Wordless Wednesday 7 November 2012

Do you know how much self control he exercised here?

The Shell.

After writing my last post lamenting the difficulties that school holidays present for me, I had a couple more days of harsh reality checks. The day after writing it, I looked out the front of our holiday units and noticed two sisters who were about 7 and 8 making up a dance together in the grassed area. They were giggling and having the time of their lives making their own fun and self-amusing. It reminded me of holidays when I was a child with my sister because we were just like that!

I smiled at them trying to block out my own children who were arguing and screaming behind me and following me around moaning and whining about being bored.

I admit that the kids did get better as the days progressed but my attitude didn’t. I was still sulky and feeling sorry for myself and counting the days until school returns.

Fast forward to yesterday….

I was sitting on an old log on the beach quietly sifting the fine sand through my fingers. The sky was overcast and so was my mood as I watched the children run, jump and play. I turn my head to the small voice beside me: “Can you see the rainbow Aunty Fiona”? I looked over at the shell that my 8-year-old niece was holding up before me and noticed that it was broken and dirty. She turned it over and the sun hit the pearlescent ( made that word up) inner side and the spectrum of colours shone through.

It was remarkable because I would have just discarded it thinking that it was no good. But she was seeing it through eyes that were still young and full of wonder.

I glanced over at my boys and noticed that Lucas had gathered a pile of driftwood under one arm and some sticks and twigs in the other. I stood up and followed him over to where Harley and his other cousin were standing picking up pieces of seaweed and sea sponge. He smiled at me and said: “Mum, there are so many cool things here, God makes BEST nature stuff!” as he carried on rummaging through what the tide had washed up.

The kids we’re all in their elements picking and choosing their own personal treasures. They each wore a face shining with amazement, enchantment and pure joy. The pleasure they derived from an activity as simple as beach scavenging was so humbling.

I thought back to earlier in the week where I was so cranky that I felt ready to adopt my kids out. I was angry that things were going so pear-shaped and hated how every holiday seems to start the exact same way. All I could see was how hard Harley’s meltdowns were on *me* EVEN THOUGH I knew that there was a very good reason for them occurring: (He was in an unusual setting with no solid routine or structure). And I couldn’t see through the many layers of the outer storm to why it was even happening at all.

I was looking at the dirty broken side of the shell and was unable to see the beauty behind the ugly cracked and broken exterior.

Until my eyes were opened by a child who is still able to view life through untainted lenses.

And I asked myself: Isn’t that why I blog? So that I can be the one to teach people to look for the inner beauty rather than focussing on the outer yuck.

What a wake up call!

What’s a holiday?

It happens every holidays. The excited mothers who are thrilled that their children are off school for a few weeks. They speak in anticipation of sleep-ins, lazy days, relaxing and recuperating combined with the grand plans of outings and day trips and possibly catching up with friends.

I listen to their exclamations of joy and feel like a real cad because if I were to be completely honest – I’d have to admit that I HATE school holidays with a passion.

And yes, hate is a strong word.

I hate that I have full days of fighting children instead of only a few hours in the evenings. I hate that my children whine and complain the entire time that they’re bored regardless of the activities I have provided them with, and I hate that more often than not, I end up housebound because taking them out causes too much stress for all of us.

I will admit that the first week of any holiday break is always the worst because it’s then that the boys are trying to make the transition from the routine and structure of school to the more relaxed easy-going (somewhat structureless) holidays.

The first week is also the time that I start to notice my own mental state shift. And this is largely because I am usually more on-edge and anxious as I try to foresee and predict meltdown triggers and step in and stop them before they occur. I am constantly aware that I need to stay one step ahead of them in everything and that the prospect of just ‘taking each day as it comes’ is something that I just don’t have the luxury of indulging in.

Holidays don’t have anything relaxing about them because they are always chaotic, stressful and loud.

Oh my goodness they’re loud!!

Having said all that, I missed the boat completely with Harley on Sunday with him having the worst meltdown I have EVER seen to date. Clearly I missed all of the warning signs.

***
At the moment, the children, Mum and I are staying in a holiday house on the NSW central coast and on Sunday, we decided to walk up to the shopping strip nearby and get some essentials because it would be quicker than finding a car park. But for some reason, Harley thought that we would be driving up and threw a fit when he discovered that we were walking.

He stomped along behind us dragging his feet on the footpath and screaming at intervals that it ‘wasn’t fair’, that he was ‘tired’ and that he wanted to go home. We ignored him and continued walking refusing to let him ruin our plans because we felt that we weren’t expecting too much from him.

We reached the end of the street and Harley calmed down enough to cross the road and we thought we’d be ok after that so we took our chances and went into a nearby cofee shop to grab a quick coffee before shopping. Harley just reacted by sulking and being generally cantankerous.

As we drank our coffee, he continued to growl at us and threw his food straight at Mum so I told him that his behaviour was disgusting and that we weren’t going to put up with it. He was told to change his attitude or there would be no beach that afternoon. After we finished our coffee, we headed toward the supermarket and that was the exact moment when Harley turned it up a notch. In a matter of minutes, we were thrust into the middle of a full-blown mammoth sized meltdown and there was no escape.

He screamed his lungs out and threw himself down on the footpath with arms and legs flailing furiously. People stopped and stared and when I tried to pick him up but he may as well have had concrete in his boots because he was literally anchored to the ground and I couldn’t budge him.

I tried to talk to him but he just screamed louder. I tried a second time to pick him up and I did manage to carry him for a few steps, but I was kicked and punched so hard that I had to put him down again and I waved the white flag of surrender. So instead, I sat on the edge of a shop window and pulled him between my legs with my arms wrapped tightly around him whilst saying: “Shh, it’s ok, it’s ok, Mummy’s here” while stroking his head as he kicked and thrashed.

At the time, I truly believed that what we were witnessing was a tantrum rather than a meltdown, but the proud part of me didn’t want to look like a bad mother to passers by so I took the ‘calming a meltdown’ approach instead. I did this because I realised that his fit looked like something a 2 year old toddler would throw not something you’d expect from a 9 1/2 year old child. And when Harley gets angry – he becomes super-humanly strong and when he’s not coping…even more so.

Mum was unable to move him either so we had no choice but to send Ella to the supermarket to get a trolley and bring it to us. Together we lifted Harley by the arms and legs and placed him in the trolley while he continued to jump and scream and thrash violently ducking the punches as they flew at our heads.

I walked around the supermarket grabbing only the absolutely essential items so we could get out quickly, while Mum waited with him in the trolley at the front of the store. He was so loud that he could be heard no matter what aisle I had walked down because he was screaming at full volume. I put my head down and refused to look at anyone. I was embarrassed, angry and exhausted.

About ten minutes later, I noticed that the screaming had subsided and headed back towards the checkouts and saw Mum talking to another woman who Mum later told me had recognized that it was autism.

In fact, Mum told me that FIVE different people had also approached her saying that they understood because they had a child/grandchild/relative who also lived with exactly what they were witnessing in Harley and that they understood our exhaustion and mental drain.

No judgment, no unsolicited advice..just pure understanding and support.

She (and I) were absolutely blown away!

***
It’s now been a few days since that episode and I’ve had time to reflect and chat with Harley because I really wanted to get to the bottom of this and discover what actually went wrong. I simply don’t ever want another episode like this. Talking to him was surprising and very eye-opening.

And this is where I find the autistic mind both fascinating and frustrating. This whole event came down to a simple misunderstanding and a hiccup between what we communicated to Harley and what he understood.

Firstly, he had already prepared himself for a car ride which didn’t eventuate, then we added in a quick coffee stop and thirdly, he didn’t have a film strip in his head of what the shops looked like because he hadn’t been there before. Most children are equipped with the emotional maturity to cope with change and adapt to new situations with ease. But Harley – feeling out of his depth , completely freaked out.

But don’t get me wrong here, I don’t excuse his shocking behaviour at all.

Throwing food back at Mum, stomping, screaming and the physical abuse are all extremely inappropriate. But all that I can think to say right now in my resigned, tired voice is : ‘Welcome to our autism’ .

I am struggling to teach this child anger management and self control and how to cope in different situations because I’m just too exhausted anymore. I am counting the days until his next psychologist appointment because I’ve been dealing with this for far too long now.

I wish I could enjoy having my children home without spending most of the time in tears. I want to love the school holidays as much as everyone else. But I don’t.

Not even close.

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

 

Blog gems….holidays.

Today over at  Jen’s blog gems, the topic is:  Holidays.

Tell us about a holiday, any kind of holiday even just a weekend away, vacation or any few hours to yourself that are not your normal routine…

You can read about my disaster holiday *here*.

 

 

I’ve fixed the problem with the link………

Pleeeeeeease Mummy?

Sometimes, a blog post almost writes itself.  

Well…..not really, but when you include photos of your most recent wonderful adventure with your kiddies…..lots of words really aren’t necessary!

Excited x 3

On Friday just gone, Mr Patient came home early from work and we were going to go down to local park as a family and have a picnic dinner and let the kids burn off some energy on the bike track.       But while I was in the kitchen packing the picnic,  he had the idea that we should take them to the beach for fish and chips instead…

“YES, YES, YES….Can we pleeeeease Mummy” was the excited cry that the kids gave as they came into the kitchen almost jumping out of their skins with excitement!

And so it was decided.

Yes, I'm wearing a skirt. No-one EVER is allowed to see my thighs. ok!

I don’t like to give my location away but I can safely say that we live in one of the capital cities. They all have a beach of some description as they are all coastal ( or close) so that’s not really saying too much

Anyway…..

We got the kids dressed in their swimmers (or togs, bathers,costumes depending on where you live) and threw them in the car.

It was a perfect setting and the kids LOVED it.

Mr Patient and I asked ourselves why we don’t do this kind of thing more often?

The ocean was warm, the sand was soft and the tide was perfect. The kids were in sensory HEAVEN!

Harley loved the weight of the sand on his legs

They played in the ocean for about an hour and then we decided it was time to eat.

After our dinner of filthy, greasy, fattening fish and chips and soft drink (soda), we decided to go for a walk along the sand to try and *ahem*  digest some of the crap bad food that we had just filled our bodies with!

We ran into a family that we are friends with who has also come down for the day AMAZING! So we got to catch up with them as well.

After we had successfully worn the kids out, we drove home and had NO problem getting anyone to fall asleep that night!

I love my family, I ADORE Australia and we really are SO blessed to live so close to a fabulous beach.

I think this will DEFINITELY be something we make more of an effort to do regularly from now on.

Because I deserved them …….

Life is good in the Madhouse lately.

My lovely flowers

No, in fact it’s better than good, it’s fabulous!

I’m not entirely sure if this is due to the fact that I am now well rested and therefore having a much clearer outlook on life or whether it actually just IS good, but I don’t care!

The kids have all been playing snakes and ladders together for almost an hour (which is usually unheard of here!) and Ella got the boys some breakfast and let me sleep in!

They don’t start the new school year until the 31st Jan so we have a couple of weeks together at home.

***
On Saturday, we drove home from Mum’s and as soon as we walked into the house, Harley ran quickly from room to room looking to see if anything had changed.

He ran into his bedroom and threw himself face first onto his bed exclaiming “Oh sweet rockets, I’ve missed you SO much” .

(He has rocket ships on his quilt cover for all those wondering what on earth this meant!)

He then walked out into the family room area and spun around several times on the spot in pure happiness and then ran over to the kitchen bench and planted a big kiss on it!

I have NO idea why he did this but we all giggled at him anyway.

Lucas walked into his room and yelled out “THOMAS…….WOW, thanks Mum!”

I cracked up laughing at this one because he has had his Thomas the tank engine quilt cover for about 8 or 9 weeks now but because we were away for 5, I think he may have forgotten about it!

Mr Patient is making a concerted effort to come home earlier from work so he can spend time with the kids and I burst into tears yesterday when he arrived home and turned the key in the door and the boys ran up to him screaming “Daddy, Daddy, Daddy!”

Their excitement was almost tangible!

He walked up to me and pulled a bunch of flowers out from behind his back and kissed me on the cheek!!

Of course I was suspicious as to why he was buying me flowers… but didn’t allow myself to vocalise this in case he was hurt by my assumption.

But it turned out that he had stopped to buy some shaving cream and deodorant on the way home and had to walk past a florist. He told that he bought them because I deserve them awww…..

After dinner, we sat down and did floor puzzles and played board games as a family. The he wrestled the boys to help get their energy out and I thought my face was going to crack from doing so much smiling!

***
This year, Mr Patient and I have made a new pact.

Every night at 8pm, we are going to switch off all computers, televisions and phones and we are going to spend half an hour just talking to each other. This will be the time that we discuss any concerns we have, share any ideas and make any necessary plans to deal with any ugly situations that might arise.

We talked last night about the new school year that is fast approaching and later this week, we are going to sit down together and write out a plan for how to handle Harley and his new teacher. I am still undecided about whether or not I should give Miss O this blog url or not.

Part of me wants to so I’m kept accountable and it will stop me from getting ugly with words when I’m not happy about something. And it would also be a good tool for her to access ideas about handling him and give her some insight into “home Harley” as opposed to “school Harley” but there is a small niggling part of me that wants to keep my safe place a secret.

Besides…..his teacher from last year has read the blog anyway, so there’s still a possibility of her finding it anyway.

But I’m certainly not going to lose sleep over this decision.

Onwards and Upwards I say!

So….Come on twenty eleven…..give me your best shot!

Walking in someone else's shoes

How many of you play the comparison game?

You know the one I mean….the game where you always-without-fail come out the other end feeling second best?

Well….I have indulged in that a lot in months gone by. Even though, I know it’s just plain stupid!

I people watch a LOT!

Every time I go to a coffee shop, a supermarket, a bank, a post office…I see other parents and their perfect kids. 

(That is of course if I get a moment  to take my eyes off my absconding little rat bags!  My boys are notorious escape artists and I am known by the centre management at our local shopping centre as they have done this so often…
Ugh!)

As I was saying….it’s easy to see other people’s lives as better than your own when you’re looking for it.

This school holidays, Mum and I took the kids ten-pin bowling. We went prepared with ear phones for the boys, a social story before-hand and a plan for a quick escape route if it was needed.

We talked to them about the flashing lights, the loud music, the heavy bowling balls and the special shoes so they would know what to expect.

The first time we went, Harley got himself into a bit of a flap when he found that he couldn’t bowl as well as he wanted to. He expected it to be as easy as the Wii bowling and was quite mad when it wasn’t.

His shoes were irritating him, his socks kept falling down and his ear phones were tight on his ears.

In the midst of all this discomfort, and sensory overload, he forgot how to use his words. He had a mini meltdown and made it clear that he wasn’t at all happy!

I noticed the family beside us watching our boys with their bright green earphones and their little quirks and wondered what they were thinking.

I saw their kids staring at Harley in disbelief when he lost it and I also saw the parents try to distract their children’s attention away from this obvious display of “bad behaviour”.
~
The next time that we went, it was SO much better. Lucas took his earphones off almost straight away and Harley followed suit about 20 minutes later as they knew what to expect this time.

They had more of a technique worked out as far as bowling went and as they were a lot more familiar with the noises, lights and action, they self regulated a lot more.

But THIS time, the family next to us weren’t a nuclear family at all.

No, in fact Mum and I looked knowingly at each other as we realised that this family was special.

It was made up of 2 women in matching polo neck t-shirts and jeans, and 4 kids who all had special needs of varying severity.

One of the children would jump up and down on the spot clapping furiously  with obvious joy whenever another of her team mates knocked over pins and she spun in circles at intervals humming happily.

There was another girl who wore coke-bottled lens glasses and gripped her carer’s hand tightly as she limped up towards the bowling lane with her carer carrying the ball for her.

There was a young boy who looked about 10 who was adorable. He sat almost right on top of his team mates talking their ears off totally oblivious to the fact that he was being ignored.

And lastly, there was a large boy who was in his early teens who I think must have been slightly mentally challenged as he didn’t have any speech or motor control at all.

He covered his ears and rocked and screamed for most of the time and he moaned unintelligibly and drooled a lot.

I went over and offered a set of our ear phones to the carers as he obviously had issues with the loud music and they thanked me but said that they doubted that he would handle anything touching his ears. 

Turns out they were right!

I got talking to one of the carers for a while and she told me that these children were on a respite excursion for the day to give their families a break.

It broke my heart.

Yes, my boys have issues, they struggle with pretty much every aspect of daily life but I learned a very vital lesson this day.

I learned that it’s dangerous to make comparisons between your life and other peoples.

Especially when you haven’t walked in their shoes.

Because other peoples shoes don’t fit my feet just like Grandma’s shoes don’t fit Lucas

So….how was it?

Last week when I flew back home to spend the week with Mr Patient, I was expecting to walk into a complete disaster zone.

Our house was less than tidy when the kids and I left for Mum’s all those 5 weeks ago
At that time, I was exhausted, over it and really couldn’t bothered doing anything about it. I just wanted a break.

So imagine my surprise (and delight) when I walked from room to room in our home, only to discover that Mr Patient had worked his tail off remedying all this!

The baskets of un-folded clothing were now folded and sitting neatly on the children’s beds that were now made!

The carpets were vacuumed, the bathrooms sparkled and the tiles in the rest of the house shone from the cloudy ammonia scrub that he had given them!

I was so impressed!
And when he told me that he cleaned out the fridge and freezer as well – I simply couldn’t wait to see it.

I opened the fridge door and just about split my sides laughing!

It was the epitome of a man who has been living the bachelor lifestyle for 5 weeks…..all the “necessities ” were there.

Ham, butter, eggs, a tin of pineapple pieces and beer.

And that was it!

The freezer only contained 4 microwave TV dinners and ICE cubes LOL!

*

The next morning, he walked into the bedroom with a boyish smile covering his face and excitedly took me by the hand to show me his creation that he was SO proud of.

He made a “sun” out of gluten-free crepes and strawberries for me with freshly squeezed orange juice….jealous anyone?

After breakfast, he told me to go and relax while he did the dishes.

So I did!

*****

We spent the next few days window shopping, having “real” coffees together at coffee shops and going to movies.

On the Wednesday, we travelled to Sydney to stay at the Hilton Hotel….which was quite a treat for this country chick!

It was an amazing the view from our window on the 29th floor….thankfully I’m not afraid of heights!

That night, we went out to a posh restaurant on Sydney Harbour overlooking the Opera house.

One of the few times in my life that I've actually dressed up!

We had a gorgeous waiter with a French accent who kept re-filling my wine glass..eeeek!

I had to ask him to stop as I was quickly losing track of how much I’d consumed…..Mr Patient thought it was hilarious!

The dinner conversation was a reall hoot too~It centered around waitressing stories from my past.

Mr Patient knew that I’d worked in hospitality for years, but it was all before we met so we never really had a need to talk about it before.

I worked in restaurants in various roles for quite a few years, doing everything from waitressing to managing , to being a coffee Barista to a hostess.

One time, when I was employed as a door hostess at an exclusive restaurant in Brisbane, I got a warning “red card” from my employer after being caught asking patrons if they wanted to sit in smoking or “passive” smoking?

Another time, I got a severe talking to after throwing a fork back at a customer’s head after he threw it at me to get my attention after I continually ignored his finger clicking.

I remember haughtily telling the customer to “use his words”.

I never expected that years later I would be using those same words in a completely different context with my own children!

(For all you Northern Americans and Europeans reading this who are wondering how on earth I managed to get a decent paycheck being such a feisty young thing, let me explain that here in Oz, we don’t rely on tips to survive!)

Tips are rare here and waitresses get a decent enough wage already.
…..Well….not decent but when you’re 18….at least its money!

****
On the Thursday, Mr Patient and I went to the Powerhouse Museum in Sydney which was fantastic.
They had an ABBA exhibit and an amazing… 1980′s one as well!

I giggled to myself as I played “spot the aspie” all over the museum!

My favourite was a young man who was probably only about 16 years old, with the tell-tale awkward stance, deadpan facial expressions and quirky dress sense who came up to us in the 80′s exhibit while we were answering questions to a music quiz on one of the interactive displays.

We  got caught up in his long monologue about Duran Duran and the Australian music scene from the 60′s throught to today , and Mr Patient and I gave each other a knowing look and smiled and nodded in all the appropriate places.

Gosh he was adorable!

It truly was an amazing week.

Therapeutic, relaxing, teaching, enjoying and most of all….healing.

Thank you Mr Patient….. I know that we are going to be A.O.K…

Holiday snaps

Anyone who has been following this blog will know that my kids love swimming.

And I mean REALLY love swimming

I have been taking a few happy snaps of them with my cheap little point-and-shoot camera that Mr Patient bought for me because it was marketed as “un-breakable” and with my reputation for dropping things, tripping over and just being generally clumsy, this seeemed like the perfect camera for me!

It has another added bonus…..it is also 3m waterproof!

So I tried it out last week with the kids in the pool.

LOOK HOW MUCH FUN WER’E HAVING!

Waaaaaaahhooooooooooooooooooooo!!!! 

The MOST fun I've had in AGES!

Tonight, my best friend *Hannah and her husband *Kieran came over for dinner at Mum’s.

They live here in Radiator Springs as well.

IT.WAS.AWESOME!

They are flying up North to see *Kieran’s brother for Christmas so we had an early Christmas Dinner here complete with the decoration, candles and fairy lights!

As you can see from this slideshow, there was a lot of sillyness happening and it got worse as the night wore on!

*Hannah  ‘gets’ me and knows I have always been a little different to the norm. I can totally be myself around these people….

After dinner, the boys went outside and kicked a soccer ball around with *Kieran.

What a wonderful night.

I can’t stop smiling!

* Oh…..and they were very naughty……they gave me a voucher to a day spa in town to get pampered…WOW!

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Water, relaxation and rest

Yesterday, I thought that I didn’t have anything to write about but it seems I was wrong!

Yep!  We have discovered Nirvana here in this sleepy little gorgeous town that I called home for so many years of my youth.

( For the purpose of maintaining my children and mum’s anonymity, I’m going to refer to this town over the next few weeks as “Radiator Springs” or RS…..this is how my husband affectionately refers to it )

******

You see…….One of my mum’s best friends here in RS has a beautiful in-ground pool that she has told us that we can go and use whenever we like even if she’s not home.

Woohoo!

We have been swimming all 4 days since we arrived and it is has proven to be one of the BEST things ever for my kids.

I wrote earlier last week about how cathartic swimming has been for them, but what has really surprised me is just how much I have also benefitted greatly from it!

The refreshing burst of energy that I experience the moment that I take the initial plunge into the ice cold water when all my senses come alive at once, the magical warmth that I feel when I’m laying back on an inflatable lounger floating as the kids splash and play happily around me.  And the gentle lapping of the water against my tired and aching muscles to complete the ultimate in relaxation on every level!

The kids spend literally hours kicking, dog-paddling and having pretend battles with the pool “noodles” and we bring them home suitably exhausted, so it’s a win-win for us as they are generally so tired that they fall into bed each night and drift off quite easily.

My whole intention for this holiday period was relax, relax, relax….and thankfully, there is a whole lot of that going on.

I’m also very aware of not allowing mum to overdo it either. Theres no point in  wearing her out too! She has been here usual wonderful self and continues to amaze me with her kindness.

She’s so generous with her love, her time, her patience and her eagerness to help that she often puts herself last, and the kids and I become the first priority for her. I need to keep a close eye on her so that she doesn’t allow herself to get too exhausted and forget about her!

*****

I ran into an old “acquaintance” in town not long after I arrived.
We were never really “friends” but do know each other quite well. (Or used to at least).

Pfft….this person made me cringe and squirm in my seat when upon learning that my boys have autism started to say things like : “Oh, I love autistic kids, they’re so cute” and when Mum started to explain that I am home for a 5 week much-needed break and didn’t have the energy or time ( for the get-together he wanted to organize with another group of people I am vaguely aquainted with),  he launched into a monologue about how it’s exhausting at this time of year and how he “understands how I feel because his child keeps chucking tantrums because he doesn’t get her own way too.”

Oh please.

I giggled to myself thinking “You my dear have no bloody idea!”

That is my only gripe about being back here in RS….I love all my old school friends and church friends and desperately want to catch up with them but I simply have no time for shallow surface meetings with people I hardly know.

I don’t even have the time to do the things I WANT to do let alone the socially polite things that keep presenting themselves to me in hoards.

I wish I could be blunt like Harley is and just say “No, I don’t want to go”, but my NT brain filters down all the socially acceptable niceties to my mouth and I find myself saying things like ” Sounds great, keep me posted” and “lovely to see you again, we should definitely meet up”.

BLEUUGHHH!!!!

I don’t know if my cynical and seemingly heartless attitude is due to extreme tiredness, exhaustion, my 24/7 autism filter that I simply HAVE to pay attention to in order to protect myself and my kids, or whether I’m just getting old and crotchety.

Or maybe it’s a bit of both….I’m not very Christmassy am I?

Maybe you should all start referring to me as “Scrooge Mc-Fi”??

I got nuthin' to write…..

…..so, here’s my new favourite picture instead

Going swimmingly

Today was the first day of the school holidays (woohoo) and I know from previous experience that the kids really need to wind down from school for a few days before they can settle into the new routine.

So I decided to take them to the pool to get some energy burned and also so that I could chill out a bit.

We had an absolutely fantastic time (though I took a huge risk being that neither of the boys can swim so it was tricky at times watching all 3 of them!)

Lucas made me laugh when he discovered that splashing his big sister repeatedly in the face caused big girly tantrums!

Harley was timid at first but after a few hours, he started to jump into the water off the edge of the pool into my arms and Lucas learned to float on his back (with me holding him) so that was awesome!

There was so much sensory input there today, the boys absolutely lapped it up!

In the shallow end, they have jets of water that spurt up randomly and Lucas and Harley spent what seemed like HOURS playing cat and mouse with them.

We went outside at about 11am and had a picnic morning tea on the grass in the sun and Ella told me that she was having so much fun and that I am the BEST mum! 

I told her that I will remember that phrase next time I ask her to clean her room! Hehehe.

The boys spent another half an hour holding onto the side of the pool kicking their legs and blowing bubbles in the water.

I got the results that I was looking for…..they came home EXHAUSTED!!

And I was able to use the time that they rested to pack and clean.

*****

I have decided to go to Mum’s this Sunday (instead of Christmas Eve as originally planned) and stay there for 5 of the 7 weeks that the kids are on holidays for.

And I’M SO EXCITED!!!!!!

She is so sweet, she is flying down here tomorrow night (Saturday) so she can help me drive to her place as it’s such a long drive to do on your own.

Mr Patient will fly up for Christmas then back again a few days later.

Those of you that might be thinking that this is pretty full-on, I will just say 2 things: My mum is one of a handful of people that “get” my kids and understand how autism affects them and secondly…..I need a break…..seriously.

*****
I’ve had another couple of ‘those’ scary episodes this week.

The ones where I go completely blank and forget where I am and why I’m where I am and how I got there.

I have been “out of it”  and more vague than usual. This is a clear indication to me that I have allowed too much stress to creep in again.

UGH!

So, as of Sunday, I may be only popping in occasionally to bloggy land and writing and reading all of your wonderful words as I will have only very limited access to a computer.

Have an awesome weekend all.

It's all about the numbers..

Seven more days of school left for my children.

Twenty one more lunches to be made.

Fourteen more shoelaces to be tied.

Also fourteen more shirts to iron.

Two more child free days, two more speech therapy appointments.

One more social group and one frazzled and worn out mother.

Not that I’m counting!!!!!

Roll on Christmas I say!!

Mixed Emotions…

I have just finished finalising all of our plans for Christmas.

Our plans include travelling up to my Mum’s for Christmas and….(here’s the best part)……after New Year, Mr Patient and I are leaving the 3 kids up there for a whole week and coming back home to spend it together.

YAY!! We have some awesome ideas of what we will do and can’t WAIT to go into total relax mode

Mum with my kiddies

I have mentioned this plan to a few of my friends and have been REALLY surprised by the reactions that I’ve gotten…

Most of them have said things to the tune of :

” Wow, I could NEVER leave my kids for that long!”……

“Are you sure “……

and: “A  WHOLE WEEK! How will you cope”?

These responses have really puzzled me! I admit that I was quite hurt by these reactions, I felt like my parenting was being challenged and that I was being seen as an unloving mother..

So far – only 2 people have shared my excitement and it all got me wondering:

Am I a bad mother for WANTING a week without my kids?……

Why doesn’t anyone else ever feel this desperate to get a break?……..

Should I be more torn up inside about not knowing how I’m going to survive without them?

But I’m not feeling ANY of those things.

I feel happy. I feel excited and I feel ready.

And I don’t think that a week is really all that long anyway.

Some kids go to camps that last for longer and MY kids have already done well over a week without me….and guess what? We all survived!

Like when I was in hospital having brain surgery , I wasn’t allowed home for 2 weeks and at the time I had NO other option anyway?

Besides:  there is no-one on earth that I trust more with my children than my beautiful Mum.

She “gets” ASDs more than most people.

In fact her and Dad saw it in Harley way before anybody else and were the ones that gently nudged me towards getting him diagnosed in the first place.

Like I said….she GETS it!

Also,  I don’t have any family of any description living near me that I can call on for the little things like:

* Turning up to grandparents day / book week parade/ special assemblies/ fetes /presentation night etc at the kid’s school

* Collecting the kids from school because I’m running late

* Asking Hubby to grab me some milk on the way home from work so I don’t have to pile all the kids in the car

* Or anyone to give me the afternoon off so I can go to the Doctor’s, get a haircut or just get a break.

Anything that I need to do or any appointment I have to attend…..the kids come with me. It’s that simple.

Mr Patient’s job doesn’t allow him to be home to help with bathing the kids, cooking dinner or attending school functions during the week so….why wouldn’t I jump at the chance to leave my children in extremely capable hands in one of their favorite places so their mother can refill her severely depleted energy tanks??

Having to do all of those things yourself is exhausting! And throw autism into the mix and it’s off the scale some days.

I’m not bagging my husband at all. Due to his work commitments, he is simply unable to help with day to day life.

And that’s just life I’m afraid!

I realised that I honestly don’t feel bad at all and I realised that other people’s reactions were just them reflecting how “they” would cope onto me.

I prayed about all this and I  really feel like God was telling me that I need to realise that I am unique and not everyone sees things the way that I do.

And also that I need to develop patience for my fellow man and not get so worked up when I think that I am being judged unfairly as I did in this situation.

I REALLY felt like I  needed to defend myself and explain WHY it was ok for me to be so relaxed about this whole plan.

I know that not everyone is as blessed as me to have a mother that will do something so sacrificial for them and I am truly grateful that I do .

I also know that some children wouldn’t separate that easily from their parents either…..another thing that I’m grateful for.

And tonight as I sat down and watched “Evan Almighty” with my kids, there was a line in it that jumped out at me…….” If you ask God for patience……he doesn’t give you patience….he gives you an opportunity to develop patience…..

Hmmmm, Yes God…..I get it…..!

Playing the blame game

Well, this morning Harley woke up with a fever and a sore tummy.

Google Image

I immediately blamed myself for being an “awful mother” for not sensing this and making allowances for his shocking behaviour and mood this week.

No wonder he’s been so impossible and such a handful.

Then I remembered the meat pie that he had eaten last Friday night for dinner on our way to the Coast as there was not much of a choice of food available. And the nachos for lunch the next day as we couldn’t  find anything else even remotely gluten-free for him to eat.

The pie was no doubt full of nasty gluten and other preservatives and I know how gluten makes me feel – bloated, irritable and sick. I get cramping, I feel miserable and moody.

The poor child has developed more bowel problems lately and it’s possibly been aggravated by the food that we have fed him over this holiday.

What a shocking mother !

I know this child has communication issues at the best of times and when he’s sick he can only communicate with moaning and tantrums.

Which is what he was doing.

He often loses the ability to string two words together when he’s unwell and I misinterpreted all of this.

*sigh*

I immediately withdrew my “Mother Of The Year” nomination!

How did I miss this?

It was staring me in the face.

It was the answer that I couldn’t see because I was too close to it and my mummy vision was clouded by my anger and bitterness toward him.

He ruined our holiday and I was absolutely LIVID!

But I asked myself : How did I not notice my limp and lucid child who has been refusing food all day yesterday and this morning and connect the dots?

I have a very strong feeling that his moodiness and temper have been somehow triggered by not only the change in routine, environment and weather, but also by the changes in his diet which therefore affects his digestion, his temperament and his general well-being.

I’m still not sure whether this is all food related. He may be coming down with something nastier……time will tell.

The good news is – I’m no longer blaming myself as I received a beautiful email from a very close friend that I contacted when I found out that Harley was unwell.

She gave me a good talking to bless her!

She told me that no mother can predict everything and no mother should be expected to, particularly under such trying circumstances and that I shouldn’t keep putting myself down.

At first I closed my computer down after reading her email because I didn’t want to forgive myself.

I wanted to feel the awful guilt.

I needed it to be real.

I felt that I deserved this emotional battering for missing the vital tell tale signs that I believed mother’s should feel when their child is unwell.

But I went back and read the email again.

And I re-read it.

In fact I read it three more times until it sunk in.

I thank God for this friend.

I’m thankful for all the beautiful people that have commented on my dreary Woe-Is-Me blog posts over the past few days.

You have all touched me and helped me see sense.

***

I want to tell all of you other mothers who also struggle with the “ugly side of autism” occasionally that there is hope.

Just like so many of you told me – it DOES pass.

It’s hard enough raising these kids when they’re healthy.

We don’t need to put any extra pressure on ourselves as  mothers of ASD kids. We already have enough to deal with without beating ourselves up.

And we are soldiers.

We always prepared to fight on the front lines. We know we have no choice.

We love our kids even when they are feral and off the richter scale!

And the last line of the email made me laugh so I’m going to share it here…….

“If it makes you feel better : go and buy a thermometer and next time Harley is being vile – go check his temperature”

Explanation??

OK  

Google Image

.

I’m confused.

I mean REALLY confused.

Last night, I threw out all the visual cards in absolute disgust.

I figured that they were absolutely useless in this house. And you know what?

We had an absolutely AWESOME day!

It was SO different to “normal” routine too.

 The kids and I drove for an hour and a half North to meet my mum and my sister’s two daughters at a shopping centre that is halfway between here and her place.

My sister is working and Mum is staying at her house to mind the girls during the holidays.

I had a (wait for it…) SILENT car trip up there?

HUH? I could hardly believe that these were MY kids!

And the four hours that we were there in that noisy, crowded and busy shopping centre were an absolute pleasure!

Strange…..

At lunchtime, we sat in the food-court and halfway through our meal, a dance troupe started performing a half hour of dance routines with LOUD music RIGHT NEXT TO OUR TABLE!!

There were even tap dancer with their loud tappety tappety tap shoes banging on the stage.

And you know what?

Harley and Lucas turned their chairs around and watched it ALL.

NO visual cards to prepare them for this spontaneous event, NO forewarning about the entire day  and it was so damn noisy that I kept nervously looking at both mum and the boys ready for a meltdown to occur.

It never did!

After lunch the kids played in the play centre there and when it was time to leave, everybody hugged and kissed and the kids hopped back into the car for another PEACEFUL drive home!

We got stuck in road works and it took us almost 2 hours but still. PEACE!

I just don’t get it?

What really surprised me was that everyone that commented on yesterday’s post Visual Pfft all said that visuals don’t work for themand their children either.

And a couple of you actually said that the days that you DON’T plan are the ones that go the best of all??

I’ve had it drummed into me continually and read it in a lot of aspergers info that children with ASDs need visual aids to reduce anxiety and help them to feel more in control.

So why then do most parent’s find the opposite?

Is this just a big farce developed to create MORE stress in us parents who already walk a fine line?

Or is someone going to write to me and suggest that maybe I haven’t implemented these visual cards properly?

If you are – then kindly send that thought to ALL the people that commented and tell them that they are wrong too. Thx

In case you’re wondering, the visuals I made for our upcoming beach holiday on Friday have been filed away under “USELESS” for now.

I might take them, I might not.

I’ve quickly realised today that -just when you think you have aspergers figured out , it comes up and bites you on the butt and you realise that you know NOTHING!!!

And whilst I am SO thankful for a smooth and event free ENJOYABLE day and don’t really want to be a negative Nelly -  I am feeling a little uneasy.

When you’re parenting a child(ren) with and ASD, you never ever know what’s coming next….

Counting down the days……

This is going to be a very full week!

On Friday we are going here:

Jealous?

I think that it is one of the most beautiful beaches on the Australian East Coast.

The kids are SO excited.

Here’s another:  

But as al you ASD mum’s will know, it’s not just a matter of jumping in the car and driving….OH NO!

I spent the better half of today googling images of everything that I could think of to make up a “What’s happening each day” chart.

It is complete with images of the unit we are staying in, where we are stopping for lunch on the way, the length of the trip (shown on clock faces), what the pool at our unit looks like, the shopping centre we will have to go to buy food etc etc etc,

I also whiled away another couple of hours also on google images getting pictures of everything from tractors to a red car, to cows, to trains , to a blue car to a service station to make each child a “bingo” card that they can stick stars on as they spot them. Hopefully, that combined with the Nintendo DSs and the DVD player will make the 5 hour drive bearable!

I was chatting to Mr Patient and we were reminiscing about the first trip we took together not long after we were married.

We took a small overnight bag each, a shared swimming bag and the clothes on our backs and even he was also pretty spontaneous back then, we just up and went!

Now: we need to spend a week preparing the children, a day making up visual charts and reminders so that they will cope and I will spend hours the morning we leave making sure that every.last.possible.hurdle is predicted and a solution is put in place.

THEN

NOW!

I  admit that I seriously wondered whether we should just save all the hassle and stay home…..?

Here’s the kicker though…..

Ready……

We are only going for THREE DAYS!!!

Hmmm!

1 day down, 17 to go.

Well, I survived the first day of the school holidays intact (and surprisingly – so are the children)!

It’s amazing what craft, TV, Nintendo Wii and endless snacks will do!

Harley said to me this afternoon. “Mum, I don’t think I’ll go back to school. I like it here, I think I’ll stay home with you and Lucas from now on”

And I thought – I’ve got news for you son, and it’s all bad!

But it was nice to hear that from him because it means that he feels safe and happy here and that’s exactly how every mother wants their children to feel.

What I didn’t like about having him home is the new “sound” that he’s started making with his mouth.

It’s kind of a throaty, click that he does with his tongue. Weird and gross!

He did it twice in a row and I asked him to stop it and he continued on to do another 2 times straight after.

I then asked him why he went onto do it again after I’d asked him to stop and he replied….

“Because I have to do it 4 times Mum or I’ll have bad dreams tonight”…..

Hmmmmmm OCD anyone?

I’m hoping this passes quickly. It’s an awful and disgusting noise!

Ella helped me lunch and we ate it picnic style on the rug in front of the heater. Brrrrr, it was FREEZING here today!

Tomorrow we were supposed to be going to a park to ride bikes with a friend but the forecast predicts rain again so instead there will be an extra 2 kids here to add to the noise……

There will be a girl Ella’s age from her class and her little brother who is Lucas’ age. So it will be perfect for Harley. He can go and hang out in his room and not feel like he has to socialise but the option is there if he feels like it.

I thought about tidying the kid’s rooms for them in anticipation of tomorrow but decided against it as we all know what happens to tidy houses when a group of excited children get let loose on it don’t we!

And the same goes for the rest of the house.

There’s no point in mopping what will soon be covered with crumbs, sticky drink spills, toys and whatever else they decide to decorate with

17 more days Fi……You can do it!!!!!!!!!