Silent chaotic prayer 

I am just so angry.
Where are you God? I know you won’t leave me, but right now, I cannot find you.
This hurt that is inside me is all-consuming. It’s overwhelming and frightening.

I struggle to join coherent thoughts together and the idea of completing simple everyday tasks seems so much more than I can possibly handle right now.

I wonder aloud whether there is more to life? There has to be. Surely this isn’t the best that life has got to offer? And I if this is in fact it- I want out.

Why aren’t you fixing this mess?

My mind is starting to go places that I know I should stop it from going. It’s been poking into dark corners that should be avoided and meanders it’s way along deadly paths and tracks that are all one way streets.

There is no coming back from some of these thoughts, but at the moment, it is what it is.

I’m so angry I can barely breathe some days.

Why have you let me get so low? Why aren’t you changing anything?

My current state of mind is a veritable quagmire of pain mixed with emotions that have no escape. They swirl around in my head and spin madly creating a series of out-of-control tornadoes that have the power to take me out in one foul swoop, and the energy that I expend trying to push them back under the surface is nothing short of exhausting.

Why aren’t you bringing the break I so badly need? Surely I deserve better than this?

Trying to keep this stupid mask glued to my face that presents a coping facade to the public and fool them into believing that every thing in my world is peachey is a task that requires enormous self-control and frankly: I no longer seem to have that in me anymore. My emotions torment me daily.

Where are you hiding from me?

These emotions hover on the edges of my sanity provoking me and passively aggressively eating away at my peace until I explode in a spectacular display of insanely refractory behaviour that paints me into a corner where I sit and rock as I try to wrap my head around what the hell is happening around me.

I am through pretending. When is this going to end?

Where is my escape?

Maybe I really have lost the plot once and for all. Maybe the end of my rope is the end of my life as well?
You know what? I don’t even care anymore. I’m done caring.

I know that YOU care, well at least I thought you did.

I am all out, I’ve got nothing.
Jesus: I need you.  More than air.


Psalm 10:17
You, Lord, hear the desire of the afflicted;
you encourage them, and you listen to their cry.

 

 

 

 

 

Waving the white flag

white flagI’ve been pretty terrible at blogging this year. My heart just hasn’t been in it and I hate that almost everything that I have to write about is either negative or has a negative slant on it. I always told myself that I wasn’t going to become a ‘woe-is-me’ blogger but guess what? The life that we are currently living is hard. In fact, it is really damn hard and I am struggling to keep positive and optimistic with all that’s going on. Which is most of the reason that I’ve stayed away from the keyboard.

Paul admitted to me last week that he is half expecting to come home from work one day to find me gone and the children left to explain my absence. He has watched them gradually wear me down but instead of helping me – he steps back because HE can’t frickin’ cope either.

He’s not far off the mark to be honest, I have felt like leaving many times but would never do that to my children. As crazy as they have been driving me lately – they are still my world.

One thing is definite though – I need a damn holiday away from the aggression, the anger, the defiance, the disobedience and well, pretty much everything else as well. Term three has only got one week left and the kids are more than ready for the 2 week holiday break, but I am not even close to ready to have them home all by myself.

But I will survive because I have to. I simply do not have any other option.

But do you know what probably gets me the most? The fact that I have poured almost 6 years into researching, reading about, practising and implementing strategies and techniques to help my boys with things that they struggle with due to their autism but still, STILL I feel like I know absolutely nothing!

Every time I start a new unit on my course – I am reminded that there is still so much about autism that I do not yet know. It is vastly overwhelming and my head is swimming with information overload and I lack the ability to apply the head knowledge that I have to the appropriate situation(s). I feel as though we are operating in survival mode and treading water (once again).

I feel like one of those high-rise building window washers. I stand perched on the rickety scaffolding outside other people’s window ledges on the wrong side of the glass. I peer longingly into their lives through their dirty windows but all I can see is how perfect everything appears though the pane that I am cleaning with my own hard work -hard work that is rarely ever appreciated. I notice what these other people have, how they live and I feel lonely and overwhelmed by how far my family is from what everyone else seems to have. I am not jealous, but I am very aware that I am just looking in from the outside. I don’t fit in these kinds of worlds. I don’t belong in these scenarios.

I know that as I stand here balancing on the edge – I am not wearing a harness and that all I would have to do is take just one step backwards to end this pain once and for all.

But I also know that I am stronger than that. I remind myself that

 “The reason we struggle with insecurities is because we are comparing our own behind-the-scenes with everyone else’s highlight reels” Ps. Steven Furtick

But even remembering that, I am aware that right now – things are beyond tough in this house.

Frankly – I’m tired of being told that “all parenting is hard”. Yes! Yes it is. I have never denied that nor have I implied that it’s not! But I react badly inside when I hear that phrase because what I’m hearing is: “Stop complaining – you’re not the only one who has challenges with your kids”.

But what people seem to forget (or not even realise) is that we are doing exactly what every other parent is doing AND THEN SOME. I’m so over hearing the words ‘boundaries, rules, expectations, challenges’, and other words that imply that our boys are so out of control because we are crappy parents who have dropped the ball. Don’t people think we’ve already tried all those things? Do people just assume that my kids are left to their own devices all the time and now we are reaping the benefits of that kind of neglect?

I mean seriously?

I sat in the foyer of church this morning with Paul crying because I feel that no one, NO ONE gets it. I am tired of people telling me “chin up” or “you’re a great mother” when they haven’t had to walk in our shoes or live in our house.  Autism can be a nasty bitch and trying to explain it to someone who doesn’t live with it is akin to describing childbirth to a man. All you can tell him is “it hurts like hell but it’s worth it in the end”. Details and specifics are left unsaid because it would make him uncomfortable and it’s frankly disturbing. As sure as a man can empathise with you and a friend with your situation – they will never fully GET IT!

I have tried everything that I can think of to help my boys to manage their emotions, conquer their anxieties and overcome their behavioural difficulties, but sometimes – nothing works and you have to wave the white flag in surrender.

Well, I’m waving it madly these days but I am also using it to dry my tears and blow my nose. Not only have I taken off my “everything’s peachy” mask today, I have thrown it angrily on the ground, stomped on it and thrown it repeatedly at a brick wall.

I sit here typing admitting that I am exhausted. Mentally, physically and especially emotionally. I am tired. I am sleep-deprived and I am worn out from dancing the stupid autism dance. I don’t know all the steps and I have no frickin’ rhythm anyway.

I am angry that we are continually knocked back for any sort of respite and wondering day to day just how we are going to make it out alive. It’s one thing for people to tell me “you need a break” but it’s another thing entirely for that to actually happen.

Right now, my marriage is held together with Band-Aids that have been there so long that they’ve lost their adhesive properties and are just barely keeping us together. They no longer cover the ugly wounds or the scars – they aren’t really any use to us at all. To be truthful -I just don’t know if we are going to make it or not.

I didn’t write this to extract sympathy, to beg for help or to paint a nasty or critical description of autism, but to be 100% truthful and own the fact that right now – I am no help to anyone. (Which is also why I have decided to turn comments off on this particular post).

But through all this pain, this hurt, this exhaustion and this anger at injustice – one thing remains….and that is the faithfulness of my God who keeps me in the midst of the constant storms.

There is a story in the bible in Exodus 17 about Moses. When his hands were raised – the enemy was defeated but when they were lowered – the enemy triumphed. Moses became battle weary and unable to continue to hold up his hands but through the support of his friends Hur and Aaron who held up his hands until the battle was won, he got to witness Israel prevail.

And I believe that my friends who are praying into my situation and for my family are holding my hands up for me until the battle is over. Because from where I sit – this autism parenting gig is only getting harder and harder.

Deeper

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

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

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

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

I’m struggling with the bigger things too.

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

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

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

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

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

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

Like this:

Hurting head and aching heart,

Needing some reprieve,

Wanting guidance,

Desiring peace,

But don’t know where to start.

.

I close my eyes and lay my head,

Down on my folded arms,

Wanting rest,

Desiring release,

From all those things you said.

.

As days unfold and choices come,

I don’t know which ways up,

Wanting love,

Desiring grace,

Before I come undone.

.

Then night fall comes and brings with it,

More pain and hopelessness,

Wanting answers,

Desiring truth,

I can’t take another hit.

20121123-222717.jpg

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Split Personalities

It was raining, it was chilly and it was dark out. It was almost 7pm and we were absolutely starving, but all the restaurants in the little town we were staying in were closed on Wednesday nights. We had no means of cooking our own meal in our little villa and we had considered driving to the next town.

But then we found a strange little place that was clearly having an identity crisis. This place served both Thai and Mexican food which was the strangest combination we had ever heard of together. The two completely different cuisines made no sense together whatsoever.

Amused, we walked in and the cowbell chimes on the door should have been our first clue to run far away and never look back. Well, that and the fact that there was only 1 other couple eating there. But we were hungry and desperate.

We sat down and the (what looked like) 12 yr old waitress took our order. We giggled as we looked around the room and noticed the Thai silk scarves hanging on windows with bejeweled sombreros hung haphazardly next to them.

And the hessian wall hanging of a cactus below a shelf proudly displaying a Buddha statue.

Bamboo makeshift blinds with the Mexican flag painted on it covered a bay window that housed a shrine of Thai goddesses and paraphernalia.

Everywhere you looked there were oddly juxtaposed items on display all brightly lit up with coloured fairy lights draped over every other possible surface.

Tacky doesn’t even come close to describing it but somehow somehow it worked.

We decided that it should be renamed the “Split Personality” restaurant.

I often feel as though I have split personalities myself. I have my mother personality, my wife personality and my Fiona one.
They are all coming from the same inner well but they are all incredibly different. Of course they all overlap at some points and they’re all part of who I am but I still haven’t figured out how to make them all work as one. I haven’t worked out which one should take precedence because the mother one always seems to overtake the rest.

And having this week away from the children and the demands of my everyday life has illuminated some things about me that I have been burying and refusing to deal with for a very long time.

Paul and I spent a lot of time apart during our week “together”. And that may seem strange to some people but we both recognised that we needed it as much as we needed our couple time. We know that we are unlike other couples and that we can’t do the whole 24/7 thing that others can. It doesn’t work for us.

And I really needed to be alone.

I needed to not be needed. It’s as simple as that.

Sometimes I feel like Paul and the children are each pulling one of my arms or legs like a rag doll that is being pulled in four different directions and instead of working through this I find myself withdrawing and becoming more and more resentful toward all of them. My mother and wife personalities have left no room for my Fiona one to shine.

I’ve had a lot of anger rise up this week that I hadn’t expected to see. Things I thought I’d dealt with popped up and threatened to drown me. I prayed about it and God showed me a few home truths about myself that were tough to see but necessary to confront.

This week, I’ve picked fights with Paul unnecessarily because I placed high expectations on him and got angry when he didn’t react the way I wanted him to. I’ve accused him of not loving me and sulked and cried my way through.

He hasn’t argued back with me once to his credit and has stayed firm and strong.

Last night, it was our last night away and I sat down in front of the fire in our cozy little villa in my husband’s arms and cried and cried. I told myself that I was hurting because of something someone had said to me that I felt was borderline nasty, but I knew that it was more than that. I knew deep down that it was because of guilt.

Because the incredibly selfish part of me didn’t really want to go back to my life the next day. I didn’t want to be the Mum anymore. I cried because Paul desperately missed the kid’s and I didn’t. I mean-what kind of mother says that? What kind of mother doesn’t pine for her kids when she’s been separated from them for a whole week?

And Paul answered me: A mentally, physically and emotionally drained one.

He reassured me that it’s not the children that I’m not missing but more the dramas, the upsets, the hard work and the constant noise that I don’t miss instead.
And he’s absolutely right.

I am writing this in the car on the iPad and right now we are 3 hours in on our 7 hour drive and I’m already feeling the excitement stir at seeing my treasures again.
Paul is Right!….He is sensible, methodical, precise and firm – all the things I’m not.

And just like that kooky little restaurant ….we may be a strange mix who look weird to everyone else, but somehow somehow we work.

And for that I am thankful.

I want it back.

I love this photograph. It is framed and displayed in a special place in our home.

It was taken back in April 1998 at my parent’s house. We had just announced our engagement and we had the whole world at our feet.

The photo makes me smile because it shows Paul’s discomfort in having his photograph taken and his stiffness and forced smile for the camera.  Right after this was taken he picked me up and swung me around but this is a side of him that he rarely shows to the world lest they judge his childlike character. But that’s what I fell in love with 🙂

In this photo I am clearly besotted and blissfully happy. The photo represents so many different things to me: It represents true young love with no strings attached. It represents the beginning of a brand new chapter and it represents ignorant bliss.

I remember going to pre-marital counseling with the Pastor before we walked down the aisle and being asked the ‘hard’ questions.

 

  • Like: What would happen if one of us were injured therefore requiring the other to become a full-time carer?

 

  • How would we handle it if it turned out that we were unable to have children?

 

  • Would our marriage survive having a disabled child or would we allow it to take a toll on our union?

It’s almost funny to remember those questions now because they were almost prophetic. Paul did have to become my carer for a while after the brain surgery and as you all know, although I refuse to see my children as ‘disabled’ we definitely fit neatly into the category of  ‘parents with special needs children’.

And here’s where the blog post takes a slight turn away from the direction you’re probably all expecting it to…. Because whilst our marriage isn’t exactly on the rocks: having children with higher than average needs has certainly taken its toll on our union.

We are ok but neither of us is bursting with enthusiasm or over-the-top mushy love right now. We are just ok. I often think back to those early days sitting on the Pastor’s couch listening to him talk about those possible scenarios and I remember thinking ‘that will never be us. We will always be this strong.’

But despite this feeling I had of being bulletproof, (and if I were being completely truthful with myself) : if someone had have told us back then that we would have two children on the autistic spectrum, it probably would have shattered me.

And please don’t get me wrong here:  I’m not saying that if I had the choice that I would have opted not to have my boys because that is 100% untrue. My feelings on this are NOT related to not wanting to have “different” children but instead more of a reflection on my lack of faith in my own parenting skills and capabilities

I didn’t think I had it in me to pull this off.

But that’s why we are not shown everything that our futures hold too soon. God knows that we can only handle so much and that’s why things unfold gradually and He strengthens us, as we need it.

There has been a lot of water under the bridge since that photo was taken. This photo below shows something more accurate. These days we are exhausted and spent.

Autism has gripped us with fear at times and taken huge chunks of our motivation and drive with it. We are both exhausted mentally, physically and emotionally.

And that’s why we have decided to go away and have a break. A recharge, a change of scenery and some much needed child-free together time.

My beautiful Mum has agreed to have the children for seven whole nights and we really do know how incredibly fortunate we are to have this opportunity. I know that there are so many other families that also desperately need a break too but are unable for several reasons to make it happen.

To all of my single mother friends – you guys are incredible. To all my friends with partners who are always away – you have my prayers too, to my mother friends who have to work outside the home for whatever reason – I take my hat off to you and your massive sacrifices and as much as I feel bad that I do have a chance to go away and recouperate and many of you don’t – I  have to take this break because I know that we can’t continue to go on this way.

We are going to an undisclosed location so that we can really escape. We can’t wait to go out to eat without a social story in place. To browse around markets and shopping centres without having to have a set time limit and to have leisurely strolls just.because.we.can.

To be able to sleep through the night without a child wandering in at ridiculous hours and to do whatever the hell we want whenever the hell we want to.

Bliss.

We are going to the wonderful place in the screen shot below:

But I’m not revealing the location or actual time that we are going away until after we return home again in a attempt to protect my family.

I promise to write all about it on our return and I pray that you all have a fabulous week.

Love Fiona xx

Cockroaches and Butterflies.

This is a canvas that my very talented sister painted for Ella's room. It's hanging proudly above her bed 🙂

Four years ago, our daughter Ella had a wonderful teacher when she was in grade 2. Ella clicked with her and learned some really valuable life lessons that she still carries with her. Every day this teacher would encourage the children to engage one another with an exercise called “Butterflies and Cockroaches”.

The idea behind it was that every member of the class would go around in a circle and ask one another to talk about their butterfly (good thing that happened that day) and their cockroach (yucky thing that happened).

The rule was that they were to tell their cockroach first so that they could finish on a positive note.

When Ella came home and told us about this – we decided that we liked it so much that we started to use the idea at our family meal table every evening. It was a great way for us to have quality conversation together and to involve the kids in a socialising activity without them realising that they were actually learning. It also had the added bonus of taking their minds off their food and onto the game so they would eat without complaint!

It was funny at first because Lucas didn’t understand the concept and would just rattle off any thing that came into his head and they were rarely “good things” or “bad things” they were statements like : “Elmo has a fish called Dorothy” or “Bust my boilers” (thanks Thomas and friends!)

We would all giggle and try to explain the rules to him again but he just couldn’t grasp it.

There were nights where Harley would say that he had no butterflies because his life completely sucked but that he had 100’s of cockroaches – so we had to put a limit on them because he was turning it into a whinge and whine session!  But because we were allowing the kids to talk about their “cockroaches”, we weren’t teaching them that they have to bottle up all their sadness and struggles and that’s it’s ok to talk about them – we just had to reiterate that it’s not good to zoom in on them and let them cloud everything else.  They soon learned  that it’s far more beneficial to focus on the positive in the long run.

The kids also gradually learned about turn taking, about enquiring after another person’s day and about listening to other people talking even if it was boring to them. They learned patience, self-control and empathy.

It taught me (the eternal pessimist) to take my eyes off my complaints and to focus on the good things in my life and to learn to be grateful for what I DO have instead of focussing on what I don’t. I personally got a lot out of this simple exercise and can’t really remember when we stopped doing this or even why we did?

But guess what?…. We started it again last night and the table was filled with laughter, with joy, with love and with understanding.  Harley was able to articulate what it was that had been upsetting him all afternoon and had caused him to have a meltdown after school.

Lucas blew us away when he correctly identified his butterfly and cockroach and made us giggle when he announced dramatically that my cooking was his cockroach that night! But I have been simply amazed at the peace that this brought to our family last night. The love, understanding and family unity was fantastic. And just from something as small as taking the time to be with and cherish each other.

I have spent today trying to come up with the best answer for the butterfly question that I can. I want it to be a good one.

So….What is your butterfly and cockroach today?

How to lose 3 days of your life…..

I couldn’t be bothered writing a whole post today so I am re-posting this one from this time last year…..I needed a laugh today and this provided it  😀

My husband makes me laugh.  
Sometimes the ‘roll-my-eyes-and-giggle’ kind of laugh, but mostly the ‘laugh-out-loud-I-can’t-believe-you-just-said-that’ laugh!

He is all about “time management” and is constantly showing me ways that I can “improve” and “better achieve my goals” and as a result of this: he is also very familiar with my response of “pfft” and “whatever”.

He likes to run our house like a business meeting and expects me to take minutes. He tells me that there will be a test later so I’d better listen up. He tries to tell me that he is joking (of course) but I believe that a LOT of truth is said in jest 😉

The “business plan” gets run past me every couple of months and I’m expected to present my own personal goal plans and expected outcomes for the children for that quarter so we can compare notes. (I am yet to provide one!)

His ‘plan’ is usually complete with graphs, timelines and records. EVERYTHING has to be kept on record for future reference.

But what I find so amusing about all of this is the fact that he married me!

He could not have chosen a less organised, lackadaisical, fly by the seat of her pants wife if he tried!

Maybe that’s where the secret of our success lies? – I would be driven crazy by someone as slap happy as me and he wouldn’t cope if he had to share control!

His outlook on simple everyday run-of-the-mill tasks is really quite unique.

For example:

He has informed me that I will waste the total of three days of my life if I tear the sachets of sugar that I put in my coffee individually. But if I tear them both together , then the world will be at peace for another day because the extra three days I have then saved, can be put to good use by doing something more economical??.

And , there was a time recently when I moved our kitchen bin from beside the bench to beside the fridge because it looked much neater and was hidden from sight.

The next morning I found it moved back with this note attached as an explanation :

Dear Fiona,

Thank you for your attempt at making the kitchen more aesthetically pleasing to the eye, however, I calculated that with the bin being moved to that location, it would take me an extra five paces to utilise the bin as it is further from where it used to abide beside the kitchen bench.

This is completely unacceptable for the following reasons:

1. There is too greater possibility of garbage seepage and spillage finding it’s way onto the floor during the extra five paces whilst in transit from the bench to the bin.

Bin juice is no-one’s friend.

2. I will waste an hour and half of every year by completing five extra paces every time I wish to use the bin if I use it on average of four times per day.

Those extra twenty paces multiplied by thirty years, equals approximately a day and a half of the rest of my life being wasted  every time I wish to deposit wasteful products into said garbage receptacle.

3. It is a known fact that garbage bins do no belong beside refrigerators.

4.The bin has ALWAYS been beside the bench for the last seven years, nine months and sixteen days that we have resided in this house and I simply cannot allow this atrocity to continue another day.

5. It doesn’t look right.

Thanking you in advance for your assistance in this matter.

Mr Patient……..

Yes, he is serious.

If I didn’t laugh, I’d cry!

Da da da dum!

This weekend Ella and I are flying up to my hometown for the wedding of my (almost sister) *Rebecca.

I’m SO excited !!!!

I have known Rebecca her entire life and her big sister is my BFF *Hannah who I regularly write about on here 🙂

She was one of the 5 of us kids (me and my sister and the 3 of them) who grew up in each other’s houses sharing our parents and everything that we owned. I’m absolutely thrilled that she found such a wonderful man to marry and can’t wait to be a part of their special day on this coming Saturday.

I’m still sad that it didn’t work out for my whole family to attend, but  Ella and I are looking forward to it all the same.

Here is a photo of the bride to be:

And here are a few teaser photos of what Ella and I are wearing 🙂

I will upload some more after the fact 🙂

* Not her real name…..

I’m just venting…..

I know I promised a post about the 8 hours I spent on a train with my ex-high school English teacher, and it’s coming I promise. But today, I have something more pressing on my mind.

Respite.

Or the disgusting lack thereof.

I am going to be flexing my sarcasm muscles a lot throughout this post…so be warned!

Yesterday, I received a call from the social worker that was part of the multiple disciplinary team that assessed and diagnosed Lucas a couple of short weeks ago.

You may remember me writing that we left there with the promise that help was on it’s way…..well it turns out that apparently, having 2 children diagnosed with autism, no family near us and a husband who is away a LOT with work…..isn’t considered desperate enough circumstances to warrant being considered for respite.

This is now the 3rd ” no” we have received.

The social worker though….was gorgeous. She told me that she was personally appalled that we were knocked back again because as far as she could tell, we met and exceeded the necessary criteria.

Pfft, I say.

I asked her why and she said that the reason she was given was that it is because we don’t have a “case manager”.

I asked her how we go about getting one of these and she said it wasn’t something that was easy to get.
She told me that one was assigned to families deemed worthy of receiving one.

Which we are not.

So the fact that I had another nervous breakdown last year because there was far too much stress in my life counts for zip obviously.

I’d like to see one of these bigwigs who call the shots survive a WEEK doing what I do day in-day out.
I’d challenge any of them to actually spend a little time with these families that they keep rejecting and see exactly what a day in the life for a family with autistic kids is REALLY like.

To go to the lengths that we do EVERY freakin’ day just to survive.

To come in and watch the strain on the wife’s face as she is forced to endure yet another meltdown over something that she couldn’t have possibly foreseen.

Or to observe the husband walk in from work only to find his wife dissolved in a pile of tears on the kitchen floor while the kids run naked and screaming around the house.

To watch someone answer the phone and have a child either seriously hurt themselves or worse…abscond in the 10 seconds that it takes for you to tell the caller that it’s not a good time and that you’ll return their call later.

Yep Mr Beurocrat, you’re right…..we don’t need help.

We just need to get some old fashioned discipline happening right?

Our kids just need a good swift kick up the bum and be pulled into line.
And if we give them to you for a day -you’ll sort them out right?

Nah….were fine! Just a bunch of complainers. Let’s save the respite for those with REAL problems.

Pffftt.

I’m just thankful that I have my mum.

Sure I have to drive 6 hours to get some help…..but I know that it’s a helluva lot more than some families receive.

And these are the families that I grieve for.

Something’s gotta change.

Here is a quote that I think is very apt right here:

¨ When your child is diagnosed with cancer, neighbours stop by your home bringing precooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

Dr David Feinberg 2007

I know that this isn’t only happening in Australia too…..this is happening all over the world…..I have friends in more difficult situations than us who can’t access help either.

Meh

So, I had a post written tonight, but I decided not to publish it and deleted it instead.

It wasn’t very cheerful. It was something that would have been more at home in a personal journal than on the world wide web.

It centered around the exhaustion that I am experiencing at being the NT interpreter in this all aspie house.

It really is tiring and I do get sick of the “me-me-me” attitude that seems to reign here.

I told them all to suck it up and walked out. Of course I didn’t get far before guilt called me back!

But they drove me out.

I’d had ENOUGH! And I didn’t hesitate to tell them all so.

I told them that DAILY I have to do things that I don’t particularly like and that being in a family is a massive game of give and take.

I felt like I was doing all the giving and they were taking, taking taking.

I put my foot down I did!

There were some other things that occurred this weekend that added to my already miserable disposition but nothing I can’t handle.

I’ll finish with a quote that I heard at church this morning that really helped me. Especially when life is “challenging”!

“Whenever you feel like you’ve let God down, remember that you were never holding him up in the first place. He upholds US”

Cool eh!

Hope you all have great weekends and I promise to be nicer tomorrow.

Promise 🙂