Keeping the memory alive.

It’ s been a rough week for all of us and for once, autism isn’t to blame.

Today is the 4 year anniversary of my Dad losing his battle with cancer and I know I write a tribute every year and this year is going to be no different.

But this year kinda has a sick twist to it in that my Mum is in the very same hospital today that Dad passed away in back in 2008. *shudder*.

So why is she in hospital?  Well, she fell down her stairs and fractured her foot. It is awful and made more so by the fact that she is unable to weight bear on her opposite knee and neither my sister nor I live near her so she’s having to rely on friends to do anything as she’s not allowed to drive for 6 weeks.

Thankfully she has a great group of friends and she is in good hands but if you are a pray-er, please add my Mum to your prayers for a speedy recovery.

~

Anyway, as I was driving the children to school this morning, I told them what today was and asked them what it meant to them individually.

Ella sighed and said that she missed his silly jokes and then suggested that we call Grandma to see how she is. Yep…she’s as thoughtful as ever is my girl.

Harley said: “I can’t believe I was only 4 when Grandad died” and Lucas….

Well Lucas had a reaction that really stung.

Because when Dad passed, Lucas was only 18 months old and has no memory of Dad at all.  He asked me who Grandad was and it totally broke me apart.

I am thankful that Dad got to meet all of his grandchildren but devastated that my son has no memories of the wonderful man who Dad was and the realisation that he has only ever known Grandma to live in that big old house by herself really hit me hard.

 Lucas doesn’t remember being taken to the fire station where Dad worked and having these 3 photos taken; ⤵

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And he has no memory of being chased by Dad in shops when he ran away to find mischief  ⤵

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And he certainly wouldn’t remember being given his first lesson in shaving ⤵

But I remember all of these times and much more.

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I remember Dad giggling as he tossed his Grandson in the air ⤵

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And posing mid-hug with a little Lucas ⤵

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Dad was an awesome babysitter. Well, when he didn’t sleep on the job! ⤵

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And I remember how proud ha was of all 5 of his grandchildren. I love his proud smile in this photo which was taken on the day that we brought Lucas home from the hospital.⤵

Dad: I will tell my boy all my wonderful memories of you.

Your memory will not die out with me.I promise.

I am thankful that you input so much good into me and I will make you proud.

Love you, Miss you, Wish you were still here ♥♥♥ xxx ♥♥♥

Placing down the load.

So there has been a lot going on behind the scenes here lately. I’m not ready to share any of it publicly but I wanted to blog a beautiful inspiring email that I was sent by two different friends last week that really encouraged me.

A lot of you may have read it before, but it is so good and applicable to parents of special needs kids that I’m going to share it here again for those that may not have seen it…

A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, ‘half empty or half full?’… She fooled them all … “How heavy is this glass of water?” she inquired with a smile. 

Answers called out ranged from 8 oz. to 20 oz. 

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it.  If I hold it for a minute, that’s not a problem. 
If I hold it for an hour, I’ll have an ache in my right arm.  If I hold it for a day, you’ll have to call an ambulance. 

In each case it’s the same weight, but the longer I hold it, the heavier it becomes.” She continued,

“And that’s the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”

“As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced. 

So, as early in the evening as you can, put all your burdens down. 
Don’t carry them through the evening and into the night… Pick them up tomorrow. 

So for now, I’m placing my glass of water down for a rest to get refreshed and to ease my load. It’s gotten far too heavy to hold for extended periods and I need God’s strength more than ever.

I hope all of you realise what a wonderful and sometimes thankless job you are doing and that you are not alone.

Fi x

I’m being mocked by a list!

So it’s been almost three weeks since I have been a free agent.

Three weeks where I have had six straight hours to myself, five days a week.

A while back, I made a ‘later’ list.

You know….a list of all of those little things that have needed doing but you’ve never had to time to do them? I told myself (and Mr Patient) that once all the kids were at school full-time, that I’d tackle that list with gusto.

So I sat down today with a pen and decided to tick some of them off so that I could feel better about myself, and like I’d actually achieved something worthwhile over this three-week period!

OK.

So, number one was the basket full of sewing repairs.

I have a HUGE basket full of many items of clothing such as dresses with seams to let out, skirts with hems to fix and shirts that need buttons sewn on. Oh – and Hubby’s work pants that need to be altered too.

I peered into it and realised that none of it had been touched. It has been so long that dust has settled on the edges of the basket. It was not looking good!

I sighed and moved onto number two on the list.

2. Clean out the pantry.

I opened the doors and glanced in (which is kinda funny since I look in there everyday and I wasn’t sure what I thought was going to be different this time!) and nope – it was still a massive mess of opened boxes and mismatched Tupperware containers. An upturned cereal box with a trail of nutri-grain spilling out caught my eye and I quickly slammed the doors closed and went back to my list.

“It’s all good” I told myself, “You are exhausted, so you know that you MUST have done a LOT. You’ll see”!

Number 3. Tidy up the games cupboard. 

Now THIS one I knew I could tick off. I walked into the hallway to open what once was a linen press that we had turned into a games cupboard. I flung the doors open proudly so I could check out my awesomeness.

But I was startled to see boxes literally stuffed in and several loose games pieces on the floor.
The higher shelves were still immaculate but the lower ones….not so much!The second bottom shelf had some of Lucas’ dinosaurs gathered in a corner having a “pow wow” and for some strange reason…..there was a sheet stuffed in there? It hasn’t been used as a linen closet for years?

But then I remembered:

<<– See this photo?  See that little bitty screw and screwdriver that are stuck up in the architrave with blu-tack? Well, the cupboard usually has a child lock on it to prevent access by the smaller humans but I took it off a few weeks ago so that Ella could get to it easily when she had a friend stay over. I hadn’t told the boys that they could access it now but they have obviously found out!  And silly me forgot to re-attach it!

I sighed resignedly and glanced down at item number four hoping for a reprieve.

4. Re-organise our walk-in robe.

I laughed out loud when I read this, I KNEW it was a disaster – I got dressed this morning by putting on something straight from the ironing basket (un-ironed of course)!

My list sure wasn’t looking good.

I thought a good alternative would be to write down what I HAD done instead of pointing out to myself what I hadn’t.

Let’s see. Monday: Met a friend for coffee, put petrol in my car, made the lunches for the week at school, re-packed Ella’s bags for camp (don’t even GO there!), came home and slept for 3 hours. Dragged myself up to school to collect the kids, had an impromptu meeting with the teacher. Spent waaaay too long arguing with Harley over doing his homework, over showering, over packing up his toys, over just.about.everything! And fell into bed exhausted at 9pm.

No. Can’t write that down. That’s just a normal day. No special achievements there.

Tuesday: Vacuumed and mopped house, washed 4 loads of washing, baked 2 loaves of gluten-free bread and changed sheets on three beds. Not bad….but then I lay down on the lounge and slept for an hour before collecting the kids. Same afternoon routine : argue, be firm, still manage to lose, fall into bed exhausted.

Wednesday: Drove Mr P to the airport for his interstate flight, did the grocery shopping, slept for 2 hours and was woken by a text message from a friend. Met her for a quick coffee before collecting the kids.

After school fights, forcefulness and frustrations.

Rinse and repeat.

And today: 2 more loads of washing, fresh food shopping, cooked two meals and …wait for it…..slept for another hour.

There’s a theme emerging here! I seem to be doing a lot of sleeping. Hmmmm, maybe it’s my body’s way of saying ENOUGH ALREADY!

Or maybe it’s just all too overwhelming and my brain is choosing to shut down! LOL

I seriously take my hat off to mothers who manage to work outside the home as well as keep a house and family. I simply do not know how they do it. They are AMAZING!

I can hardly cope with the everyday stuff let alone my “later list”. And about that later list?

Well, if you’re looking for me – I’ll be curled up on some couch somewhere watching that stupid list BURN on an open fire! I don’t care if it’s summer here! I can handle the heat.

And then?

Well then, I’ll more than likely doze off

(Almost) Wordless Wednesday 15/2/12…my odd child!

I’m only just scraping in to Wordless Wednesday by a few hours here in Australia and I wasn’t going to post anything today but I just HAVE to share this.

I was heading to bed for an early night and went into the boy’s room to check on them first. I kissed them both and as I pulled up Lucas’ sheets, I noticed a big lump protruding from the bottom of the bed so I felt it but couldn’t work out what it was.  I went and turned on the hallway light to get a better look and had to stifle a laugh when I noticed him sporting an OVEN MITT on his FOOT???

Yup. That’s right. An oven mitt!

It was complete with food stains because it had been thrown in the hallway in front of the laundry (by a lazy me) so he’s obviously seen it on his way to his bedroom and thought: ‘Hmmmm……This big sock is pretty cool, I will put it on!’

What a thoroughly odd child!

But it did give me a giggle

Facebook and Thunderstorms.

I remember back when I was only a small child and the one thing that I was majorly petrified of was thunderstorms. And I also remember how I used to climb into my parents bed until it passed and only there and then, did I feel safe.

As a child you just expect your parents to be braver, stronger and wiser than you are. You assume it goes with the territory.

However, I’m sure that there were many times that things frightened or unnerved my parents, but they continued to stay strong for our sake because that’s just what parents do right?

Well….now that I’m a parent myself, I sometimes wish that I could still climb into my parents bed, pull the covers over my head and let them deal with whatever or whoever had upset me.

But I know that I can’t do that anymore. I have to be the provider of a bed to hide in and I have to step up and be the brave, strong and wise one.

And we all know how incredibly tough that can be at times.

I am realising that my children expect from me what I did from my parents and to be frank – that scares the heck outta me!

Because I am far from having it all together.

In fact, just today, I was “unfriended” by someone on Facebook whom I thought I had a good relationship with.  And it kinda hit me from left field and yeah – I’ll admit it: it really upset me! I wanted to go to my Mum in tears like I would have done when I was 12 and require her to say all the right things and make me “feel” better and put an emotional band-aid on me so to speak.

I wanted to find out what on earth I had done wrong and I wanted to stamp my foot and scream like a petulant child.

But I couldn’t.

A remarkable friend of mine wrote to me: “It is all part of the tapestry of life, dearest Fi. Life is too short to give energy to this kind of thing. Try not to let this person be ‘rent-free’ in your head space!”

 What awesome advice!

So here I sit, calling myself a Christian and knowing that I am loved and accepted by God BUT still letting silly little things like this steal my joy. It really is ridiculous when I KNOW in my head that they really don’t matter in the grand scheme of things. It’s moments like these that I get to choose to either learn from them an grow a bit more, or allow it to consume me and ruin my day unnecessarily.

And the similarity between my socially challenged children being bewildered by social reactions – and me being completely blind sighted by this unexpected unfriending was not lost on me at all!

I can only imagine how hurt my boys must feel when someone “unfriends” them in real life when they have no clue as to what they’ve done.

I have a better (though not complete) idea now of how confusing it must be to my boys to think that they’ve said and done everything correctly in a social situation only to be turned away by people that they really believed liked them for who they were. And it’s helped me to understand better why sometimes after school, Harley comes home and throws the metaphorical sheets over his head and hides from the world.

It’s because I am SAFE.

I love him no matter how he acts…..He knows that I will never unfriend him and that he doesn’t have to put on airs and graces with me.

And that right there – is incredibly special to me. I have realised that I AM the parent who can calm my child after thunderstorms and I AM the parent who provides the safety that he needs until the storm has passed.
Life is damn hard at the best of times with a neuro-typically wired brain…..but when every single social situation is as different as the seasons…..How much more challenging is it for those on the spectrum?

I am comforted by the knowledge that God will NEVER unfriend me no matter what I say or do and that is what I intend to teach my children.

Out of the blue.

I really love it when people surprise me.

It can turn a rotten day into a great day. Or a “better” day at the very least.

 My husband is referred to on this blog as “Mr Patient” but I’ve never (until now) explained the full reason for giving him this pseudonym.

It’s kind of a family in-joke. The fact is: He is probably one of the least patient people I know and therein lies the irony. Calling him “Mr Short-Fuse” or “Mr Can’t Cope” doesn’t really have the same comforting notion attached to it. People don’t know where to look or how to act when you describe someone the way it really is. So I opted for the kind approach.

But don’t get me wrong: Mr P is a wonderful man, a loving husband and a great father, but he just doesn’t cope well with the children and their noise levels and consequently: most of the child rearing falls on me.

No, it’s not ideal but I can see that he doesn’t handle them and their “stuff’ because I can also see a lot of AS traits in him that contribute to his lack of coping mechanisms. And both of us have developed big sensory issues that we never remembered having previously.

So I make allowances for this and usually take over the kid stuff to keep the peace.

However, this past week I have been under a lot of pressure from all angles. A lot has been going on and I haven’t managed my stress levels very well I’m afraid. I have been very teary, sleepy (a result of me wanting to shut down) and more than a little brain fried.

But as all mothers do – I’ve soldiered on for the sake of my kids.

Until this morning: I sat at the table eating breakfast trying to block out the cacophony of noises surrounding me.  There was screaming coming from Harley – something had set him off and I didn’t really care to know what.

Lucas was throwing his teddies at the wall and catching them on the rebound and Ella sat with her iPod buds in her ear in an attempt to block out the chaos. Half her luck!

Mr P was in the kitchen unpacking the dishwasher and every clang and clunk made my skin crawl. I felt like I was going to explode with anger.

I took my now empty bowl over to the sink, glared at him and stomped off to our room.  I KNEW I simply had to get a grip. But the tears flowed as I felt myself sinking deeper and deeper into the familiar territory that is depression.

I wondered aloud if I had taken my medication this morning and went back out to the kitchen to count the tablets in the box so that I could find out. As I turned the corner to the kitchen, Mr P took one look at me with my tear-stained face and slumped shoulders and said: “Woah….We need to get out of here”.

“I’m not going anywhere, can’t you see I’m exhausted” I screamed at him spinning on my heel. His shocked face didn’t register at first but it softened as he replied:

“No, ‘we’ meaning the kids and I. I’m going to take them out for a couple of hours and give you a break”

 I looked at him to see if he was messing with me.

“You’d really do that?” I enquired. It was an unusual offer for him to make. He knows that he can’t handle them all together and usually only takes a maximum of 2 at a time.

 “You need it, you need to rest”. He answered. “I will make it work. They’re our kids and I don’t do enough to help you.”

“But the boys need to be pre-warned, you can’t spring it on them like this” I protested.

“So tell them now” he countered.

Ella walked over to me at that moment and put her arm around me and rested her head on my shoulder. She said: “It’s ok Mum, I can help Dad with the boys, don’t cry, it’ll be fine, you’ll see”.

I walked into the boy’s room and sat down on Harley’s bed and told them that Daddy was going to take them all for a drive.

“Your eyes are wet” stated Harley.

“I’m hungry” said Lucas.

And with that – I knew that they would be ok.

Mr Patient then ushered me back to the bedroom , closed our blinds and pulled back the sheets.

Almost two hours later I woke up refreshed and with a restored faith in my husband.

 This is why I KNOW that God is good.

 He will always provide the rest that we need but it doesn’t always happen in the way that we expect it will.

Something’s gotta give.

Thank God it’s Friday.

In this house – it’s not just a cute phrase that we toss around ….we really literally DO thank God when the weekend arrives because school days are a special kind of hell.

This week has been a particularly hard one with 5 MAJOR meltdowns to contend with and they’ve all left me feeling completely depleted.

And it’s not just me that’s being directly affected. This morning, Ella had to step up (as she has done many times in the past) and be the extra parent to ensure that we all made it out the door in time.

She had to prepare Lucas’ breakfast, keep on top of him to make sure he actually eats it, help him get dressed, clean his teeth and put his lunch in his bag.  She then helped him make his bed and then had to go and do all of these things for herself as well.

She is not quite 12. It’s not fair. She shouldn’t have to take on so much responsibility at her age.

But it had to be this way. Harley had a level 10 meltdown this morning. And those ones are the absolute pits. I have bruises on my legs and my head still throbs where I was kicked. He wasn’t in control of his body and was unable to function in any sense.

It was like an out-of-body experience.

Bad.

I was here, but unable to pacify Harley and look after everything else as well so I NEEDED her help and I seriously don’t know what I would’ve done without her.

I was lying beside Harley on his bed while he kicked, screamed, thrashed and cried and was on the phone to my Mum at a ridiculous hour, because I couldn’t bring Harley down again. It was frightening and overwhelming even for me. I asked Mum to pray with me. I had no clue what to do next because he was so distraught and in such a state that I had to stay close so that he didn’t hurt himself. My wounds will heal, but I didn’t want him to self-harm.

Long story short: I think he is struggling with the social aspect of school and will be delving deeper into this as of Monday. The seed was planted this morning with the teacher so I have to gather my facts over the weekend before discussing it further).

 After I’d dropped the kids off at school this morning, some lovely mothers invited me out for a coffee and I jumped at the chance. I NEEDED a wind down and bless them – they were just what I needed.

In the past, there have been times that I have spoken to friends with NT children only to be told “but all kids do that”. But when I explained what we’d been through this morning, they confirmed for me what I’ve wondered about all along.

No. That’s not “normal” behaviour for an 8 old yr old child. Sure, NT kids certainly lose it on occasion, but not with the frequency that we deal with it and they duration is much shorter for NT children.

And then I described what my beautiful daughter had to do this morning and they agreed that it is a lot to expect from her.

So yes…I do feel bad for her…..but what are my options?

I don’t see how I can manage without her and that conflicts with my desire to free her and let her be the kid that she still is. Mr Patient was away again with work, he returns this evening and I have no family here. She was all I had.

So I have been consoling myself with the thoughts that perhaps parenting will come more easily to Ella than it did to me. Because she likely won’t see anything in her kids that’s worse than what she’s grown up with. If anything, she will wonder what’s wrong if she has calm and placid kids!

Me?
Well, I grew up with one sister and neither of us had spectrum related behaviour issues to deal with. I’ve spoken at length with Mum on this too.

That’s why this is all so new to me. I see nothing that reminds me of my own childhood. I have no memories of my Mum sitting in a puddle of tears crying because her heart was breaking for her child who isn’t even close to controlling their emotions. Or feeling her almost tangible anxiety over her child that has no way of communicating other than that kind of behaviour when in distress.

And I’m very aware that my daughter sees far more than a pre-teen ever should.

I just don’t know how to change this.

Dirt Boy.

Remember how I told you all before that my boys – though both diagnosed with Aspergers – have completely different sensory profiles?

Well, yep. We saw that in action BIG time yesterday

I took the children to a local park after school with a friend for afternoon tea. They all had a fabulous time and are already asking when they can go back so we hit on areal winner.

But this story begins after we came home last night and the “fun” that followed

(Just as a reminder….Harley is the germ-phobic, dirt avoiding, noise hating child who washes his hands frequently in a manner that’s borderline OCD. In fact, he won’t even use a public restroom unless he has first checked that there is in fact soap in the dispensers. He did this yesterday too  Whereas Lucas is the complete opposite: he runs, he yells, he plays in water and mud and doesn’t particularly care what state his hands are in. )

So having such different sensory needs sure makes for a fun life let me tell you!

~~~

After we arrived home, I asked the kids to remove their shoes and throw their clothes into the laundry hamper and hop in the shower. I was most surprised when Lucas actually did all this BY HIMSELF but my biggest surprise was still yet to come.

We ate dinner, cleaned their teeth and headed for their bedrooms to start the story book, kiss and cuddle routine when I noticed a trail of dirt leading towards Lucas’ bed. I figured that it must have fallen out of his shoes so I grabbed the broom and swept it up.

I returned the broom to the kitchen when I heard Mr Patient yell out : “Fiiiiiiiiii!, You HAVE to see this!!!!” So I rushed back in there CRINGING because it was one of those ‘Uh-Oh’ cries. And yup…..It was for good reason!

On Lucas’ window sill which is directly over his bed, there was a mound of dirt that was roughly as high as an upturned cereal bowl and in the top were 3 little weeds that Lucas had somehow smuggled home from the park WITHOUT ME KNOWING and he had ‘planted’ them!   And the dirt that hadn’t managed to stay on the sill had spilt ALL down his wall, into his bed and under the covers.

Lucas was beaming and as proud as punch as he showed us that he had ‘planted some flowers to make his room pretty’.

Well, after we thanked God that he hadn’t decided to ‘water his flowers’ and had picked ourselves up off the floor after hysterical laughter, I decided that I was going to buy him a special pot and some real flowers to plant in the morning.

So 6 dustpan loads, a new set of bed linen and a through vacuum later – we put the boys to bed an hour later than usual.

And today I followed through with my promise to help him plant a proper garden and purchased some pots and plants. I went to the nursery and found these wonderful potted flowers from a company called: Ability Options which is a company that provides employment to individuals who are disabled and allows them to live with dignity within the community.

You can read more about their  Wholesale Nursery >>HERE<<.

So next I went and I purchased three small pots with the intention of letting all the children do one each. But Harley took one look at the dirt and went pale saying: “Ah Mum….Is it ok if I don’t do one?”

I giggled. I’d expected that.

So Lucas was in sensory seeker heaven as he helped me dig out the potting mix, and re-pot the blooms.

His ‘big boy’ job now is to water them everyday and keep them alive.

And he’s promised NOT to plant any more flowers anywhere else in the house LOL!

Enjoy these photos. I’m just annoyed with myself for not thinking to grab the camera when it first happened!

Welcome to high-functioning autism. It’s not as rosy as you might think.

Welcome to high functioning autism.

This is the side of it that breaks a parent’s heart.

Yes, having a verbal child is a blessing I admit, but having that same verbal child spend an entire day wearing his neuro-typical mask then come home being completely unable to communicate his fears, needs and emotions to you is extremely frustrating for him and for you.

He becomes non-verbal when he is in complete meltdown. He is unable to do anything but thrash, grunt groan and scream.

Because in our experience, verbal does not automatically mean ‘proficient at conveying emotions’. But in fact , I’ve noticed that it causes society to incorrectly assume that there are no hurdles to overcome so allowances are not made.

~~~~~

It’s been one of those days. The ones that make you want to curl up in the foetal position in bed with the covers over your head until it passes.

Or something like that.

If I were the throwing type, I’d pick something up and hurl it right now just so I could get the satisfaction of hearing something smash.  And maybe when I look at the thousands of tiny pieces I could imagine them to be my anxieties being destroyed?

Who know….? Maybe not.

There just isn’t enough room in my brain to fit all the coping mechanisms that I need. There’s barely any space to look after myself.

I still don’t know what happened to trigger the explosions… I may find out…I may not. But what I do know is that watching my child sit in the back of the car kicking, screaming and crying really hurts.

It hurts both physically and emotionally because I am usually the one in the direct firing line of all of the angst, anger and rage. You’d think I’d be used to it after all this time but no, it still kills me to see my boy in a state that he is unable to find his way out of alone.

We sat in that stupid school car park long after everyone else had left this afternoon because I knew that I couldn’t possibly drive until I’d managed to bring him down again.

And so I admit it…..I walked.

Not far, only a metre or so, but far enough away from the car so that I could no longer hear the cries and screams.

Far enough away that I could try to gain some perspective and muster up some strength.

Far enough away that I could pray out loud in a voice that I could actually hear myself - one that wasn’t drowned out by autism at it’s very finest.

I took the other 2 children to a safe distance, away from the human tornado that was filling up the small space in the tiny car, and we sat in the gutter and we waited.

I had my eyes fixed on the vehicle the entire time so I knew he was safe but I just couldn’t listen to another minute. It was doing my head in.

I hate feeling that darn helpless.

Eventually the screams turned to sobs and the sobs turned into silent tears so I climbed into the backseat of my cramped little hatchback and wrapped my arms around his quivering body and held him close while he trembled and sobbed.

His head was buried in my lap, his hands were clamped firmly over his ears and his eyes were squeezed shut despite the tears that kept falling.

Together we stayed there hugging, enveloped in silence for what seemed like an eternity.

We were so close but so far apart.

Living in the exact same world but experiencing it so incredibly differently.

Both crying but for enormously different reasons.

I looked down at my mess of a child breaking his heart for reasons I may never discover and asked the same question that I have asked many times before:

Why does it have to be this damn hard?

Puddles and Swings….

Alrighty,

Here it is…..I’ve decided that I will indeed start a new blog for all my non-autism stuff.  I really feel the need for somewhere that I can be less serious and more lighthearted and blog about whatever the heck I feel like without letting this blog take a backseat.

So far it only contains 1 post and the “about me” section but eventually  I will get it up and running.

Wonderfully Wired will still be my primary blog but the other one exists solely as a venting place and somewhere to “let a bit of crazy out” so I don’t scare you all away from here  ;)

If you’re curious and wanna take a look…here tis:  Click >>> HERE <<< But remember…..I warned you!

Regrets…I’ve had a few.

Addendum:

I’ve learned that there is a gaping distance between “creating awareness” and putting yourself and your family in the firing line.

There are some decisions that I’ve made in my life that have catapulted me right where I want to go and then there are others that I kinda wish I made differently.

Like the decision to “market” my blog.

I have no intention of becoming a “writer” or a published author. (At this stage).

I am not interested in advertising on my blog to make money , and to explain my reasons for blogging, let me go back to the reasons behind why I started it in the first place.

It all started (believe it or not) in therapy. I was seeing a prayer counsellor to try to make sense of my life and to learn some coping strategies on how to deal with the emotions attached to my newly diagnosed son, my recently deceased Dad and my overwhelmingly out-of-sync life.

She would set me homework every week of writing out my thoughts and struggles in the form of a letter to God and each week, I would bring it in and pray through the points with her.
Well, I soon discovered that writing it all out was really really helping me to process things and get my head around what needed to be dealt with and I felt a massive release once I’d “laid my troubles down” in print.

So this blog was born.

It was originally only something that I told close friends and family about and never intended for it to be quite so public. In fact, in the early days, it was only accessible to those that I chose to give the link to.

During this time, I started reading other Mother’s blogs who were walking a very similar path to mine and many of their words resonated with me. So gradually I removed my privacy settings and started to leave comments on other blogs.

Then before I knew it, I was being accepted into the very warm and inviting autism community with open arms and I felt all warm and fuzzy.

Very soon, my blog roll grew, my stats went up and I soon realised that there were actually people out there who cared about our little lives and it felt good! I so badly wanted understanding for my boys and for their struggles that I jumped into the role of advocate with both feet without considering many of the consequences.

So, I decided to reactivate my Facebook account after a 2 year hiatus because I really honestly believed that this would help spread the need for understanding autism better and help to pave the futures for my boys by increasing awareness.  But what I didn’t think about was the effect that it would have on my blog and particularly on my writing, not to mention my self-esteem.

In fact, I wish I’d never ever published my blog to Facebook.

There. I said it.

Writing is an extremely subjective field. People either love what you write or they hate it and usually there is no middle ground. And because I started to link to my blog on FB, the knowledge that people who I would see in my everyday life could possibly now read it, has caused me to be a lot more censored in my writing.

I stopped writing about the things that mattered to me and started writing watered down versions of what I really wanted to say and overindulged in general and no-confrontational topics. Or I poured out my heart causing those that I know in real life to either avoid me, or change their opinions of me because the mask I wore every day had been removed.

But the thing that is first and foremost in my mind with every.single.post that I write is the words of someone who I once held dear. This friend wrote to me on several occasions to tell me that I was damaging my children by writing about them and that I should’ve had more of a filter with what I wrote about.

And yes…I agree on some levels.

There were times that I probably could’ve perhaps provided less personal details but I learned from them and deleted damaging posts from my archives. But her words stung me because I so desperately wanted to be a great mother and felt like my every move was under scrutiny and open for public judgement.

But I couldn’t very well complain could I?….I’d done this to myself after all.

Because I’ve not written about friendships in particular, most of you wouldn’t know that I’ve had 4 very close friendships completely nosedive and fall apart in dramatic ways over the last 7 years. But it’s time for me to delve a little deeper into this to explain where I’m coming from.

None of these friendships were in any way related to each other, none of them occurred at the same time and it hasn’t escaped my attention that I was the only common denominator in all of these friendships.

Says a lot doesn’t it?

Well…yes, and no.

I’ve since realised that all of them HAD to come to an end because they were all toxic on some level and not what I needed in my life. With most of them, I was being controlled, manipulated and completely walked over. I rarely stood up for myself and took a lot on board that I didn’t really need to. I listened to every word that they said and constantly felt guilty about who I was, what I thought and what I believed. It changed me into a guarded, sometimes suspicious and fearful friend and it really really hurt.

It has greatly affected my writing and combined with the fact that people who were once oblivious to my blog now know about (and sometimes read it), I have often wondered why I didn’t just leave well enough alone.

And with that in mind, I’ve made the decision to stop publishing this blog on Facebook and to go back to the safe confines of the autism community. I’m going back to what I know and understand, and as far as possible from the scrutiny that I have brought upon myself by putting us all out there.

It’s going back to the early days of my blog being read only by those who care about us and want to stay in the loop and to those that have subscribed because they are interested in reading about us and our corner of the world. To those that put “aspergers”, “autism” and “SPD” into search engines and those that can offer support, advice or a cyber hug.

I know this will greatly affect my stats but I no longer care. I’d rather be read by 5 people who want to read as opposed to 300 who are just being nosey.

My real life friends are extremely cherished by me and they know who they are, and I hope that they will continue to support us whether they are directly affected by autism or not.

This blog will still update on my Wonderfully Wired Facebook Page, but not to my personal Facebook profile.  I will also continue to tweet and update on Twitter because most of my followers are autism related, and I’m considering starting a new blog for all my “non-autism” posts.

I’ll keep you posted on that when I decide

But for all of my regular, loyal readers, nothing is going to change for you, my blog isn’t going private it just won’t be advertised to anyone that doesn’t have an active interest in it.

So in saying that, I hope to see you all back here soon but if not….I understand.

Love to you all

Fi xx

Applique – the cheats way!

In keeping with my promise to myself to blog once a week about something other than autism, I decided this week that I was going to finally get around to doing one of the decorating ideas that I have been wanting to do for a long time.

And the best part is that I was able to combine two of my favourite past-times for this activity.

Charity shopping and sewing. (Well…..ok… So it’s not REALLY sewing….I cheated, but if you read on, you’ll catch my drift .)

So there’s sewing, and the other great love that I also got from my Mum is op-shopping. (Opportunity shops).

I simply LOVE to poke around second-hand stores….I find the thrill of the chase exciting and absolutely adore finding bargains and one-of-a-kind pieces. I admit that sometimes you really have to pick through a lot of junk to find a gem but I think when you do – it makes it all worth while. A lot of my house is decorated with eclectic finds that I have made over the years.

So a couple of weeks ago, I came across a beautiful appliqued white double bed quilt cover. Now, I am a big fan of embroidered fabrics and appliqued linen so when I saw the $6 price tag, I couldn’t walk past it. I don’t have any double beds in my home but I knew that there would be SOMETHING that I could do with this fabric as the colours were all very similar neutrals to what I already have in the house.

It was packaged up in clear plastic to keep the dust off it and I assumed that this design was all over the cover but I was wrong.  In fact, when I got home and opened it – this is what it looked like:

I was disappointed to discover that the design only covered the bottom left hand corner and that there were only a few flowers on the entire cover.

But for only $6, I could hardly complain!

Anyway, I had a few ideas in my head that were all to do with our new guest room (Harley’s old room).

 I knew EXACTLY what I was going to do!

The colours in the floral design went perfectly with the colours that I already have in the guest room.

Can you see where I’m going with this?

(Oh….and by the way – see that frame? It cost me $3 at the same charity shop months ago.)

~

Anyway….I had bought this blue floral quilt cover that is on the guest bed on an earlier op-shop trip for only $5.

B I was always disappointed that it didn’t come with a pillow case. But I still bought it because I loved it and figured that I’d work something out eventually.

 I threw my latest purchase onto the kitchen table and went and rummaged in my wardrobe until I pulled out what I was looking for.

These 3 blue cushion covers that I had bought on yet another trip to the charities that were only $1 each that still had their original price tags attached!

They were brand new so I bought new inserts and they were good to go.

Now….back to my plan

I decided that the beautiful appliqued flowers needed to be on these cushions but I didn’t much fancy the idea ofsewing them on so I turned to my trusty iron-on fabric webbing.

 I took a deep breath and took to the quilt with a pair or scissors!

There was no turning back now!

I carefully cut around each flower.

 Then ironed on the first layer of adhesive.

After that, I cut closely around the fabric until I got the shape that I required.

I cut as close to the stitching that I could without nicking it so it wouldn’t fray.

Next I cut around the shape again to ensure that the backing wasn’t going to stick to anything but the cushion.

Lastly I peeled off the backing paper to reveal the webbing and then ironed the appliques right side up on the cushion covers.

I’m pretty darn happy with how they turned out! And no bad for less than $3 per cushion!

****

 I had some flowers left over so I racked my brain to try and think of somewhere else I could use them and my own bed came to mind.

On our bed was just a plain white quilt with appliqued trim and could do with some livening up.

So I searched in other rooms to see if I could find what I was looking for. And hooray I certainly did!

This was my bed before:

Pretty boring hey!

And I found these plain white and lime green coloured cushions were sitting up in another cupboard gathering dust

from when I’d rescued them on yet another charity crawl!

And so now – here is the after:

I LOVE it!

And here endeth my post for today. Hope you’ve been inspired to walk on the wild side yourself.

Fi x

A brand new ending.

Everyone told me I’d be sad when my youngest child Lucas started school.

Well ok, I am sad, but not for the reason that people expect. Sure I miss him but I’m not distressed or pining for him. I’m excited for him and am thrilled to be able to finally have a minute to myself to take a breath.

No-I’m sad because right now it feels like I’m watching a movie on repeat.

But because I’ve watched this stupid movie before and I know how it ends, I know that short of walking out of the room – I’m going to have to watch it to completion in wide screen view whether I like it or not.

It’s like an annoying case of déjà vu.

And this stupid movie is all about Lucas’ coping mechanisms for school – It seems that they are on red-alert ALREADY! And it’s only day 2.

I really thought we would get a LOT further in than this.

Sigh!

One of his teachers approached me this afternoon and asked how he went last night at home. I sighed and admitted that he was a complete basket case. Teary, emotional, cranky, tired and unapproachable but I didn’t think anything of it because I assumed that all Kindy kids were feeling exactly the same way.

Weren’t they?

But I didn’t tell anyone this.

I told everyone who asked me how much he loved his first day of school…and he did, but he didn’t cope very well.

So why didn’t I admit it?

Well…because I didn’t want to be THAT mother again.

I didn’t want to play the stupid flippin’ autism card this early in the piece.

I’m sure everyone is sick and tired of hearing about the hassles we have had with Harley and I wanted SO BADLY for it to be different this time. I deserve that at least don’t I?

It seems not.

This morning after the bell rung, the children all sat in the quadrangle and were taken off into their new classes one by one. All of the kindy, year 1, year 2 and year 3 kids had gone to their classes but I spotted Lucas (because he was the only one holding a stuffed monkey) sitting in the quadrangle amidst the much bigger year 4 kids looking lost and confused.

I alerted the teaching staff and he was walked to his class. I should have known then that the day started on the back foot.

And this afternoon, the teacher who summoned me mentioned that Lucas had a lot of trouble settling today. He didn’t understand or follow all of the instructions, he chewed relentlessly on anything that he could get near his mouth and he seemed overwhelmed and bewildered by the kids surrounding him.

She said that he had a few teary episodes but other than that he did great.

My heart sunk right into my shoes. This was all sounding waaaaay too familiar for my liking – It’s the same dumb movie that I have been watching for the past 4 years. Only this time it’s an updated version. This time it has extra added special effects. 3D in fact – the 2012 version.

I started to fret but then made the decision that I absolutely wasn’t going to have this. It doesn’t have to be the same movie replayed time and time again and I decided then and there that I refuse to be just another passive movie patron anymore.

Not if I had anything to do with it.

It was a real light-bulb moment for me when It dawned on me that I know the original and only author of life.

The alpha and Omega. The beginning and the end.

My God is the Director AND the Producer of everyone’s life movies and I know Him personally….I’m telling Him to go back to the script writers and demand that they change the stupid ending. I’m not having another drama on my hands. This one’s going to be a feel-good movie with a lot of comedy for good measure and a happy ending. People are going to talk about this movie for ages. It’s going to be a family friendly movie with a ‘choose your own adventure’ clause. And it’s going to be AWESOME!

None of this ‘woe is me’, ‘my poor child is destined to be a mess’ crap. This is going to be a great year for all of us.

Ok. So that’s settled.

Next task : Search for the stupid oxygen mask that I seem to have momentarily misplaced!

Dear Teacher…

At the beginning of each new school year, parents are required to walk a very fine line.

And that line is the line between advocating for our children’s needs whilst not undermining the teaching staff. Because these are the people who are trained to be teaching our precious children for approximately 40 weeks of the year so keeping a working and healthy relationship with them is absolutely vital.

But when you have a child (or children in my case) with extra needs, that line becomes even finer. Because, like ALL parents, we want our children to reach their full potential, but we also realise that it’s going to take a LOT more guidance and assistance for them to reach it than it will for a typically developing child. And we need to know that the teacher fully understands this.

In this instance – I am assured that Harley’s teacher for this year DOES in fact “get” it.

I was so impressed and grateful when we collected the mail earlier this week and received a letter addressed to Harley. It was a letter from this teacher outlining anything that’s changed in the classroom along with a few photos so he knows what to expect.

Top points for her!

As I read the letter, there was however one point in particular which leapt of the page at me and my heart started pounding: ‘In our class, we get to choose where we would like to sit each day. You may choose to sit in the same spot every day or move about some days’….

I think it’s a great idea but I will be chatting to her about the possibility of implementing an idea that a friend gave me…..to slip a pillowcase over the back of HIS chair so that no matter whereabouts in the room he sits….he will still have at least one thing that remains “safe” and “constant” and “predictable”.

I’ll keep you all posted on how that goes.

Because children with an ASD come in all shapes and sizes, even two children with the exact same diagnosis can be polar opposites (as is the case with my boys).

So, for a teacher to apply the same techniques that worked on one child with AS one year might not necessarily work for my child this year. (As I am finding out myself my parenting two little AS boys with very little other than their genes and diagnoses in common!)

Like I wrote earlier: I have no intention of marching into school claiming to have all the answers. Because, I don’t. And I also have absolutely no teaching training, no special needs training and no professional qualifications in working with children whatsoever.

But what I do have is inside knowledge on my child and how autism looks on him – as well as an insight into how he may respond in certain situations. So it would be remiss of me to not offer up all this information that I have accumulated over his short life if it may help both of them to succeed

Anything that will help him to settle and learn will be in the best interest of everyone.

And this is the reason that I have spent the past week updating Harley’s one page point form “About me” sheet and writing one especially for Lucas so that I can hand them to their teachers on day 1 of a the new school year. They are laminated and ready to go tomorrow

~

You can read them both by clicking on the links here –> for  Harley’s teacher letter and here –> for Lucas’ teacher letter.

~

All ready for big school!

I also ALWAYS include a copy (for the teacher to read at their own leisure) : a copy of MOM-NOS’ BRILLIANT presentation that she gave to her son Bud’s class buddies to help explain why he says and does the things that he does.

The series is called: a hairdryer-brained kid in a toaster-brained world. Once you’ve read this first post…..click on the link at the bottom to read the whole series of posts. I promise that you won’t regret it.

And on that note…..I’m off to iron uniforms, make lunches and make the most of the last few hours that I have left at home with my 5-year-old who will be a big grown-up school kid JUST like his siblings as of tomorrow!

Wow…..where did all those years go?

How do you prepare yourself, your child and your child’s teachers for a new school year? I’d love to read all of your answers.

What’s for dinner Muuuuuuum? Argh!

In keeping with my promise to myself, I’ve just written the first of hopefully MANY posts that aren’t specifically about autism for this year. I’m finding ‘me’ and who I am and what I like.

This is the #yearoftheoxygenmask after all

So…..

~

There are four questions that I absolutely HATE in this house.

1. How much longer?

2. Do I have to do my homework?

and

3. What’s for dinner?

(Well, actually – this is a family blog so the fourth question that I hate will have to be left to your imaginations)

My answers to the top two questions are usually along the lines of:

1. “As long as a piece of string” (or never if you keep nagging me)

2. “Absolutely” “Hell yeah” or a sarcastic “No, We’ll just hand in a blank book” (which incidentally is NOT a good idea when you have extremely literal aspies!)

But for the third question, I usually fumble with my words and um and ah because I’m not known for being very organised in the whole cooking department. It is partly because I see it as a grand waste of time because my minions refuse to eat almost everything that I cook (therefore making me feel like a pile of manure) and it completely sucks having to think of something new to cook EVERY night knowing full well that it will probably be rejected anyway.

But  hoorah! Now I have a plan.

~

OK….

(For those that know me…..don’t fall off your seats in shock- I know that creativity is not my strong point) but when I saw something like this on Pinterest a while ago – I have had it stored in my memory bank ever since and have been determined to try and make one when I got a spare moment.

So I found a small snippet of time (when I was able to hide from the kids and their incessant demands for me to entertain them, feed them garbage or sort out their latest squabble) and I made it and I’m super proud of how it turned out!

I struggle every single day to try and think of what on earth to cook at mealtimes as I have such fussy eaters in my family. There are a few tried and tested recipes that they don’t necessarliy actually eat ALL of but there are elements of every dish that they will have.

And lookie here 

I ACTUALLY made this!!!! (shock, horror, gasp!)

The idea is that every Monday, Ella gets to pick a meal, every Tuesday Harley does, Wednesdays Lucas does then the same order on Thursday, Friday and Sunday nights.  Mr Patient and I get to chose a special meal for just us for Saturday nights and tonight he cooked me Cajun blackened Chicken with pineapple and shallot rice.

Yup...he's a keeper!

The kids have to choose from the pile of meal cards that I have made up and because they get some say in what we will be eating….they actually enjoy it!  And the best part is that being visual learners – they can see at a glance what is for dinner so they can QUIT ASKING ME!

It’s a complete win/win don’t ya think?

Oh …. and another bonus? My grocery bill came down by $50 this week because I only bought the things that were on this week’s meal plan. Seems I’ve been buying a lot that I didn’t really need all this time! Ooops!

***

Finding a little bit of happy….

As I sat down at the keyboard this afternoon, I wondered where on earth I should start after a well-needed long-break from the interwebs.

Some of Dad's books

Should I start writing about the overwhelming bursts of grief and sadness that I experienced whenever something at Mum’s house would trigger a memory of Dad? Like the day I opened a cupboard in a bedroom looking for a spare pillow but instead found Dad’s Firefighter’s axe, helmets and uniforms stored there? Or the bookcases that are still crammed with the years and years of steam train memorabilia that he had amassed over his 61 short years?

No…that’s still too raw to write about. Seeing these kind of things is like a punch to the stomach – it continues to cause pain even hours after the fact.

So maybe I should write about the person that I ran into in town whom I haven’t seen for years that announced to me that she thought that my boys were “kinda weird and awkward”  and that they “freaked her out a little bit”? 

Dad's helmets

No, it isn’t going to do anyone any good by focusing on hurtful words whether they were intended to inflict wounds or not. Or perhaps I should write about the BBQ that we all went to that I had to make a hasty retreat from with Harley because he went into an extreme anxiety meltdown because he had taken something that I had said to him waaay too literally.

Nope again. These things I might re-visit later on when I’ve had a chance to work through the emotions attached to them and can learn from those experiences rather than blurt a whole lot of negatives that I will one day regret. God will help me to grow through these experiences but I’m not quite able to see the good in them just yet.

So instead, today I want to write about finding happiness.

If you’ve typed ‘define happiness’ into a search engine and it brought you here – you may be disappointed. You’re not gonna get the formula for happiness but what I can offer is an insight into the goings on of my little family over the past month or so and how we have managed to be content with our lots in life.

Happiness comes in so many various forms that it’s impossible to apply a one-size-fits-all approach to discovering it, but I have been thinking a lot recently about what true happiness really means and have wondered how it applies to my own life.

But firstly, I think it’s important to realise and note the difference between happiness (the emotion) and a deep-seated joy (state of peace and contentment). I believe that you can be filled with joy but still experience times of sadness and also that you can have a thankful and joyful heart, but still struggle to feel “happy”. And that’s all totally ok.

In the bible it says that the joy of the LORD is our STRENGTH and that it SO true for me. I find that in the times of my biggest struggles, choosing to rejoice and remain in that state of deep joy DESPITE what is going on around me really does allow God to strengthen me. I can still be sad but the strength that comes from the joy sustains me.

And that’s what I think the difference is between happiness and joy. Happiness is fleeting….joy is permanent IF you make the choice.

I love the quote:

“Being happy doesn’t mean that everything is perfect, it just means that you’ve decided to look beyond the imperfections”.

I’m really beginning to see that everything in life really *is* all about choice.

There were a lot of crappy things that happened these school holidays and I won’t lie and say that I handled them all (or my emotions) appropriately but what I will say is that making the decision to move on and not let other people’s words steal my joy was a fabulous decision.

This break that I have just had up at Mum’s with the children has been oh-so cathartic for me and that’s why I have decided to take this blog in a new direction this year.  Whilst it will still be primarily about our family’s daily life with autism, I will also be incorporating anything that takes my fancy!

I’m starting to realise that last year in particular, I laid aside a lot of the things that I enjoy doing and threw myself so far into learning everything and anything about autism that I started to feel like I’d lost “me” and started to long for those things that once helped to keep me sane and created pure joy.

Now don’t get me wrong – I will continue to research, read and trial all that I can to help my boys get the best success rates in life – but I will also be dedicating a lot of time to looking after me.

And this is where my friend Alysia comes is. When I read *THIS POST* that she wrote recently, I cried.

I cried because it hit close to home and because I knew she was onto something big. I felt like I wasn’t alone in feeling overwhelmed and treading water in the sea of autism and all that it encompasses.

In case you haven’t heard or read – she and her friend Shannon have started up the Oxygen Mask Project.

I linked directly to their “Our Mission” page so click on the link and go take a look. It is described perfectly. We as mothers need to take care of ourselves and apply our own oxygen masks first. Then we can be the best Mamas for our kids.

It really is so simple but so many of us miss it.

This year I will be at home alone for the first time in 12 years. My baby starts school and I’m taking 6-12 months off before I start looking for work. It’s going to be MY year.

My plans really are as vague as they are varied but I hope to spend more time writing songs on the piano, reading my bible and making a dent in the piles of books that I have intended to read over the years.

I hope to sew more, bake more and relax more. Not in any particular order

I have stopped searching for things to make me “happy” but instead have decided to purposely seek out the positives in all situation. I didn’t say it was going to be easy, I am naturally a glass half-empty kinda girl but with God’s help – I can do anything!

I found this on Pinterest and I absolutely ♥ it!

So there you go …

Right now the score is –  God&Fiona :1   Depression: 0

HA!

~

~

Time to slow down.

Well hello everyone!

Before you ask – we had an awesome Christmas! I hope you all enjoyed yours as well?

And although ours was extremely exhausting, we had a wonderful time just being a family and enjoying each other’s presence (and presents!) My Mum is still here and soon I will be driving up to her place for a few weeks with the kiddos and intend to make the absolute most of our time together. Family comes first in my life and because I don’t live near any of them and don’t see them very often – I’ve decided that I will not be online in any capacity for the entire month of January so that I can give them all my undivided attention.

I’ve decided that I will not be taking my iPad or laptop up to my Mum’s and so that means no Facebook, no Twitter, no blogging and only my personal email which is on my iPhone will be accessible for emergencies.

I can't believe that my baby is starting 'big' school *sigh*

My baby Lucas starts school in only 5 short weeks and I don’t want to miss a moment with my kids.

.

Tomorrow Mum and I plan to take them to the beach and I have my camera charged and a big bag packed all ready and there are a lot more fun things on the horizon too.

I will be back in the new year, sometime in February so please come back and visit then.

Sending out a big thank you to all my faithful followers and newbies as well and hope you all have a wonderful New Years Eve and a blessed 2012.

Big Hugs

Fi x

Back-up has arrived!

You know when you’re watching an action movie and there is a cop in the midst of a hostile and stressful situation that is rapidly escalating and he grabs his radio and calls for back-up?

And then when the back up arrives, he is no longer under threat of being out numbered and having the stuffing knocked out of him and he looks visibly much more relaxed and in control once again?

Yeah, well that’s kinda how I feel when my Mum comes to town to help The knowledge that there is someone else who has got my back and who ‘gets’ my kids is really quite a relief!

Last weekend, Mr Patient bundled both of the boys into the car and drove the 6 hours trek up to collect my Mum and bring her back here for Christmas. Ella and I stayed home together for a much-needed ‘girl’s weekend’ and let me tell you:    It-was-awesome!

.

 No screaming fits, no fighting, no tantrums or meltdowns and no sleepless nights. And Ella and I were able to have REAL conversations without being interrupted and yelled at. On the Saturday, we went with a friend down to a quaint little village and spent the day doing brunch, coffee and exploring the beautiful little craft shops and handmade lollies, jams and ice-cream….YUM!

We watched movies together at night over hot buttery popcorn and for the first time in a while – we both relaxed.

The boys arrived home the following day and from the second that Harley set foot in the door he was off his head. He screamed at everyone, he stomped around like a bear with a sore head and he was just plain miserable. The change in routine obviously messed with him so we just gave him a wide berth and left him alone to get it all out of his system.

Ugh!

There’s always a price to pay when we interfere with his expectations but lately I’ve really taken the standpoint that he needs to suck it up and realise that yelling at everyone else is just not socially acceptable behaviour. I’m still trying to figure out how to do this in a loving way but I’m coming up empty.

We have had to go to the shops on more than one occasion this week because with Christmas being only 3 days away, there are lots of little bits and pieces that need to be bought and errands that need to be run. And Harley has made no secret of the fact that he is NOT happy to be dragged around shopping centres.

To be fair – I know that it is extremely busy and overwhelming sensory wise, and there are people everywhere but we try to prepare him the best way that we can prior to leaving and try not to be out more than an hour at most, yet – he still continues to carry on and perform like a spoilt brat every.single.time. He is aggressive and cranky and verbally abusive to all of us.

And I’m completely over it.

Last night, I wrote on Wonderfully Wired’s Facebook Page  (which if you haven’t ‘liked’ yet…..you need to – I know, I know, shameless plug there!)

I really need to figure out how to teach Harley about the need to do things he doesn’t like (like shopping for necessities like food) and that the family doesn’t revolve around him and what he wants to do all the time. I know that sounds mean but sometimes I wish he would just suck it up because I try my hardest to accommodate him and his needs and requirements but he doesn’t give an inch…

I mean, it would be different if I expected him to go shopping every single day. Or if I expected him to spend hours upon hours walking around browsing, but I don’t. We go to the shops with lists and a specific purpose, I plan it down to the minute and only go where I absolutely have to. I leave the rest of it for the times that I can go without kids so I don’t think that I’m expecting too much from him. He just doesn’t want to go, that’s all.

I have a wonderful friend Lisa who is an adult with aspergers and she told me that for herself – she needs to plan breaks to just escape the crowds where she just focuses on things that make her happy before going out into the masses again.
So I’ve taken that on board and will try to schedule some of those in. And then when she gets home again she plans to do her favourite things to calm down again. And my wonderful friend Bec wrote on WW FB page that she acknowledges out loud that she realises that her son is feeling upset and gives it a name as her son is still quite non verbal and that  he seems to relax a little when she does that because then he thinks: “Thank God she knows..”

She said that validating her son was what he needed and I agree that it is JUST what Harley would need as well.

It might seem harsh that I am not more accommodating to his needs and you may ask why I even take him out at all when it would be easier to just leave him at home with Mum.

Well – this is how I see it:

One day, my son will have to find a job, find a place to live and shop for groceries if he wants to survive. He will need to go places that make him uncomfortable and he will need to be civil to people whether it is difficult or not. Being aggressive and cranky won’t fly with people in the big bad world. People won’t ever be as tolerant and understanding as we his family are.

And one day – he will be too old for his mother to step in and explain that “He has aspergers, and is still learning social protocol” to strangers.  He is going to have to learn to keep his anger in check and his dislikes quiet.

Because the simple fact is that whether it’s fair or not – that’s just the way it is. And I’m not doing my job as his mother if I don’t expose him to these things in small doses now. How is he ever going to learn how to behave if he’s not taught?

These things are not intuitive in him like they are in me. He is still learning that strangers don’t HAVE to like you. Strangers DO judge you on what you say and how you act and that it’s up to YOU to not give people reason to avoid you.

And please don’t leave me comments saying that I’m an intolerant mother who is trying to change my son into something that he’s not because if you think that – you’ve completely missed the point of this post. Because I love my son exactly how he is: and there’s nothing that he could do that would make me love him any less, but I am also neuro-typically wired and I see a lot of the little things that he misses.

I see the looks he gets when he performs badly in public places. Yes – I wish people were more accommodating and tolerant but – they’re not. I see how other kids look at him when he’s perseverating on a topic that bores them and I notice the way that adults look at me for an explanation when he says something completely inappropriate or blatantly rude – I see all these things and so do most of his peers. And instead of allowing these things to cripple me emotionally – I am going to do my darndest to teach my son what he needs to know to survive in this crazy mixed up world or ours.

But I’m not doing it alone.

Every day I pray that God will guide my tongue so that I don’t destroy him with words. I ask God to watch my actions and to alert me if I’ve done something that could potentially take him ten steps back and I make sure that I tell him that I love him and who he is every.single.day.

And I really honestly do.

But right now, I have back-up. Harley is getting double doses of guidance, correction and most importantly of love. And I KNOW that he is going to grow into an awesome young man because God doesn’t make junk.  Sure – Harley  may be a squeaky wheel now but the upside to this is that he will NEVER go un-noticed or forgotten. And that’s a good thing right?

Right.

Well – I’m off to have a coffee and a slice of the gluten-free decadent Christmas Cake that I just made with 8 espresso shots, an entire block of fruit and nut chocolate and half a cup of Baileys!

Happy Christmas All xxxx

Do you see what I see?

There are a whole entire series of events that have contributed to my ‘inspiration’ for this post but I won’t go into any major detail on here. This blog was never intended to be a platform for nasty rants and I don’t believe that belittling people or starting an all-out war online is conducive to encouraging harmony and peace to flow in our lives.

But in a nutshell - there are some people in our personal lives that have said and done some pretty awful things to us lately. People who are still of the belief that it is bad parenting that is to blame for the difficulties that we face and not due to the tumultuous journey that autism takes you on every day.

This out of line nastiness has been directed at all of our kids and us as parents too, but particularly Harley who has been quite hurt in the process.

The abuse of power came mostly from someone he should be able to trust and we have had to learn the hard way that not everyone sees what we see when we look at our beautiful children.

And here’s the thing: When one of my kids hurts…I hurt……and then the  Mama Bear inside of me that’s usually quite well-tamed,  gets stirred up and becomes more and more aggressive and wants to pounce.

Get the drift?

Good.

When I look at my boys – I see that they are incredibly misunderstood. I see that they often don’t fit into the world’s ideals of acceptable and it makes me mad that I constantly have to fight for their rights.Their basic right to be counted and accepted for who they are NOT for what these people want them to conform to.

~

 On the weekend, we had Mr Patient’s work Christmas party. It was held at a very ritzy hotel – the same one that President Obama stayed at when he was in Sydney and we got to dress up and be grown-ups for a whole entire night!

We checked into our room on Saturday afternoon and gazed out our window overlooking the heart of the city and I was completely blown away. Totally awe-struck and filled with excitement – just like a child on Christmas morning. It was worlds away from the day-to-day life that I am used to and it felt SO right for me to be there.

After we’d checked in we went for a short stroll down to the iconic Sydney Opera House (which was just around the corner) and we took our photographs in front of the beautiful Sydney Harbour Bridge in the distance. I had reservations about leaving my boys to go away that night, but had allowed my husband to convince me that I deserved this break.

After a coffee and a quick catch up with some friends at a café on the Harbour we headed back to the room to get ready for the fancy dinner that was due to begin only a couple of hours later.

I’m really not sure exactly when my world started to crumble that night, but I have a suspicion that it was around the time that we were ushered over to talk to one of the big wigs from Mr Patient’s office over drinks about half an hour before the dinner even began.

This man was the centre of attention in our small group as he boasted about his daughter’s grades at school and how “HE” had been instrumental in pushing her to get them. He spoke of the (ridiculous) incentives that he had put in place and waxed lyrical about the promising futures that his children had in front of them because they had learned the importance of good grades and hard work.

He said that he wasn’t happy with Bs or Cs and that without As…..he knew his children had no future in life.

And that was about the time that I started biting my tongue.

And I was biting it HARD!

I suspect that the wives are expected to just suck it up, smile and look pretty at these fancy events, but as the conversation with this man continued, I felt Mr Patient’s grip on my leg tighten with every word that this boastful horrid man spewed venomously from his mouth…

My husband knew that I was brewing up a filthy storm inside of me and that it was only a matter of time before I exploded. He knew that Mr Mouth had hit a raw nerve in me and that I was not a happy camper.

But I had enough sense to not put my husband’s job in jeopardy and chose my words very carefully and spoke respectfully as I looked this man square in the eye and asked him:

“So, What about the children that don’t manage to get As but still give 100% effort in all that they do. Do you think that they won’t succeed in life? Is their future doomed?”

And he replied: “Yes. I believe they are, grades are everything. There is no room for success without being a high achiever and it all starts at primary school”.

So then I asked him: “But what about children like my son who gives their all but the school system doesn’t cater to the way that they learn?”

“Then they need to try harder” he replied. “It’s as simple as that”.

I gritted my teeth and forced out a smile because I knew that it was neither the time nor the place to make a scene but I was unable to just shake this one-off.

And I have spent a lot of time today rolling the events of this weekend over and over in my head and I have come to the conclusion that it all boils down to something as simple as perspective.

Because: perspective is what shapes the way that we form opinions on pretty much everything in life. And perspective is what allows us to choose what’s really important to us and to show us what’s not and gives us the tools to decide how we are going to react in any given situation that presents itself to us.

You see….not too many years ago – I suppose that I too saw things completely differently to how I do now. And God has shown me that these people in our life who are causing grief right now and this man at the dinner aren’t viewing our life through the same lenses that we are. Their perspective is entirely different to ours. Their focuses are on other things and it’s easy for them to shun that which they aren’t confronted with on a daily basis.

They have the luxury of choosing to be and stay ignorant about autism and it’s many challenges and they don’t have to make the same allowances or battle the same demons that we do.

They are walking an entirely different path and have made the choice to judge and form uneducated opinions on that which they don’t care to try to understand.

But none of this is our fault.

This is all because these people don’t SEE what we SEE!

They see non-compliance and disobedience but not hurting, confused children.

They can’t see past frustrated temper fits to discover the beautiful little boys with can-do attitudes and more love than they can possibly contain.

They are focused on the struggles, the “different” and what they consider to be wrong about our kids because they don’t have our untainted and glorious perspective.

And I thank God for the grace that He’s given us to raise these kids. I thank Him that He has opened our hearts to receive more than we ever expected possible. We rejoice in achievements that other parents take for granted.

For us – the little things are often BIG things and we consider ourselves to be incredibly blessed, but I am learning that the downside to having a softened heart is that we are also easily bruised.

But bruised is most definitely not broken!

And we are constantly surrounded by other beautiful people who DO see what we see and share the same unique perspective.

And for all of you – I am extremely thankful.

Have a great week

Fi x

Unsent letter

To the person who has hurt us,

You do know who you are,

I want to tell you here- right now,

That you have gone too far.

.

I want to let you know that we,

Still love you just the same,

But it hurts me when you judge our ways,

And give me all the blame

.

You know my life is not like yours,

And it will never be,

I do the best with what I have,

So please don’t bad mouth me

.

My children know that they come first,

And have my full attention,

So forgive me now, if you’ve to wait,

And I am not perfection

.

I feel that you just inward look,

And make it all about you,

But in THIS house, we’re not that way,

You never seem to approve

.

I’m sorry if you feel that I,

Have been a dreadful pain,

I have no time for childish rants,

It’s puts me off my game

.

My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

.

I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

.

I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

.

So instead of focusing on yourself,

Why not offer to shoulder our burden,

And walk a mile in different shoes,

Before just spurting your poison.

.

I work so hard but still you want,

To criticize me and complain,

You won’t believe in ASDs

So it’s always just the same…

.

I’ve tried to tell you all I can,

But you don’t want to listen,

So saying that I am “not right”

Has been your latest mission

.

If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

.

The things that you’ve complained about,

Weren’t done to tick you off,

My heart was right, and full of love,

But now….I’ve had enough

.

I can’t go on pretending that,

Everything is now okay,

I’ve tried my best – but it’s not enough,

I’ve nothing left to say

.

I truly hope that you get to,

The place where you find peace,

I pray that God will bless you lots,

And that this tension now will cease…..