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.

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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!

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 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.

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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

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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

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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

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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

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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

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My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

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I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

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I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

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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.

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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…

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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

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If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

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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

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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

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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…..

The armchair analogy

image from: featherandnestkim.blogspot.com

Yes!

It’s snowing on my blog! Usually it would seem silly being that I live in the Southern Hemisphere and it is Summertime here during Christmas but I thought that it was fitting since it has been SO COLD here this past week!

And sadly, the weather isn’t the only thing that’s been a downer lately. It has been quite difficult for me in that I really have been consumed with feelings of mother guilt and regrets.

And while I know that I am probably being too hard on myself – I have struggled to get past these feelings.

Harley had a particularly rough time last week, which I found really hard to take because things had only just started to look up again. If you remember the post before this one – I was just celebrating how far he has come only to slump back to reality with a thud once again.

He is still being bullied at school and it’s really taking its toll on him. There are 2 kids doing the bulk of the teasing but once of them is the ring-leader and the other one a follower. The main gist of the teasing is about him having aspergers and has now extended to him being gluten-free.

I know.

Stupid things to bully a person over but that’s what’s happening.

And I know that Harley is particularly sensitive – more so than your average 8-year-old boy, but that’s just the way he is made and no amount of coaching is going to change his genetic make-up. He gets it from me I suppose because I’m easily hurt by words and it’s killing me to see my boy so sad.

The hard part is that the bully is known to be a “nice kid” to the teachers so convincing them that there is more than meets the eye is proving to be a tough one.

And as it is with most spectrum kids, Harley hasn’t got the ability to be as cunning as his NT peers and often gets caught retaliating when the instigator gets off scott-free because he is smart enough not to do it in front of the teachers.

But I trust the school to tackle this in the right way.

I have to. It’s all I can do right now.

There are only 4 days left of the school year before they break up for 7 ½ weeks and I considered not saying anything and just hoping that it will all blow over, but I decided that if I mention it now, at least if anything happens next year there will be a history of this recorded.

~

We received both of the older children’s school reports last week too.

Ella did exceptionally well and we are mega proud of her. We believe she could have done even better because she also readily admits that she didn’t give her all.

But she is naturally a very smart kid. She has always been an A and B student and has glided through academically since day one with barely any effort at all.

I haven’t really had to put any time into convincing her to do her homework and she tackles all her work with determination. But it’s important to note that we didn’t do anything to make her that way. That’s just how she is. And we are very proud of her success.

But conversely, we have spent hundreds of dollars on tutoring and therapies on Harley and I personally have dedicated many many hours to helping him and yet he has struggled with every.single.subject this year.

Sigh.

His marks weren’t terrible, he isn’t lagging behind the rest of the class and comments on his report reflected that he tried his very best and that he is really really trying but they also scream out ASPIE ALERT all the way through.

Comments such as: ‘gets distracted easily, needs support to complete fine motor activities and struggles with hand-writing’ were all the way through it. He can’t help that. It’s who he is.

And we are oh-so-proud of him because we know that he gave his all and that’s all we ever expect but he is being hard on himself. (Wonder where he gets THAT from?!)

If anything, he worked HARDER than Ella yet she blitzed him with no real effort at all and that was a bitter pill for him to swallow.

~

There is a beautiful little girl in Harley’s class who also has aspergers and she did remarkably well this year and I am SO proud of her! She deserved the accolades because she did such fabulous work this year.

Her lovely mother (a friend of mine) needs a pat on the back too because she also worked really hard with her and I’m thrilled that their hard work has paid off.

But I am worried….. Because I’m hoping that the teachers aren’t seeing this as her trying really hard and Harley not trying at all. I hope that they don’t expect him to be like her because it’s never gonna happen! He is a completely different person with completely different skills and talents.

All you autism parent friends will know the saying : “If you’ve met one person with autism, then you’ve met one person with autism” and this is so true when it comes to Harley.

I have watched him push himself but I have also watched him crumble. I have seen him strive but also dissolve into tears regularly.

It breaks my heart to see him walk out of school deflated and I know how much of a toll this year has taken on him. And to have it all topped off with bullying is the straw that’s breaking the proverbial camel’s back.

So I sit here and ask myself these questions : What could I have done differently for my boy?

What skills should I have put more hours into teaching him so that he didn’t have to struggle so much?

Should I have encouraged him more?

Would it have been different if I had invested more time into teaching him coping mechanisms rather than insisting that he do it my way?

And then it all starts to do my head in and I start to reconsider home-schooling him again.

Not because I think I could do a better job – actually quite the opposite.

I know that I am NOT cut out to be a teacher at all but I don’t want to keep sending my boy into his idea of hell everyday and keep expecting him to force his square peg butt into the very round holes that is the school environment.

I know that my boy will achieve great things. I KNOW that he will not only survive but he will be sensational and I KNOW that he is destined for great things.

But I just wish it didn’t have to take such a toll on him in the process.

He is an amazing kid. ALL of my kids are, and I’m still yet to find out how Lucas will handle school next year but I refuse to let my head go there just yet!

And its times like this that I am so pleased that I have a close relationship with Jesus.

My Dad taught me to visualise a big stuffed comfortable armchair in a room with a light breeze and all my happy things surrounding me. Then he told me to imagine laying back into it and just resting and relaxing and knowing that I am loved and well cared for.

And he explained that this is what God means when He tells us to “Rest in Him”.

Sounds great right?

Nope…sounds AWESOME!

I’m of to find a comfy place right now and if you’re looking for me, I’ll be asleep in my armchair with my caffeine I.V. drip in my arm and a tray of chocolates that never runs out beside me.

Because THAT my friends,  is my idea of heaven.