When your offspring embarrass you!

Sometimes, my son REALLY doesn’t know when to talk and when not to!

image from bbc.co.uk

We had Mr Patient’s sister and her family from Adelaide and his mother stay with us last night. We haven’t seen them in 6 years. That means that Harley was only 2 when we last saw them and they had never even met Lucas!

Their daughter’s (my nieces) *Greta and *Kate are absolutely lovely. Harley took a particular liking to Greta who is almost 14. He let her carry him everywhere (hehe – she didn’t realise that he was just too lazy to walk!)

The girls came with me as I drove to collect the kids from school and pre-school yesterday afternoon and we had a great time catching up.

As we were pulling out of the driveway from pre-school, Harley calls out to Greta. The conversation was hilarious. It went something like this:

Harley: “Greta, do you know what?”

Great: “What?”

Harley: (launching into a monologue) ” I am a BIG aspie. I have aspergers, I am on the spectrum. I am a spectumite, I am wired differently, I am unique, my Mum tells me that I am special and I am smarter than most people” (and then he took a breath!)

Greta: (looking at me questioningly) “Really mate?…..that’s nice”

Harley: “Yep, so is Lucas. He’s a smaller aspie than me though and not as smart.  And Ella….she’s an aspie but doesn’t want to be so she pretends that she’s not”.

(At this point Ella cuts in with “shut-up Harley….you are SO full of it”).

Harley: “And Daddy…..you should SEE him ! Woah……Mum always tells him that he’s carrying on like a 2 year old. Once she told him off for giving her autistic sperm!”

Me: “(absolutely mortified and wondering how on earth he knows that?) “That’s enough Harley…I think you’ve finished talking now”

Harley: “No, I haven’t I still haven’t told Greta and Kate that you are an island.

Greta: (looking at me again) “What does that mean Aunty Fiona?”

Me: “Well….(I start realising that I couldn’t dig my way out of THIS one!) it means that I am the only one in our family who isn’t suspected to have aspergers. That is an autistic spectrum disorder that basically means that I think a little differently to how they do.  There is a saying that I am an NT island in a sea of aspies. NT means neuro-typical or “normally wired” if you like”

Greta: (nodding) “Oh, now I get it”.

I knew I needed to change the subject as I KNOW how full-on and uncensored Harley can become when he’s not kept in check!

I look in the rearview mirror and glance at Harley who is licking the car window, I see my window of opportunity and launch into it head first and say ” So…who wants to see a bis splash?”

“Me, me, me ,me!” yell the boys in unison as I deliberately drive through a massive puddle that’s on the  side of the road. The wheels make a big whooshing sound as I accelerate and the entire vehicle is covered in dirty rain water and mud!

The wipers work madly trying to clear the windscreen and I smile as they cheer and start chanting “Do it again, do it again, do it again!!”

Then I relax back into my seat as the awkwardness of the above conversation recedes into the background now over taken with giggles as they watch the mud drip off the windows bit by bit and the rain make patterns on the windows as it gently washes the splotches off.

My kids are great but GEES they put me in some sticky spots!

The difficult decisions….

Last night Mr Patient and I had to make a difficult decision.

We tossed it over for a couple of days before coming to the conclusion that we had to change our RSVP details for a very close friend’s wedding that’s in only three weeks time.

The wedding is being held 600km away in my home town and the bride is my BFF little sister.

She is marrying a lovely guy and I know that they will be very happy together and I’m very excited that I will still be going.

Originally all 5 of us were attending and I had already organised all of the children’s outfits and made plans towards keeping them occupied during the ceremony but despite all of this -I was still harbouring quite a lot of doubt and trepidation.

After our looooong drive home from Mum’s yesterday, we decided that we didn’t want to take our chances of that happening again. It would have been a very quick trip up with us not arriving until late Friday night – the wedding on Saturday afternoon and then leaving again the very next morning.

There is just no way that my boys could handle such a busy weekend. (Well not without us copping the consequences later)! So we have made the decision that Ella and I will fly up together on the morning of the wedding and the fly back home again the next morning.

It means that Ella and I will get to spend some girly time together and the boys are planning a movie, pizza and popcorn night in front of the television!

I rang the bride and her mum yesterday to break the news and I felt TERRIBLE doing this to them -especially so close to the wedding date but they.were.amazing.

Both of them were so understanding and so compassionate. I cried when I hung up the phone because I felt like such a cad….

They have both known me my entire life-our families grew up together so our friendship is not just one of casual aquaintance so for us to pull out is a REALLY BIG DEAL!

I know that when the rubber hits the road that I have made the best decision for my boys and for our sanity (and theirs as well) and I know that our friends really are ok with this…..so why do I continue to feel like a wretch.

I need to get over myself I think.

I clearly haven’t gotten to that place yet where I stop worrying what others will think of me.

I know I’ll get there one day, just not yet

It all comes back to autism

Yesterday we drove the long haul back home from our holiday up at Mum’s.

It should have only taken 6 hours…..but …due to heavy Easter traffic and a few motor accidents….it took us a whopping 9 hours!

And the extra 3 hours in the car with the kiddos was NOT my idea of fun let me tell you! But to their credit…..they handled it quite well.

We arrived home at about 9pm and put the kids straight to bed. Mr Patient unpacked everything from the car and we both took one look at the pile of suitcases and bags that were covering the lounge room floor and promptly decided that it could wait until tomorrow.

We made a cup of tea and sat down and exhaled for the first time.

Then it happened…….I burst into tears.

image from mitchieville.com

It wasn’t just a sniffle and a couple of tears trickling down my cheek – no, it was the really ugly cry. The one with the sobbing, the snot and the in-coherant words!

It all hit me at once. I was back to real life. 

That means school, therapies, homework, a constantly late home husband and a to-do list that’s ALWAYS longer than there are hours in the day.

And I know how exhausting my life is. I wished the same wish that I have wished for about 8 years now……that my Mum lived closer and that I didn’t have to keep pushing this damn elephant up this damn mountain!!

And as Mr Patient and I talked it out….I had a real light bulb moment (or Oprah moment as they are also known).

I realised that EVERYTHING that I am unhappy with in my life at the moment…..All comes back to autism!…

Let me explain:

I verbally listed to my long-suffering husband, all the things that I wished were different:

Firstly, I have wished that I lived closer to my parents for 8 years now….how old is Harley?….that’s right..8

I coped fine with Ella for 3 and a half years, but from the day that Harley was born, we have struggled  immensely with him.

The reason? …AUTISM.

And take the kid’s school situation. The support team at the school is absolutely amazing, the problem is that there simply isn’t enough of them to go around. This results in Harley not getting anywhere NEAR the aide that he requires and we KNOW that Lucas won’t receive it either when he starts next year.

The reason this is an issue for us?…..AUTISM.

Next there is the friendship thing…..sure we have some really wonderful and genuine people in our lives right now, but I could count the people that I can actually guarantee would be there for us in times of need on both hands.

And why have a lot of our friends evaporated?……AUTISM.

What about the money thing? Where does it all go nowadays?

Let’s see….there’s speech therapists, OTs, tutors,psychologists,paediatricians, GPs,medications, gluten-free diets, etc etc etc…..and why do we have all these expenses?

That’s right AUTISM….is anyone else sensing a theme here?

Rather than go on and on about all of these crappy things and the REST, (I think I’ve made my point!) , I really had to slap myself about and make a determined decision to suck it up and move on.

I recognised what this thinking was doing to me….it was poisoning me from the inside out. I was becoming REALLY woe is me and started my own little pity party.

I decided that I don’t want to end up resenting my kids.

I know that it’s not fair but I also know that none of it is going to change anytime soon.

My Dad always used to tell me that life isn’t fair, and I absolutely HATED it when he said that. But you know what?……He was right…!

And do me a favour will you all?

Promise to hassle, harass and harangue me and remind me of this post the next time I start to sink down into “poor me” mode again will you?

Because it’s bound to happen sooner or later!

I DID IT!!!! Waahoooooeee!

Ok…..Cue the happy dancing.

Fiona a.k.a the least technically minded person in the entire world, has managed to export all of the info over from  The Madhouse to here without a hitch!

So from now on, I will be writing exclusively here only.

I will eventually close the other blog down but not until the blog hits die off and I’m convinced that everyone can find me here

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 from The Madhouse were my site stats which sat at 37,998 ( 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

oh yeah: Im still trying to figure out the blogroll thingy too….for some reason it didn’t transfer over either *sigh*

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

Welcome!

If you are reading this, you will have either found your way here via My other blog Welcome to the Madhouse or you are a new reader who has stumbled onto my blog by chance!

Whatever the case….WELCOME!

This blog is still in the process of being set up but I can still be found over at the Madhouse until further notice.

Cheers,

Fi

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.

Pulling out the autism card.

As a parent of children on the autistic spectrum, I often find myself in a lot of situations where I need to pull out and play the autism card.

You know the one?….the card you play when your child is mid meltdown in a supermarket and you want to shame the nosey onlookers and shut them down mid-judgement.

Or the card you play when you notice people watching your child’s noticeably erratic and odd behaviour!

Well lately, I believe that I am finally starting to make some real progress on a personal level as a special needs parent in this respect.

You see, today was an very interesting day.

Coming home always does a lot of things to me. It stirs up memories, it causes me to re-evaluate my priorities and it also makes appreciate what I do have.
It shows me just how far my kids and I have come but also how far there still is to go. And most of all, because my life slows down for a little while here, it forces me to look hard at myself.

And I don’t always like what I see, but today I was pleasantly surprised.

I found myself chatting to a handful of people at morning tea after Mum’s church this morning and there was one moment when I surprised myself with my response (or lack of) when a lady started talking to Harley.

 As she spoke to him and asked him a series of questions (that he didn’t answer), he was looking everywhere else except at her, and was rocking ever-so-gently on the spot,  licking his forearm.  And for the first time ever….I didn’t feel the need to explain his odd behaviour away.

I think I’ve almost reached a point where I don’t feel like I owe it to him to pave the way and cushion people’s reactions to him.
  I’d be lying if I said that his behaviour NEVER embarrasses me, but it certainly isn’t the underlying reason that I do play the autism card anymore.

The thought that went through my head this morning during this one-way conversation was “This is my boy-isn’t he awesome!”

As I continued this polite back and forth with this lady, I watched all the other kids running around playing together while the parents chatted and drank coffee and then I couldn’t help but notice my own quirky kids.

Ella was standing next to a tree absentmindedly listening to her iPod and staring into space, and Harley and Lucas were sitting side by side underneath a shade sail eating the gluten free snacks that I brought for them COMPLETELY oblivious to anyone or anything else.

For the first time in a long time, I didn’t care that they weren’t like all the other kids.

No, because today – they were my babies and I was literally beaming with pride.

And for me…..that’s progress.

The amazing train journey!

OK , I’m ready to write about one of the most awkward/amazing/un-imaginable days I have had for a long long time!  

image from railpage.com.au

For those who don’t know what I’m rattling on about….let me give some brief history here.

Sunday – Mr Patient drove the children and me up to my mum’s for the Easter school holiday break and had booked a flight to come home that evening so he’d be back home in time for work the next morning.

It was a very kind offer to drive us as he knows how hard it can be to drive that far alone. So you can imagine his annoyance when he logged onto the computer to confirm his flight and realised that he had actually booked it for the day before by mistake!!!

After a few frantic phone calls to the airline, he soon discovered that there were no free seats on a flight for that evening OR for the next morning, the only possible alternative was to turn around and drive all the way back home almost immediately.

Mum and I were concerned about him doing this alone as he was obviously tired from the long drive we’d  just had so made an on-the-spot decision that I would go with him to share the driving and she would mind the children overnight at her house.

We went and booked me a train ticket for the next morning then set off on our way.

And I do need to add how very proud I am of my children that they coped so brilliantly with such a huge and sudden change of plans thrust upon them!

So…fast forward to Monday morning……

I am wandering around alone and slightly lost at Sydney’s Central railway station…..(this place is HUGE and overwhelming) and I spot a familiar face. It was Miss K. She was my English teacher in high school and was known for scaring the pants off her students with phrases such as: “I am neither your friend nor your acquaintance. I am your teacher……do NOT cross that line”

Before I could stop myself, I find myself (obviously delusional with relief at finding someone I recognised), call out “Miss K, It’s Fiona!….Fiona S  from *** High school!”

Her face lit up and she greeted me like a long lost cousin and invited me to join her for breakfast. How could I refuse? It was clear that I was lost and also that we were both catching the same train to my home town.

She asked me to call her by her Christian name but there was NO WAY that I could bring myself to do that!

So over toast and tea we chatted and reminisced. She asked to see photos of my children (which of course I happily obliged) and I received my FIRST grammar lesson of the day!

She commented that the children all had lovely shiny hair and that they weren’t as dark as I am. I said:  “Yes, they are all mousy”.

She tutted me and said:  “One must NEVER reply to a compliment with an insult”.

My face must have given my confusion away because she followed with : “Mousy’ my dear, is how one would describe the drab personality and character of an individual that one no longer wishes to associate themselves with”.

“Err no”, I replied….. “I just meant that their hair is lighter than mine but not really blonde either”!

We filled in about half an hour chatting and noticed that it was time to head towards the platform to board the train. I excused myself to go to the bathroom wishing her well and safe travels.

I had just entered a stall and hung my handbag on the hook when I hear “Fiona…Oh Fiona my dear…..Our train is leaving from a different platform than we originally thought. I shall wait here for you and guide you to the correct one.”

Oh-kay!  I was glad no-one could see my face!

I walked with her over to the correct platform and she asked me what carriage I was in. I looked at my ticket and told her “D”.

“Oh , how lovely”! She replied.  “As am I”!

It was a mostly empty carriage so she asked me to sit in the seat across from her so we could continue chatting and I did until a few towns later  when a couple arrived and I was in their seat.She offered me the one RIGHT NEXT TO HER! So I felt it would be rude to say no so there I sat for the rest of the journey!

At this stage, I had already mentioned to her that 2 of my children were on the autistic spectrum and had explained how life with aspergers looked through my eyes. But over the following  4 or 5 hours – I was able to explain in great depth how diverse it really can be from individual to individual.

The Country Link staff member who checked our tickets and walked through the carriages from time to time taking our rubbish and attending to us was wearing a blue ribbon on his vest, so naturally I asked him what it was in support of and was disappointed to learn that it was in fact only for the recent Victorian flood victims.

I had intended to inform him that it was also autism awareness month but before I could open my mouth – Miss K was saying very matter-of-a-factly : “Young man, are you not aware that April is autism awareness month. This young lady here is the mother of 2 children with autism. Maybe your ribbon should be for BOTH of these worthy causes”.

My mouth dropped to the floor!

I was starting to see another side of this wonderful lady!

We continued chatting about her travels overseas since she retired a few years ago and her history knowledge was remarkable! She could tell me a fact about every small town that the train rolled through!  She cheekily told me which of my past teachers she suspected had aspergers and informed me of who was still teaching, who had retired, who had died and who she wishes had!

The conversation flowed beautifully until she asked me what I did in my spare time.

Of course I gave my usual answer of: “Spare time? What’s THAT?” to which she tutted again and rephrased the question to ask me what I enjoyed doing. What brought me the most pleasure in life and what would I most like to do if ever I had more free time.

I didn’t have to think about it because I’ve realised lately that I really, really love writing.

Not necessarily blogging, but I have a couple of notebooks and journals that I jot down my thoughts and poetry into. These are my safe places. The places that I can write whatever i want. Whenever I like.

None of it is open to public scrutiny and none of it has to be grammatically or punctually correct. I write it for me and me only.

She asked me if I’d ever had anything published. I told her no.

But then I remembered that I contributed to a new just released book called ” The Autism Experience”.

You can click on the book image on the top right of this page to order your own copy if you haven’t already.

This wonderful book is the brainchild of my friend Valerie Foley who compiled and edited and marketed this book brilliantly! It is full of parent’s stories from all over the world and how they live their lives with autism as a part of it.

You can also visit Valerie’s amazing blog Jump on the rollercoaster but make sure you promise to come back here afterwards. I’m not a professional writer like she is!…….and of course Miss K asked me how I became involved with this.

So I had to tell her about my blog.

I said it quickly hoping she’d not pry and I was even smart enough to get out my iPad and show her tha
t I was unable to connect to a wireless connection so therefore couldn’t open my blog.

 But she was smarter and more switched on than I had given her credit for!

“Why don’t you show me on your iPhone dear…..I saw you fiddling with your emails earlier so you must be able to access the internet through that!”

Then she winked at me and I knew I was beaten.

After much fiddling and sweating, stressing and panicking, I finally settled on *this* post.

It was one of the first posts that I ever wrote and it is specifically about my son Harley and how autism looks on him.

As she read it, I could feel my heart throbbing, my hands sweating and my mouth drying up. As much as I told myself that her opinion didn’t matter to me- I knew deep down that really…it  did.

She finished reading and turned to me and said: “Wow, that was beautifully written. You know your child so well.”

Finally I exhaled.

She then completely surprised me by adding….: “You know what Fi (and I nearly collapsed after hearing her shorten my name!)…..“If I had have been shown something like this when I was teaching, it would  have made me a better teacher!”

And with that…..we sat side by side like old friends smiling as the train continued its gentle clickety clack, rocking motions until we eventually rolled into town.

She spotted my children waiting on the platform before I did. I helped her disembark from the train and I turned around after hugging my kids only to see her red cape-style jacket disappearing into the crowd Mary Poppins style!

I don’t know if we’ll ever meet again, but I really hope we do

 

I'm just venting…..

I know I promised a post about the 8 hours I spent on a train with my ex-high school English teacher, and it’s coming I promise. But today, I have something more pressing on my mind.

Respite.

Or the disgusting lack thereof.

I am going to be flexing my sarcasm muscles a lot throughout this post…so be warned!

Yesterday, I received a call from the social worker that was part of the multiple disciplinary team that assessed and diagnosed Lucas a couple of short weeks ago.

You may remember me writing that we left there with the promise that help was on it’s way…..well it turns out that apparently, having 2 children diagnosed with autism, no family near us and a husband who is away a LOT with work…..isn’t considered desperate enough circumstances to warrant being considered for respite.

This is now the 3rd ” no” we have received.

The social worker though….was gorgeous. She told me that she was personally appalled that we were knocked back again because as far as she could tell, we met and exceeded the necessary criteria.

Pfft, I say.

I asked her why and she said that the reason she was given was that it is because we don’t have a “case manager”.

I asked her how we go about getting one of these and she said it wasn’t something that was easy to get.
She told me that one was assigned to families deemed worthy of receiving one.

Which we are not.

So the fact that I had another nervous breakdown last year because there was far too much stress in my life counts for zip obviously.

I’d like to see one of these bigwigs who call the shots survive a WEEK doing what I do day in-day out.
I’d challenge any of them to actually spend a little time with these families that they keep rejecting and see exactly what a day in the life for a family with autistic kids is REALLY like.

To go to the lengths that we do EVERY freakin’ day just to survive.

To come in and watch the strain on the wife’s face as she is forced to endure yet another meltdown over something that she couldn’t have possibly foreseen.

Or to observe the husband walk in from work only to find his wife dissolved in a pile of tears on the kitchen floor while the kids run naked and screaming around the house.

To watch someone answer the phone and have a child either seriously hurt themselves or worse…abscond in the 10 seconds that it takes for you to tell the caller that it’s not a good time and that you’ll return their call later.

Yep Mr Beurocrat, you’re right…..we don’t need help.

We just need to get some old fashioned discipline happening right?

Our kids just need a good swift kick up the bum and be pulled into line.
And if we give them to you for a day -you’ll sort them out right?

Nah….were fine! Just a bunch of complainers. Let’s save the respite for those with REAL problems.

Pffftt.

I’m just thankful that I have my mum.

Sure I have to drive 6 hours to get some help…..but I know that it’s a helluva lot more than some families receive.

And these are the families that I grieve for.

Something’s gotta change.

Here is a quote that I think is very apt right here:

¨ When your child is diagnosed with cancer, neighbours stop by your home bringing precooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

Dr David Feinberg 2007

I know that this isn’t only happening in Australia too…..this is happening all over the world…..I have friends in more difficult situations than us who can’t access help either.

The post with no name ….

Tonight, I had every intention of writing a post detailing the jaw dropping coincidence that had me sitting on a country link train seated right next to my High school English teacher and the 8 hours we spent chatting and she critiqued my blog! Eeek!

But, it’s now coming up to 11pm and I have just returned from a dash to the hospital with Harley with suspected appendicitis , only to return home with him struck down with vomiting and diarrhoea *sigh*

He is now thankfully peacefully asleep in bed with me whilst I type this and consequently I am too knackered to elaborate any further.

So the post will have to wait until tomorrow when I can put some proper time and care into it!

I’ll leave you all with this thought though : Nothing says ‘I love you” more than willingly sleeping next to your child who breathes vomit infused breath on you every time he exhales!

Hehehe…

Relax….

It’s only 4 more sleeps until I head back to the country to spend 3 weeks with my mum for the Easter school holidays.

image from keithabraham.com

Here’s a list of what I definitely WON’T be doing whilst I am at Mum’s

1. Stressing about situations at school.

2. Wondering whether Mr Patient will walk in the door before or after the kids are in bed for the night.

3. Dragging 3 shopping-phobic kids around a supermarket because I have no-one to mind them and we still need to eat.

4. Spending an hour convincing my child that it’s ok to wear a different coloured pair of undies to your socks…..really!

5. Spending hours planning the weekly schedule and factoring in therapy appointments.

6. Ironing school uniforms.

7. Making school lunches.

8. Fighting over homework.

9. Worrying over my huge phone bill to my Mum!

10. Hiding from the kids in my wardrobe just so I-can-get-a-moments-peace!

–

And here’s a list of 10 things I hope to do while I’m up there.

—–

1. Relaxing. Doing a lot or nothing, wherever my mood takes me.

2. Drinking coffee at trendy little cafes with friends.

3. Shopping with Mum…(yay)!…This woman sniffs out bargain a mile away!

4. Sleeping in. (Courtesy of the BEST mother )

5. Catching up on blog reading that I am ashamed to say that I am WEEKS behind in…..sorry all!

6. Going to my best friends birthday party and grooving the night away with her.

7. Playing hide-and-seek with the kids in my Mum’s awesome rabbit-warren house!

8. Baking cupcakes with the kids.

9. Going for walks at dusk to tire the kids out so they sleep better.

10. Running around like an idiot at the local parks chasing my kids watching them squeal with delight.

——-

So….what are you doing in YOUR holiday break?

I love a bit of randomness

Let me tell you about my good friend Nadia.

image from my.opera.com

She is one of my closest friends and the story of how we met still makes me smile every time that I think about it. It was a sunny February morning and I was sitting down drinking a coffee at McDonald’s while Harley played on the equipment. Lucas was still only a baby and was sitting in the pram smiling at me.
It was a great morning.

I noticed a petite blonde woman with a beautiful face sitting a few tables away in the cafe and she was also watching her children play.
We were the only two people there and we exchanged glances and smiled and went back to drinking our coffees and watching our boys play.
I remember thinking how stylish and classy she looked and glanced down at my baby food stained shirt and too tight jeans and was embarrassed at how I measured up next to her!

After about ten minutes I had figured out that she was the mother of 3 boys and that blew me away! I will still in the midst of not knowing WHAT THE HECK was wrong with Harley and I couldn’t wrap my head around having three boys.

Well Harley and her youngest boy Jack were about the same age and had started playing together. (Well, in hindsight, they weren’t really playing “together” but Harley was copying Jack and when you are only 3….this doesn’t really stand out as an issue).

Our boys playing together seemed to me to be the perfect opportunity to break the ice with her so I asked her how old her boys were. Immediately her face lit up and she started talking animatedly about her treasures,
At the time the boys were, (I think) 8, 6 and 4.

Her eldest son has the same name as Lucas (his real name) so we laughed about that co-incidence and I told her about my Ella who was still in infants school.

Her story was as heartbreaking as it was fascinating. Her husband had just recently joined the army and they had only moved here a few days earlier. They were staying in a motel across the road from McDonald’s and they were waiting for all their furniture to arrive and the house that they were assigned to be ready.

She had left her small town that she and her husband had grown up in and was thrust into this big scary capital city. I remember feeling the exact same way when I moved here.

We bonded over our similarities and our love of country town folk. I warned her that not everybody would be as friendly as I was and told her not to take it personally.

By now she had pulled up a chair at my table and we were chatting like we’d been friends for years. We talked about everything from children to cooking to schooling and everything in between.

She ooed and aahed over baby Lucas and I gushed at her extremely handsome little blonde men.

We exchanged mobile phone numbers and after a couple of hours (which seemed like only a few minutes) we realised that we were going to be life long friends.

A few days later I sent her a text message wishing her boys the best of luck at their new school and we organised to meet up for another coffee the following week.

Anyway, Sunday arrived and I was floored when we went to church and Nadia and her family walked in the doors! We both spotted each other and cracked up laughing.
It was funny because never once during the conversation had we exchanged information about churches!

It did come up that I was a Christian and she had told me that she and her husband had been youth ministers in the small church that they had just left but I hadn’t told her anything past that.

Our husbands met and hit it off instantly and we started meeting regularly for family get togethers , BBQs, dinners and would show up unannounced at each others houses often.

I have to add with a giggle that Mr Patient struggled with this for a while being the born and bred city boy that he is….it isn’t the usual done thing here…you ALWAYS call first! But not in the country….it’s usually always spontaneous.

Anyway, it’s now been almost 5 years since we met and they have been moved on twice. They are now in their 3rd Capital city and are hundreds of kilometres away from us but we haven’t lost that initial friendship spark. I would still count her as one of my closest friends.

I got a surprise phone call from her last week and we picked up where we left off…..She was amazed that Lucas will be 5 in a few months and I was floored that her eldest is now almost a teenager!

***
My Grandmother on my Mum’s side was known for doing odd things.
One thing that has gone down in family history is the time that she spent half an hour chatting to a wrong number on the phone and comparing stories about their grandkids, baking and life in general

And today my Mum was telling me that she met her friend Cheryl for a coffee…..

I asked her who Cheryl was because it’s not a name that I have heard her mention before. She laughed and told me that she is a lady that she met over the phone.

There is a hairdresser in Mum’s town who has a phone number that’s very similar to Mum’s and Cheryl rung up to book a hair appointment.
Mum gave her the correct number and they started chatting.

It turns out that Cheryl was new to town and had just moved to town and hadn’t yet made any friends so Mum invited her out for a coffee.

They have been friends for a few months now and have met 3 times for coffee. They have found out that they have a LOT in common. They both love quilting, they are both Christians and Cheryl is looking for a church and they have an amazing connection. I was so happy for Mum AND PROUD OF HER!!

I think all these spontaneous friendships are awesome and if you’re wondering how I’m going to link all these random stories to my blog…..I will tell you now

Since I started blogging, I have RLF (real life friends) try to warn me away from those freaky internet mothers.

Funny I know but these are all well intentioned.

And yes, I think that you need to use wisdom when you are putting your and your families lives out there on the world wide web but I have made some of the most AWESOME friends through blogging. It’s not only therapeutic but it’s connecting with real mothers who are walking the same autism road to the same odd beat.

And just as I didn’t know Nadia from a bar of soap when we first met, my Grandmother didn’t know her wrong number caller and my Mum didn’t know Cheryl……
If we hadn’t have taken a risk and reached out….our lives wouldn’t be as rich as they are now.

So thank you bloggy friends. You are all priceless and I’m proud to be running this race with all of you

Fi xx

A flour-y success.

Well, good morning all

I promised a happier disposition today and I promise to deliver

I am thrilled to share with you all something else that I have found that is working for my little Harley and his homework.

He started to show signs of displeasure at the prospect of spelling his words out on the fridge this week so I had to dig into my memory reserves and find a trick that a great school teacher friend told me about years ago way back when Ella was little.

I got Harley to write his words in flour with his forefinger so that he could practise the letter formations.

He LOVED it

And I’m pleased that I used my brain and used gluten-free flour as my sensory child ate quite a lot of it . LOL

He was more than willing to keep writing and we had no trouble getting him to do it everyday this week. He wanted to keep writing even after he had finished all his words which is an absolute FIRST for him

Another success to chalk up? You betcha!

It’s all about thinking outside the box with these kiddos.

No-one said it was gonna be easy but it sure is worth the rewards at the end.

His floury grin and white sticky fingers that were wiped on my back after he gave me a big bear hug were all the thanks I needed.

It’s gonna be a great week

Meh

So, I had a post written tonight, but I decided not to publish it and deleted it instead.

It wasn’t very cheerful. It was something that would have been more at home in a personal journal than on the world wide web.

It centered around the exhaustion that I am experiencing at being the NT interpreter in this all aspie house.

It really is tiring and I do get sick of the “me-me-me” attitude that seems to reign here.

I told them all to suck it up and walked out. Of course I didn’t get far before guilt called me back!

But they drove me out.

I’d had ENOUGH! And I didn’t hesitate to tell them all so.

I told them that DAILY I have to do things that I don’t particularly like and that being in a family is a massive game of give and take.

I felt like I was doing all the giving and they were taking, taking taking.

I put my foot down I did!

There were some other things that occurred this weekend that added to my already miserable disposition but nothing I can’t handle.

I’ll finish with a quote that I heard at church this morning that really helped me. Especially when life is “challenging”!

“Whenever you feel like you’ve let God down, remember that you were never holding him up in the first place. He upholds US”

Cool eh!

Hope you all have great weekends and I promise to be nicer tomorrow.

Promise

Picnic in verse :)

Today we attended a “Go blue for autism” picnic in the park.

It was a fantastic day with a good turnout and a lot of fun.

It was wonderful to see so many blue shirts everywhere too

.

Today I watched your little faces,
Shining with delight,
Competing in a range of races,
What an awesome sight!
.
Surrounded by more kids like you,
As gorgeous as you are,
And all the same in shirts of blue,
You were all shining stars.
.
The atmosphere was so inviting,
Everyone had fun,
The kids all found it SO exciting,
FUN for everyone
.
Today the world was made aware,
Of what autism really is,
And just how much these parents care,
About their fabulous kids.
.
So I hope that all whom we hold dear,
Have learnt about what we do,
And heard the message loud and clear,
And lit their lives up BLUE!!!
.
.
.

Sack Race

Mr Patient found a balloon.....always a clown

Balloon race

I know this is a TERRIBLE photo of my boys but it captures their apprehension about the 3-legged race they are about to compete in perfectly!

* I actually took a lot more photographs but I don’t feel right putting pictures of other people’s kids online without their permission

A blue day….

Alrighty then.

World autism awareness day (WADD) is being celebrated “today” (April 1^st) in Australia.

There are a number of theories as to why this is.

Firstly, maybe because April 2^nd (the day the rest of the world celebrate it!) is on a Saturday down under….it’s harder for people to organize functions on weekends, or maybe it’s because Australians are a little backwards!

Who really knows?

But we are raising awareness TODAY Friday 1^st April…aka April Fools Day…..(hmmm, there might be something in that?)

I woke up this morning and put on my blue shirt and donned my ‘autism awareness for April’ badge and my blue headband and set out with the mission to create awareness about autism and the challenges that our children face every day of their lives.

And because it’s WAAD, I am going to grant myself permission to be candid, outspoken and blunt!

Our kids need the world to understand them.

The sad fact is that one day….God willing…. we will pass before our children and they will need to be surrounded by a world that is tolerant, supportive and caring.

And as much as I wish that these traits came naturally to all of humankind…I know that sadly, they do not.

Particularly in this day and age.

My job as a mother of children with autism is to educate people on who they are, what they need, how they function and to provide the necessary tools to make it happen.

I have made it my mission to tell anyone I come into contact with that these kids are amazing, talented and beautiful souls.

Autism is NOT contagious….it is NOT due to bad parenting….it is NOT a disease, a hinderance or a crutch to bear but a wonderful difference that brings SO much joy to my life.

These kids are not just “autistics”. They are not “things”, “a number” or an epidemic.

They are our children.

Precious human beings with hearts, souls and emotions.

OUR kids!

Carrie with my little Lucas at school this morning

My friend Carrie , is a complete nut for autism awareness…..she is a mother of 2 children with autism and her dedication to spreading the word is remarkable!

She is pictured here at school this morning with my little man Lucas…..also in blue!!!!

(No, that wasn’t an accident!)

I also want to say how sad I am that I still regularly come into contact with parents who have children that they should be pursuing a diagnosis for who are in complete denial about the facts.

I was only speaking to one of them this week.

The mother turned to me and said “No…..my *Johnny isn’t like THAT!” with a voice of disgust when I mentioned that his behaviour was an obvious meltdown because 8 year old children don’t usually throw themselves down on the ground screaming because they have a different teacher….

It’s hard for me to not take offense at her distaste to the possibility of ASD because her implication was that the thought of having a child “like mine” was despicable!

I really don’t care what she thinks of me but I feel for the child who is growing up with no intervention and no understanding.

But….I’ve had to learn my place and show love and not judgement in these (all too common) cases.