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

Thankful

I can clearly remember the first time that it really hit me that I am a parent.  And I’m not talking about the moment I saw two red lines on the home pregnancy test, or the moment when the Dr confirmed my pregnancy or even the first time that I looked into my new daughter’s eyes 3 hours after the most pain I’ve experienced to date.

I’m talking about the moment when the reality hit me that I was no longer “Daddy’s Little Girl” or “Mummy’s Princess” but a grown up who now had to be the one who would be looked up to instead of the one doing the looking up.

And I’ve gotta tell you, it scared the absolute crap out of me.

As a child I remember running into my parent’s bed in the middle of thunderstorms and being comforted just by sensing them near me. And I recall many times when I got lost at the shops momentarily until my parents sought me out. I even remember my Dad sitting on the edge of my bed and praying that fear would leave me as I shook because I was so frightened of the dark. He turned the toilet light on that night and it stayed on for many years afterwards.

But when that day comes that you realise that YOU are now the go-to person when a child is seeking comfort, it can be both touching and overwhelming at the same time. My kids look to me with admiration and total trust and rely on me to be their safe place, I am the one that they run to when the sky is lit up with lightening and the house feels like it’s shaking from the thunder. My bed is where they end up snuggling into me, and I am the one who goes into bat for them every time that a situation starts to escalate and become beyond their control.

It’s a lot of pressure and at times can be frustrating, tiring and really damn annoying. But I have come to realise that I am extremely and totally blessed beyond belief.

I get to be a safe place. 

And that’s a blessing that a lot of people will never know. So I’m definitely not complaining.

~~

I have gone back and forth over whether or not to add my 2 cents worth to the shooting tragedy in Newtown Connecticut a couple of days ago and almost decided not to write anything in case it appeared that I am trying to score hits on my blog by doing so. And I don’t want to use something so horrific to attract traffic here; which is why I am not going to add any tags containing those words.

What I am about to write is for you guys; the faithful readers who already know me and know that it’s not my heart to benefit from things like this.

~~

Two of my children are in the age group of the children who were massacred so it was really close to home for me. I have done a lot of thinking since the shootings occurred and my heart is aching for those families who have just experienced more tragedy than any other human being should have to bear: The loss of a child.

They will never get to be their child’s safe place ever again. They won’t feel the warmth of a small child snuggling into them seeking protection and they would give ANYTHING to be able to hold their baby in their arms one more time. And there are many other families who are also affected because their child was one of the “lucky” ones who got away. These babies have been exposed to things that no human being should ever have to witness in their lifetime.

I have written a lot about how hard I find parenting on this blog. I have written about the good times, the shocking times and almost everything in between. But from now on – even when I’m in the heart of one of the worst moments imaginable – I vow to remain acutely aware that I am blessed just because I get to be called “Mum”.

I’m not weighing in on arguments about gun laws, mental health issues or the concept of taking God out of schools in America (as has been in the media constantly over the past few days). There are many other bloggers far more qualified than me who are already writing about the bigger issues.

But as a Mummy blogger I am going to say that I am going to remember that no matter how frightening and overwhelming this whole “being a parent” thing can get – I will make the choice to be thankful.

• Thankful that I can hold my babies close.
• Thankful that I can be a safe place even at 3 o’clock in the morning,
• Thankful for life.

For me – I’ve come to realise how sad it is that it has taken something so tragic for me to recognise how blessed I am.

I will continue to pray for the families who have lost everything.

I really  wish that I could do more.

Dear Friend, Neil says it much better than me.

 I had a post all ready to go tonight but it has taken a back seat for now because one of my best friends lost her Dad this morning and I have no idea how to make it all better.

Dear Friend,

You and I have only been friends a reasonably short time but we have shared so much, have loads in common and become quite close, It feels like we’ve known each other for years.

And I hate the fact that we now have another thing in common.

I hate that there are no words. No words that I could speak that would lessen the pain. There is nothing I could do that would ease the ache in your heart and I want to take away the fog that has probably started to descend on you right now.  I hate that fog. It’s overwhelming, all-consuming and like a tonne of bricks has been heaped onto your shoulders.

I pray for the enveloping peace of God to cover you and your family now. That you would allow Him to take that burden from you.

There is so much to organise, to plan and to deal with and friend, I want you to know that I am here. I am here when you want to scream, when you want to cry or even if you just want to sit in silence.

I am still here even if you want to shut down and hibernate for a while: But please know that doesn’t mean I will stop checking on you. I will watch you closely but only because I care.

I promise not to be one of those friends that says “Call me if you need anything” as a flippant throw away line with good intentions, because let’s face it: You won’t call. No one ever does.  We all hate to have to ask for help. It’s how we are. Instead, I will bless you un-expectantly because you deserve to be looked after.

I also promise not to avoid you like so many people do out of fear of causing offence.  To steal a line from another close friend: I come with an apology: I may not always say the right things, I probably won’t always have the right words and I often put my foot in my mouth but I won’t carry on as though there in an elephant in the room that nobody wants to mention.

And in the words of one of my favourite songwriters Neil Finn in Distant Sun:

I don’t pretend to know what you want

But I offer love…..

Love Me x

Different NOT less.

This poem was inspired by a number of things that have transpired here lately. Firstly by Eustacia Grandin Cutler who is Dr. Temple Grandin’s mother who coined the phrase “Different not less”. She wanted the world to know that her daughter is remarkable but my no means any less of a masterpiece just because her thoughts and ideas are sometimes a little left of centre.

Another inspiration for this poem comes from sitting down at night and talking to Harley about his day and hearing the pain in his voice as he is starting to realise that he is different to his peers.

He has had a lot of “down” moments lately and it has been coming out in his behaviours at home.

No-one else is privy to this hurting side of him and that’s one of the downsides to being high-functioning I guess. He is able to recognise that he is an anomaly and is trying his darndest to change that and I’m so mega proud of my boy but sometimes feel like I’m standing on the sidelines watching a traumatic event take place before my very eyes and all I can do is stand anchored to the ground with my arms ties to my side unable to do anything to help him.

Sometimes I want to run away,

And leave it all behind,

I’m tired of the exhaustion, want

To quit the daily grind

.

The tiny things that make me see,

The hugeness of this task,

Of raising special children is,

A really montstrous ask.

.

It’s not the normal Mummy things,

That make me want to yell,

I can do the meals, the baths, the chores,

And manage very well.

.

The dressing kids and sorting fights,

And homework battles too,

I get that every other Mum,

Feels like she runs a zoo!

.

No, it’s not the things that we ALL do,

That make my tears begin,

And threaten to undo my cool,

and break my heart within.

.

It’s seeing how the simplest things,

Can totally undo,

My child because he cannot tell,

Me what he’s needing to.

.

When he erupts if he can’t cope,

I sense his physical pain,

I see the torment in his eyes,

And watch him thrash again.

.

He wants to be like all his friends,

He wants to blend right in,

He knows he’s different and that hurts,

His feelings through and through.

.

My mother’s heart just breaks apart,

When he tries to adjust,

To sit in crowds, with noise and lights,

And try to look non-plussed.

.

The things that others take for granted,

Really causes me stress,

I want the world to realise that,

He’s different but NOT less.

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.

King David rocks!

 Things have been rough here lately. I won’t bore you with the details but the basics are: Harley has been a NIGHTMARE, some plans that I thought were going to come to pass never eventuated and my children have been at constant loggerheads for WEEKS now!

I sat down in the sunshine this morning with a pen in my hand and my journal so I could write it all out. I just wanted to purge myself of these depressive emotions and helpless thoughts..

I was chatting to my Mum on the phone afterwards and she commented and how similar my words were to that of David’s Psalm 13 in the bible.

I giggled as I told her that I had just finished writing a poem and I read some of it out to her on he phone.

But mine is definitely more of a 2011 version and more specific to my current issues. The main similarity is that I too have been asking God why on earth he is not answering my questions and why he seems to be hiding from me!

…….

Is it meant to be this flippin’ hard ,

I need to catch a break

The constant strife and sibling wars,

Are more than I can take!

.

Poor Ella says she’s had enough,

And really wants to leave,

I know exactly how she feels,

I’d also like a reprieve.

.

Just simple tasks like getting dressed,

Result in big explosions,

Of tears and kicks and hits and cries,

And un-controlled emotions.

.

Each day I swear it’s getting worse,

My patience is wearing thin,

Does it really improve? Or is that just a joke?

Will we EVER start to win?

.

I thought by now we’d start to see,

Improvement NOT back-sliding,

So why do I feel like I need to go,

Retreat back into hiding?

.

We’ve got the cards of visual clues,

Stuck up on every surface,

But still we fight and tempers flare,

Do we honestly deserve this?

.

What will it take for them to see,

They’re tearing me apart?

Every stupid whinge and silly fight,

Stabs right into my heart.

.

I KNOW that God has said he won’t

Forsake or leave my side,

But I cannot seem to find him here,

Maybe he’s hidden beneath my pride?

.

He also promised that there is,

A great plan for my life,

His will isn’t for me to be just another,

Exhausted mother and wife.

.

So even though it hurts so much,

I’ll choose to seek His face,

And look to Him and his guiding light,

Until I complete this race.

.

.

Psalm 13

    For the director of music. A psalm of David.

 ¹ How long, LORD? Will you forget me forever? 
   How long will you hide your face from me? 
² How long must I wrestle with my thoughts 
   and day after day have sorrow in my heart? 
   How long will my enemy triumph over me?

 ³ Look on me and answer, LORD my God. 
   Give light to my eyes, or I will sleep in death, 
⁴ and my enemy will say, “I have overcome him,” 
   and my foes will rejoice when I fall.

 ⁵ But I trust in your unfailing love; 
   my heart rejoices in your salvation. 
⁶ I will sing the LORD’s praise, 
   for he has been good to me.

The response we never knew.

I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.

I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.

But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.

Daddy was very concerned

For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have  Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.

This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?

The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.

***

The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.

Slumped in Mummy's arms. A familiar pose.

After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.

There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.

Otherwise known as: Survival mode.

He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.

I had no choice but to trust God and pray that he would be healed!

And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.

He certainly gave us all a fright!

Since he has been back home – he is smiling again, registering faces and even talking a bit.

He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.

There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.

Thank you

God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.

Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.

*sigh* JUST what we need – another sick child!

At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.

Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.

I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.

Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.

*Sigh*

If only Harley wasn’t a fighter.

Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.

I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.

Please get well soon Harley. We want our beautiful, affectionate charming little man back.

The Posse on the hill

I’d be willing to bet that they didn’t think I would actually do it I – but I am always up for a challenge and this one is relatively easy for me.

For those of you wondering what on earth I am banging on about – let me explain:

A lovely group of Mums up at the kid’s school were chatting with me this afternoon about my blog. One of them jokingly asked me to write a post about all of them.

I smirked to myself because what they didn’t know was that I had already half written a post in my head after one of the ladies made a comment that had triggered a train of thought for me anyway!

She had said that often they called out “Hi” to me but noted that I rarely responded, but she knew that it was because I am completely deaf in one ear and assumed that I probably didn’t hear her.

And that is true and I’m really grateful that she has been giving me the benefit of the doubt, but it’s actually a lot more than that as well. I actually don’t even notice them either.

You see, most afternoons as I walk into school to collect Harley, my brain is usually caught somewhere between vague and tormented. I rarely look up because my eyes are fixed on Lucas who is known for his absconding and it’s the time of day that I am trying to prepare for the afternoon onslaught of emotional outbursts that are bound to occur.

I guess you could say that I am mentally psyching myself up.

As I walk, I go over the routine in my head so that when we arrive home, things will run as smoothly as possible. I know that Harley needs to wind down from keeping it together all day so I need to make sure everything is ready for his return.

Before I leave for school in the afternoons, I have his crashing corner (complete with cushions, bean bags and pillows) set up so he can get his sensory input so that I don’t become the punching bag, the kicking post and the sounding board.

I have afternoon tea already laid out because another trigger for him is to not know what he will be eating. It exacerbates his anxiety and really is a very easily solved problem.

I have dinner planned and written down on the whiteboard so he knows what to expect and I have his homework all ready to do on his desk.

The things that inevitably throw the order out of whack are little things like sibling rivalry, unexpected phone calls, and rain. He LOVES the rain but it sends him into a trance like state where he is rendered useless when it comes to concentrating or obeying commands!

So, each afternoon as I make my way to the school gate, I mentally tick things off one by one in the checklist in my head and brace myself for my little tornado to be released!

There is another scenario at play here as well.

This one is a little bit harder for me to write about. But you know what?….I think I’m finally ready! It’s more of a personal journey that I have been slogging away at for almost 4 years now and it started way back when Harley began school.

Other autism mother’s will surely agree with me that there is a part of you that is forever changed once that diagnosis is thrust upon your child. It’s like the protective parent gene that we all possess but magnified by about 10,000. It’s kinda hard to explain, but it’s a sense of taking that diagnosis on yourself as well.

It’s been written many times that when one member of a family is diagnosed with autism – the whole family is also. Because it isn’t like a broken leg or a case of the chicken pox – both of those things will eventually end, it is a life-long thing that doesn’t just affect one small part of your child’s life.

It affects EVERY part of their lives.

Triad of impairments which simply put are: difficulties with behaviour, socialising and communicating cover every area of a child’s development and is what all the spectrum have in common.

For me personally, Harley’s diagnosis was like I suddenly took on board all of Harley’s issues, emotions and pain like it was actually ME that was diagnosed. I felt every eye staring at me everywhere that I went, I felt incredibly judged and scrutinised and I was afraid to get close to anyone for fear of either myself or a member of my family getting hurt.

I suppose in hindsight that I can admit that I withdrew from people because it was just all.too.hard.

I was jealous of all the mother’s with their “perfect little NT kids” and I felt ostracised, alone and jaded. I kept my distance for a long time because it was like I had forgotten how to socialise. I no longer had anything in common with anybody and I just couldn’t cope with life.

Cue the nervous breakdown that I had last year when things became far too overwhelming and the elephant in the room that everybody refused to speak about just became bigger and bigger.

This should help to explain my seemingly odd, aloof and reclusive behaviour of late!

Then very gradually things started to look up. I joined an online support group for parents of children on the spectrum and I met a whole bunch of parents struggling with the same daily issues, walking on the same narrow and unpopulated trails and they were able to speak wisdom and love into me again. They “got” me!

They didn’t judge, they understood the heartbreak, the gut-wrenching pain and celebrated the small things with me.

Then I started blogging. I met hundreds of people in every corner of the globe who were also fighting the same fights but with different systems, wrestling with the same teeny tiny gripes and able to offer support and friendship to someone who so desperately needed to be accepted.

God met me where I was at and lifted me out of the pit and eventually, I was able to breathe again without my lungs filling up with disappointment, grief and regret.

I still have a lot of really off days, and I know that it will continue to be a challenge, but I guess it’s time to be out and proud: – I AM THE MOTHER OF 2 CHILDREN WITH AUTISM AND I LOVE MY LIFE!!!!!

And as for you gorgeous posse on the hill – I will train myself to look up, smile, wave and call out “Hi” back.

It’s never been anything personal. I just needed to find the sunshine again

The letter.

How can something so “good” bring out such heavy emotions in me?

Isn’t this wonderful news? Just what we wanted to hear? Shouldn’t I be dancing on tables and buying the next round of drinks?

Well, maybe once upon a time I would have.

For those that are lost by these random statements- let me explain.

I’m talking about a letter. THE letter.

The letter that we received in the post yesterday that I left sealed sitting on the kitchen bench because I was too afraid to open it. The letter that Mr Patient forced me to open this morning and find out what information it held.

It is the letter holding the results of Lucas’ Kindergarten interview that we attended last week. I slowly opened it with shaky hands and tears at the back of my eyes threatening to spill out.

I read the first line slowly.

Dear Mr and Mrs Patient……

We are very pleased to be able to offer Lucas a place in Kindergarten next year commencing Term 1, 2012.

My heart sank and the tears escaped.  I couldn’t stop them.

I was partly thrilled that my little boy was accepted but a bigger part of me is still battling the disappointment that moving up to my hometown is looking less likely now.

We had discussed the possibility of me moving there and Mr Patient staying here and coming up on the weekends if we were unsuccessful at getting Lucas into the same school as his siblings. But now that he’s in, that’s not really on the cards anymore. There’s no need to go.

Ok, I confess. I got excited at the prospect of moving and I kinda got my heart set on it right from the very first time that the idea was mentioned.  My Mum, my best friend and countless other friends live there and the kids love the place and know it well. The laid back lifestyle that I grew up in and the idea of everything being no more than 5 minutes drive away was so exciting to me.

I had already dreamed up images in my head of where we were going to live, what school they would attend and how much easier life in general would be with help only a simple phone call away. I would no longer have to drag three kids to every Dr appointment, therapy and meeting. I would have people who could help me.

But the wheels started to fall off when we did the maths and added up the costs of Mr Patient flying home every weekend and it was becoming clear that this wasn’t going to happen.

The way things are at the moment – Mr Patient leaves before the children are awake in the mornings and is often home long after they go to bed at night.  He doesn’t have any idea what we do every day , he knows nothing about any of their therapies and interventions and this morning – he was unable to even tell me the names of his children’s teachers at school.

His excessive travelling means that I virtually do it all alone ANYWAY so moving wouldn’t cause the kids to see any less of him……

But now Lucas is accepted, my dreams are shattered AGAIN!

I need to get my head around the fact that we are staying put. I need to accept that short of a miracle, I will continue to do this alone. And I need to learn to rejoice in this.

Three kids.

Two with autism who require more than I can give.

One mother who is throwing herself onto God more than she ever has before.

Either that or have another nervous breakdown.

Head….meet sand. 

So….What exactly is a meltdown?

Dictionary.com defines a meltdown as: a disastrous collapse or breakdown.  

Put simply – meltdowns occur when a child is put in a situation they cannot deal with mentally, and they cannot escape that situation, so they fall apart.

Recently I was asked that exact question: What exactly is a meltdown?

So after explaining a typical Harley meltdown and emphasizing that no two children are ever going to be the same autistic or not, I decided to ask around and find out how other parents experienced meltdowns and what happens when their child becomes overloaded.

It could be something as simple and benign as a background noise that they are unable to block out like the rest of us can, maybe a smell coming from an unknown source, they are too hot or cold, they are frightened, they don’t understand what’s going on around them, they are overwhelmed both emotionally and sensory wise, there are crowds nearby, perhaps a change in routine, or maybe they are just frustrated.

These are only a handful of possible reasons and sometimes, there is no obvious trigger at all.

There are also times when it seems like my child is just being a brat because I cannot see ANYTHING that could likely have set him off, but I always tend to work backwards and think back to “before” this meltdown occurred to find important clues.

Sometimes it is just a tantrum, but mostly, it’s not.

It is important to know the difference between a tantrum and a meltdown. If you see a child older than 4 having a massive screaming fit in a supermarket or another public place – chances are the mother is dealing with a lot more than just a bratty child. Older children rarely have public displays of displeasure to this magnitude. They might whine, moan or complain loudly, they might kick trolley wheels or shelves to get their point across that they’re not happy, but they don’t throw themselves on the floor screaming and become inconsolable. They have the embarrassment factor on their side.  Autistic children often don’t.

Another indicator for me is how quickly my child can be distracted or even if they can be. A tantrum can often be dealt with by issuing a stern warning or consequence or giving in to the child’s requests. An autistic meltdown doesn’t respond to any of these things because the child is not in control of their actions and is often unaware that they are being socially inappropriate.

But, not all children respond verbally or physically when they aren’t coping – There are three main ways in which autistic children melt down.

Firstly, there is the FIGHT response (aggression, physically lashing out, becoming verbally abusive), then the FLIGHT response (escaping the scene, hiding or sometimes just emotionally and mentally “shutting down” until the event is over) and lastly, the FRIGHT response. (Think “stage fright”).

Sometimes they can experience a combination of responses and sometimes they can respond differently to how they did the last time a similar situation occurred. There are so many variants that affect the result and once again – EVERY child is different.

For example: I have written before of how very different my two boys are even though they both share the same diagnosis. One is a fighter and one is a flighter. But there have been times that Harley (our typical FIGHTER), experiences a FLIGHT or a FRIGHT reaction. It depends on so many different things.

As I wrote at the beginning of this post, I asked a few friends what a meltdown is to them.

One friend said: “My son exhibits deafening screaming, uncontrollable thrashing and a complete lack of awareness that he is even doing it. And then the shock, horror and disappointment that he feels when he finally calms down is heartbreaking to see”.

Agreed!

Harley is JUST like this. He thrashes, he kicks, he screams, he bites, he slaps and he throws- It’s like he’s having an out-of-body experience because he is completely unable to control his actions when he’s this pent-up. It can actually be quite frightening to watch. Anything or anyone is his way is fair game as far as he is concerned.

Another friend said: “The complete lack of empathy that my child has towards the person he has harmed during his meltdown is rough”.

Personally we experience more of this “lack of empathy” than the disappointment that my first friend described. But once again, it’s different for every child.

A different mother wrote: “My son screams, thrashes, kicks and punches over and over and over again. The repetition is monotonous and there is no reasoning in sight. He also doesn’t notice the victim and when he’s at his worst – he head butts and bites himself.” She then wrote that this is heartbreaking and I absolutely agree with her.

She also noted that the triggers can be really obscure and bizarre things too. Like lights reflecting on a floor or shadows chasing him.

YUP- I’ve known Harley to lose it because the colours of his socks and jocks don’t match!

The last friend that responded to this question said that a meltdown in her house begins with loss of reason and understanding. It can start small and build gradually or go from 0-60 in a heartbeat.  Her child is usually triggered by sensory overload (mine too) or being tired or confused. It can take the form of screaming, hitting, kicking or crying.

Lastly she wrote something that REALLY struck a chord with me…..she wrote:

The meltdown affects EVERYONE around us.

So very true. The child doesn’t realise but when they lose it…..we are all instantly a part of it. Because when you have a child diagnosed with autism. The whole entire family also receives that diagnosis.

Meltdowns are funny things…Because both of my boys have the “high-functioning” brand of autism, they are a little more able to display “normal” (I hate that word) behaviour in public because they know what is expected of them but the wheels fall off when they come home to their safe environment. This is where the meltdowns really get into full swing and the family get to experience true autism at it’s ugliest.

It’s the reason that a lot of my friends, acquaintances and colleagues are surprised when I explain that my latest bruise is due to another one of Harley’s meltdowns because all they ever see is the well-behaved, good mannered, quietly spoken little boy who he really is. They just don’t get to see the overloaded, not-coping, anxiety ridden boy that also lurks in there! Nope…..he saves that JUST for us

Occasionally, he will explode in public if he’s had a bad day.  For him – being at school is like a pressure cooker. The steam has to escape SOMETIME!

I have written a lot about the fight response here because that’s the one I know best. It’s the most in-your-face response and what we live with 24/7, but the other two are just as debilitating for the child and their parents.

The fright response can cause families a lot of grief because their child is in a constant state of panic. They seem to have more anxiety related sicknesses, have a lot more fear of every day things and are often difficult to teach coping techniques to.

And the flight response can be damaging too. For example: My daughter is a “Flighter”. When she’s not coping, she goes into her bedroom, climbs under her bed covers and reads a book.

Sure, it’s great not to be verbally and physically abused but she runs the very serious risk of flying under the radar while I deal with Harley’s more obvious issues!

Sometimes, she just develops a blank, expressionless face and it’s a case of “The lights are on but there’s no-one home”! This can be just as dangerous for both her AND us because she is often almost impossible to reach and she bottles things up inside of herself until it starts to fester away at her making her ill and even more confused.

I can’t say that I have the answers here. Because I don’t!   But what I have learned, is that you can’t negotiate with a meltdown.

Because: The reason that your child is melting down is because they can’t compromise and the situation is completely out of their control.

It’s all about learning to read your child, and always trying to be one step ahead of them at all times so that you can try to predict situations and outcomes before they reach crisis point. Then as they get older, we need to teach THEM to do this for themselves.

And it’s also important to teach those that teach THEM. Because once you are satisfied that your child is at least partially understood, they will sense your ease and be less likely to allow situations to frighten them.

And then, they will feel more in control and when they feel in control – anxieties and fears are allayed.

Of course, we will NEVER be able to foresee EVERYTHING that happens because life’s like that!

You never know what you’re gonna get!

Confessions of a helicopter parent.

According to Urban Dictionary:  A Helicopter Parent is a parent who hovers over their child, is controlling and extremely over-protective.

Well yes, I guess that term is very fitting when applied to a parent who is unwilling to cut the apron strings from their typically developing child and let them discover life on their own BUT, in my opinion…..this term should not EVER be applied to parents of children with special needs.

For most of us – it is definitely NOT a choice but instead – a necessity.

I would LOVE to be able to just drop my child off at school in the mornings and go about my business but you see….this is a pipe dream for me. I don’t hover because I don’t trust the teaching staff or the school…..I hover for MY SON’S sake…..NOT mine.

And that  my friends, is where I believe the difference lies.

When God blessed the parents of spectrum kids with these children, he also gave us enough grace to deal with the massive responsibilities that come as part of the autism package.

The simple fact is that with autism spectrum disorders- part of the diagnostic criteria is that the child has impairments in socialising, communicating and has restrictive or repetitive behaviours.

 

And in essence, what that means is that throwing your child in the deep end and letting them dog paddle their way through is not only stupid but very very cruel!

***

I have a very emotional story to tell now and I need all of my autism mother friends to wrap their virtual arms around my shoulder as I write because I’m particularly fragile this morning.

Ok?

Thanks..

I sent Harley to school today with both of his hands bandaged up because he has let his anxiety overwhelm him again.

He has licked, sucked and literally chewed his knuckles again until they bled. They are red raw, weeping, bleeding and really majorly gross to look at. He is in dreadful pain and was whimpering as I gently bathed and dressed his wounds this morning and it broke my heart to see him like this.

He looks like a little teddy bear with his paws all wrapped up and as a result, is unable to perform simple tasks like cleaning his teeth and getting dressed unassisted.

I went up to school just before recess to drop off his blazer that he had forgotten and signed in and went down to his classroom to change the dressings on his hands.

The beautiful office ladies would have done this for me but I knew that Harley wouldn’t have responded well to someone else touching his sore hands so I opted to go in myself. (yes, that’s right…..hover, hover, hover).

He was SO excited to see me and Lucas. He ran over to us giving us both HUGE cuddles and announced loudly that his Mummy was here and telling all his friends how much he loves me! (I developed a speck of dust in my eye as you could imagine!)

I hugged him back, took him aside and re-dressed his hands and helped him to get his blazer on. He went back to his desk and sat down and arranged his books in front of himself proudly.

I told him that it was time for me to leave now and that Mummy would see him in a few short hours. He nodded and said his goodbyes to us.

I walked over to the teacher to say goodbye and she started chatting with me about the great progress that she’s noticed in him lately and I beamed with pride.

All the while, Lucas was tugging on my leg so eventually I followed his pointed finger with my eyes and then I saw it.

Harley was leaning forward with his head down, staring at his work. He had his pencil awkwardly grasped in his bandaged hand with tears streaming down his little face. He was TRYING SO DARN HARD to be brave but the tears kept flowing. I watched him wipe some of them away with his little white paw and I could tell how much strength this required on his part.

I walked over to him, crouched down and put my arm around his shoulder and asked him what was wrong.

“I can’t do what everyone else does Mummy” he answered.

“What do you mean honey?” I replied.

“I can’t even hold my pencil, I can’t read and I can’t stinkin write, I’m so stupid” he sobbed.

“YOU ARE NOT STUPID” I practically yelled, LIVID that my boy’s anxiety was consuming him and I started to wonder if coming into the classroom was such a good idea after all.

His gorgeous teacher stepped in and assured me that she would look after him so I thanked her and gradually made my exit once I knew he was ok.

I DO trust that his teacher can deal with this. I DO trust that she has only his best interests at heart but I want everyone reading this to know:

My kid ALSO needs me.

Call me whatever you want. A helicopter parent, a smother mother, a freak, WHATEVER, but when my child is in this much pain just from a task as simple as “being” in a classroom full of kids who can naturally do all the things that he struggles with….. I will not back down and leave him to his own devices.

It’s not a simple case of parental separation anxiety here.

I am not trying to control the school, the teachers or the environment.

I just want to parent my child responsibly and effectively and for ASD kids – that means hovering, asking questions, making requests and sometimes….being a pain in the butt.

I WON’T apologise for being my child’s biggest and loudest advocate. I do not want to look back in five, ten, fifteen or twenty years time full of regret that I didn’t do more to help him navigate this frightening and overwhelming world that we live in.

And I will ALWAYS be the parent that you see waiting patiently by the classroom door to “have a quick chat” with his teacher.

I don’t want to know if he aced his spelling test, or ate his sandwich or got all his sight words correct….I couldn’t care less about these things…..I just want to know if my little boy managed to simply survive!

So if you’ll now please excuse me ….this helicopter needs to go and re-fuel – tank is getting empty : )

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

A mother exposed.

 

To my dear precious Ella, Harley and Lucas, 

Mummy is so very sorry.

I’m sorry I lost my temper at you all today.

I’m sorry I made some of you cry.

I wish I had held my tongue more and pulled back on my anger a lot more than I did.

But I want you to know that Mummy is trying really hard to not ever do that again.

Silly Mummy has been forgetting to take her “calm” tablets.

I hate that I have to be on these stinking tablets and I hate that whenever I think I’m coping well enough to stop taking them – life seems to come up and bite me in the butt and I discover the hard way that I’m not yet ready to go it alone.

Ugh!

Since you kids were born, Mummy has had a lot of surgery and a lot of trauma in her life and although God helps me to cope, I still have a lot of emotional grief to wade through.

Also, there has been so much go on in the past week that has caused Mummy to be sad and angry because I hate seeing any one of you hurting or being mistreated.

But that’s no excuse-Mummy still shouldn’t have gotten so mad.

I am now filled with peace and joy because the situation that has been troubling me all week has not only been worked out, but it has had a better outcome than I could have possibly have imagined!

You all know that Mummy is a very emotional person. I have been reading this great book so that I can let God work with me on this.

Thank you all for your cuddles and kisses when I told you I was sorry.

Thank you Ella for cooking dinner for us all and asking me every-2-minutes if I was ok…

Thank you Harley for your t-shirt hem that you used to wipe Mummy’s tears away when she spilled them onto your leg and for your gentle whispered little prayers and back rubs.

And thank you Lucas for offering me your smelly favourite lambie and blankie and for stroking my face.

You are all amazing treasures.

Each and every one of you are heaven-sent blessings.

I can’t believe how fortunate I am to be given the privilege of raising you all and I promise that I will do my very best to input wonderful and important truths into you all.

I will always try my very best to give you all the tools you need to get through life.

One of the most important tools is forgiveness.

Clearly you have all mastered that!

I can’t promise to be perfect. But I can promise to love you all unconditionally and forever.

God will continue to help me to be the best Mum I can be.

And I know that you all know that.

Love,

Mummy xxx

 

 

 

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??

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.

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

Feelings

I wish that I could understand,

there’s so much I don’t get,

I read, I search, I ask, I look

But still, I stay perplexed.

.

Why do you think that what you say

Will make me see your view?

I try to stand there in your shoes,

But still, I’ve not a clue

.

I think that sometimes, you can see

That I am so frustrated,

And even though you try to help,

Your aid seems overrated.

.

“Just leave me be” is what you say

And I’m supposed to know,

That this just means that you just can’t talk,

Not that you wish I’d go

.

For now I think that I’ll just wait,

I know you’ll come ‘round soon,

But until then forgive me please,

If I act like a loon

.

You see, it’s also hard for me

I struggle to see your way,

Because for me things like stress and pain

Are easy for me to display,

.

I know you have a heart of gold,

And do the best you can,

That’s why I want the world to know

I truly LOVE this man,

.

When will the day come that you feel,

Able to let me near

I’ll be here waiting every day,

Because ….I love you Dear…….X

.

Yes……Even men struggle with having children with aspergers……particularly those that see so much of themselves in their children.

Looking through the hole in the fence.

In about 5 weeks, I will be turning 35 which I know surprises people who meet me because I know that I look a heck of a lot older than that.

I think there are several reasons for this:

Firstly, Mr Patient is 10 years older than me and often people marry someone within 5 yrs of their own age (though having said that,I know several who have broken that rule!) and when Mr Patient and I are seen together, it’s easy to assume that we are closer in age than we really are.

Another contributing factor as to why my face and body have age dramatically (I believe), is due to the 4 major surgeries that it endured over only 3 years, the passing of my dad after a very short batte with cancer and the autism diagnosis of my 2 boys coupled with the daily grind of raising 3 children.

There was a long and draining bout of glandular fever (mono) and an unexpected pregnancy both thrown in there for good measure as well!

Coping with aging earlier than usual was something that took a lot of time (and therapy) to deal with.

Mr Patient has always said all the right things – bless him – and my children tell me that I’m beautiful all the time, but when you look in the mirror and see the mass of grey hairs peeking through and the facial palsy dragging one side of your face downwards – you tend to forget all of that.

My school friends reading this will probably be surprised to know that I went home and cried my heart out after the reunion after noticing how much kinder time has been to them than me.

I sometimes get cranky when I think about the direction that life has taken me in and the road that I am travelling on and I have been known to sigh with regret at all the “unfulfilled dreams”.

Like: Travel. I have never ventured further than New Zealand which is an absolutely gorgeous and stunning country but it’s not unlike Australia, and until a few years ago…. – I had never EVER even been over the border to the state of Victoria AT ALL!!

(Mr Patient surprised me by flying me to Melbourne  for our 10th wedding anniversary a few years back).

Another dream I gave up was music.

I studied compostion at school but never followed that field. I had too much self doubt and let my insecurities override common sense. *sigh*

But after reading all of this: please don’t misunderstand my point.

I don’t write any of this in an attempt to extract sympathy or whine about the hand that life has dealt me.

No, actually, I have mostly gotten to the point (and I write mostly as I’m only about 70% of the way there) where I am able to see the bigger picture and let all the stupid vanities and regrets fade into the background where they belong. Sometimes this “bigger picture” is further in the distance than I would like it to be but mostly, I can see what God has got in store for me.

My dear old dad used to tell me a beautiful analogy that I have remembered for years as it is so apt:

Imagine that there is a big fancy circus that had come to town and today, they were having a street parade to show off all the acts.

Imagine also, that you badly wanted to see this parade but there is a big wooden fence between you and the parade.

And the only way for you to see this parade is by looking through a small peep hole in this fence.

You see the clowns, the monkeys, the elephants and the acrobats but you only see glimpses of all of them and you never see the parade as a whole.

You don’t see where it begins and where it ends. You are only viewing this parade in pieces and none of them seem to make any sense.

Imagine now, that God is in a helicopter “above” this parade and he is seeing the whole entire thing, and he is also orchestrating it all and know exactly when it’s going to end, where it’s headed and what is going to happen along the way.

And life’s exactly like that.

We are only viewing our circumstances and lives through the tiny peephole that we have.

We are only seeing the animals excrement, and the clown who misses his step and the acrobat with the torn clothing because when you only focus on one small part of things- it’s much easier to nitpick and find fault and only see the helplessness of things. When you aren’t seeing the “bigger picture”, you are often unable to view life in a positive light.

My favourite bible verse has been the same one for many many years. And that is Jeremiah 29:11

“For I know the plans I have for you says the Lord. Plans to prosper you and not harm you and to give you a future and a hope……..”

And I’m starting to understand what exactly I am here for and what my purpose is in life.

And that is:  To work with other families in crisis.

This is not going to happen tomorrow, next week or even next year – I still have little children to raise myself first and I definitely don’t have all the answers!

But slowly, I am realising that I was never meant to have it easy, how could I ever be someone who could reach out to others in need if my life was always peachy perfect?

Who would seriously want to pour out their heart to someone who had no personal understanding of grief, hardships or pain?

I’m finally understanding that God really does work all things out for good.

So I’m going to take my 30 something looking body and embrace this life that I’m destined to live.

But I am aware that it may even get harder and harder as time goes on, and the challenges may increase ten fold but like anything worth waiting for: it will only be reached one step at a time.

Getting back on the horse

Well…..I seriously didn’t realise how run-down I’d let myself get.

I have a sore jaw from constantly grinding my teeth and my face hurts. Literally.

Since the brain surgery, I get a dull ache behind the entire right side of my face from my eye to my chin that extends to my scar down behind my right ear.
It throbs and pulsates and I lose balance and my vision blurs.
The neuro-surgeon told me that too much caffeine or alcohol, not enough sleep and too much stress will cause this to happen for the rest of my life due to the extensive nerve damage that the surgery caused ,but silly me lets it get dire before I actually do anything about it. I keep hoping that it will just magically disappear without me resting.

I also find it quite amusing that he tells me not to allow too much stress into my life.

Yeah right- autism and 3 kids…….how exactly does one avoid stress?

I have had this relentless throbbing for 5 days straight this week due to all the stress of what’s going on concerning my son at school.
I think I did a pretty good job of concealing it whilst we had visitors from overseas yesterday. We shall see!
I know that these are the signs that tell me that I need to seriously slow down and relax but I get so caught up in “getting everything done” that I (like all mothers) put myself last and think that if I ignore it, it will all go away.

Anyone that’s close to me will attest that I am very much an ostrich in stressful situations. ie: I stick my head in the sand and hope it passes.

But when you have autistic children relying on you to run a structured, routined and calm home, it’s so much more difficult to run away. And the drama that is going on with H at the moment is not something that will magically disappear or resolve itself in a hurry, it’s something that I know I need to be proactive in and do whatever it takes to make it right - I need to stand up to people and I need to be heard as difficult as that is for me.

It is far too exhausting for words! I’m too tired to fight anymore - I’m stamping my foot like a 2 year old and whining “It’s too hard”

I just want to keep him home from school and shelter him and tell him that everything’s going to be ok.

But I know I can’t.

I simply don’t think that I can handle any more after school meltdowns and temper fits. I’m tired of being punched, yelled at and blamed.  I know he isn’t really upset with me and that he is just taking his frustration out on the ones he loves the most and feels safest with but that’s not a lot of comfort when you’re nursing a bruised knee or a crushed spirit.

I promised myself that this wasn’t going to become a whiny, whingy, “woe is me” post but this is what’s in my heart and it’s where I am.

Autism is horrid in so many ways but so is the big bad world that we make them live in.

I’m so thankful that my beautiful mum is coming to stay on Thursday. She will be a very welcome guest and a great distraction to this last few weeks of drama.

She always prays with and for me and uplifts my spirit and speaks positive and encouraging words over me and the children. She is such a wonderful blessing. The kids adore her and she adores them.

She understands my children’s autism and “differences” and passes no judgements. She steps in when she knows I’m in overload.

She is always one step ahead of me and does things for us before I’ve even noticed that they need doing.

I think for the next few days, I’m going to focus all my thoughts on counting down to Thursday…….and then I will get back on the horse.

Promise.

Look out for my new post tomorrow that will have absolutely no traces of whinging, moaning or sadness