The story of a family living with lots of love and a little autism!

Hey everyone :)

My stats are showing me that I’m still getting a lot of hits every day on this site but I’m no longer here !!!

I will be closing the Madhouse down very soon so soon it will no longer exist but I am still writing most days over at:

HTTP://WONDERFULLYWIRED.WORDPRESS.COM/

and have been there for months now!

Please remembers that you need to re-subscribe over at the new blog if you’re only subscribed here because it doesn’t carry over. And if this blog is the one listed on your blog rolls, please change that over too.

Cheers :)

I’VE MOVED!

THIS BLOG HAS MOVED…

I CAN NOW BE FOUND AT:

http://wonderfullywired.wordpress.com/

I DID IT!!! Waahoooooe!

Ok…..Cue the happy dancing.

Fiona a.k.a the least technically minded person in the entire world, has managed to export all of this blog over to my new blog WONDERFULLY WIRED without a hitch!

So from now on, I will be writing exclusively over at the new blog.

So if I am on your blogroll – please change the link to : http://wonderfullywired.wordpress.com/
and if I’m not on your blogroll……why the hell not?!
LOL ;)

I am so darn proud of myself for managing to accomplish this!

The only things that didn’t transfer over were my site stats which sat at 37,996 ( I know! I can hardly believe it either!) and also my subscribers .

So PLEASE re-subscribe to the new site if you were previously subscribed here and tell all your friends to visit me!

(I know…..shameless plug there but I guess I’m more competitive than I thought! )

Hope to hear from you all REALLY SOON
<3 Fi XX

Quack quack

Does anyone know what I mean when I say that sometimes, autism just lays dormant for a while but every so often because of it, life just comes up and punches you square in the nose?!

Well, that’s what happened here recently.

Harley has been prescribed sleeping tablets and anti-anxiety meds by his paediatrician and let me just say that they.are.an.absolute.Godsend!

We didn’t think think that they were doing much until recently (a few nights before coming up here to mum’s) when we inadvertently ran out.

The worst part was that we only had an expired prescription that the pharmacy therefore wouldn’t fill and let me tell you…..there was brown stuff flying off fans all over the place that night!

That night, I actually sent Mr Patient down to the all-night pharmacy and told him to do whatever it took to convince them to give us JUST ONE tablet to get us through until the next morning when I could take him to the Dr to get a new script.

They must have felt sorry for him. (Seeing a 46 year old man begging for mercy would surely move even the hardest of hearted people) and thankfully they came through for us giving us a couple of tablets with the strict instruction to get straight to the Dr the very next day, and peace was restored for another day.

 But it shook me up to be taken back to those horror days even if only for a very short time.

The next day, (the day before we left)  we sat in the stinking Dr surgery for THREE AND A HALF HOURS only to be told by our lovely family GP that he was unable to prescribe such strong medication and that we would have to go to the pediatrician who has all his details on file.

So what did I do?

I cried. 

And no, it wasn’t a manipulation cry that I turned on to get my own way. It was because I was bracing myself for the the absolute horror that possibly awaited us when Harley is off his  meds. I knew that there was no chance of getting in to see a pead up at Mum’s and we were leaving the very next morning.

I asked the GP why he wasn’t able to prescribe it and he replied that he has NO RECORD of EITHER of the boys having autism and that it is a strong medication that isn’t usually prescribed to children unless under strict supervision.

Um…..WHAT??!!!!!!! No record???

He clicked on both of the boy’s files on his computer screen and showed me the dreadful truth.

After I picked my mouth back up off the floor, I asked him how on earth this was possible????

It didn’t make any sense…..this surgery had referred me to the pediatrician BOTH times in the first place? Surely there was SOMETHING there?

A letter from the pediatricians’ receptionist?, a diagnosis confirmation letter?, a “thank you for referring your patient to us” note.

Nope.Nothing! 

Cast your mind back if you will to the recent CATS  assessment that Lucas underwent and the fact that we had to wait 18 months after his original diagnosis to even work our way up the waiting list only to be slotted in at the last minute into an “emergency spot” that we were told is held for when “paperwork gets misplaced”…..

 Hmmmmm. Something smells fishy here. The Pediatrician’s receptionist has failed to pass on info again! 

Or is it?

I am trying not to remember that this is the very same Dr surgery that dismissed my brain tumour for 2 years as “post- natal depression” or “new mother anxiety” and my favourite:  ”sleeping funny on your face causing numbness and loss of sensation”!!

Laughable now, but not so much then!

They sent me away six times dismissing my symptoms every.single.time.

And afterwards when I went to them with concerns about Harley and my inability to pacify him, I was told that he was a “normal” baby and that I should just learn to cope.

Why did I go back?

What the heck is wrong with me??

*rolls eyes dramatically all over the place*.

Anyone know a good Doctor and pediatrician in my area? Lol

Change can be good!

Well hello all you faithful Madhouse followers and hiya to those newbies that have just found me :)

As you know from my last post, I have now had this blog up and running for 12 months now. This is exciting for me but with me being me….I have decided to keep in character and toss things around a bit and mix it up a little.

I have changed a LOT over the last 12 months and so in fact, have my entire family.

When I first started blogging last year, the title “Welcome to the Madhouse” really described how I felt most of the time so it was extremely apt.

Just simply surviving the daily ups and downs of raising autistic children made me feel like I really was literally going insane!

However, this year-I am still far from having it all together, but I don’t feel as out-of-my-depth as I did when I first started blogging.

As a family, we have developed new techniques, and on a more personal level-I have sought help and learnt new coping strategies and I feel a lot more capable as a mother than I did 12 months ago.

Don’t get me wrong though, this household is still ridiculously loud, action packed and overly busy-but lately, I’ve become less focused on how mad it is and more focused on how “wonderfully wired” my kid’s brains are and I want to celebrate their uniqueness.

So that’s why I have started a brand new blog called “Wonderfully Wired”.

I first considered changing the blog name a while back and set up this new one around 6 months ago, but I was never sure if I was ever going to go ahead with it or not so I just sat on it.

I have put a lot of thought and prayer into it and I feel as though the time is finally right now.

I still haven’t decided whether or not to transfer the entire blog over to this new URL or whether to just bring over my favourite pieces of writing.
Next week, after the kids go back to school and I have time to properly set the new one up, I plan to stop writing here and start over there full time. So there is still time to get used to it :)

Whatever happens, all my older posts will still be able to be accessed whether via the still standing Madhouse blog or via the new one so I’m not completely eradicating my past or anything silly like that!

This decision also came about as I journeyed around blogland and noticed just how many other blogs had the word “Welcome” at the start of them and how many Madhouses there were out there!

And there are at least two blogs that I know of that are also specifically autism blogs with similar titles.

I freely admit to not putting too much thought or effort into the title when I first started Madhouse and I clearly hadn’t researched it very well before I started, but this new one has had careful consideration put into it and this change is onward and upward as far as I am concerned.

The new url can be found *here*

If you are already subscribed to the Madhouse blog, please note that the subscription will not be automatically transferred over to Wonderfully Wired. You will need to re-subscribe…

I hope that all my faithful followers will come on over and join me at my new home: Wonderfully Wired!

Hope to see you there :)

Fi x

Edit

Good day Bad day.

Ella checking her data

I don’t know if this happens in other households or not, but I have noticed somewhat of a theme happening in the Madhouse lately.

I’m calling it the good day/bad day principle.

I have noticed that whenever the children have a good day (reasonably calm behaviour, agreeable attitudes and steady temperaments) it is invariably followed by a very bad day (hot un-controllable tempers, fighting, arguing and difficult behaviours).

I don’t know why this is but I have a few theories.

Firstly, I have wondered whether the kids use up so much energy trying to fit in and do as they’re told on a good day, that the overflow of this mental exhaustion trickles into the next day therefore causing it to be a write off?

And secondly, I wonder if the amount of trouble that they seem to get into on bad days leads them to try harder the next day and the vicious circle keeps repeating!!

I’m not saying that my kids are any worse than any other children out there but I can usually tell within the first ten minutes of any given day what I can expect for the next 12 or so hours!

My kids really are great most of the time and I can honestly say that even on their worst days – they are mostly manageable. But I’m still baffled as to why????

It’s not always as clean cut as 1 good day / 1 bad day…..there can sometimes be a few good days followed by one bad day or several bad days with a surprise good day thrown in (which is always nice!) but there is usually some sort of predictable pattern. 

I am thankful that my children do present very differently to each other on bad days though.

Harley is (and always has been) by far the most vocal and draining child. He screams, hits, pinches, bites, sulks and cries. Lucas whines and whinges but at the moment, it’s Ella who is concerning me the most.

Ella withdraws.

It sounds great right?

Well…yes, she’s definitely quieter and less demanding but there is a real danger of her shutting down so much that she becomes unreachable.

Yesterday, she spent over an hour walking around in a big circle in Mum’s courtyard counting her steps with a pedometer and measuring the calories that she has burned.

Sounds hilarious I know….I laughed too at first, but now we are into day 2 and she’s at it again.

Her and Harley had a sibling fight in a coffee shop over the most ridiculous and insignificant thing this morning, a lemonade bottle!

They both reached for the same one (even though there were 3 of them and they were all identical) I told her to let go of this bottle because Harley was starting to lose it and it wasn’t worth setting him off into a full-blown meltdown. 

I reminded her that because she’s 11, that taking the higher road would be wisest as it was the path of least resistance and that she wasn’t going to miss out anyway.

Well….cue the pre-teen silent meltdown!  I got the dagger eyes, the pouty mouth and the sneer and she promptly picked herself up and walked over to another table and turned her back to us.

All of this was done silently.

I have tried several times in the last couple of hours since, to talk it through with her unsuccessfully. She has completely shut down and pacing is all that she seems to be able to focus on at the moment.

She is counting, adding and analyzing every step. She stops momentarily to inform me of how far she has walked then goes immediately back to the pacing.

Around and around and around in circles.

Over and over and over again.

It still amazes me that friends tell me that they can’t see any aspie in her.

Oh well, at least tomorrow is set to be a good day based on the pattern that has emerged this holiday.

Already?

I knew it was close but, It probably would have passed without me even realising it. 

I hadn’t written it down in my calendar and surprisingly, wordpress doesn’t alert you to the fact either. But this morning, I received a text message from my BFF saying “Happy blog birthday”  and I thought ‘Wow….really?’ 

So it’s been a full 12 months since I started rattling on about every thought that enters my head!

I occasionally look at the numbers and it never fails to fascinate me that a boring old housewife from Australia has managed to write 415 posts over the course of a year!

Well….416 if you count this one!

One of the things that has worried me over the course of writing this blog is that my penchant for being brutally honest would drive people away but in fact, I have found quite the opposite!

I have had many comments and personal emails thanking me for laying it all on the line and telling it as it is. People tell me that my honesty makes them feel like they are not alone and not the only parent to feel helpless and out of their depths.

I don’t do this for any other reason than because it’s the only way I know how to be.

I don’t do fake.

I can’t write happy posts when I’m in the pits of despair.

I am NOT always able to see the silver lining and I don’t pretend that autism is all happy sailing.

I was concerned that my heart-on-the-line style of writing was harsh and too confronting.

I have considered throwing in the towel and quitting blogging altogether on countless occasions this year, but it turns out that this is exactly how a lot of other autism parents live as well.

I now know that for all of the glass half-full writers out there,  there are also a lot of us who frequently tread water trying desperately to stay afloat.

But to be fair- I do have days where I find myself jumping for joy on the mountain tops to celebrate what would seem like a small achievement to those who aren’t in the know!

Over the past 12 months of blogging, I have met many wonderful people online and have had a lot of people that I know in real life approach me and tell me that they never realised just how much families with autism go through.

And if this last year has only brought awareness to only a handful of people, than that’s a good start as far as I’m concerned. I realise that I only cater to a handful of readers out there but I will continue to blog throughout my happy days, sad days and everything in between for as long as I need to.

So thank you to all my faithful followers. Your comments and input and support have touched me in ways that I could never fully explain.

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