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.

 

 

 

 

 

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.

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Walking in my son’s shoes

“Leave me the hell alone!” I shouted as I threw my iPhone and watched as it hit the nearest wall.
I had no idea who was on the other end because it was coming from a blocked number, but I did know that I couldn’t possibly have dealt with one more person wanting something from me yesterday.

I was well and truly out of patience and at the brink of tipping over the cliff.

I took a deep breath, steadied myself and walked over to retrieve my poor phone from it’s resting place on the tiles half expecting it to be smashed into pieces to match my emotional state. But I was surprised to see that it only had a few minor scratches and I smirked to myself thinking: ‘maybe there’s hope for me yet’.

I sat down on the floor and put my head on my knees and took several more deep breaths.

I couldn’t believe it, I’d lost my cool AGAIN! I was coming apart at the seams and it scared the heck outta me.

And what made it worse was the realisation that this one had nothing to do with autism but everything to do with my mental state. I hated that I was back there again.

***

Every school holidays, mothers all over the world have to deal with exactly the same things that I do. Fighting children, constant hunger and requests for snacks, being told by their kids that they’re ‘bored’ several times a day, messy houses and endless chatter to name just a few. And I’ve always wondered if the other mothers that I observe really do just take it all in their stride and how many of them actually end up like me and continue to fall deeper and deeper into the bottomless pit that is depression instead.

Because, unfortunately, depression is still a major taboo in today’s society and no-one wants to talk about it so we all put on the same stupid brave faces and play by the rules smiling through tears and broken hearts.

And for me, this stupid depression is really such a chicken and egg type situation because I’m honestly not sure if my depression is a by-product of the stress that goes hand-in-hand with raising children with special needs, or whether I struggle MORE with raising these kids because of the depression that hangs over me. I just can’t figure it out.

Depression is such a complex ailment. It is like diabetes in the sense that nothing good comes from receiving the diagnosis and while it can be managed: sufferers really do wish that it would just go the hell away. No-one is thrilled when they are diagnosed and it really can make life such a pain in the butt.

But the comparisons end there.

Diabetes is a socially accepted medical condition because it’s got nothing to do with a person’s psychology but sadly, almost every single disorder that is connected to the brain brings with it harsh judgement, criticism and a negative stigma : Including Autism, ADHD anxiety and various other neurological conditions.

There are (and will probably always be) a portion of society who refuse to believe that these are true and very real diagnoses and people like me continue to fight for those whose lives are affected by one or more of them.

Because unlike diabetes; autism, anxiety disorders and depression are all hugely misunderstood. And depression and anxiety almost always go hand-in-hand.

Depression is always exacerbated by stress and stress comes from anxiety which is a common reaction when you’re in depression.

A vicious cycle indeed!

Then add to that the perception that it’s all about choices and that the depressed person should just ‘snap out of it’ or ‘get over themselves’. That kind of thinking is really unhelpful. And so is telling the person that they should be thankful for what they do have instead of focusing on the negatives. Comments like that are a huge slap in the face and totally undermine and devalue the depressed persons cry for help.

None of us choose this life. We all hate it as much as the rest of you hate hearing about it.

***
Anyway: I forgot to take my medication yesterday hence my complete mental breakdown and freaked out state.

There’s a very good reason that the Doctors tell people not to go off their meds without Dr supervision. It needs to be done slowly and over a very long time period.

When I awoke this morning, I thought I hated being a mother, I thought I hated being a wife and I wanted to run far, far away and never return. I wanted out and I didn’t care who was hurt in the process. I wanted to quit and to give away my children. I wanted to start again.

I recognised that I was heading downhill fast so I told Paul that I HAD to get out so I went for a drive to try to clear my head that was pounding furiously. He joked that I had to come back and we laughed about it but I seriously wanted to keep driving into the sunset.

I drove to the nearest shopping centre with the intention of grabbing a quick take-out coffee but as I stepped into the shopping c, I was hit by a wall of noise that immediately disconcerted me. I placed an ear plug into my ear (I’m deaf in the other) and put my hands in my pockets and walked with my head down. I could still hear every child’s shriek, every word of the song playing over the P.A. and the conversations of those near me. Sounds were mostly muted but still recognisable.

I felt blinded by the bright fluorescent lights above me and the neon shop signs around me were making me dizzy. I took a short cut through a department store and found myself having to block my nose by burying my face into my shoulder because my detour went through the cosmetics and perfume department.

My sensory system was on high alert, my anxiety levels were soaring and I just was.not.coping!

I grabbed my coffee and got the hell outta that centre as fast as I could go and went and sat in my car for the next 2 hours.

Alone.

Almost in silence.

Praying.

I asked (begged) God to show me what was going on with me. I asked Him why I was spiralling out of control and pleaded with Him to make it all go away.

It didn’t. But I don’t believe that God ignored me or refused to answer me. Because He did answer me, just not in the way I’d expected him to.

I was finally able to see that giving up or walking out is simply not an option. I realised that my purpose is still very much alive and that I needed to experience such lows today so that it could all become clear to me once again.
I needed to go through what my son goes through every time he leaves our house to help me to gain a better understanding of his struggles and “walk in his shoes” so to speak.

When I got home again, I sat down and chatted with Harley. I described what I felt today and his eyes were filled with amazement as I told him how the noises, lights and smells made me feel. I told him that I was sorry that I don’t always make allowances for him when I should and promised that I would try harder in the future.

He leaned over and hugged me and said: “You’re the best mother in the whole UNIVERSE”

And once again I sat there crying like a little baby.

But this time the tears were happy tears because I know….I KNOW it’s all going to be ok.

 

Depression……

Tumbling, Jumbling,
Crowding out my brain,
So many memories,
They’re driving me insane,
.
Too much pain,
Too many thoughts,
Can’t process anything,
Out of good retorts,
.
Wishing, Hoping,
Willing them to cease,
Please leave me alone,
And give a girl some peace!
.
Need some space,
Need a real break,
All this crap is,
More than I can take,
.
Fumbling, Mumbling,
Wanting to be heard,
It all comes of as babble,
And makes me sound absurd,
.
So darn tired,
Want to go to sleep,
Wake me when it’s over please,
And leave me in this heap.

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.

The Broken Lighthouse In The Sea Of Aspergers…..


 As the mother of two children diagnosed on the autistic spectrum, I have been given the privilege of choosing to view the world through a completely different lens. And it is a choice. Many people make the choice not to look through this lens and continue to blame bad parenting or wrong life choices for what they see. But for me; this lens helps me to see and appreciate the small things that I may have never have noticed before, and it makes a lot of things clearer and has caused my focus to change dramatically.

The lens helps me to see past what regular folk might call naughtiness or selfishness and past what some may refer to as socially inappropriate actions so that I can see these behaviours for what they really are. I am a lot better now at determining the difference between autism related behaviours and that which are not. And in those instances that I really can’t tell….I tend to give the benefit of the doubt anyway.

But recently….this lens has become clouded and murky. It no longer provides the clarity that I once had and everything seems blurry and out of perspective. I have tried to clean it in vain, but as much as I polished and rubbed, everything remained out of focus and I was getting more and more frustrated as the days wore on.

It was becoming apparent that I either needed a new and stronger lens or someone who could come along and give it a better clean than I was able to. Someone who was able to peer into the lens briefly and see exactly what I was seeing but through different eyes and give me a different perspective. I needed someone like my friend to point out that the lens wasn’t the problem but it was me that had become exhausted and weighed down. And looking through ANY lens when your brain has as good as packed it in, is bound to show a whole lot of stuff you don’t want to see.

I needed this friend who was able to point out to me the good stuff which I was once again missing, because the crap that I wade through (metaphorically and literally) every day had caused me to seriously lose focus.

I’ve been complimented many times over the years on what a ‘great job’ I’m doing and how my kids are ‘lucky to have a Mum like me’  who has thrown herself into spreading awareness and understanding – and I love being built up like this – but I’m not sure that people realise that none of this comes without major effort and personal sacrifice.

Every day, I have to read all my children individually and determine what their needs are and always be one step ahead of them at all times. This is hard when they are often unable to communicate their needs and I have to translate general conversations and directions into their dialect and be the mediator between them and the rest of the world.

I foresee things that they’ve usually missed and I have to explain things that most people take for granted all.the.time.

I have had to learn to speak in a different tone and manner for each child and I need to speak to them in the way that they each understand. Autism is not a one-size-fits-all diagnosis and my kids all present incredibly differently when it comes to autism specific quirks. Throw in a spectrummy husband and daughter and the translating alone becomes a full-time job.

I was once described by a dear friend (who sadly no longer blogs) as the NT island in a sea of aspies and she was absolutely SPOT ON with that description! I constantly feel like I am the one that anchors this family and that they all just float around me randomly, lost and waiting for me to give them their specific directions. Sometimes I feel like the lighthouse on that stupid NT island warning everyone around me of danger despite how utterly exhausted I am.

Yeah – a Lighthouse is a great description, but one the is slightly cracked and with a broken flood light. A lighthouse who is no longer able to shine as brightly and one that is crumbling from the inside out. A lighthouse who is unable to manoeuvre herself off the island because the weight is just too much to bear.

This lighthouse has been desperately in need of repair and a little TLC to restore her to health once again.

All of this has gotten me to a point lately where I had to pull out and play the selfish card. I had to pull back from friendships because I literally had NOTHING left to give and I had to tell people that I was too tired/drained/miserable or exhausted to help them. A lot of people seem to come to me for help and for guidance even though I can barely cope with my own family and turning people away was hard but oh-so necessary.

I can’t keep giving out from a reserve that is completely empty. I may have appeared to be doing AOK, but inside I was suffocating and slowly and painfully dying.

Recently, a wonderful friend encouraged me to go and seek some help, so I took myself off to the Dr and broke down crying in her office. I told her that I was sleeping all.the.time and that I had no motivation to do anything. Getting up in the morning made me cry. Driving the kids to school made me hysterical and I was physically sick every afternoon as 2:30pm approached and I realised that I had to go and collect the kids again. I clearly wasn’t coping. I was desperate. I actually don’t enjoy being this way and I wanted to escape it all.

Whilst I regularly watch my son Harley spiral out of control via behavioural explosions and insomnia in times of stress, I personally retreat and sleep so I don’t have to deal with anything.  It’s a classic case of flight mode for me and fight mode for him.

I discovered that all of these signs that I was displaying, were major indicators of me being once again engulfed by major depression and I realised that I really did need professional help to get through it. My Doctor doubled the dosage of  my medication and ordered a number of tests for me to undergo. I’m still awaiting some of these results.

Even though most of this occurred almost a month ago, I have resisted writing much about this for a little while now because depression has a massive stigma attached to it. It is more than just being a little bit sad. It is not a choice and it is not a way of trying to attract attention. It is very real and debilitating but there is a major misconception out there that depression is just a negative state of mind.

No-one would ever tell a diabetic to snap out of it and that they don’t really need their insulin, nor would they tell a paraplegic that their wheelchair was an attention-seeking device, but because depression – like parenting autistic children – is so majorly misunderstood….sufferers generally suffer in silence.

Which is really sad because studies have shown that talking about your struggles and feeling heard is a major step towards gaining healing and making progress in the right direction.

This friend also taught me that hope is what pulls people through. We all need hope at the end of the day. Something to live for, something to keep us going despite our struggles. We all need someone to believe in us and we need to ultimately learn to believe in ourselves.

*******

I was crying out to God this week…begging Him to repair this lighthouse, pleading with Him to help me to keep shining out the beacon of hope to those that have been entrusted to me, when He gently reminded me that I am supposed to look to Him to be my lighthouse and that I am trying to do too much in my own strength.

He reminded me that He is supposed to be the guiding light and I am supposed to be the vessel that He shines through. And with this HOPE that I have, I can continue knowing that it’s all going to work out in the end.

John 8:12

 12 When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

What I believe…

This post may surprise a lot of people who know me personally because I like “girl power” about as much as I like lady Gaga….Bleeuughh!  

I’m not into womens meetings (my friend D calls them oestrogen meetings :D) and I’d rather gouge my eyeballs out with a fork than attend a motivational speech about influential women.

That said: I really do believe that mother’s need each other.

I believe that we all have it in us to reach out and help others no matter what our circumstances. And this is as simple as buying a cup of coffee for a friend, washing their dishes for them when you visit or just giving a hug and an encouraging word just because you can.

I believe that life is hard. It’s always going to be that way so we may as well get used to it. The difference is how you choose to view it because it’s a glass half full or empty kinda deal.

I know that personally, I often forget this and have been known to sink into deep misery. Parenting autistic kids does that to you – it’s damn hard work and often the rewards for your sacrifices are few and far between.

  Thankfully, in those times that I have bottomed out, one of my amazing friends will pray for me and throw me a rope to help pull me out of the pit. I am so grateful that God has put these people in my life. I would be lost without them.

I believe that it’s ok to not cope and fall in a blubbering heap, and that mother’s need to be more honest with each other. I truly don’t understand why society has these stupid unspoken “rules” that dictate that mothers need to appear to be on top of the world and coping beautifully with everything that they are juggling,  at all times.

Because that’s just not reality at all. Even mothers of children WITHOUT special needs find it tough at times too. No-one receives a manual when they become one.

If you’re having a rough time, you should be able to count on another mother to support and not judge you. If your current friends don’t do this – you need to find new ones. It’s that simple.

I believe that you don’t have to agree with someone or even share their beliefs to help them out because it’s not about that. It’s about putting others before yourself even when you don’t feel like it because what goes around comes around, and one day…you may need someone to do the same for you.

You may be wondering where this post is coming from and where-on-God’s-green-earth it’s headed?

Well, I’ll tell you:

If I had a dollar for every time that someone has come to me and “shared” a tidbit about another mother and/or her parenting skills I would have enough money to retire already.

Seriously, it makes me crazy.

People should mind their own business and rise above gossip.

I’ve mentioned before that I have lost friends since the “a” word moved in here but I can now see that I’m better off for it. Those people weren’t true friends anyway. They were only ever looking for what they could “get” from me and I was evidently too much hassle and they simply weren’t prepared to give what I desperately needed.

But losing them has made way for new and true friends. Friends who don’t always understand us but try their very best to. Friends who don’t judge what they don’t know and friends who are willing to give the benefit of the doubt whenever it’s needed.

Mothering is really damn tough. I know for one that NO-ONE really knows what goes on behind closed doors. For example – very few people are privy to the war zone that we live in every live long day and if outside appearances were everything, I’d be stuffed!

I’ve made no secret on this blog that things have been really tough here at times and will probably continue to be – that’s to be expected considering that autism has taken up permanent residence, but this post is not even necessarily about me.

No, this is more about the people who I meet in the autism circles that I run in and the family stories that I read as I pore over the blogs of other autism mothers all over the world. The mothers who are desperate to be heard and the mothers who have been wrongly judged and probably gossiped about.

My heart breaks for the mothers who have no family support. The mothers who have been shunned by their friends and who have no-one to turn to when the chips are down.

Those mothers who are working three jobs to afford their child’s therapies, the single mothers who have sacrificed everything so that their child gets what they deserve and the mothers who just.want.a.break!

Don’t get me wrong. I am no better than anyone else. I often hear myself saying “I’m already too busy “ or “I can’t” and the sad fact is that we are all living in a frantically paced world right now. But surely even so, mothers can still be there for each other can’t they?

We need to leave our opinions in our heads where they belong and reach out and help each other. Plain and simple.

It shouldn’t be this hard.

It really shouldn’t.

I’m just sayin’!

The only constant

We decided this morning that enough was enough.

We were going to church as a family and nothing was going to stop us.(Cue meltdowns from both the boys but especially Harley).

The boys were hyperactive, jumping on each other, kicking and punching each other and screaming blue murder at Mr Patient and I every time we spoke to them or tried to discipline.

Both of the boys had accidently eaten some gluten yesterday while out with Mr Patient so we were aware that this was a factor in this mornings bruhaha.

Nevertheless, we were determined to get there.

I missed my church friends and really needed to be there as I have been so down lately.

And I’m pleased to report that we went and had a really wonderful morning. All the kids went to the kids group (YAY!) and we had at least an hour and a half of semi-peace!

As I sat and listened to the Pastor’s message, I had something profound come to mind. Something that really explained to me why I feel so blah most of the time.

I believe that God dropped this nugget into my head because it is so perfect for where I’m at now and makes SO much sense to me.

I realised that even on the mornings where there is no “major autistic event”, (meltdowns, etc) there is always an uneasiness that it could pounce at any time. It’s like a black cloud that’s constantly hovering over our household .

It is always there lurking, always leaving you guessing as to what is around the corner and THAT’S the most stressful part for me of living with autism. More so than the meltdowns and the sensory stuff and the fighting all thrown in together.

You can predict some of the triggers some of the time. But never all of them all of the time. There will always be an element of surprise. It’s the feeling of being overwhelmed and constantly cautious that I find the hardest.

Mr Patient went further to say that sometimes he wakes up and is on edge before his feet even hit the floor because he’s wondering what child will lose it and who to avoid and is never completely at peace.

And I spoke to a friend at church this morning and she asked me how my morning was and so I told her: “It was hard, stressful, draining and exhausting”

She flippantly replied: “Yeah, but isn’t every morning like that in your house?”

I thought about it and wondered how much of the boy’s moods really were dependant on Mr Patient and I and the family dynamic, and how much of it had nothing at all to do with anything we’ve said or done but everything to do with the  ‘a’ word that seems to be the only constant in our lives at the moment.

I think a lot of the pressure, stress , depression and exhaustion is due to us always having the unpredictableness of autism hanging over our heads and never knowing ‘what you’re gonna get’ on any given day.

At times, the pressure builds and it sometimes causes Mr Patient and I to argue and take out our frustrations on each other and none of that is healthy or conducive to a happy family.

God gently reminded me that autism is NOT the only constant in our lives.

In fact, He is the only constant.

The dictionary defines constant as : Not liable, or given, to change; permanent; regular; continuous; continually recurring; steadfast; faithful; not fickle.

He is the same today, tomorrow and forever.

So I prayed this afternoon praying that this ‘cloud of sadness’ that accompanies autism would be liften from off our family and that there would be a lot more peace, calm and compassion in it’s place.

I want to enjoy my family – autism and all and from now on. I REFUSE to let autism be the “decision maker” and only constant in our lives.

Up, down, up, down up down….

I am a very emotional person. I was made that way. I feel everything. The highlights, the lowlights and everything in between.

I started blogging so that I could “vent” and let off steam. I need to be able to do this. Raising autistic children is extremely challenging and draining.

I try to be positive and view situations in the best light possible but because I am human, this does not always happen.

This particular post was written during a really sad and hard time for me. I wrote it because I needed to get it out.

If you don’t want to read it, that’s completely fine with me but please do not read this post then write to me and tell me to stop being so negative and to “look for the good”. I already know that there are a lot of good things in my life. There are also a lot of hard things and I’m the type of person that needs to voice things in order to work through them. And that is what I’m doing here.
I am not looking for sympathy and I am not “whinging”. This is simply how I roll.

I am working though these emotions and I know with God on my side I will get there.

Depression: A mental state characterized by a pessimistic sense of inadequacy and a despondent lack of activity.

Hmmmm……Interesting definition.

I came home from dropping the kids at school this morning, gave Lucas his DS and put the TV onto Nick Jnr and went back to bed and pulled the covers over my head hoping that when I came back out again, everything would have just gone away and I could be happy once more.

You see, I did feel totally inadequate, extremely pessimistic and despondent and didn’t want to have anything to do with anyone or anything. I just wanted to lay there and let the world pass me by. It was easier that way. It scares me a little when I hide from people because I am a real “people person” most of the time and I crave human interaction. But I completely fit the above definition of depression this morning.

It all started on the weekend with Harley’s massively violent public meltdown. This depleted us of all of our sense of value and pride and drained all of our energy reserves.

Then, a major plan that my husband and I had been making, fell through and I felt my world had been ripped out from under me and mixed with the most horrendous night we have EVER had with Harley and that explains why climbing under the sheets and pulling the doona over my head seemed like the only option.

Last night, Mr Patient and I were both exhausted. We went to bed at 8pm. This in unheard of here. Normally I wouldn’t even consider this , as the time after the kids go to bed is “our time” and we don’t like giving that up for anything. Even to sleep!

We had only been in bed a couple of hours when Harley comes into our room for the first time.

It was 10pm – Mr Patient walked him back, tucked him back in and came back to bed.

11pm: He appears again. Crying.

I take him back (not as calmly as the first time) and tell him not to get out again.

Midnight: He comes in crying loudly this time. Both of us tell him to go away, and that we’re sick and tired of his crap.

We take him back to bed, march out and slam his door.

2am: He is lying in bed crying very loudly and has woken the other 2 children in the process. I march up there furious and bellow at him to “BE QUIET” and tell him to stop being so selfish and “GO TO SLEEP!”

3:30am: He (bravely if you asked me) comes back in our room and tell us he’s scared of the noises that he can hear outside his bedroom. I go up there and can’t hear a damn thing however, I give him my iPod to “drown out” these mystery noises.

4:30am He comes BACK to our room and I cracked. By now I’m hysterical and screaming like a banshee at him to get lost and he cries and cries and tells me that I’m scaring him and I seriously don’t care. Mr Patient steps in and tells me to go back to bed because I was making him worse and he resettles him for me. This takes a good half an hour.

6am: He appears AGAIN so we  decided that enough is enough and reluctantly drag ourselves up to start the day.

I’m extremely short and blunt with Harley and tell him to stay away from me because I’m angry with him and tired and I need him to keep his distance so I don’t explode.

He puts his little head down and walks up to his room  and goes and gets ready without me having to remind him once . After 20 minutes, he  comes up to me with tears in his little eyes and tells me that he needs me to forgive him.

Crap. Now I feel like the worst mother human being alive.

I cuddle him (sobbing myself by now ) and tell him that I’m sorry that I was such a horrible person to him and that I was deeply sorry for being so mean to him and not treating him properly. I asked him if he would please forgive me.

I pray with him and tell him that I really should have prayed with him last night when he was frightened instead of yelling at him but explain that I was so tired that I made really bad decisions.

He goes to school in a better frame of mind and I come home feeling like a monster.

Like the most horrible person that ever lived. I felt like I didn’t deserve these children because they could do much better being parented by someone more stable.

Then God spoke to me:

He told me that He has forgiven me and that “ALL IS WELL” because  today is a new day and his mercies are new every morning.

I argue back at God and tell him that I don’t deserve his grace or mercy because I am a rotten mother and a selfish person who allows my emotions to rule me far too often.

I tell Him that I have damaged my son for life and that I have hurt him beyond repair and ask him how on earth was I going to fix this mess?

He answered me by putting Ephesians 2:8-9 on my mind.

8For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God— 9not by works, so that no one can boast.

And follows that up with 1 John 1:9

NIV © If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness.

And now I know that last night is over and I can start anew.

I will keep pushing this elephant up the hill and I will get there.

I have a fresh determination and a new clean slate. And what do you know?  It  really is well.