MY kid is spectacular!

Today was a good day.

It wasn’t the best day but it wasn’t the worst day either. It was the day of the swimming carnival at my kid’s school and this year was the very first time that Harley has attended. It’s been the 3^rd year that he has been old enough to go but I had no success in even getting him there in past years, so his attendance alone was a cause for celebration.

He announced to me on Monday morning that he would like to catch the bus with his sister (Ella) and so I reluctantly signed the permission slip. I was proud of him but I admit that I was also a little uneasy. Don’t get me wrong – I’m all for helping him to stretch his comfort zone a little and I think it’s good for him to try new things but if I was to be completely honest, I was a little nervous having him experience so many new things at one time.

• Attending the carnival for the first time.
• Catching a bus with lots of other children.
• Surviving a crowded, noisy smelly environment for 6 hours straight with no escapes or safe corners.

But I prepared him the best that I could. And yesterday afternoon I had a chat to Ella and asked her if she would please text me at intervals throughout the day to let me know how her little brother was doing because *I* needed to know that he was surviving.

She promised she would and true to her word, she updated me every hour with messages like this:

God bless her - she is such a gem of a child.

So after receiving Ella’s second text, I decided to go for a long drive and I blasted my favourite music in the car singing along loudly at the top of my voice. Simply: because I could and it’s something that I LOVE doing!

Playing any music at ALL is a luxury that I don’t get to indulge in when Harley is in the car, so today I made the most of it and rocked it out big time.

And I may or may not have belted out some Kelly Clarkson, Alanis Morisette and just a bit of Katy Perry – you know – power songs and all that, but I digress….

But today was just what I needed. I had a great day doing whatever the hell I felt like and managed to refuel myself enough to be able to tackle any surprises that the afternoon may or may not have in store for me.

And thank goodness that I did.

Because when I watched Harley alight from the bus and walk towards me hand-in-hand with his big sister, my heart lunged into my shoes. I knew the face that he was wearing all too well. I could read the anxiety, fear and fright in his eyes and knew that he was trying so hard to hold it together. Bless him. I also knew that we only had limited time before the cork was released from the bottle so-to-speak and that I had to act fast. The rumblings of an explosion were there…. He was moaning quietly and pushing his head into my side. He was flailing his arms around floppily so I grabbed his little hand and headed for the office to sign him out early.

But Lucas wouldn’t leave. He wanted to change out of his swimming gear into his clothes and was refusing to come to the car with me. He started to pitch a fit and I didn’t want another upset child on my hands so I sent him to the bathroom with Ella to change.  But they weren’t fast enough and Harley couldn’t hold it in any longer.

So mother and son sat on a step together away from prying eyes while my little boy broke his heart. Tears ran down his cheeks as he alternated between cuddling into me and thrashing uncontrollably. He WANTED to be close to me but he just COULDN’T. His body was fighting him and his entire sensory system was out-of-control. I did what I could but knew I had to ride it out. Eventually he calmed enough for me to carry him out to the car and take him home to his safe place.

**

It was hard on me to drive home watching him wipe away his silent tears out of the corner or my eyes, but I still couldn’t get over the immense sense of pride that I had at that very moment seeing how far he had come.

My boy achieved so much more than I would have ever thought possible today.

• He pushed past his own discomfort to display great sportsmanship by going along and cheering on his friends and classmates even though he himself is a non-swimmer.
• He dealt with a different format for the day and with not always knowing what was coming next or where his teacher would be at any given time.
• He caught the bus like the rest of the kids and went to a pool that he had NEVER been to before and did all this KNOWING that there would be loud noises, lots of kids and strong smells to contend with.

He has gone from a child who refused point-blank to even consider attending the swimming carnival only 12 months ago to a child who achieved SO MUCH personal growth today. And this Mama is so SO proud of him.

And for the record; I am not trying to teach my son to conform, to be like all the other kids or continually expose himself to situations that cause him so much pain and displeasure. Nor am I trying to change him into a ‘normal’ child. I am encouraging him to recognise what I have always known about him and that is that not only will he succeed in life but he will excel.

He can do anything that he puts his hand and mind to and he is amazing, strong and courageous.

And that’s no different to what ANY parent wants for their child is it?

This is my favourite part of today. Watching him decompress and reset his vestibular system by indulging in an old-fashioned game of upside-down TV watching

“Have you got a minute…?”

That was what I heard this afternoon as I was walking across the school playground, Harley’s OT had spied me and called out to me. She said she had been hoping to see me so we could ‘have a little chat’….

And this is where I need to tell you that I admit that I held my breath a little bit. Because usually when a teacher, aide or therapist approach me, it’s not good news and experience has taught me that I probably won’t like what’s coming next.

But not today. Because today she had a major breakthrough with him and wanted to share it with me.

For weeks now he has been turning up to his OT lesson without his workbook. She had said that she thought it odd that I had never packed it (it stays in his bag permanently) but then today it dawned on her what was actually happening.

She had a light bulb moment and couldn’t believed she’d missed it for so long!

As she usually does, she waits until he’d settled in his seat and asked him if he had his book with him and he (predictably) replied: “No”.

So then she asked him where his work book was and he replied: “In my school bag”.

So he had been answering her correctly every single week when the direct question “Do you have your work book here”? was asked. But it had never occurred to him to go back to his classroom and get it out of his bag! Such a simple thing that had been complicated by his difficulty comprehending verbal instructions or questions.

She also mentioned that he had been a lot more settled than in the past and enquired whether that was because the stress of the school year is almost over. I ‘casually’ mentioned that he has now been on medication for almost 2 months and her face broke into a smile and understanding was written all over her features.

She nodded and said: “Wow. What a massive change I’ve noticed in him, he is more focused, more agreeable and much calmer than I’ve ever known him to be. I think you made the right decision”.

And instantly I felt the validation that I needed.

Harley’s Paediatrician first suggested the medication route a few years back but I was adamant that I wasn’t going to drug my child. I dug my heels in and determined that I would somehow ‘fix’ his anxieties, aggression issues and OCD tendencies myself.

But I couldn’t.

I eventually had to admit that it was over my head and ask for help.

Since he has started seeing his psychologist combined with the pills, our family life has improved dramatically.

Beyond description.

And now that he is able to gain more control of his emotions, he can actually apply the coping techniques that he has been taught previously before he gets completely overwhelmed.

So its a win-win as far as I’m concerned!

His teachers have noticed a positive change in him too so I’m even further and further away from beating myself up about medicating him.

I feel like I have my little boy back. The one that has been buried underneath layers of angst and fear for 9 years. I see joy in his eyes and happiness more often than ever before.

But please don’t get me wrong – I am not touting a magic cure-all pill for autism. (In fact I’m not ever dipping my toes into THAT murky pond) and I am definitely not advocating for going the medication route because choosing to medicate your child is a very personal decision and it will never be for everyone.

We have been under a remarkable Paediatrician whom I trust implicitly for years now and we weighed up ALL options over 3 years before deciding to bite the bullet so to speak. So this wasn’t a hasty decision at all.

Harley still has and will always have autism. We are just addressing a common symptom of ASDs. I am aware that this is a touchy subject with some folk but I’m simply writing about our family and our experiences and I won’t apologise for doing the best that we can with what information we have available to us at the time.

I love my kids and I want them to be the best that they can be.

I want to see this smile as often as I can. He’s just SO cool isn’t he!

Deeper

I’ve been pretty slack at this whole blogging thing lately. I have had a lot to say but have been unable to put it into words that I’m comfortable enough with to publish.

Because the truth is, I’m hanging on by a thread at the moment. I’ve become pretty good at hiding my despair but thankfully, there are three people in particular in my life who are always there on the end of a text, phone call or email who keep me from completely losing it.

And they are all able to read between the lines and work out what’s really going on. I love all of them so dearly.

But even so, there is still so much that I really need to write out and deal with and I’ve struggled with writing it out ever since my writing was harshly criticized and made fun of recently.

I’m struggling with the bigger things too.

Like our visits to Harley’s psychologist. I haven’t even processed the information that she gave me on his first visit let alone the other times that he has been. He is just so complex and his issues are way over my head and capabilities and frankly: it scares the heck outta me. I’m not sure that I’ll ever be enough when it comes to helping him.

And the out-of-control behaviour that we are seeing in Lucas at the moment is something that I’ve honestly never seen before. I wonder if its an end-of-year exhaustion thing or whether he is struggling with stuff I can’t work out? And I wonder how deep it goes?

And if he will develop similar anxieties and fears as Harley and end up needing medication too? It’s all too much to get my head around.

Not to mention the friendships and relationship stuff that everybody has. Marriage is so damn hard at the best of times and the pressure increases when you have children who need so much more from you than the average child. I worry that my well will run dry and there will be nothing left to give.

There are already areas of my life that I have checked out of prematurely. It’s just all too overwhelming at the moment and I’m getting tired of just treading water all the time so it’s become easier to do nothing rather than make the wrong decisions.

Maybe that’s a bad decision? I don’t know, but survival mode does interesting things to a person. This funk I’m in has brought some rather abstract poetry out of me so I guess it’s not all bad.

Like this:

Hurting head and aching heart,

Needing some reprieve,

Wanting guidance,

Desiring peace,

But don’t know where to start.

.

I close my eyes and lay my head,

Down on my folded arms,

Wanting rest,

Desiring release,

From all those things you said.

.

As days unfold and choices come,

I don’t know which ways up,

Wanting love,

Desiring grace,

Before I come undone.

.

Then night fall comes and brings with it,

More pain and hopelessness,

Wanting answers,

Desiring truth,

I can’t take another hit.

…

Share this:

Just don’t get too comfortable….

I think I may have written this post maybe 4 or 5 times over the past few days, but every time I’d read it back, I’d be unhappy with it so I’d delete it and start again.

I just can’t seem to write out what I need to write about without giving away too many details so I will only say that parenting an almost teenager is on par with raising autistic boys at the moment.

Holy hormones Batman!

Even my Mum has admitted that she didn’t have to deal with this kind of stuff when we were growing up. I guess times have changed and there are a lot more temptations out there for kids these days…sigh…

So yeah….things have totally sucked here. And no, I don’t believe that I’m being melodramatic either.

I have really struggled with guilt because I KNOW that Ella puts up with a helluva lot more than the average 12-year-old but I just can’t help the fact that the boys both require a lot more attention at the moment. So I have been feeling very torn.

And on top of that: it seems that Harley’s OCD has increased AGAIN, and frankly – he’s starting to unnerve me with his ever-increasing rituals.

I can handle the obsessive hand-washing. And even the counting of his steps is something I can learn to live with. But the vocal stimming and the repetitive questions that he needs to hear answered in exactly the same way each and every time – added to the irrational fear that he will cause harm to his family if he doesn’t do what his ‘stomach’ (?) tells him to that it will result in one of us dying….well that about tips me over the edge.

I mean seriously….it is becoming a huge problem for all of us and I’m staring to become unhinged. Its like living with Melvin from that dreadful Jack Nicholson movie “As Good As It Gets” but much much worse.

And he’s only 9.
Sheesh!

On a happier note, the boys both survived school photos and a fire drill at school this week with minimal after effects which is wonderful progress as far as I’m concerned!

And I have had my Mum here for the past two weeks so there have been an extra pair of hands to help me which is fantastic – except when they are needed to soothe frazzled children or hug an emotionally distraught Fiona.

But it’s all good.

Just don’t expect a coherent response from me for the next couple of weeks while I settle back into the chaos that is my life. Yep….Mum flies home tomorrow…..

But its okaaaaay…. I’m going to take deep breaths then count to 1 gazillion and then take more deep breaths. If you need me….I’ll be the one in the corner rocking and sucking my thumb!

Nah..just kidding: God will get me through.

Shutting down or shouting out?

I always find it fascinating when I see something in one of my children that I recognise in myself.

I know that I am not naturally a decision maker, an optimist or display very good coping mechanisms, and it’s become apparent to me that I chose to shut down more often than fight when I’m overwhelmed.

This week I have had Harley home for 2 days and Lucas about to have his 6^th consecutive day off in a row tomorrow. All due to sickness. Lucas had some blood tests earlier today because the Dr thinks he has either a respiratory infection or glandular fever (Mono).

And it’s interesting to me to watch how the boys have both responded differently to sickness and how their individual responses have affected me.

Harley (God bless him) makes sure that everyone around him knows that he’s sick, that he’s miserable and that he being sick is a major inconvenience to him. His anxiety goes through the roof with his OCD kicking it up a notch and the perseveration begins over whether or not he will end up vomiting.

Sigh

I’ve often wondered if he is ever really as sick as he says he is or if it appears worse because he works himself up so much.

He calls out at 2 minute intervals that it’s not fair, that he’s too hot, too cold, thirsty, hungry, uncomfortable, bored etc etc etc.

Whereas conversely, I often don’t realise just how sick Lucas is because he just lays down quietly and withdraws into himself choosing the silent protest. Which sounds like the easier child to handle right?

Well, yes and no. Sure, it’s easier on my ears and my patience but the downside is like I said: I often don’t find out just how sick he is until much later than his brother who gives me a running commentary of his every ache and pain in minute details.

I have to do a lot of guesswork with Lucas and he shuts down so much that often he refuses food & water and I have to physically open his mouth to administer medication. He doesn’t seem to hear me or respond to his name when he’s shut down like this. So it’s not always practical!

Remember his birthday last year? Remember how he was hospitalised with paralysis in his legs? Remember how much he shut down then? Well I didn’t. DOH! You can refresh your memory by clicking >>HERE<<.

Sure, in the past few days he has had some great moments where the medication has perked him up briefly and there have been glimpses of my vivacious little fella but they have been sadly few and far between.

I think that autism definitely plays a huge part in how my boys respond during times of high anxiety or in sickness, but there is also a very definite personality/genetic makeup factor in there as well.

I realised that I have spent so much time over the last few days trying to get Harley to stop whining and trying to get Lucas to interact with me in some way, that I haven’t allowed them both to individually indulge in what it is that they each need.

Harley needs to hear me soothe him constantly, in the same way that he will often ask the same question repetitively even though he knows that the answer never changes.

He finds comfort in patterns, in routines and in consistency. I believe that he repeats the same phrases: It’s not fair, I’m too hot, I’m too cold, I’m thirsty, I’m hungry, I’m uncomfortable, I’m bored in what seems to be a bizarrely cathartic way!

And all I have been doing is sticking ear-plugs in my ears and shutting him out because *I* couldn’t cope with the constant jabber.

And this realisation has really shone a light on myself. I have realised that I am very much like Lucas when I’m overwhelmed.

I shut down both physically and emotionally and enter a state of self-preservation.

These are the times that I shy away from my blog, my emails, my Facebook, Twitter and all other types of cyber interaction and especially from those whom I know in real life lest they see through my carefully constructed façade!

I call it self-protection mode but deep down I know that it’s just avoidance

But here’s where my son and I differ greatly; When I shut down, it’s usually detrimental to me because I stop seeing reason and I block out those that are truly trying to help me, but when Lucas shuts down – he ALWAYS comes out the other side fitter, healthier and better off from the experience.

It’s like he needs to power off so that his body can fight the nasty bugs that have infiltrated his immune system. I really honestly think that he needs to do it so that he can protect himself.

From what? I’m not really sure but for now I’m going to put it down to just another mystery of the autistic mind that might one day be understood by NTs like me….or it may not.

Whatever the case may be – I’m going to keep doing what the Dr tells me and wait it out because I know that there’s a mischievous, sparkly little boy behind those glazed over dull eyes of his.

I just KNOW it

Climbing out of the trench.

As regular readers will know: I have two children diagnosed with Aspergers Syndrome. And I’ve written many times that they are polar opposites in how they present. I have read a lot of blogs that say that parents like me are being unfair to the autistic community by presenting the negative side of autism.

But this my friends is sometimes the autism that we live with.

And I know that it’s not everybody else’s autism but this is our story.

Some parents may have a “Lucas” type of aspie in which case – they may see this as an unfair portrayal, but I also have a “Harley” and other parents of Harley’s will know where I’m coming from.

I’ve asked the question before: What Kind Do You Have? because I know from personal experience that extreme anxiety, aggression, anger and explosive behaviour are not always present in every child on the spectrum. But it is VERY present in one of mine and not in the other.

So…..

Everybody knows that once a month, most men walk on egg-shells around their wives, girlfriends or teenaged daughters right? Right?

I don’t need to go into specifics, but you all know what I mean when I say that some words or actions are just triggers that could potentially cause a major explosion. And most of you reading this are in fact one of these women that need to be given a wide berth every four weeks or so.

Well, this is a really ideal way of explaining what life is like when you have a child with high anxiety and aggression issues related to their particular brand of autism.

But the similarities end here because, this doesn’t just occur monthly. And its not able to be predicted with a calendar. This is far more constant than that and often far more volatile too. The end is not in sight and there is no 3 weeks “normal” period in between.

Now don’t get me wrong; I absolutely love my boy to bits but honestly, sometimes, it feels  like we are living with a bunch of moody teenage girls who are all cycling one after the other. There is no reprieve.

And other times it’s like we reside in a constant combat zone and the associated stress levels are constantly at an all time high in this household.

It’s why I believe that like a lot of parents of children on the spectrum feel like they live in the middle of a war zone. Like they have been thrust onto the front line and why they long for someone or something to pull them out of the metaphorical trench.
Because there really is NO break at all.

Anyone can avoid particular subjects or people for a short time but when you’re in it 24/7: there aren’t any down times.

I was sitting down having a deep and serious conversation with Mr Patient recently and we were trying to figure out why we seem to be always teetering on the verge of complete mental meltdown ourselves, and why the simplest things seem to set us off so much more than they really should.

We wondered aloud why we become so unsettled and angry by little things that other parents are seemingly unaffected by.

Because, the thing is; we know that not all behavioural related childhood traits are autism specific. We are aware that all kids have moments of defiance and pushing their boundaries but we’ve also noticed that other parents don’t seem to be pulling their hair out in utter frustration over the little things as often as we do. They seem to be able to shake it off a lot more easily.

And we figured that it’s got a lot to do with their stress ratings.

Let me explain:  Between us, we came up with the stress-o-meter as a way to help each other understand exactly where we are at. I’m sure that this is an age old technique that has some fancy psychology term, but we are simple folk and have found that this is what works for us.

Think of a long straight line. At one end of this line is a 5 and at the other is a zero and the goal is to stay aware of where we are sitting on that line at all times.

So, level 0-1 is ideally where we’d all like to remain but life often throws curve balls and many of us find ourselves reaching 3′s, 4′s and sometimes a 5.

Everyone has stress and everyone varies at their level on this meter but honestly-for us, it feels like we hover somewhere between 4 and 5 at all times. We admitted that we rarely if ever get down to a 2 and almost never on level  1.

And prolonged exposure  to stress often affects your ability to move lower on the line. I see it in my own Mum when she comes to stay. She arrives on a healthy zero and goes home somewhere between a 3 and 4 herself. By the end of her visit she is often asking things like; “Is it bedtime for them yet”?

And this makes me feel a whole lot better. Because it means that we are not the only ones who find it tough going here.

And I think that it’s got a LOT to do with how much time you spend dwelling in the trench and how much time you allow yourself or are permitted to climb out.

But here’s the thing. Climbing out is not always as easy as you would think.

Some days we really believe that we deserve to be in that trench. We become big  martyrs and tell ourselves that we aren’t doing everything possible for our children if we aren’t thinking about ways to help them 24/7.

We wrongly tell ourselves that any times spent doing anything non-autism related is time wasted that should have been spent on helping our child to better navigate this big bad world.

It’s like mother guilt only a hundred times more.

But this is not the only reason that some of us dwell in the trenches.

Sometimes, (and I can attest to this scenario a lot more than the former one),  we honestly have no idea how on earth we are going to get out of the damn trench because it’s all we know.

We become familiar with it and we start to carve out our own little niche. We tell ourselves that as long as we need to be there, we may as well make ourselves comfortable, and we gradually find ourselves slipping further and further down into the mire of that trench.

And the sound of gunfire rings louder as our stress levels rise with every coming day.

Because we haven’t seen sunlight for sometimes months, we start to become irritated by the smaller things that we would likely be able to block out or deal with if we knew it’s only going to be temporary.

But we know it’s not. We can’t see the end in sight. We can only see the (assumed) many years of heartache ahead of us. We’ve lost sight of the bigger picture.

We know that often there’s nothing to look forward to and that it’s difficult to take your eyes off the here and now and look beyond to the treasures that potentially lay ahead.

And some of us need a helping hand to pull them out of the trench. Like I did and still do.

If you’ve read this blog for a while you will have read that I myself have been diagnosed with clinical depression and am currently medicated to manage it. I have good days and my bad days and EVERYTHING in between!

I am one of those people who struggles to see the silver linings and can very easily sink because I simply forget how to swim. I often think that it’s impossible to climb out of the trench and I become overwhelmed and exhausted so much quicker than I really should.

But God knows this and has placed people around me who are able to help keep me afloat and help to pull me up when I find myself sinking into the pit again.

God is the one treading water whilst he hold my head above the crashing waves.

I still have that wretched self talk telling me that I don’t deserve it whenever I’m offered a break and I am overcome with emotion when someone does reach out, but I’m definitely getting MUCH better at this!

I have recently started walking with a close friend. Because sunshine boosts your vitamin D and sunshine also dries the mud in the trenches.

Laughter and friendship and being able to escape the war zone even once a week is incredibly important so I have promised myself that the self-talk is going to change.

I may not be honestly able to get down to a zero or 1 on that stress-o-meter whilst I have very young children…..but if I can get down to a 2 or 3,  I will get that much-needed reprieve.

I AM worthy, I AM capable and I will believe what God says about me NOT what my exhausted, tired and emotionally drained brain tells me to believe.

I’m allowing people to pull me out of the trench or inviting God to sit down in it with me and comfort me until I have the energy to climb out. Or let him give me a leg up

Either way….I KNOW I’m never alone.
Have a great weekend friends xx

What I’ve learned these past few years.

Sometimes, no matter how hard you try or how much work you put in, there are going to be days that are harder than others.

That is the nature of autism.

It’s neither good nor bad. It is what it is.

And when you love someone with autism, you will keep putting one foot in front of the other until the hard times pass because the joy that is at the end is indescribable – the rewards are priceless.

And that my friends; makes all the harder times worthwhile.

What has autism taught you?

I remember…..

This was taken a few weeks after we received Harley's diagnosis. The same age as my reader's child.

I often get emails from strangers who have read my blog and just want to connect by telling me their story. They write and tell me how autism affects their lives and often the parallels between something I’ve written and what they are experiencing in their own worlds is fascinating.

I love receiving emails because it motivates me to keep writing and to keep spreading awareness one reader at a time.

I opened my email a couple of days ago and there was a new message from a brand new reader who had stumbled onto my blog during one of those (I assume) frantic 3am google searches.

They wrote about their child who has only been diagnosed as recently as 2 months ago. They don’t have any support networks as of yet and are not in contact with any other families that are walking a similar path to them. They feel isolated and frightened.

So naturally I sent them the link to Welcome To The Club written by the amazing Jess over at Diary Of A Mom. Because EVERY new parent should be handed that letter along with their child’s diagnosis. It is vital reading.

But do me a favour?….Finish reading this post before you click over there because once you’ve read Jess….you won’t want to come back

The parent who emailed me desperately wanted to know that there is a light at the end of the proverbial tunnel. They were anxious to find out when and if their child will grow out of this overwhelmingly exhausting stage and wanted reassurance that it will all be ok.  And to be completely truthful – I was unsure how to answer this at first.

I didn’t want to lie and tell them that the meltdowns, tantrums and sensory issues would just magically disappear one day and that life would become all honky dory all of a sudden. And I didn’t want to give them any false hope by telling them that they can expect their child to become “typical” overnight, but I wanted to assure them that what they are experiencing is a normal part of the early days of discovering that you have a child on the autistic spectrum.

I wrote of the feelings of loneliness, of grief and of self-doubt and I told them that I truly understood. I recognised the fear, the anxiety and the emotional overload that was evident in their email and I was forced to go back in my memory to when Harley was first diagnosed at exactly the same age that their child is now.

I remembered the meltdowns that seemed to go forever. I recorded some of them on my mobile phone so I could show it to the paediatrician because it felt like NO-ONE would believe that there was something “odd” about my child. He watched them and nodded knowingly and told me that I would eventually find a way to manage them.

I didn’t believe him.

I remembered the punch in the guts when this very same Doctor told us that our child was “different” and that we would need to adapt as he handed us a list of therapists, specialists and blood tests request forms. I remembered the desperate feeling of abandonment, and feeling overwhelmed and exhausted all at once.

And I remembering thinking that we’d never make it.

But you know what? Through forcing myself to go back and deliberately remember those early days – I was able to see for the first time just HOW FAR WE HAVE COME!

And it got me all excited!

I remembered these feelings and thoughts, but was able to recognise that we don’t live there permanently anymore. We visit them occasionally and we will always be tied to them in some way, but we have moved on to become stronger, wiser and a lot more street smart.

And so YES, I was able to see that there IS a light at the end of that darn tunnel. YES, it WILL get easier, but sometimes it’s probably more likely a case of our challenges seeming more manageable because we now have experience and adaptability on our side.

Back in those early days, we weren’t as capable of predicting possible outcomes in the same way that we can now. We now know precisely what Harley’s triggers are and we either avoid them completely or find other ways around them to make them work for us. We have developed a “tool kit” that is custom designed for him and we rarely go out unprepared these days.

We’ve altered our expectations and have finally realised that sometimes it just isn’t worth pushing stubborn elephants up hill anymore.

And because of this I would say: YES. There is hope. There is HOPE and you will be ok.  My heart breaks for the pain they are in but I KNOW that they WILL be ok.

Because love conquers all and they have more than enough of that for their child or they would never have cared enough to write.

Where do I go from here?

When you read today’s post – please keep in mind that I’m not looking for sympathy. I am working through this in my own way by writing it out. I am not angry, or depressed or complaining, but I have found myself to be at a bit of an impasse and not knowing which direction to head in.

I  love my kids and am fiercely protective of them but on occasion…..there are parts of their brands of autism that drive me stinking crazy. Hence this post.

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

Ok. Ground rules laid out, let’s begin.

Most of you know that both of my boys are diagnosed on the autistic spectrum, and most of the time I’m ok with that. But if I’m being completely truthful with myself, I can admit that a lot of the time I also feel quite ripped off.

And there’s another emotion circling overhead that looks a lot like jealousy or anger but I’m refusing to admit that either of them are possibilities. So for now they will remain known as ‘the unknown factors’.

OK  ;)

And it’s not so much that I’m ‘jealous’ of the normal families that I seem to see everywhere – because I’ve mostly dealt with the fact that this is our life and that it’s ok to be different, but surprisingly I’m MORE ‘jealous’ of those families that only have one child with autism.

I’m ‘jealous’ of the fact that they can focus on that child’s needs alone and of the lengths that they are able to go to, to ensure that their child’s needs are mostly met.

I read stories about new techniques that they’ve learned and methods that parents have implemented and wish that there were some way that I could make them work for us. But I know that I can’t put one child’s needs on a higher priority than the other and I know that I am not able to always to meet both of their needs at the same time.

Sure, I join these parents in rejoicing when their child makes progress or learns something new but there’s a part of me that inwardly cries out: “My child could possibly learn that too if he were the only one I had to put the extra time and effort into”.

Because let’s face it. There’s no doubt that raising children is hard work full stop.

And raising multiple kids kicks it up a level. But raising children with a special need kicks the difficulty factor up a helluva lot of notches.

So trying to foresee and plan for 2 kids with completely opposite high needs – is nothing short of bloody ridiculous.

Most afternoons in the car on the way home from school – there is screaming and/or crying.  And most of these episodes can be attributed to the two boys driving each other stark raving MAD! The problems arise because they are both needing to escape from their brain overloads but because their sensory profiles and emotional needs are polar opposites – they do what calms them in completely different ways.

Harley goes into a trance like state where he shuts down and sits quietly with his arms wrapped up around his bended legs. He finds comfort from gently rocking back and forth and gazing out the window. I have learned not to ask him about his day or try to converse with him until he has had his down time and I know he will come to me when (and if) he’s ready to talk later on.

And this would be great if he were able to do this in peace each afternoon. Ella and I would gladly leave him be until he was ready for company. If he could spend the car trip home defragging from his day – I’m sure that our entire afternoons would be a helluva lot smoother.

But our problem is that Lucas also needs to defrag as well. But he gets his release from vocal stimming. He hums, makes throaty repetitive noises and flicks his fingers over and over again. He talks non-stop in boring monologues and pointless rhetoric.

And as you can imagine…..all of these…drive….Harley…..CRAZY!

So then the tears begin.

The tears quickly turn to moans, then to thrashing in his seat and eventually he screams at Lucas with his hands over his ears begging him to stop making those noises.

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

Do I try to stop Lucas from making noises (that really are quite harmless) for Harley’s benefit?

Or do I try to teach Harley to ignore it and give him headphones to wear instead. (Which I have done many times).

But then, there’s the part of me that wonders if I should be doing a better parenting job. I wonder if I should be using situations like this to teach them both a thing or two about life. Should I use the moment to teach Harley that there will be many times during his life where things  will annoy, frustrate and irritate him but that he needs to learn to suck it up occasionally. Or should Lucas be taught that his noises are irritating to other people and that he needs to control himself better and point out that people in the real world will tell him to shut up if he continues that into adulthood.

Well I suppose the time will come that both of these issues will need to be addressed, but then while my own brain is processing these thoughts, my mother heart takes over and tells me that it’s my job and responsibility to provide what they BOTH need and give them the grace to wind down from a busy day in their own individual ways.

And then the guilt begins.

Eventually my head starts to hurt and I react like I did today: Today it all got too much for me, so I pulled the car over on the side of the road, turned off the ignition and climbed out of the car for ten minutes to let them fight it out alone. I stood beside the car with my back turned to them just taking deep breaths and I counted to 100.

I totally bailed on them both.

And I did it because I simply didn’t know which child to help. I couldn’t prioritise either of their needs and problems and I couldn’t work out which decision to make. All I knew was that I needed to get as far away as possible from the chaos that was unravelling right before me and that I needed to escape immediately.

Anyone that has ever tried concentrating in traffic whilst children scream, throw things and kick the back of your seat will know that in situations like this, escape is not only highly desirable but also entirely necessary.

I did what I had to do to prevent me from having a car accident. And I would do it again in a heartbeat.

I’m still left wondering: How the hell do I fix this?

And why doesn’t anything seem to work?

I’m sure that both of them would be AOK if they didn’t have each other. If I only had Harley, I could provide that quiet safe place. If I only had Lucas, I could allow him to make the noises he needs to and run and bounce to his heart’s content. But I wouldn’t want to even imagine life without either of my precious wonderful boys.

But this isn’t just about a car trip each afternoon. As my friend puts it – I am living in a constant combat zone.

If it’s not the car, it’s the dinner table. If it’s not the dinner table, it’s in the bathroom with gurgling and teeth cleaning noises. Or the trampoline and the joyful yelling that goes along with it, or the TV noise levels, or the volume on the iPad. We leave one combat zone (the car) each afternoon to leap straight into another one that’s equally as exhausting and demoralising. And it continues well into the sleep combat zone.

And then I’m back to my original thought: Am I jealous, angry or is it something more?

Where do I go from here?

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

Look closely…It’s all in the eyes…

At first I really struggled to know where exactly to start this post, so late last night I sat down with a pen and paper and wrote out as many random words that came to mind in an attempt to try to figure out what was really bothering me.

I came up with: bewildered, annoyed, helpless, frightened, angry, exhausted and I kept coming back to the one word that crept up more often than the others: frustrated.

And I determined to try to find out why I kept coming back to that word.

I realised that when you’re a parent of a child on the autistic spectrum, you are thrown directly into the deep end and forced to assume the role of not only parent but also that of ‘interpreter’ and “translator’ and you take on this role often several times every single day whether you want it or not.

And most of the time I am totally ok with that, but then there are days that my inability to decipher and decode what my son’s actual crisis is about is when the words like exhaustion, angry, frightened and helpless start to creep in as well.

Last October I took the children home to visit my Mum in the school holidays, and while we were up there, we attended an 80th Birthday party for a close friend that Mum had helped organise. It was a great night and I think only a handful of people actually know what went on behind the scenes in our little world that night. I’m sure that most partygoers were blissfully unaware that my little boy was breaking his heart and clawing at himself in major distress only 2 rooms away from the festivities. Mum was helping in the kitchen and also unaware at first of the mayhem I was dealing with.

And that’s because I’ve become very skilled at removing my distressed child from the attention of onlookers in situations like that night before the brown stuff starts hitting the fans. It’s become my superpower

That night last year was triggered by one small remark that I had made offhandedly to Harley who I saw drinking his second can of soft drink. I casually said to him: “You’ll make yourself sick if you drink too much of that stuff”, and I walked over to greet someone else that had waved me over.

As I started chatting to this lady, I glanced over her shoulder and saw Harley’s face contort and his body stiffen and I knew I had to get him out of there immediately. I JUST knew. I excused myself and apologised quickly and ran the eight or so paces over to Harley and grabbed him under my arm calling out to Ella at the same time to keep on eye on Lucas. She nodded knowingly and grabbed his little hand and skipped outside with him towards the grassed area.

I love that girl.

Anyway….I got Harley outside through the fire exit and sat with him as he bent over the 2 foot brick wall flapping, screaming and crying his little eyes out. He was virtually non-verbal but I managed to figure out that the groans,grunts,screams and cries were to the tune of “You said I’m going to be sick….I don’t want to vomit, I don’t want to be sick, I’m so sorry, I’ll never drink lemonade ever again”

Oh yeah…..Did I mention that one of the traits of  individuals on the spectrum is EXTREME literalness? Well it is.

He had convinced himself that he was going to be physically sick and because he is a massive germ-o-phobe….this was totally unacceptable to him. He stresses if someone even SAYS the word vomit in his hearing so the thought that he might actually be sick himself, had done his head in. I sat there with him for what seemed like hours and I managed to get him to calm down (well, the screaming and crying stopped but the rocking and the nervous flapping hung around a lot longer) and I walked him back inside because he was begging to wash his hands.

As I waited for him outside the bathroom, I saw a friend who I grew up with and hadn’t seen for years, and we started chatting. He and his lovely wife have a beautiful daughter with PDD-NOS and I only had to say that Harley was “having a moment” for him to understand exactly.what.I.meant.

Shortly afterwards, Harley walked out of the bathroom and my friend (God bless him), took one look at my boy and gave me a hug saying: “Ok……You need to leave right now, I understand completely….it was great seeing you.”

I picked Harley up like a little infant and carried his limp sweaty body out to the car with Ella and Lucas following me. I placed Harley into the car seat but he clung to me like a baby koala refusing to let go.(This child is 8 mind you). I couldn’t stand there holding him with my back bent on that angle so I lifted him out and sat with him in the gutter. And there we sat for another half an hour rocking and the tears stopped wetting my shoulder and he eventually released his grip on me and we were able to all get into the car and drive home.

My mum told me later that my friend had said that when he looked into Harley’s eyes, it spoke volumes and that everything made total sense to him at that moment.

I’ve learned long ago that parties and Harley just don’t mix. THIS is why we regretfully decline a lot of invitations (and probably why they’ve stopped coming in anymore).

And it’s important to mention that it wasn’t just the literal comment  of mine that sent Harley spiralling downwards that night, that comment was only the trigger. I had already noticed anxiety rising in him earlier on due to the crowds, loud noises and unfamiliar surroundings. He had his headphones on but the noise wasn’t the only thing bothering him.

Look closely. Those eyes tell a lot. They are saying: "I'm nervous but I know Daddy will protect me"

Which all leads to me yesterday.

Yesterday was the Easter hat parade at my children’s school. Just those words induce horror in a lot of ASD parents and it was no different for me. When I arrived, the kids were all seated in their classes in the quadrangle with the parents and visitors all sitting and standing in a large circle around them. There were a LOT of people there and each class danced around in a circle to very loud and lively music one by one.

Harley’s class got up and from 20 metres away I saw his eyes and said to my friend: “Uh-Oh, he’s gonna blow”. I just knew. It was written all over him and though he may have looked shy or reserved or even nervous to the average Joe….I knew exactly what I was looking at. I’ve seen it many times before, it was unmistakable.

So how did I know?

I have been asked many times how I “know” when he’s about to topple over the edge from coping to a soggy mess and until yesterday I was unable to actually pinpoint exactly how I know. The answer is in the eyes. As my friend pointed out at the party, it was in the eyes. Yes, the eyes tell a LOT. It’s ALL in the eyes.

These eyes say "I'm safe and happy".

As soon as the parade was over I took Harley by the hand and walked him over to his teacher.  He stood beside me silently head butting me and yanking at my hand and I asked her to look closely at his face and body language and explained that THIS is what the lead up to a huge explosive meltdown looks like. I asked that if she ever sees this face….it would be advisable to help him escape to a quiet place as quickly as possible. I explained that it’s when his sensory system is about to blow and that it’s something that you preferably need to get to in the early stages but if not – you need to deal with it ASAP.

I walked him into the quiet vacated classroom and he sat in the corner crying, rocking and shaking. His eyes were filled with pain, with fear and they were pleading for me to fix it all for him. To make it all go away and to help him to soothe himself because he knew he was past the point of no return. He didn’t speak a word but his eyes told me all I needed to know. The rest of the day was a complete write off and ended badly with the effects on the rest of the family carrying over well into the night.  I put on my brave face and acted all nonchalant because I’ve gotten that down to a fine art now But yesterday was hell in many ways. Hours and hours of inconsolable crying and screaming will do horrible things to most people, and I for one, cried long into the night.

And this is where the word frustrated comes in.

Everyone assumes that as his mother that I always have the solution. That I can come along and save the day and that because I can read him that I can make it all better, but this is not always the case. And most of the time I wing it all anyway because what may work one time isn’t guaranteed to work the next. It’s frustrating to be able to predict most meltdowns yet not know how to deal with them.

I was so frustrated as I watched other families laughing, talking and enjoying their picnic lunches with each other, while I had to go and fetch the head of junior school to retrieve my son who had locked himself in the boys toilets crying and screaming only to run out and escape and be untraceable for the next half  hour.

I was so frustrating to have to make my youngest child miss out on his first ever book parade after activities and it was equally as frustrating to have to go over to middle school and ask my 12 year-old daughter to leave her friends and sacrifice her lunch hour to help me by watching one of her little brothers while I searched for my absconder and do massive damage control when I finally found him.

It was even more frustrating for me to see other children on the spectrum sitting quietly with their parents eating their lunch while I bravely held back the tears yet again. I wondered what they had all done that I had forgotten to do?

Why were their kids coping and mine wasn’t? What did I miss?

How come no-one else’s child lost it on such a grand scale?

I finally convinced myself that these other parents must do what I do and whip them outta sight at the first inkling of an explosion too because any other answer would have been far too tough for me to bear.

So yeah….. Frustration is the word of this week.

But next week I’m aiming for fantastic
What are you all aiming for?

I am Mrs 79. Pleased to meet you.

I’ve been thinking a lot lately about the environmental factor in autism. Sure , we know it is only one possible theory as we already know that it’s also made up of a genetic component. And yes, I know there are certain people out there with theories that vaccinations have triggered off those children that were already genetically pre-disposed but that is an argument that I am NOT going into as this is not the direction that I want to take this post in.

So, I know that environment is only one small part but I definitely feel that it can be a big part nonetheless. Tony Attwood has said that to reach a diagnosis of aspergers, it is like ‘completing a 100-piece jigsaw puzzle. You need 80 or more pieces to complete the picture’.

 So, my boys are obviously made up of 80 or more pieces (and I believe the husband is too) . He often jokes to me that I am only one piece short of receiving a diagnosis myself.

In fact he regularly affectionately calls me ’Mrs 79′. He is referring to the obsessions that I have developed over the almost 14 years that we have been married. When we first got hitched, he took a photo of our master bedroom to show the difference between his side and mine.

His was spick and span, neat and tidy and anally perfectly organised. And then my side……clothes thrown everywhere, books piled high and balanced precariously on the bedside table, an abundance of moisturising creams and make up in the drawer that was regularly left open and shoes strewn carelessly over the floor.

You get the picture.

I deliberately misplaced couldn’t find that particular photo anywhere to put it on this post so you’ll have to take my word for it!
I was young, messy, lazy, nonplussed and regularly made fun of Mr Patient for his pedantic and obsessive ways.

I clearly remember (not knowing about ASDs back then) that he often had what I can now see were actuallymeltdowns if things didn’t go exactly as he’d imagined they would or if plans changed without his prior knowledge. For example: Before meeting me, every 1st Saturday of each month was spent on the ‘inside’ of the house cleaning, and every other Saturday was when he would do the ‘outside’ (mow the lawns etc). So you can imagine his freak-out the first time that I invited friends over for lunch on ‘Outside Saturday’  week. Or made a picnic and suggested we drive to the beach on ‘Inside Saturday’….. He struggled to say the least!

But then as the years passed, I became more and more obsessive myself. I became the mother that had all of my children’s clothes hanging on the same coloured hanger as the shirt: White shirts on white hangers, blue shirts on blue, orange shirts on orange hangers and they were all grouped together in the colours that blended.

The blue shirts were next to the green which were next to the yellow which merged seamlessly into orange etc. No-one else was allowed to touch the clothes…….including Mr Patient and I would flip out if anyone so much as looked at the wardrobes.

And when I hung clothes on the clothes line – blue clothes HAD TO be hung with TWO blue pegs. I simply wouldn’t cope if you used a red and a blue peg. *Gasp*

I had also started to turn into a neat freak wanting everything perfectly in its place and working myself to the bone to make it happen. I would screech at the children if they had more than one toy out and I was unable to leave the house in the mornings until ALL of the beds were made and the dishes were done on the off-chance that SOMEONE would come and visit. (No-one ever did). I really started to be bothered by all of this and questioned myself as I knew that this wasn’t the real me.

So I took myself off to see a psychologist fearing that I was losing it big time!

I had a lot going on; My Dad had just passed away, Harley was only recently diagnosed, I had suffered a particularly nasty case of glandular fever (mono) that almost turned into CFS and my body was in shut-down due to the 4 major surgeries it had endured in just 2 years.

My immune system wasn’t coping and my stress levels were at an all time high. The psychologist helped me to see that everything else in my life was literally spiralling out of control and I so desperately wanted to gain back some control. And the washing was one thing that I actually COULD do something about.

She gently explained that what I was doing was a form of ‘normalizing’ my life. By controlling these mundane every day things so closely I was able to take back some ground that I thought I had lost through circumstances beyond my control. Nowadays – I still LIKE my clothes to be on the right hangers but if they aren’t, I don’t lose it, I’m able to just shrug my shoulders and move on!

I have realised that it’s not the end of the world if a blue shirt goes on a red hanger and my house RARELY looks like a show home anymore. (I have three children for goodness sake!)

And yes, there is actually a point to this – stay with me, I’ll reach it eventually…..

So, back to the environmental factor in autism.

I was never a particularly obsessive person, in fact the bedroom photo story proves that point perfectly, but when stress and circumstances were combined……I did develop some very obsessive tendencies that are often associated with spectrum disorders.

So it is interesting to me now to look back and realise that environmental factors DO in fact play a large part in autism.  And the term ‘environmental factors’ does not just apply to untested chemicals, pesticides, flame retardants, detergents etc.. but things like the circumstances of our life, or the environment in which we live and also our everyday surroundings .

I wonder that if I was married to someone who was as sloppy as me and also didn’t care for routine, if things would have been different? I may not have dived into these obsessive natures that I often witnessed in my husband as HIS coping strategies and I wouldn’t be comparing my non-coping signs to those of individuals on the autistic spectrum?

I guess I’ll never know.

But my mum tells me that as a child growing up, I didn’t struggle in social situations, I made friends very easily and  I was NEVER obsessive or needed routine or structure.  I thrived with change and I know for myself that I have never felt particularly  ’different”’or had any trouble understanding body language or facial expressions.

Yet……now that I am the only NT in (what may as well be called) a house full of aspies – I have somehow been ‘moulded’  into an honorary aspie if you will. I think it’s just a case of sink or swim.

I have needed to adapt to my surroundings and I have had to choose to see things through a different lens.

I may have gradually gone from perhaps 20 pieces, to 30, then to 40 and now I may possibly be up in the 70s so I truly believe that the environmental factor HAS played quite a major part here.

It surely makes sense. I live it and breathe it. It’s all I am surrounded with. It’s something that I can never and would never WANT TO escape.

It’s all A-OK with me because 79 is a FABULOUS number after all.

Have a great weekend all.

Someone broke my baby.

There has been a huge shift around here lately. And it’s really thrown me. I’m not sure what exactly to do so I’m gonna write until I can get my head around it and try to make some sense and figure out a game plan.

Feel free to click somewhere else if you’re not interested in my ramblings. I wouldn’t blame you!

~

Oh? So some of you stayed! I’m impressed!

I’ll go back to the start of the story:

Exactly five years, 8 months and 2 weeks ago we welcomed out second little boy Lucas into the world.

He was unplanned but a really beautiful surprise. He was an incredibly good baby and an absolutely treasure. I admit that I was nervous carrying him for several reasons but mostly because I was genuinely scared to have another boy.

You see, Harley was an absolutely impossible baby with more issues than you could poke a stick at and still at almost 9 yrs old doesn’t sleep through the night.  Or cry any less, or eat any more or behave any better than when he was a toddler.

Ugh.

I remember the day clearly. I was at my 20 week ultrasound. And when the sonograper told me that I was carrying a boy, I burst into tears, NOT because I was disappointed and NOT because I didn’t want him but simply because I just didn’t think that I could possibly go through all of that drama again. The very thought of dealing with 2 completely out-of-control little boys just scared the pants off of me! (Harley was still undiagnosed at the time).

I have always said that out of the 2 boys, Lucas is the easy-going and unflappable one and Harley (although an absolute treasure and blessing himself) has been the almighty handful.

I’ve written MANY times that despite both of the boys sharing a diagnosis of Aspergers Disorder, they couldn’t be more different. Lucas has flourished and shone from very early on and Harley has struggled with extreme anxiety issues, massive sensory issues and is way more aggressive by nature.

But that has started to change lately.

These days – Harley is getting up in the mornings, making his own breakfast, eating it and getting dressed in record time. He has finally worked out that once everything is done – he has more time to do the things he enjoys before school. It’s been an absolute joy to see him so compliant and has given me hope for the future after all the years of heartache that he has provided.

And just when I started to count my chickens…. I found plenty more just waiting to hatch.

Because nowadays, Lucas has taken up the baton and has picked up where Harley left off.

We are running the same frustrating marathon that we ran with Harley at the same age and I gotta tell you – it absolutely sucks.

Lucas is now the one lying thrashing on the floor screaming, kicking and flailing his arms every morning. He is refusing to eat breakfast, making his body like a dead weight so he can’t be picked up to be dressed and hiding underneath his bed and refusing to comply with anything. Cleaning his teeth needs 2 adults . One to hold him down and prise his mouth open and the other to block their ears with their spare hand and shoulder to drown out the screaming and try to wrangle a toothbrush into the tightly clamped shut jaw.

Mornings have become quite a drama and it’s taking me almost and hour and a half to get them out of the house these days. He is crying more than I’ve ever seen him cry and is coming home in the afternoons like a bear with a sore head.

It’s like he has had a complete personality change.

I went and spoke to his lovely teacher last week and asked her if she’s noticed anything different in the classroom. And predictably she said that he is doing really well. ( I expected that *sigh*)

In fact, she said that he is on a reading level that is a lot higher than most kids his age and that he excels at reading and writing. I stood there with my mouth hanging open and was shocked to say the least since I’ve watched Harley struggle with every.single.aspect of school since day dot.

I’m not used to hearing things like that. Usually teachers tell me that “I know he’s trying but…..” or “He needs to work on….”.

So to be told that your child is excelling should feel really good right?

Well maybe if we weren’t copping the brunt of his exhaustion and frustration at home.

I think he does actually love school but it is absolutely draining him. I think that it is a case of the typical aspie habit of keeping it together at school and losing the plot in a big way once he’s safe at home again. I’ve seen this all before.

But whatever it is, I want it to stop. For his sake as well as ours. I want him to not only cope but to thrive and flourish. I’m thrilled in the progress we’ve made with  Harley but wishing that I could enjoy it more without this hanging over my head.

I’m too tired to do this all over again for God only knows how long. I feel like I’ve done my time, and I’m stamping my foot and pouting. It’s just not fair.

Lucas used to be my placid side kick. He was my take anywhere child. He was a reminder to me that I wasn’t a crappy parent and that Aspergers was more than out-of-control behaviour and aggression.

But then I sent him to school and he came home all changed.

Someone broke my baby.

Was it worth it? Yes, yes it was!

Occasionally, our family likes to walk on the wild side.

The most relaxed we've been for a while!

But for most regular families these kinds of things don’t seem to be all that wild because they are things that they probably take for granted and really don’t have to give a second thought to. Things that have become as natural as breathing, like taking a family outing to a live stage show as we did yesterday.

We took the kids to see “How To Train Your Dragon” and it was wonderful.

The preparation that we put into this event before even leaving the house was mammoth and it’s sometimes a mind-numbingly boring task, but one that is extremely necessary if we want to survive!

In the days leading up to Saturday, we spent time talking about what might happen and discussing what to expect with the boys.  We NEED to do this because if we don’t – we suffer the consequences in over-stimulated and inconsolable children.

In our chats, we covered things such as: crowds, smells,  loud noises, bright lights and anything else that might be an onslaught to (Harley in particular)’s sensory system.

So yesterday morning, we packed the car and reversed out of the driveway.

Cue the anxiety. DESPITE all the preparation. *sigh*.

Harley rocked, he flapped, he cried and he yelled. I was kicked in the back of my seat several times and during the 45 minute drive, we were asked dozens of times ‘How much longer’ through a torrent of tears.

To a person who is unfamiliar with autism and how anxiety and fear of the unknown can often present – it would have easily have seemed that he was being an ungrateful and spoiled brat. But I knew that he was just unsure and overwhelmed with the anxiety that so often cripples him, but even myself who understands the why’s of this behaviour seriously wondered if it would have been better to just turn around and go home.

However – one thing that we have learned is that we know that we need to expose our kids to more of these kinds of situations – as hard as they seem at the time – to help them to learn what is and isn’t acceptable behaviour in public. I often feel cruel putting them in situations like this that are difficult for them but know that the end pay off is worth it.

And it was.

They absolutely LOVED the show, and to watch the wonder on their little faces as they took in the drama and action was priceless.

And I had another example of how small the world really is. The lovely lady sitting beside me  (Let’s call her *Jenny) had a lovely teenage son who reacted to the smoke in the air before the show began. I noticed him pull his shirt neckline up over his nose in much the same way that I have noticed my own kids do it and smiled at her. We got chatting and the “a” word inevitably came up and there was a direct understanding instantly.

My how I LOVE these kind of encounters

*Jenny had forgotten to bring her son’s iPod so I was able to give him some spare ear plugs that I keep in my handbag. We swapped names and have now become Facebook friends.

So Hi *Jenny if you’re reading this!

~

After the show finished we went to a nearby park and got some fish and chips to eat under a tree. It was fabulous.

We laughed together about funny scenes and each of us told what out favourite parts of the show were. There was MUCH excitement!

I took in the moment with a mental photograph as this was as close to normal that I have seen us all in a long time. At that time, we were just another family sitting under a tree together giggling, smiling and enjoying being together. Sadly – this is quite rare for us these days and I didn’t want to ever forget that exact moment.

The park we went to was like a massive O.T. session for the boys and we spent a couple of hours watching them slide down tunnels and climb up rock walls and spin, swing and run to their heart’s content.

It was absolutely the best afternoon and I’m so thrilled that we got to spend it together. As a family. Doing what other families do. ALL THE TIME.

Eventually Harley started showing signs of reaching his limit and Lucas started flagging as well so we headed for home. We fed them, bathed them and then everyone went to bed early. Once they were all settled,  Mr Patient and I all sat down with a huge glass of wine and we crossed the day off as a raging success.

This slideshow requires JavaScript.

Or so we thought at the time.

Yesterday was a huge day and it took its toll on them more than we had realised. This morning in particular was really really hard. Harley was a mess of tears, anger, frustration and tiredness.  I had to carry my almost-9-yr-old son into church and he clung to me like a baby koala. He had tears streaming down his face and I had to end up sitting out underneath a tree with him outside rocking him and soothing him for quite a while until he calmed down enough to go inside again. And it absolutely breaks my heart when he’s like this – especially when I know that I have had a large part in him reaching his limit but I know that we have to expose him to the real world in order for him to learn how to function on his own one day.

And because his disability isn’t obvious to the untrained eye – he will need to learn to adapt to different situations to survive in life and gradually, we are helping him to understand this.

And THIS is precisely what autism families mean when they say no to an invitation citing the reason “It’s not worth the repercussions later”. THIS is why we often opt to stay in our safe little autism bubble shut off from the world. We are not being exclusive, we are not avoiding people, we are doing what’s best for our kids and ultimately ourselves. But we know that eventually we have to step out for the greater good.

And that’s exactly what we did…….One small step at a time.

Hope you’ve all had an awesome weekend.

Fi x

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

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.

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!

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!

~

~