of my husband and myself.  Becoming unwell ourselves, is another pressure to our already overloaded plates.

We took off to our respite with a bit of a spring in our step.  We left our twins with the carer, while we took our eldest out for some lunch at a new shopping centre.  Nothing like a new shopping centre to get excited about (said no husband ever!)

There was live music and many people(!), and in those moments where I was siting in the busy and bustling food court, I closed my eyes and almost imagined I was in a different time.  I was back in the days, when I was young and free, at a music festival.  I was sitting in my chair, swaying to the music, with the young guy on his acoustic guitar no doubt singing while dreaming of playing to a full stadium one day, and not in a food court.  I was so lost in the moment, I was about to get a lighter (my phone) and shine it up like you do at a concert, but then realised where I was.  Instead, I put my phone away, and realised that sometimes, it’s just a little mental break from the ‘thinking and doing’ that we are programmed into when we become parents.

As a parent of both a typically developing kid and 2 kids with disabilities, I know this all too well.  It’s equally intense on both sides of the coin, but with special needs parenting, we have the added intensity of the isolation that comes from parenting children with  disabilities.  It’s not the ‘norm’ so we are always fighting; fighting the system, fighting the judgements that come our way and it’s impossible to truly understand unless you live it.

So, a little bit of respite, where I thought I was at a music festival, was just enough for me to know that I have hit the point where just a simple bit of music, could pick me up.  And that is just the kind of respite I need to keep going.

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.

What a wonderful time of the year!

People are such a**holes.

I was going to give this a different title, but I thought – if the shoes fits?

It’s that time of year when people turn into assholes, (or see them turn into a bigger asshole than what they have been throughout the year).

The past 2 weeks has seen me attending both of Danger’s sisters dance rehearsals.  OMG.  AND WE WONDER WHY OUR KIDS ARE TURNING INTO ASSHOLES.  Please.  Why do some parents behave this way?  Shouting at their kids to get their costume on?  Yelling at their kids because ‘look, you always do this!’  A young dance assistant shrieked at me ‘No Parents Allowed, No Parents Allowed!’.  It’s a bloody rehearsal in the local hall.  Not backstage on Broadway!  I was helping my daughter who cannot dress herself in a tutu because, well she is 6 and IT’S A TUTU!  Another parent LITERALLY hip and shouldered me out the way to get a bobby pin and a pair of Nanna’s, yes NANNA’s (sorry Mum, not you!) bowled me out the way to get to the coffee cart.  I kid you not.

Now flip this, the same dance school with special needs children, would see a very different group of people.  Calm.  Still excitable, but not anxious-ridden.  No silly clown makeup, sensory issues of course, would put a stop to that.  Children being children, parents enjoying the excited atmosphere rather than a tense and anxious one.  Parents helping parents.  I’m not bragging or boasting that it would be more enjoyable, but well, yes it would.

I can’t tell you the times I have wanted to say to some people, do you have any idea what an asshole you look/sound like right now?  But then I would feel like a bigger asshole.

I don’t mean to brag (yes I do) but being mum to Danger is not only rewarding but grounds me.  I cannot believe the crap that goes on with people when their only problem is finding a bobby bin.  Or maybe it’s deeper than that.  We always hear to treat people with kindness, we never know what they might be going through.  Such crap.  I’ve seen, and I think we can all agree on something for once, that sometimes people are just assholes.

People can be rude, ignorant and selfish.  They don’t believe in stopping to help anyone else, for fear it will slow them down to reach their end goal.  Which for the purpose of this post is the SAME BLOODY DANCE HALL WE ARE ALL GOING TO ANYWAY!

I almost threw up in my mouth when I heard some parents boasting about how long it took them to do their child’s makeup.  I know, I know, now I sound like a bitter asshole, but I can’t help it.  It’s such CRAP.  YOUR KID LOOKS LIKE A CLOWN, OR WORSE.

Where is the joy of the practice, the performance and the love of dance?  It’s not within the parents, that’s for sure.

Dance Season has brought out the worst in a lot of people, including me.  I can’t stand the bullshit, when I know how some of Danger’s little friends are really hurting at the moment, and in hospital because of the unfairness that life can often dish out.

Oh to dance, what a joy and blessing!

It seems that despite every Tom, Dick and Harry saying they know someone with a disability, when they meet Danger and that ‘he looks really good’, just proves that it doesn’t really mean Jack.  So does that mean, in turn, you know by association, what it’s like to have a child with a disability?  So what.  I know someone too.  I know lots of people.  I know lots of parents with children with aspergers, autism, cancer survivors, Duchenne muscular dystrophy, intellectual disability, cerebral palsy but I still wouldn’t have a clue what living with their child’s condition is like.

All I know, is yes, we are all struggling, but some have a much rockier path than others.  Some don’t have a roof over their heads, some are too sick to dance.  But if your child is dancing in a show, than be thankful that they are able to enjoy that.  Don’t stress them out with your adult asshole ways, please.

But what would I know?  I’m just an asshole too!

 

SNUG Retreat – What’s it all about?

Recently we headed down to a SNUG  (Special Needs Unlimited Group) Family Retreat at Lake Macquarie, NSW.  It was to celebrate Danger’s surgery and it was our first family getaway since what has seemed like forever!  We were accepted into the retreat program earlier in the year, after filliing out a bit of paperwork etc etc!

SNUG runs several times throughout the year and is supported by the Steve Waugh Foundation for Rare Disease, in conjunction with the Newcastle University.

We decided to break up our drive by stopping in Coffs Harbour for the night.  It was our first long drive with all the kids, and particularly as we hadn’t done this before, we didn’t want to jinx ourselves!  We even managed to stop in a lovely country pub where we all SAT AT A TABLE and ATE DINNER!  It was pretty surreal as previously, we could only go to places which were common to Danger, otherwise anything out of his comfort zone, we would have had a very different experience.

I think it’s hard to understand what it’s like for a family like ours, when you aren’t living a similar life.  And that is fine.  I don’t think it’s possible to understand, nor explain, what it’s like to know that to go out and grab a meal somewhere different is a really hard thing to do when you have children who do not understand social ques, behaviours, have sensory issues, have multiple challenges, including brain injuries, can’t physically sit on a chair for long periods due to muscle control, or lack of muscle control, just to name a few!

But the thing is, for the first time EVER, we were able to do this and had a great hour before it was time to go!

We arrived late in the afternoon at the retreat and met a beautiful family who were from Melbourne.  Later that night, we were joined by another family, also from Melbourne!

We had a great couple of days being able to do things with our new friends. as well as our families, that we just wouldn’t have had the opportunity to do otherwise.  We went ice skating – where we were able to take the kids on the ice rink in a wheelchair.  Danger also had a go of skating himself, after he saw his big sister do it!

We had a great music therapy session where the 5 of us had our own music therapist. Katrina and Bryce have never been to music therapy before and were a little bit too cool for school at the start.  I said to them ‘just wait, this is what the twins have done for a number of years, and it is so great.. you have to experience it first before you judge it!’  Afterwards, they were beaming.  They had a ball!

We were able to do a ropes course, archery and go on walks by the lake.  The rains came in so we weren’t able to do any water based activities, but next time there is the option of swimming, sailing and canoeing!

The organisers and volunteers at the SNUG retreat were fantastic and so accommodating.  We were home away from home and we all just made the most of our time there.

It is hard to meet other families in settings like these, as a lot of the time, you meet through hospitals, school networks or early intervention networks.  It was nice to be able to chat in a beautiful setting about life in general.  People assume you are just there talking about your kids all the time!  It’s not the case at all!  You strike up conversations about all sorts of stuff but most of all, it’s the support we get from one another.

Even though our backgrounds are all different – one thing ties us all together.  All our kids lead challenging and complicated lives due to their conditions.  It’s not typical development, it’s not a typical life.  It’s a different life for sure but it’s very much a rewarding life.  We often see things that others don’t always see when rushing through the days.

We are, in a way, forced to slow down, because despite the therapies and the appointments – our kids are still kids.  They want to experience all the things in life, that many others do.  Typical kids, like my eldest, generally do things very quickly and move onto the next milestone and so and so on.  Before you’ve even realised, the training wheels are off on their bike and they are flying down the driveway, leaving you far behind, and that’s ok!

What’s also ok, is their sibling, who is still learning to ride a bike, whilst having the challenges of hemiplegia and CP, and needs a bit of extra help from mum or dad to help steer and keep them moving forward.  Even though they are all developing at different rates, and hitting different milestones at different times, it’s all about progressing and learning.

You want to know what else ties special needs families together?  They have a wicked sense of humour.  But what happens at camp, stays at camp, so I can’t disclose too much about that!

We hope to meet at the next camp again next year for our reunion and even get a few other families along for the ride too!

 

 

Sound bites of happiness

Mr Danger’s feed back from school has been nothing short of positivity, really there is so much doom and gloom at times, that a cheeky little fellow who has undergone such radical surgery, has for what it seems, beat epilepsy and is thriving since his surgery!

I want my blog to be a place of spreading hope and awareness. I’m not a bullshitter though. I will tell you when it gets tough, like I’ve done in the past.

We have a new life (more of that later!) but I’m still very much on my anti-anxiety meds. I am trying to breathe more, and adapt to this new way of living. I’m still in shock of not having my dad around. He was a huge, and will always be, a huge important part of my life. I went to him for advice (how do you empty a pool?!), debates and just general chit chat. He was my buddy. I miss him and my heart hurts.

I don’t care if people roll their eyes, (their deal, not mine) I loved him and he made me proud. I drove him crazy and vice versa – you know, Papa Don’t Preach?!

I allow myself to grieve because if I don’t, it manifests into something much worse. Almost like living a double life.

It is hard for Danger and Jaz E to express themselves. Jaz thinks he’s at the old house, until I gently remind her he’s not. Mr Danger points at buses and says ‘Poppa’ (he remembers well that he was a bus driver in his later years).

I get sick of people implying ‘move on’. It’s a process and I’m going to take all the time I need.

And just like my kids, they need the time too.

Life is short enough and flies by so very quickly, moving on happens regardless because that is life. We make the choice each day to get up and move along.

So it brings me full circle to what this post is about.

The fact that I have had such lovely letters come from his school regarding his ability to concentrate more, be happily involved in the class, makes my heart just that bit more happy.

And having a happy heart is good for me.

*as I wrote this, a butterfly was dancing at the window 🙂

This post is brought to you by: A Peppa Pig Marathon and Chicken Nuggets Gorge-Fest!

Living on the GC has its perks.  We certainly aren’t the centre of the universe by any means, and we are still considered ‘rural’ by some standards – ridiculous, I know! Have you seen the skyscrapers?!

Anyway, a lot of our ‘therapy’ is done outdoors with Danger.  We have a wonderful team of therapists helping Mikey strive to be the best he can following his surgery.  We have found a lot his therapy, since returning home, has been everyday stuff – walking on the beach, swimming, horseriding (hippotherapy) and riding his bike.

Mikey D had only undergone therapy 2 weeks prior to when his rehab surgery begun in hospital and he was OVER IT.  He was over people interrupting him during his Peppa Pig Marathon and Chicken Nuggets Gorge Fest.  When you have a dietician tell you if you don’t eat all the chicken nuggets you can, that they are going to stick another nasogastric tube up your schnoz, then you better eat!

We had a bit of a show-down with the Rehab Dr – who was lovely, but again didn’t know us or Mikey.

Picture this – We had Mikey strapped in his stroller, Peppa on the iPad and Mr D was chewing on a nugget.  The backs were packed, we had folded up the god-awful couch/bed and we were ready to leave!

The Doctor was a little concerned that we were going so soon and after giving our reasons as to why we needed to get Danger back home – including the fact he was about to eat the hospital out of nuggets!, she reluctantly rang her superior, who said, let them go, the kitchen can’t cope!

We went back to hospital only a couple of weeks ago to check in with rehab.  They were amazed at the comeback Mikey has made, with not only movement, but communication, speech and overall functionality.

We are very fortunate that he has responded so well to his daily routine of bus, school, car, park and beach.  These things may seem very simple, but they are part of a routine that he feels confident within.  This allows his growth.

Of course, there are times, when we have to push him out of his comfort zone – and we do.  I feel, as well as Bryce though, that as time goes on, the most important thing for us, is to see the cheeky, happy confident little boy we have enjoy the experiences that he is able to – just like any kid.

He will have his challenges but life isn’t a race, that’s what the motor track is for!

A big bloody week!

Well this was a big bloody week!

Mikey Danger and his partner in crime, Jaz E turned 6! It only seemed like 12 months ago they were 5.

The pair are just about to enter the last term of grade prep, both have tried super hard this year with everything they’ve turned their hand to, and ohhh yeah, Mikey D had a bit of surgery 😉

It is quite bloody amazing what the human body can do when faced with huge challenges, not only can it achieve, it can overcome and adapt also.  It helps if you have youth on your side too at times, or maybe it’s just Danger’s attitude,  he’s not allowing anything to stop him now!

They were more settled this week, we watched Charlottes Web only 47 times and the way he asks for the movie is so sweet, I just can’t resist, plus it’s not Peppa.  He moooo’s and when I say ‘charlottes web?’ He then oinks!

It’s my favourite conversation so far 😉