I have love.

I’ve was sitting down at this computer for several hours this morning writing out whatever came into my head. I was trying to process some big stuff that’s going on here and writing it out usually helps me to make sense of it all. Heck – I stayed up most of the night trying to write it out and got nowhere.

And it didn’t work today either.  At all.

Words were looping in my brain and the solutions all seemed so far off. So I turned on some music, closed my eyes and tried to slow my brain down by forcing my thoughts to go elsewhere.

 I do wonder at times like this just how much aspie there is in me. Maybe I’m not as neuro-typical as I first thought? Or maybe this is a normal reaction to too much stress and confusion.  I just don’t know and don’t particularly care right now.

I turned off the computer and moved over to the lounge room to lay down on the sofa. I could hear the children playing in the background – the sound of the Ninjago app I recently downloaded was coming from the iPad.

My daughter was watching one of her teen shows on TV and the little one was rolling around on the rug piling cushions on top of himself because he was seeking sensory input. I looked at each of them and smiled. They really are everything to me. So different to one another – so unique in their own special ways.

Ella walked over to me and handed me a coffee. It was strong and black – just the way I like it and sat down beside me putting her tiny waif arm around me pulling me close and kissing the top of my head. The daughter was comforting the mother – so wrong yet so RIGHT. And this action in itself is HUGE because she is not a touchy-feely person at all. But my girl sensed that I needed to be held.

In that moment I thanked God for allowing me the privilege of raising her.  I love her so much and can’t believe that I have been trusted with so much.

I looked over at my big boy and noticed him reading his new Ninjago book intently.  He was engrossed and sitting on his haunches just like my Dad used to do. A tear came to my eye and I wiped it away quickly. I couldn’t afford to lose it, there was too much to be done.

My little one had progressed to doing laps of the living area. He had set up an obstacle course with toys, bean bags and cushions and was jumping, skipping and hollering with delight. My problems suddenly seemed so insignificant.

I closed my eyes and lay my head back down and drifted off to sleep because I had been awake for most of the night. When I awoke later I heard giggling in the kitchen and I crept out to see the three of them working as a team. They were making me the most disgustingly wonderful sandwich I have ever seen. And instantly nothing else mattered.

I realised right then that I have everything because I have love.

It may not always come from where I most desire it, and it is sometimes disjointed and awkward and usually messy, but I have love.

Thank God for love. Thank God He loves me more than any other human being could possibly love me.

Thank God that He sees me and not the mess I have made of my life, and He loves me still.

Have a great weekend all.

x

Yes – it’s an old pic but the only one I could find with all 3 kids in it

Sneakiness has its merits…

My friends are sneaky.

Not all of them, but some of them.

These are the friends who instinctively know when I’m off my game and don’t let me fade away because they know its not good for me. They know that when I withdraw it’s an alarm signal.

You know……

• The email that states that I’m not required to respond but that they want me to know that I’m being thought of and prayed for.
• The text messages that are innocent enough but have a deeper underlying purpose….digging for details on how to help me. Or even asking a mutual friend to contact me to check that I really am ok.
• The phone call out of the blue just to say “Hi” .

And then there was today. Today a friend took me out for lunch. And the fact that I can boldly say that it was the best gluten-free meal I have ever eaten to date is not the most meaningful thing that I took away from our little rendezvous. The wonderful quaint little gift shops that we browsed in wasn’t it either. And believe it or not: it wasn’t even the amazing coffee we had. No. It was “where” she took me. She knows me and what I love the most.

Remember in previous posts where I have written that sometimes I need to escape to the country to find my balance again? That there are days when I just need to get away from the stress and hectic pace of my life and clear my head?

Well….she took me there. To my favourite little country getaway with the beautiful people and the incredible landscapes and cute little churches.

She’s clever isn’t she?!

But I didn’t work out her plan right away.

Sure she mentioned that she’d noticed that I sent her a picture last night instead of writing but I didn’t think too much of it at the time.

I savoured my lunch. Well no, actually – that’s a complete lie – I wolfed down my sourdough chicken burger like there was no tomorrow! But what I mean is: I was content in my surroundings and relaxed and happy, I was laughing, chatting and absolutely in my element. And I haven’t been in that place of contentment for quite a while now.

My friend asked me if I could picture myself sitting outside on the verandah with a coffee listening to the bell birds with my iPad in front of me writing. And even then, I still didn’t realise what she was doing. I’m not even sure if it was deliberate or not but it worked.

I turned a corner. I was able to quash the feelings of inadequacy and standup to that voice in my head telling me that I’m a waste of space and mentally yell back at it: “What I think and write and who I am is important so SHUT UP!”

Giggle ….giggle….I like feisty Fiona …

My friends know that writing is what works for me. It’s how I process my thoughts and work through emotions. But lately I have shunned writing. It has all been too hard and I really wasn’t keen on facing any of my challenges head on.

I kept my head stuck firmly in the sand refusing to face up to anything.

There has been a lot of stress here lately and the fact that our house is currently on the market hasn’t helped. We have had a low offer which we refused and another offer of the exact amount we were hoping for only to have the buyer change their mind and withdraw their offer 2 days later. At this point it looks like we’re staying put and I’m more than happy with that right now.

Also: it is the last week of school next week and the exhaustion and frustration is evident in all of the children but especially Harley. He is tired. He has mentally signed off for the year and is coping by tuning out everyone and everything. (Hmmmm. wonder where he got that from?) hehehe

There have been challenges in our marriage and struggles in our family dynamic and its all gotten on top of me.

But my friends haven’t deserted me. Even though I know I’ve been difficult and aloof lately, the emails and texts have been constant and kind and caring. I have needed them . They are truly what have kept me going.

That and the reminders of where I need to get my strength. I admit that lately I have stopped laying all my cares at the feet of Jesus. I have tried to do it in my own strength and failed miserably. But just like my friends here on earth He hasn’t forgotten or forsaken me. And for that, I am truly thankful.

I have learned that unlike my husband and sometimes my boys; I need people. I need to chat, to hug, to be hugged and to do life alongside others who get me. Some people do well by limiting their interactions but I’m not one of them. I crave human contact and start to nosedive whenever I choose to isolate myself.

And tomorrow night: I hope to write more about the past few months and the awesome progress that my boys have made.

The clouds are clearing: the sun is peeking through and the curtain of lethargy and depression is lifting.

And even though I was raised in a Pentecostal church – I am still partial to the odd old hymn. Like this one because it just sums it all up perfectly.

It is well with my soul.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, (it is well),
With my soul, (with my soul)
It is well, it is well, with my soul.

Unsent letter

To the person who has hurt us,

You do know who you are,

I want to tell you here- right now,

That you have gone too far.

.

I want to let you know that we,

Still love you just the same,

But it hurts me when you judge our ways,

And give me all the blame

.

You know my life is not like yours,

And it will never be,

I do the best with what I have,

So please don’t bad mouth me

.

My children know that they come first,

And have my full attention,

So forgive me now, if you’ve to wait,

And I am not perfection

.

I feel that you just inward look,

And make it all about you,

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

You never seem to approve

.

I’m sorry if you feel that I,

Have been a dreadful pain,

I have no time for childish rants,

It’s puts me off my game

.

My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

.

I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

.

I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

.

So instead of focusing on yourself,

Why not offer to shoulder our burden,

And walk a mile in different shoes,

Before just spurting your poison.

.

I work so hard but still you want,

To criticize me and complain,

You won’t believe in ASDs

So it’s always just the same…

.

I’ve tried to tell you all I can,

But you don’t want to listen,

So saying that I am “not right”

Has been your latest mission

.

If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

.

The things that you’ve complained about,

Weren’t done to tick you off,

My heart was right, and full of love,

But now….I’ve had enough

.

I can’t go on pretending that,

Everything is now okay,

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

I’ve nothing left to say

.

I truly hope that you get to,

The place where you find peace,

I pray that God will bless you lots,

And that this tension now will cease…..

Tidal waves.

I find it disconcerting to say the least when my child has a bad day, because a bad day round here doesn’t look the same as a bad day anywhere else.

No.

It looks like an angry tidal wave that is threatening to wash away everything in its path. You can’t escape it and there’s not a lot to grab onto to steady yourself anyway.

Everything seemed to be sailing smoothly this week until yesterday when Harley came home and flew into a rage that was completely unprovoked, unpredictable and unexplainable. As he ran through the house pushing things off shelves, kicking doors and walls and banging his own head repetitively on the cold, hard tiled floor, we stood by watching him helplessly knowing that we had to let him ride it out.

We knew that it was something big that had caused him to react this way and we also knew from painful experience that the underlying reason may not be something that would be discovered easily.

Although he appears to be in the fight response when he is like this, his inability to form coherent words when he is in this distraught state of mind causes him to cross over ever-so-slightly into flight mode. He mentally shuts down and his eyes glaze over as he searches frantically for a safe place. He needs to escape his own brain and he cannot rest until he does. He has been telling me in the days leading up to now that his brain feels fuzzy and that his head is telling him to stop spinning. I should have heeded this warning….

Because his cognitive functioning skills are non-existent at times like this and he lacks any hint of social appropriate behaviour when his brain overloads itself, I cannot do a darn thing for him.

He just needs to “get it out” and does so however his mis-firing brain tells him to do so. Appropriate or not.

But there is ALWAYS a trigger. It’s all about the three R’s. The rumbling, rage and recovery stages.

I failed to recognise the rumblings and was punched in the metaphorical face with the rage cycle instead and waiting until recovery arrived was my only choice. The only thing I could do was ensure that he was safe in the process and that his siblings were also kept out of his path until the storm had passed.

Eventually he fled to his bedroom and lay down on his bed thrashing and kicking until his body was so exhausted that he fell asleep. I went and laid down beside him and stroked his sweaty forehead and prayed over him until his body stopped fighting and surrendered to rest.

As an autism mother it is one of the most difficult parts of my job. It is draining, it is heart-breaking and nothing makes you feel more helpless than not being able to comfort your child when his thoughts are attacking him and he literally rips and scratches at his own head trying to get some peace.

But also as his mother – one of the most rewarding parts of my job is seeing him breakthrough and make progress.

He only slept for a very short time. Just long enough for his brain to process whatever it was that had triggered the tsunami and allow him to return to the world that confuses him so much.

He woke up and found himself in my arms and gave me a weak smile. His tiny voice shook as he shared with me his heartbreak.

And right then – my heart broke all over again.

He is being teased: He is being called a “baby” because he claims that his best friend is his teddy bear. He is being called a “Mummy’s boy” because he flew into my arms at school excitedly yesterday and gave me a big kiss and told me that he loves me. And he is being told that he plays silly games and talks funny.

Um yep…

 Socially inappropriate behaviour not in line with his biological age??   Can anyone say “ASD”?

Back to the freakin’ neurotypical teaching drawing board. It’s not fair. It’s just not fair.

Urgh…

Understanding and working through guilt.

Mum introducing baby Harley to a horse

In just under 2 weeks time – Mr Patient and I are going away overnight to attend my cousin’s wedding. The venue is a couple of hours drive away from here and rather than try to drive back later that night, we have decided to stay in a nearby hotel instead.

I’m actually finding though – that I’m having the exact opposite emotion to guilt (whatever that’s called) whenever we leave the kids with friends or family these days.  Instead of feeling guilty that we have left them…..I feel guilty because I’m NOT missing them….How twisted is that!?

But it hasn’t always been that way.

For many years I carried guilt and shame related to leaving my children and it’s only been recently that God has set me free from this burden and I’ve been able to see that in actual fact – in the particular circumstances that I have lost sleep over I didn’t even do anything wrong. It can all be traced back to the different brain wiring of my son and the fact that we didn’t know anything about it.

I clearly remember way back to in late 2003 when Ella was almost 4 and Harley was still a baby.

None of us had slept more than an hour at a time on any night due to Harley’s constant screaming and crying, but my parents knew that we were absolutely exhausted and needed a break.

So they offered to mind the kids for us up at their place (in the country) for 5 days so that we could escape over to the coast to stay in a gorgeous little bungalow on a lagoon that they had booked for us. We were SO excited at this idea and knew that we desperately needed this break and looked forward to it for WEEKS.

Prior to this – I had been having headaches and facial numbness for months but it had gotten a lot worse in the weeks leading up to this escape so I went and saw the seventh Doctor in two years and listed my symptoms for the 7^th time expecting to be sent away being told that I was a hypochondriac again. But this time I demanded that the Dr do an MRI because I wanted to put my mind at ease once and for all so that I could enjoy this holiday with nothing to encroach on my peace.

But of course the MRI revealed the brain tumour that I had been accused of inventing symptoms for, and our little couples escape never happened.

On the night before I was due to go in for my surgery – my baby Harley came down with the chicken pox and wasn’t allowed to come and visit me in the ICU or even after I was transferred to the brain injury ward until the spots had disappeared.  On the morning of my admission to hospital, my Mum clearly remembers standing on my front porch waving her daughter off to have life-saving brain surgery while her grandchild itched and cried for his Mummy. His little arms reached out to me but I had to turn and walk away. THE hardest thing I’ve ever had to do to date.

When he did finally get the all-clear from the Dr and was allowed to visit me in hospital – he didn’t seem to know who I was. He was only 14 months old and Grandma was the only person he responded to. This was my first introduction to mother’s guilt.

Fast forward almost 2 years and 2 major surgeries later and we finally took that well-deserved holiday on the coast and by then – we were even more in need of a break than 2 years earlier and couldn’t WAIT for the day to arrive.

So we drove the kids up to Mum and Dad’s and jumped back in the car and drove to the coast to r-e-l-a-x!

But do you know what?  Once we got there – we didn’t know what to do with ourselves!  We didn’t know how to just stop and we were unable to relax much because we continued to be consumed by guilt.  After our first swim in the pool, dip in the spa, stroll along the beach and dinner and movie date – we were all outta ideas! And this was all done in the first day!

We weren’t used to having so much time alone together and didn’t how to spend it! We phoned the kids several times a day and actually ended up going back a day early to surprise them! We had clued Mum and Dad in and asked them not to tell the kids.

And to this day – I’ll never forget Harley’s reaction.  Even as young as almost 2, he showed signs of being very distressed by changes in plans.

(And recalling all of this now – I can’t believe that we missed the “A” word for so long).

 So we pulled up in my parent’s drive way and walked around the side of the house because we could hear them playing in the back yard. We didn’t call out to the kids – we just stood there and waited for them to spot us.

Ella saw us first and immediately came running over exclaiming “Mummy, Daddy! I’ve missed you!” But Harley burst into tears and clung to Grandma’s leg… He was confused and wouldn’t come anywhere near us. Me particularly. I remember how devastated I was by this but I think I did a fairly good job of disguising my hurt. We’d only been gone 4 days and I already felt as though I’d abandoned my child and his reaction to me just magnified my guilt. It took me a very long time to stop blaming myself for going away and leaving him even though deep down I knew that we desperately needed the break.

That afternoon, Harley stayed close to his Grandma for hours and eyed me suspiciously from afar.  He lay on Grandma’s knee and drunk his bedtime bottle that night and she was the one who laid him in his cot. Not me.  He didn’t want me. I remember how much my heart broke that night. It stayed with me for years but I didn’t know then that this was one of the early signs of his autism causing confusion, and anxiety in him.

~*~

I was only thinking about all of this today and for the first time I actually GOT IT!

I finally get that these incidences of Harley’s over the top reactions to change were nothing at all to do with my parenting (or lack of). I can now see that they were both just very early indicators of a little boy who is wired very differently to me.  I understand that his response to these events can be attributed to the fright response that is common amongst ASD children when they are confronted with a situation that didn’t go the way that they expected. Harley was simply reacting to change and clung to that which made him feel safe.  And in both of those circumstances – It was my Mum that was his safe place.

It has all become crystal clear to me this week exactly WHY Harley has such a closeness with Grandma.

I now understand completely that she was the only constant in his life every single time that things have gone belly –up.

She was not only someone who was there for him when he needed it most.  Someone who knew he was special and knew that he was different but chose to love him unconditionally and without judgement.

Thank God for my Mum.

And thank you God for healing my hurt.

Surviving on Fizzy Pop.

image via graphicleftovers.com

I was thinking about the difference between ‘coping’ and ‘surviving’ last night as I sat and chatted with a close friend that came over to visit me. I used that phrase to refer to how I am feeling personally at the moment and I realised that lately I have been a lot more in survival mode rather than actually “coping”.

But this post is not going to be about me.

My friend Valerie was the first place that I’d heard use these terms and she used them to refer to the way that children with autism are in a classroom setting amongst other children, and how they can often ‘appear’ to be doing quite well even though that’s often not always the case.

I wrote on Wonderfully Wired’s Facebook page recently that I always know when it’s going to be a difficult afternoon whenever Harley’s teacher tells me that he has had a great day. In fact, when I hear this – I inwardly cringe because I just KNOW that he’s saving it all up for me. (oh joy). I know that this is quite common in a lot of aspergers children (but by no means ALL of them) and I always thought the reason was that they are intelligent enough to know what’s required of them at school but once they get home again, all bets are off and the pressure cooker valve is finally released.

Well – this is true but my friend (an adult aspie) Lisa explained it to me in a different way. One that had never occurred to me before.

She commented on that observation of mine with these wise words:

A little Aspie nugget here: a good day from a teacher’s perspective means you did your work and behaved yourself. From my memory of this it also meant that I was shutdown, in daydream mode and holding back all day. I’ve been told by an Aunt that I’m like a bottle of fizzy pop. We all know what happens if we shake fizzy pop then take the lid off.

WOW!

I’d never thought of it like that!

So what the teacher was interpreting as a ‘good’ day meant that he was behaving ‘like all the other kids’. But what this required for him was to completely shutdown his natural tendencies and conform to be something that he’s not. I can now understand why we always cop the brunt so badly when he gets home. It’s because he just spent the better part of the day being something that he’s not and pushing his real self down and squashing the elements of his personality and nature that make him who he really is.

For him to be able to present a front of ‘coping’ – he was actually just operating in ‘survival’ mode.

And survival mode is hard slog. It is exhausting, it is mentally draining and it is something that no-one can keep up for extended amounts of time.

I was thinking more about the difference between the two and came up with this:

Imagine that your car breaks down in the middle of the desert and you are hundreds of kilometres from the nearest town. You have a trailer on your car that was filled with a months supply of food and water for you and your friend and all the camping gear and necessities that you will need to last you for weeks. Inside your vehicle, it is equipped with a GPS system and a radio.  So you find out your exact location and use the radio to send out an SOS call.

You reach someone in a town 2 days drive away who tells you that they can’t get someone out to you for at least 3 days due to staff shortages.  This situation is a total inconvenience to you and has thrown a spanner into your holiday plans right at the very beginning of your trip but you instinctively KNOW that you’re going to be ok.

You set up camp, boil the billy for a cup of tea and put your feet up with your friend in front of the blazing campfire and wait.

This is an example of ‘coping’ with an unexpected situation. Annoying – yes – but not the end of the world.

Now……

Imagine that your car breaks down in the middle of the desert and you are hundreds of kilometres from the nearest town. You only have enough supplies on board to last you both until you reach the next town. You have a radio (just like in the earlier scenario) but it isn’t working properly and is unreliable.  You can’t read the map that you brought because it’s written in Spanish and you have absolutely no idea where you are so wouldn’t be able to tell anyone even if you could reach them.

You do a mental inventory on the food and water supplies and work out that if you both eat and drink sparingly that you may be able to make it at least 2 more days. But after that- if you’re not found, things will be touch and go.

You rig up a makeshift tent beside your vehicle by tearing up the skirt that you are wearing and you drain the water from the window wipers just in case. Next you take the car seat covers off and use them to make a flag that you tie to your car aerial with the words “help us please” scrawled in lipstick from your bag and cross your fingers and hope , all the while not letting on how frightened you are to your friend so as to not alarm them.

This situation illustrates ‘survival’ mode.  Frightening, unpredictable and, and seemingly inescapable.

***

Miraculously a convoy of tourists drive past only hours later and you are rescued.

***

Now……In which scenario do you think that you’d be more likely to burst into tears of relief and vent all of your pent-up frustrations and fears onto the rescuer?

Certainly not in the first one because in that one – you were fully equipped with what you needed to get through (much like NT children) and whilst you were pleased to be rescued earlier – you were never all that concerned in the first place. You knew that you were going to be fine because you’d already sent for help and had the necessary coping strategies in place.

But in the second scenario (like our precious ASD kids) it was terrifying. There didn’t look like there was any foreseeable way out. Everything looked hopeless, you felt completely useless and you had to keep your brave face on for the sake of your friend. You were running on pure fear and survival instincts and not much else.

***

Your bottle had been shaken vigorously, the effort that you had to put in JUST TO SURVIVE took every last bit of control from you, your anxiety levels were sky-high and something had to give.

BANG!!!!!!

It’s no wonder my little fizzy pop boy explodes!

Is coffee really the answer?

If you read this blog regularly, you would know that coffee is one incredibly big crutch in my life. It is usually the first thing that I look for upon waking in the morning and something that I crave many MANY times throughout the day.   

Yes….I do believe that I am addicted and I also believe that it’s going to be quite a large hurdle for me to overcome but understanding the “Why” of my excess caffeine consumption may be the key to understanding my somewhat insatiable desire to pump myself full of the toxic liquid daily.

I noticed something very interesting today as I reached for my 5th cup at only 10am.

I realised that there is a very obvious link between emotions and coffee with me.  I guess you could say that it is a similar response to that of emotional eating.

I have been incredibly down for the past few days and spent a couple of hours this morning talking to Mr Patient about it. I sat with him in the sunshine on our front lawn and watched the neighbourhood children riding their scooters and bikes and kicking footballs in the cul-de-sac.

The next-door neighbours were hosting a BBQ (a frequent occurrence that we have NEVER been invited to) and had several cars in their driveway and we could hear the laughter and fun emanating from their backyard.

So….where were our children?

Inside.

With all the blinds closed and the heater on. One was on the laptop. One was on my iPad and the other was on his Nintendo DS. None of them were interested in socialising with the neighbour’s kids and none of them cared to leave the sanctuary of the house.

We realised that we were actually enabling them by allowing this to go on so we made a decision to go and turn all of them off and make them do outside to enjoy the beautiful day that God had given. The tears, tantrums and moaning started and we were told repeatedly that we were “horrible parents” and that we are “SO mean”. Harley even chipped in with “When I grow up and have kids – I’m NEVER going to be THIS awful to them!”.

Cue parental eye rolling.

Part of the conversation that I had with Mr Patient earlier included me asking him what he envisioned weekends would be like when we had a family. His response was surprisingly very similar to what mine was. It included: taking the kids to their various sporting activities, maybe going on picnics, spending it with other families or going for drives to sight see or visit friends.

But of course-our reality is VERY different.

Sure – we could do these things. We COULD arrange something fun every other weekend but we both know that whenever we have ventured out of the “norm” that we pay for it severely over the following days.

Our kids HATE socialising, we don’t have any “family friends” (meaning other families that we socialise with) – they’ve all moved away, and we are not involved in anything that could introduce us to new people therefore allowing for invitations. Sporting events usually end in tears because most ASD kids simply don’t possess the ability to handle losing. We have spent countless hours trying to teach this foreign concept to the boys with limited success because to them – failure is a blemish on their incredibly high self-standards and perfectionistic natures.

Going to church on Sundays is such a major melodrama that it hardly seems worth the hassle and the aftermath of taking our children anywhere different is always so explosive and ridiculously hard that it’s easier to just stay in our little autism bubble and keep to ourselves.

Sounds great right? Just stay home and it will all be fine and dandy?

Well – yes it’s easier on the children and causes less dramas but it’s absolutely KILLING me. I get so depressed when I hear other people recount their weekend activities to other friends and hear about the exciting things that have planned for the upcoming one.

The stories about their adventures and social gatherings that were spontaneously organised.

My weekends are always exactly the same.

Housework. Refereeing sibling arguments, housework, figuring out reasons for meltdowns, housework and trying to keep the peace amongst children that can’t seem to co-exist in the same 4 walls, and you guessed it…more housework.

Surely this isn’t as good as it gets?

Is it?

But back to the caffeine/emotions link.

This afternoon, right after we took the electronics off the children and arranged for us all to go for a walk in the sunshine, and the tears flowed and the anger surfaced – I reached for my favourite coffee mug.

As soon as that hot black strong espresso shot was making it’s way down my throat, I instantly felt the rush of adrenaline that it provided and was ready to tackle the meltdown head on.

I carried Lucas to his bedroom and Harley to his and told them both that crying wasn’t going to fix anything and that I wasn’t going to change my mind. The crying eventually subsided and they dressed themselves (well …kinda!) and as a reward for myself, I went and pushed the button on the coffee machine to deliver another shot of emotional comfort.

I was just about to put it to my lips when I suddenly remembered something that I had read years earlier. It came back to me as clear as a bell and it knocked me for six. The phrase that I had remembered related to the link between emotional eating and weight gain,:

“The worst part about emotional eating is it actually causes your problems to multiply. Eventually, instead of avoiding the issues you’re stuffing down with food, you’ve created another one altogether — weight gain, guilt about eating, worsening health … and then it starts all over again.”

I stopped dead in my tracks as I realised that I was self-medicating with caffeine. And the bigger problems that it creates are: headaches, irritability, heart palpitations, mood swings and dehydration to name just a few.

I didn’t particularly “need” that cup of coffee. Sure-I still love the taste and I do believe that I am very much addicted, but the bigger problem is that I usually just drink it to avoid dealing with what is really upsetting me at the time.

It gives me a rush of control that I desperately crave and takes my mind away from whatever drama is unfolding at the time.

I noticed that I rarely drink it when I’m home alone on Lucas’ pre-school days and I drink the most coffee before and after school and on weekends.

And what is usually the thing that upsets me is the perceived loss of “who I am” and “what I think I need to feel happy”.

The sheer stress of the constant tears, meltdowns, fighting, complaining and rigid/frantically obsessive behaviour that the boys exhibit just makes me want to poke my eyeballs out.

But of course it’s much easier to press the espresso button on the coffee machine than it is to endure the excruciating pain that one would experience with the poking out of ones eyeballs! Not to mention the inconvenience of not being able to actually SEE the melodramas unfolding

Ok….Link recognised and understanding established. I just need to figure out the best way to tackle this one.

.

Oh , who am I kidding! – it’s all too hard…. now -where did I leave that damn coffee mug?…….

The “G” word…

Sometimes, answers can come from the strangest of places. And by strange, I mean from somewhere that you least expected it to.   

Somewhere you’d never have imagined and from someone who you barely even know.

BUT – God works in mysterious ways!

If you click here you will read that this blog was always intended to be a place where I could write about whatever I needed to at any given time NOT just about parenting children with autism.

Of course- it all ties together in the end because autism is so intricately woven into every single part of our lives. But this is not a specifically autism related post per se.

I will start this post off with somewhat of a “warning”.

This post is going to be a deep one. It’s going to be a little long and probably a bit confronting for some people.

It is full of my life story and if you don’t read through until the end, it may seem like a bunch of annoying complaining, but if you do choose to read, you’ll see the awesome self discovery that I’ve made and you might even see your own life in a new light.

Who knows?

Right. That said – I’m going to do a quick flash back to my last post where I admitted that I have been struggling a lot with depression lately.

I ended that post with words to the effect of: Autism is the root issue of everything that’s difficult about my life.

A few hours after I’d published it, a very close friend wrote to me and said that she had just finished reading it and that she didn’t feel that autism really was the reason for all my sadness and pain. She said that she believed that autism was just a small part of the bigger picture but that she didn’t quite know what “the thing” was.

I actually completely agreed with her – but because I was still unable to figure out why on earth I seem to struggle SO much more than other autism mothers (maybe it was just my own skewed perception), I assumed that autism was to blame.   It was something that bothered me endlessly and I needed an answer and that one was the most obvious choice.

Anyway, one of my regular readers and commenters, a lovely woman whom I have never met (but hope to one day) wrote that she thinks that I am still in a period of grief. And as soon as I read that something inside of me shouted YES! That’s it!

I KNEW that there was something in that!

And I don’t believe that it’s all related to my father passing away a couple of short years ago. I found this wonderful passage in a psychology book (of all places) and it was spot on as far as I’m concerned.

“Many assume that grief is associated only with the loss of a loved one.
Psychology shows us that this is very often not the case, but those suffering grief from things other than the death of someone are often told to “snap out of it.”
Grief is, quite simply put, a response to loss.
The loss can be of something tangible or intangible. It helps to recognize that disappointments, abuse, recognizing one’s limitations, illness, losing a job, or so many other things can elicit a grief response.
People suffering a loss need time to grieve, and such time depends upon how important the loss was.”

W-O-W!

YES! That’s me!

Let’s see: In 2 short years, I had 5 major surgeries. Check.

The brain surgery being the biggest at a whopping 13.5 hours long – complete with a collapsed lung and the recommended recovery period from this is 2 YEARS!

I had an undiagnosed/ aggressive/ insomniac autistic 18-month-old child on my hands at home so recovery wasn’t really an option.

9 months after that, I had my corneal transplant then found out I was pregnant with our unplanned “high-risk” baby Lucas. Check.

Consequently, I had a general anaesthetic c-section followed by a tubal ligation and ALL of these took place in the time that I was “supposed” to be recovering from brain surgery.

We had the added stress of our finances being incredibly stretched due to all of the medical bills I’d racked up (You’d think having brain surgery to remove a 5cm tumour would be covered under Medicare wouldn’t you?) And not to mention the exorbitant costs related to the corneal transplant too. Check.

And just after Lucas was born, I had to undergo surgery for the 5th time to get my gall bladder removed. (There were 90 something peppercorn sized stones in my sterile jar if I remember correctly!) Check.

Then my dear Dad was diagnosed with cancer and shortly after I contracted glandular fever and due to not being able to recover properly– my Doctor told me I was borderline chronic fatigue. Lovely!    This possibility scared the wits out of me so emergency procedures were put into place and Mr Patient was forced to take time off work until I was well enough to carry on. Check.

A few months after that, I received a phone call from my Mum asking my sister and me to go home immediately because the Doctors had told her that Dad was on his deathbed.

We rushed home and he died a few short days later. Check.

6 months after losing Dad, we were slugged with Harley’s autism diagnosis and it was about then that I started blaming autism for everything that I hated about my life. Check.

And while we’re talking about grief – there is definitely a grieving process related to the discovery that your child is “different”, (though I do believe that my kids can do whatever it is that they choose to do and that they will do it well!)

I went to a counsellor and she ordered that I be medicated before she’d even attempt to talk to me again. She diagnosed me with “acute clinical depression” (Whatever that means!)

I didn’t see her for very long because it got far too expensive and she was difficult to get appointments with plus I had no-one able to mind 3 small children for me. I did however find another counsellor that I was able to see during school hours and had a wonderful baby sitter for Lucas – but that was also short-lived due to the time constraints and travel involved.

It’s times like THIS that I find having no family to help out really tough. You can only ask friends to help out so many times before you wear out your welcome no matter how many times they say they’re happy to help.

The simple fact here is: I haven’t had time to grieve ANY of these things that have gone on in my life because they have all happened so closely to each other and they have kept compounding and building up and it TOTALLY explains why there always seems to be a pressure cooker ready to explode in my brain!

Now that I know that it is grief that’s holding me back , I can finally stop blaming myself for not coping as well as everybody else.

I can stop wondering “WHY” I suck at things that other people seem to just drift through and I can now actually believe it when my Mum tells me that I’m NOT a basket case & I’m NOT a crappy, disorganized, useless mother – I just have a lot on my plate and I have a lot of grief to work through!

It’s the keeping it real factor that I have been struggling the most with.

I have always found it REALLY difficult to “put on a happy face” when I feel like screaming.

I’ve struggled to “appear” normal for fear of turning people away.

And I honestly physically hurt whenever I tried to be something I’m not. I know my intensity can be scary and my emotional rollercoasters are annoying – but I’m still a work in progress here.

I’m living, learning and growing.

I’m still grieving, but the thing that excites me the most is that I have discovered that I am up to step 4 in the 5 part grieving process of:

Denial

Anger

Bargaining

Depression

and

Acceptance!

 

So guess what?……… I’m almost there!

See you on the other side!

 

And thank GOD that I have God on my side

Write til it’s right.

“Are you a writer?” enquired the elderly lady sitting at the table in the food court beside me today.

image via ... rehendhi.wordpress.com

I giggled “No, not in the professional sense but if you’re asking do I write – then the answer would be yes. I write everyday” I answered.

 “What is it you’re pouring your heart into at the moment if you don’t mind me asking dear” she went on.

“Err, well” I stumbled over my words “Just a whole lot of emotional poetry, a bit of ranting and raving and the odd bit of sense” I said as I smiled at her.

 “Well you certainly look engrossed and that’s the third page you’ve ripped out and screwed up dear so something is obviously bothering you” she said gently.

 “Nothing I can’t handle” I replied and noticed the wheelchair that she sat in for the first time and wondered what her life story was.

“Are you a mother?” she asked.

“Yes, I have three children” I replied wondering what it was that alerted her to this. Lucas was at pre-school today so I was out all alone and I didn’t think I was giving out a “mother” vibe.

“I thought so” she answered. “I can see that you are churned up about something and I know that nothing can break you as much as when one of your children are going through something big”

I was amazed at her perception and smiled and waved as she turned her wheelchair around and bid me farewell and left with the parting words “One day you’ll be able to remember today and marvel at how different life became” and with that, she waved again and drove off into the crowds to continue her shopping.

I sat there for a few minutes trying to process the conversation that I’d just had and wondered what it was that this lady had seen!

***

This morning after school and pre-school drop off, I went up to a local shopping centre and grabbed a coffee to start my day. I walked over to a table and sat down to enjoy it and right at that moment, my brain went into overdrive and I knew that I wasn’t likely to get a break from my swirling thoughts until I wrote them down.

I looked in my handbag and grabbed the pen and notepad that I keep in there and started to write.

It became clear very quickly that the small pocket sized pad wasn’t going to be anywhere near big enough to jot down the tornado that was circling in my head so I went to the dollar shop and grabbed a jumbo pad and started again.

I wrote and wrote and wrote until I started to feel more like me and less like the angry, damaged, hurting soul that seems to have taken up residence in me lately.

I wrote a poem today entitled “The stupid black dog” which was all about the cloud of depression that I have struggled with for years, but after reading it back to myself, I saw that it was WAY too dark to ever put on here!

I don’t want to scare off the 3 of you that actually read my dribble so it’s been filed under “darker days” to never see the light of day again!

And in case you’re wondering…..yes – it helped. A LOT!

Once it was out, my brain could then shift into a different gear and I was once again able to process the little things that threatened to drown me only hours before.

I realised again (and I hate to say it) – but everything comes back to flippin’ autism again.

Everything that I struggle with in my life at the moment, everything that stops our family from doing what we’d like to do, everything that’s changed our hopes and plans for our children  – all comes back to autism.

Everything that prevents my child from being accepted easily, everything that’s related to schoolwork struggles, everything that’s got anything to do with social graces, and everything that keeps me awake at night?

Yep. Autism.

It really is a bugger of a thing.

Sure – there are worse things in life. But this is OUR reality. This is what we live with day in day out and this is what I keep pushing through until I get the same results that “regular” families can achieve without even trying.

And yes – my children WILL achieve great things, they WILL succeed and they WILL be awesome at whatever they choose to do but it’s not gonna come easily for them! That’s just part of the deal.
I know that I am blessed. I know that I have amazing friends and family and I know that I WILL BE OK!

But sometimes……life really majorly stinks.

Oh…and something I’ve learnt lately – get a journal……seriously…..it’s fantastic and the cheapest therapist I’ve found yet!

It all comes back to autism

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

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

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

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

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

Then it happened…….I burst into tears.

image from mitchieville.com

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

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

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

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

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

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

Let me explain:

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

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

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

The reason? …AUTISM.

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

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

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

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

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

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

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

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

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

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

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

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

And do me a favour will you all?

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

Because it’s bound to happen sooner or later!

Sometimes, life sucks.

Losing my Dad just makes everything suck.

I’ll try not to make this a depressing post, but it has really become apparent to me lately that since Dad died…..it has affected so many areas of my and my family’s lives.

Take my beautiful Mum for example.

After she left here last week, she headed a few hours North to stay in her Aunty’s holiday home on the coast. The intention was so that she could relax a bit and treat herself to some much-needed down time in the week between Ella’s birthday and my sister’s little girl’s birthday next week.  And what better way to do that than at a little cottage only a 30 second walk from the ocean…

I have spoken to her a couple of times on the phone and although she has said she is enjoying herself, I can hear the loneliness in her voice. She doesn’t know a soul in this little town and has no contact with any of her friends apart from the occasional phone call. At night, she sits alone in the cottage watching tv and waiting for it to be bedtime.

This is NOT the life I want for her! That’s depressing.

My Dad retired early. He was only about 45 from memory, so he and Mum did EVERYTHING together up until the day he died at 61. And I can honestly say that I have never seen another couple before or since that were as obviously in love as my parents.

For 17 years, they went grocery shopping together, they helped at charities together, they went for long walks together, they strolled down streets holding hands like teenagers, they often used to take weekenders in their camper trailer to little beachside communities and they made regular trips down to visit their 5 grandchildren in the 2 different cities that my sister and I live in. They were a team and they were meant for each other.

I remember in the last few weeks of Dad’s life….how loving, compassionate and caring my Mum was. I never once heard her complain about the continuous tests, scans, and Dr appointments that she faithfully took him to every week.

She was (and still is) a rock to my sister *Gabrielle and I, and she soldiers on and on and on.

**

Like I said…..Dad dying wrecked everything.

Dad used to do most of the driving, so they were able to visit me more frequently. Now Mum has to fly or catch a train because it’s too far to drive alone and I don’t want her to anyway.

Dad was like a pseudo father to Mr Patient because he lost his own Dad (also to cancer) years before. Now, Mr Patient has no-one to talk to or get into mischief with whenever we visit Mum.

Dad shared my taste in music…..Big band, Jazz and soul music. He introduced me to Ella, Benny and Duke. But now I have to enjoy them alone.

I inherited my Dad’s awful sense of humour! We used to laugh at things that no-one else ever did and could never understand why other people didn’t think our jokes were funny?

Like for example: Q: What’s big and white and stands in the corner?

A: A naughty fridge!

I bet most of you rolled your eyes and cringed then. Dad would’ve laughed

And Dad would always make a point of telling me whether on the phone or in person that he thought I was a great mother.

Constantly. It’s like he somehow knew that I really needed to hear it.

He died before we got a diagnosis for Harley and the times that he was telling me this – I was still throwing my hands up in the air in exasperation because I couldn’t work out where I’d gone wrong with Harley and why I couldn’t get through to him on any level!

So to hear “You’re a wonderful Mum Fiona” when I was wondering how on earth I could possibly get through another MINUTE was medicinal and so so healing.

But then he died.

I hate that my beautiful mother is own her own. She’s lost the love of her life and her soul mate. Her travelling companion, her best friend, and her other half.

As much as I know my Mum is always there for me and is a pillar of strength , I am consciously aware that no-one is there for her and don’t want to drain her energy reserves either.

She has no-one to offload to at the end of a hard day. No-one to look after her when she’s unwell and no-one to bounce ideas off.

Every single day it kills me that I can’t live nearer to her nor her to us and this is where the sheer size of Australia is annoying to say the least!

Don’t get me wrong here…..I believe that my Dad is in a better place and that everything happens in God’s time, and often for reasons that we don’t yet understand, but right now, I’m just sad for my Mum and hating that I can’t fix it.

I really don’t understand why this is affecting me so much NOW?

I thought I was coping well (?)

Always remembered…

I am too tired tonight to write the post that’s churning through my too-full brain so I’m going to re-blog this one from last year instead.

I have found Father’s Day this year to be difficult and sad. I thought it might get easier as the years pass, but so far – this hasn’t been the case. We lost my wonderful Dad to cancer four years ago and the world lost a wonderful husband, father,brother and friend. Father’s day will continue to go on regardless and if I have anything to do with it: so will my Dad’s memory.

I am encouraging my children to give Paul a wonderful day today and thinking about how much I can’t wait to get to heaven to have a cuppa with my Dad!

Happy Father’s day to all my wonderful readers. Hope it’s been fabulous.

 

Me about 12 months old with my Daddy x

A Daddy gives his daughter away

Young Love......My Daddy and Mummy engaged.

Miss you Dad…..xxxxx

SHOCKING!!!

So as of last night, I lost my rating in the Mother of the Year nominations. 

Why?

Well, I was in the bathroom calming Harley who was mid-meltdown over the “colour” of the toothpaste!!!!

It was mint green not white!

*rolls eyes*

And whilst I was dealing with this “drama”,  my 4 year old (Lucas) electrocuted himself!

Well, not exactly electrocuted because he is still alive.

But he did manage to give himself such a big electric shock that the force threw him against the wall and he screamed a gut wrenching noise that I’ve never heard before and never particulary want to hear again!

How?

Simple. His bedside lamp.

He has a night light and a dimmer switch on the bedroom light and the past few nights when I have gone into check on him before I go to bed, he has turned them all on and his room lit up like a carnival!

So I removed the bulb.

Ha! (I thought) that’ll fix him!

But it didn’t occur to me to unplug it from the powerpoint or turn it off!!

And last night, he stuck his little fingers RIGHT INTO IT!

And it zapped him!

Mr Patient was away with work so I had to make an executive on-the-spot  decision so I ran his burnt fingers under cold running water for 10 minutes and then put an ice pack on it for an hour or so.

I kept him awake until 9pm so I could “observe” him and when I didn’t notice any problems with him, I assumed that he was fine so I put him to bed.

Of course I had completely removed the lamp from his room by now!

Anyway…..fast forward to this morning when I spoke candidly to a friend at school who is a peadiatric nurse and mentioned to her what had happened last night and how silly I felt.

Her face immediately changed and she told me that she has personally seen cases like that where the child has ended up with the electricity affecting their heart rhythms and she strongly advised me to go and get Lucas’ heart monitored ASAP.

I tried not to panic as I drove to the Medical Clinic ,whilst making up an impromptu social story for him in the car on the way!

As I walked in, my panic turned into annoyance as I noticed the 50 bazillion other people also waiting there to see a Doctor.

(Medical centres are all over the place in Capital cities here, and thanks to Australia’s wonderful Medicare system, they are free and you don’t need an appointment. You can just show up!)

So upon sighting the huge amount of people in the waiting room, I marched straight up to the counter and prepared my “speech” while I waited for the receptionist to serve me.

I told her that my son has autistic disorder and was electocuted last night and because he has limited speech and social deficits, that I was unable to determine the full effect that it had on him.

Her face changed and she marched us straight up to the treatment room past all the waiting hordes and we were seen immediately by a Doctor!!

***

The Doctor was LOVELY!

I was so impressed by his manner.

He has obviously worked with (or has sound knowledge on) kids on the spectrum because he knew EXACTLY how to talk to him!

I am so used to GPs asking my child stupid questions like: “Can you please describe what it felt like when you were zapped”. Or “Can you tell me exactly where it hurts?”

Err, no…..did you not hear me when I told you HE’S AUTISTIC!!!

But instead, this Dr gently placed his hand on Lucas’ right arm and asked him “Does this feel tingly?”

And then pressed lightly on his chest and said to him “This is your chest Lucas”

And Lucas giggled and he continued ” Does it hurt when I press on your chest?”

And Lucas replied : “I touched an ouchy lamp!”

The Dr smiled and said “Yes you did…..that was a dangerous thing to do!….We musn’t touch lamps!”

He then let Lucas hold his stethopscope while he blew up a rubber glove, tied it off and drew a face on it and handed it to him telling him that “Upsy Daisy” would take good care of him!

He listened to his heart, took his pulse and placed a monitor on him.

Long story short…….he was given the all-clear and I was given a kind but firm lecture on child safety and advised to go and buy some safety socket plugs!

I am so thankful that it all ended well but well aware of how much more super-vigialnt I now need to be!

So……has anyone else dropped their ranking in the mother nominations in such a grand way?

I’d love to hear your stories

It's raining, it's pouring, Fiona is bawling.

If you’ve come here today expecting to see a happy, cheerful lighthearted post, leave now. 

Seriously.

You will be disappointed.

***

I’m tired.

We are all tired. Not so much physically but emotionally and mentally.

When you have a child diagnosed with autism, your world changes dramatically.

When you have TWO children with autism, you may as well resign yourself to a bucket load full of heartache.

Nothing will ever be simple again.

Things that should be straightforward are no longer.

Life as you knew it has ended.

I spent some time this afternoon on the phone to my Mum and my pseudo Mum, (Best friend’s Mum) and hung up after both of those calls feeling calm, happy, hopeful and full of healthy anticipation. I was starting to see the brighter side of life.

But then only minutes later – I took another call and received some really really crappy news.

This is separate and on top of  the “incident” that we are dealing with for Harley.

Ugh!

It never rains it POURS in the Madhouse!

Right now, I’m over it.

Completely.

One week into the school year and I’ve had enough already.

I want to hang up my hat.

I’ve prayed that God would send me a tip truck full of grace and dump it in my front yard. We need a helluva lot of it right now!

If you think that I’m being a drama queen, that’s your prerogative. = But you can’t say that I didn’t warn you in the first sentence.

**

Excuse me now while I return to my foetal position and repeat the phrase “It’s ok, God is in control” over and over again until I actually start to believe it!

Over and Out.

Why do I blog?

Whilst I primarily write about life with our autistic children, it is not all that I am.

Me in my "teen angst" years

Just as autism doesn’t define who my kids are….it also doesn’t define my role as a mother, a wife, a daughter and a friend.

As a teenager I wrote a lot of poetry. Most of it is no longer recorded anywhere as I burnt most of it in a ceremonial bonfire not long after I got married.

The memories that they held were just too painful so I wanted them gone.

Doing this is something that I often remember and regret.

(I bet you didn’t know any of this Mum!)

***

I have discovered a lot about myself since I started blogging.

I am able to work through things a lot quicker and more smoothly when I write out my thoughts, emotions and fears.

Someone asked me today why I blog. I thought about it and this poem just came to me.

*****

I write for the freedom of speaking my mind,

Expressing emotions and thoughts,

Uncovering my feelings – once left behind,

Sharing my story of sorts.

.

I’ve never considered the prospect of being,

A slave to the rules of the pen,

I write as I live and I write what I’m seeing,

The way that it happens and when.

.

I don’t care for lying and making up stuff,

It’s seems like a grand waste of time,

The truths that I share here should be just enough,

As the stories I tell are all mine.

.

To be a known writer is not my real goal,

I just need to write for release,

For when I have written my thoughts I feel whole,

And the worries in my head will then cease.

.

I know that when I start to bottle things up,

My emotions take over and then…

I start to lose focus and fire from the cuff,

So I’m sticking with the therapy of the pen…

.

So……Why do YOU blog??

Live and learn

Well as of today, it’s officially one week until the kids go back to school to start their school year.  

Ella is starting year 6 and Harley year 2.

Lucas was going to start Prep but because of the trouble we had toilet training him, we had to hold him back another year.

The good news is….he is now fully trained! (Finally)…YAY!

But he will now do another year of pre-school instead.

This past week has certainly been an eye-opener for me. I’ve discovered a lot about myself and have identified some areas that still need some work.

Like school for example.

It’s been no secret throughout this blog that last year was complete hell for Harley and also the rest of the family as a direct result.

This time last year I was excited about my little boy starting year 1 and he couldn’t wait to see his friends again.

I’d already been in and met his teacher and had a face-to-face meeting with her which I left feeling elated, confident and I was full of a healthy (I thought) anticipation.

But the wheels started to fall off in a big way, only weeks after the school year begun.

The teacher didn’t cope with Harley and he was a complete mystery to her. She was at a loss as to what to do with him he sensed this, and as a result, he quickly spiraled downwards into a sea of uncontrollable emotional outbursts , bad behaviour , mood swings and extreme anxiety.

And that’s a volatile mixture right there!

Home life suffered, I had a breakdown and life sucked enormously.

I went through a very long and damaging period of anger, desperation , blame and I suppose there was some grief thrown in for good measure as well.

(Yes, I am a HIGHLY emotional being ..I’ve been called a drama queen many-a-time!)

Even after the brown stuff hit the fan and Harley ended up being moved into the other yr 1 class away from the daily nightmare that occurred between Harley and this teacher, I still struggled enormously with moving on.

After all – I was the one that had the nightly ritual of calming and placating my terrified little boy.

At the initial meeting with Harley’s teacher at the beginning of the year, I took along with me a small handful of information that loosely related to Harley and how ASD looked on him.

I was sweet, affable, humorous and jovial to the teacher and really wanted her to like ME!

In hindsight, I can see that I was largely unprepared and didn’t give her the tools she needed for helping Harley.

(That said, I’m NOT blaming myself here, because as the year continued on, I got my act together and started to take more and more helpful information in to her and offered a LOT more in the way of advice but she wouldn’t take it on board).

But not this year.

Hell no!

You should SEE what this year’s teacher is going to be given!

I have spent hours, days, weeks and months compiling lists, ideas and hints to make this year run even more smoothly for ALL involved! I have a huge pile of printouts that I still have to decide which ones are the most useful.

I have printed up and laminated another copy of *this* for her and an extra copy for Harley to leave in his bag for any casual teachers that he may have.

I have been reading social stories that are designed for school preparation to him at night and feel like I have done as much as I possibly can to help him transition smoothly this year.

Of course I want this year’s teacher to like me (and it certainly make things easier) but my son and his needs now far outweigh my desire to be accepted.

In reflection, I’ve discovered that my longing to be accepted by the teacher last year stemmed from my own self-doubt and lack of confidence.

I was also still hurting because a lot of the other school mum’s had stopped calling me, stopped inviting me places and basically all fallen away since my misunderstood little boy had become the “naughty kid”.

I was vainly clinging to the possibility of last year’s teacher being “ The One”…

The teacher, who Harley would remember in his adult years as “The One” who believed in him.

“The One” he would tell his own kids about, “The One” who understood him and “The One” who helped him reach his full potential..

But I can now see that I put her on an unachievable pedestal and my expectations were little too high.

I argued in my head that because Harley “deserved” the best that he would automatically receive it.

Not so, Life is just not that simple.

God has recently reminded me that I often fail to come through with the goods but that He forgives me and extends me undeserved grace.

He loves me for who I am – faults and all and knows that because I am human that I will continue to miss the boat and stuff things up! But that won’t affect his forgiveness.

I still have some raw emotion rise in me when I think about the events of last year but I am no longer consumed by guilt, anger, bitterness and grief.

I have been able to get past it and chalked it all up to a learning experience.

And THIS year…I’m going in expecting GREAT things but being a little more realistic.

7 more sleeps….bring it on!

I really am trying my very best….

I started blogging because I struggle daily with raising these beautiful children that God has entrusted me with, and I wanted somewhere that I could journal my thoughts and experiences and have something that I can refer back to occasionally so that I can see just how far we have all come!

But…

I have been very saddened lately and have become quite disillusioned with blogging altogether.

Maybe I take things too personally, maybe I’m reading things into situations that aren’t really there?

Who knows?

I also know that the people that have upset me are unlikely to read this blog post, because (to my knowledge), they don’t even visit my blog but I feel like I have to get this out anyways.

PLEASE NOTE: the wonderful bloggers on my blogroll to the right of this page are NOT part of this, these bloggers are wonderful and helpful and have been nothing short of fantastic to me

***

There are a huge number of blogs written by adults who are on the spectrum whose blogs I read regularly and I really enjoy reading them.

These blogs give me such wonderful and different perspectives, and provide insights into aspergers that I otherwise wouldn’t be able to have-and they might help me to be a better mother to my children.

I comment regularly on a number of these blogs and thank them for their guidance and for providing such a marvellous window into their lives.

Most of my comments either don’t get published by the blog author, get jumped on immediately by other readers who take pleasure in pointing out my mistakes or they come and leave nasty comments on my blog which of course I don’t publish

I simply don’t understand.

What’s with this NT versus aspie mentality that’s so evident in bloggy land?

WHY does it even exist?

I have noticed on a lot of aspie blogs that the commentors are quite often outright nasty to NTs. We are all grouped together in one big pile of “useless” and I don’t get how it’s ok to NT bash so brazenly.

Well….here’s my take on it….

Let’s imagine that I moved alone to a foreign non-English-speaking country (let’s invent one…..Coffeetopia!) with a culture that I didn’t understand at all!

I had no clue about the language that was being spoken, didn’t understand ANY phrases or words, no-one bothered to explain it to me and I felt lost and like I didn’t fit in.

I didn’t understand why people had the rules and regulations that they did over what I considered to be pointless endeavours.

Every morning , I woke up wondering when this was going to get better and when (if ever) I would find someone who I could relate to.

Then one day- an Australian family moves in next door.

They have other Australian friends and relatives in the same town that they happily introduce me to and before I know it……I suddenly feel like I fit in for the first time. I feel accepted.

My new Australian friends help me to feel at peace again.

Suddenly Coffeetopia isn’t so scary anymore, and I have somewhere to escape to, people who “get” me and I can truly be myself.

Of course I’m going to feel an instant attachment to these fellow Aussies and stick close to them.

Now,

Let’s imagine that a native Coffeetopian adopted a child from an English speaking country and although they loved and accepted this child for who they were, they were still completely unable to relate to them and turned to me for help or advice.

Wouldn’t it be not only rude but strange if I turned them away or ridiculed them because “they aren’t one of us” even though they were just trying their absolute hardest to do the best that they could for their child?

Sure…..I’d have a natural preference for the Australians…they are people like me that were the same as me and understood my struggles living in this foreign country…but that shouldn’t mean that when an outsider comes in trying to start a friendship, that I instantly disregard them because they were born Coffeetopian.

***

Through my close friendship with Lisa (the alien hippy) , I have discovered that sometimes, adults with aspergers are carrying around a lot of hurt from their pasts and have more than likely been hurt by other neuro-typicals their entire lives.

I HATE that and my heart breaks for them.

But we are not ALL like that. I promise.

Yes….I know that I am not even close to having it all together. I’m sure that on many occasions, I have written something (innocently) that may have been misunderstood and sometimes, I may have attributed a certain trait to aspergers that is in fact- just a personality trait and not indicative of aspergers at all.

Please know that my intentions are always pure. I’m never poking fun at aspergers.

But you have to remember, that I am an NT island in a sea of aspies here in this house and it’s difficult for me to work out which is which at times.

The “judgemental and ridiculing mother” is such a stereotype that genuine NT mother’s like me are battling to overcome.

I have never claimed to be an authority on aspergers or autism and I have no formal qualifications in this field , but I do try 100% to do what’s best for my children and family.

I’m sorry if I have offended anyone, that is certainly not my intention but I needed to get this out.

It has crossed my mind a number of times recently that my own family may one day take a similar attitude to me and treat me with contempt because I am “one of them”.

I’m believing that God will step in this will not happen as I continue to nurture my family the best way that I know how.

1-2-3 Meltdown!

We had a massive meltdown in our house this afternoon.

*BANG*

There was screaming, crying, foot stamping, loud sobbing and emotional ranting.

And it didn’t come from any of my children!

No, it was me.

That’s right,

I c-o-m-p-l-e-t-e-l-y  lost it!

I have got far too much on my plate right now and way too much happening at once.

***

I made an 11-year-old girl cry at school this afternoon. I was devastated.

She is having her birthday party on Saturday morning and has invited Ella…and I double booked.

Ugh.

We are having an early Christmas lunch with Mr Patient’s Mum at the exact same time because she is flying interstate the following day and it’s not something that I can (or want to) cancel.

The poor beautiful darling burst into tears when I told her that Ella could come over in the morning for a few hours but that she would have to miss the party….

DOUBLE UGH!

I felt dreadful…

My friend had tears in her eyes as well as she watched her daughter break her heart.

I felt like SUCH a cad

***

In other news, I went into Harley’s classroom to help with Christmas craft today…..it was fun but- oh my…..Harley doesn’t cope well with me in there!

He played up a lot and he and Lucas were quite mischievous together.

I watched him display all the signs of over-stimulation and his proprioceptive dysfunction was as plain as daylight to me but that’s only because I know what to look for.

He couldn’t sit still, he was flipping all over the class room and was unable to follow simple directions-all signs of a child at the end of his emotional rope.

But Kudos to him for his acting skills! He managed to fool everyone else!

*SIGH*

***

Tomorrow Harley has his class Christmas concert and class party.

I’m still undecided whether or not to send him.  He is more than exhausted and has those tell-tale dark circles underneath his eyes.

He has been stumbling around the house this afternoon in a stupor moaning and weeping softly, the poor soul is so tired from keeping it all together for so long and it’s taken it’s toll on him.

Lucas is a wreck too. He is lying on the floor at the moment staring vacantly at the ceiling and flapping his hands rhythmically in a desperate attempt to self-regulate.

It makes me sad, angry and annoyed that the boys don’t display this behaviour at school.

I totally ‘get’ that they are high-functioning and know when to “keep it together” but this is just flippin’ ridiculous!

I wish the teachers could see this.

Hmmmm…..maybe I’ll video them!

I’m also keeping Ella home tomorrow for a reason that I am not going to elaborate on any further but lets just say that my feelings for the school are part of this and I’m thinking that I might take Harley out after his concert.

***

Two more days.

Deep breaths,

Exhale…….

In print…

I’ve spent the day today writing down my thoughts,
And all my gripes in a very long letter,
I wanted to send it but I know that I can’t,
Because it’ll makes things worse not better
.
I always try to be the best that I can,
As a friend, as a person, and a mother,
But unfortunately , I’ve been misunderstood,
And misjudged and maligned by another
.
It really got me down and I had decided that,
This was the end of all my daily blogging,
I was shutting back down and locking my feelings up,
My character had taken quite a flogging
.
But to my lovely friend, I cannot thank you enough,
For believing in me and talking me through this pain,
It is because of your prayers and your caring gift of love,
That has pulled me up and freed me once again
.
I know I’m not always such a pleasant and nice girl,
I take some things to heart and get real mad!
The way that I’ve been made is to de-fend all my kids,
And my heart breaks up when any of them are sad
.
If they really looked inside me and seached beyond my words,
They’d see that all my motives are pure,
I don’t intend to hurt people and make them feel so bad,
I can help it if others are insecure.
.
So I wrote a heavy poem and I filed it under “hurts”
And vowed that it is never seeing light,
The release I felt from writing it was just the trick for me,
And it will now help me sleep right through the night
.
I’m going to end by saying that I hope that they can see,
That this is all really silly stuff,
I’ve done my best to be God’s child and love my fellow man,
And they might not but HE thinks that’s enough.

****************************************************

My ratbag boys!

I wrote this a few weeks ago when my 2 mischevious little boys decided to climb over our front gate.

The fence is about 2 metres high (about 6.5 feet) and they had to climb onto the wheelie bin (outdoor trash can that’s about 4 feet high) to reach it.

Pretty impressive for a 4 year old I think. But like most boys – they will do anything of another boy dares them to!

 

 

Oh me Oh my,

Oh please! Oh why?

I’m feeling rather tense

.

My boys were found

Not making a sound while

Climbing over our front fence.

.

They jumped the gate,

I was too late,

To stop them falling down

.

On the other side,

They tried to hide

From the neighbour’s angry hound.

.

They’ve never learned

That awkward squirms,

Could promptly seal their fate

.

So across the road

To our humble abode,

They ran towards our gate!

.

Their mischief thwarted,

Their mission aborted,

And scared out of their heads

.

They came inside

All hyped and wired

Claiming they were “almost dead”

.

So they went and played,

Being LOTS more staid

They fiddled with their toys

.

I smiled instead,

I knew in my head

That boys will ALWAYS be boys

*****

 

I doubt that they will attempt that fence climbing escapade again anytime soon!

 

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And yes…….they DID escape the dog but only to taunt him again from the safe side of the fence!!!