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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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, 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

Being lonely in a crowd.

Because nothing sucks worse than feeling alone, no matter how many people are around.

— JD, Scrubs

 This quote really hit the nail on the head as far as I’m concerned. It really is so hard to be surrounded by people that you know yet feel so alone and lonely. I had one of those experiences today and it really was hard I’ve got to say.

This morning, Lucas had a birthday party to go to for one of the little girls that he goes to school with. This is only the second party he’s ever been invited to so he was really excited and couldn’t wait to get there. I arrived and walked him inside and watched him deliver the present to the birthday girl then happily run outside and onto the jumping castle with the other kids. I said a silent ‘Thank you’ to God that Lucas is my sensory seeking child unlike Harley’s sensory avoidance because the chance of a meltdown happening with Lucas were far far less. He was in his element today – crowds, noise and fun.

I spoke briefly to the little girl’s mum and she asked me if I was going to drop him and leave or stay at the party. I glanced around at the other Mums all standing around talking and I recognised most of them from school and my decision was made so much easier. I opted to drop and run. 

(This might surprise some of you reading because most autism Mums wouldn’t dream of leaving their child in a situation like this. And I do understand why you might be questioning my decision, but let me say that if it were Harley at this party and not Lucas – you wouldn’t have been able to get me out with a crow bar. Lucas is far lower on the spectrum than his brother and doesn’t have anywhere near the anxiety or sensory issues that his brother does. Lucas’ biggest social issue is that he just talks at people non-stop without reading any clues or knowing when to stop).

So yeah. I left.

I got back to my car and sat there for a few minutes chastising myself for being such a wimp. I knew the reason I’d left but I didn’t really want to admit it to myself. I used to be a naturally very sanguine personality who loved to be around people and loved chatting and making new friends – but lately – it’s just all too exhausting. Nowadays, I struggle to be around groups of mothers who aren’t dealing with special needs kiddos because I’m jealous.

That’s right, I admitted it here. I’m jealous. It’s not that I want what they have – and I’m NOT saying that I don’t appreciate what I do have, but sometimes – I get sick of struggling with the basics which seems to come so much easier to other families.

I find it really hard to listen to them talking about their weekend plans, their kid’s latest sporting achievements and share their cute little antics with each other. My heart sinks a bit when I hear them chat with each other about how well their kid is doing at school, or about the play dates they’ve all had with each other recently. And I know that it’s not that these ladies don’t like me. No, it’s not that at all. And I’m sure that they are lovely people with kind hearts, but when you know that you have to go home and back into the war zone that is your daily life – it’s hard not to get a little down.

I rung Paul to let him know that I wasn’t staying after all and we decided to meet up at a coffee shop to pass some time. I arrived soon after and met up with Paul, Ella and Harley and it became pretty clear as soon as I’d arrived that this was indeed the entrance to another war zone…sigh…Harley was overcome by the crowds, the noise and the bright lights and we pulled pretty much every trick out of our bag in an attempt to have a scene free rendezvous without success. I glanced around at the other patrons in the cafe and my heart became heavy again. Some were staring at us, others were a little more discreet but the things that really got me was seeing how care free and relaxed everyone else seemed to be. It was the exact opposite of what we were feeling and at once I felt so alone again.

The stress was starting to show on Paul’s face too so we cut our losses and he took the kids back home, and chalked up yet another failed family event.

I got back into my car and went to pick up Lucas and he ran excitedly into my arms the second he saw me and started talking my ear off about what a great time he had. The mother told me how beautiful his manners were and that he was an absolute delight. She giggled as she told me that he became the rubbish monitor following everyone around with a garbage bag and freaking out if anyone littered! I smiled at her and thanked her for having him and smiled down at my little boy as we headed for the front door. He sung a little happy song to himself as we drove down the street before suddenly bursting into tears that lasted until we got home and beyond.

I’m not sure what triggered it or why he got stuck in a loop but Lucas screamed consistently for the next 3 hours until bedtime. He was distraught, he was inconsolable and he was a complete basket case. Bathing him resulted in me being kicked in the nose and covered in water. I had to wear an ear plug just to get near him because the screams were deafening.

Maybe it was the junk food and sugar overload that did him in? Maybe he is more sensitive to crowds and noises than I had thought?  Or maybe I should have pushed past my own personal discomfort and stayed at that party regardless of how being around other mums made me feel.  I suppose I’ll never really know for sure. But what I do know is that I am aware that this is “MY” problem and no fault of any of my friends or aquaintances.

So please don’t read this thinking that I have some sort of vendetta against those women who are blessed with neurotypically wired children because I’m not vindictive like that.  And I’m not saying that parenting typical kids is easy either, I’m just saying that although I know that I am incredibly blessed with my own children; sometimes I long for a little bit of normal. For my sake and for theirs.

Thinking ahead all the time is mentally exhausting. Trying to be one step ahead of everything is draining and sometimes I just want to go out for a coffee without the drama. I love to be around people but it’s hard to feel so alone.

And this is where I am thankful that I have God in my life. Without Him and His promise to never  leave or forsake me – I’d be a goner.

And that’s telling it like it is.


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.

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

Unsent letter

To the person who has hurt us,

You do know who you are,

I want to tell you here- right now,

That you have gone too far.

.

I want to let you know that we,

Still love you just the same,

But it hurts me when you judge our ways,

And give me all the blame

.

You know my life is not like yours,

And it will never be,

I do the best with what I have,

So please don’t bad mouth me

.

My children know that they come first,

And have my full attention,

So forgive me now, if you’ve to wait,

And I am not perfection

.

I feel that you just inward look,

And make it all about you,

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

You never seem to approve

.

I’m sorry if you feel that I,

Have been a dreadful pain,

I have no time for childish rants,

It’s puts me off my game

.

My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

.

I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

.

I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

.

So instead of focusing on yourself,

Why not offer to shoulder our burden,

And walk a mile in different shoes,

Before just spurting your poison.

.

I work so hard but still you want,

To criticize me and complain,

You won’t believe in ASDs

So it’s always just the same…

.

I’ve tried to tell you all I can,

But you don’t want to listen,

So saying that I am “not right”

Has been your latest mission

.

If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

.

The things that you’ve complained about,

Weren’t done to tick you off,

My heart was right, and full of love,

But now….I’ve had enough

.

I can’t go on pretending that,

Everything is now okay,

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

I’ve nothing left to say

.

I truly hope that you get to,

The place where you find peace,

I pray that God will bless you lots,

And that this tension now will cease…..

Tidal waves.

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

No.

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

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

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

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

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

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

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

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

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

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

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

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

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

And right then – my heart broke all over again.

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

Um yep…

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

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

Urgh…

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.

Was it something I said?

I’ve been feeling really sorry for myself today. I’m completely bored with my life.

It’s Saturday afternoon and it’s a beautifully warm typically Australian Winters day. Spring is clearly just around the corner and though I feel very fortunate to live in such a gorgeous climate – I’m still feeling very blue today.

About an hour ago, I looked out my front door and noticed the neighbourhood children playing in the cul-de-sac on their bikes and scooters and there is even a game of touch footy down one end. Some of the girls are blowing bubbles and there is a lot of giggling going on.

But where are my children?

Slumped in front of some sort of screen. Of course.

Be it a Nintendo DS, a computer or an iPad, they are simply refusing to go out and enjoy the great outdoors. They never want to go anywhere or do anything and are completely content to avoid other members of the human race in favour of stupid technology.

I know that I should “be the parent” and make them get off the damn machines but I also know that it will cause tempers to flare and I don’t feel like the screaming matches and tantrums that it will almost certainly activate so I’m taking the easy way out.

Certainly not when Mr Patient isn’t here to bear half the brunt for me.

Yep. Home alone again and I’m completely over it today.

He is doing some overflow work and has been in and out of the house all day and up until 10 minutes ago (when I sat down at this computer to write this) I was stomping around the house trying to convince SOMEBODY to do something interesting with me!

I asked the kids to go for a walk or to come and kick a ball in the backyard with me. They barely glanced at me as they declined my offer. *Sigh* This is SO not the life that I signed up for!

Where’s the excitement? Where’s the action? Where’s the FUN?

Before marriage and certainly before kids I used to always have somewhere to go and something to do every.single.weekend. And I ALWAYS had someone to do it with.

Weekends were the time that I caught up with friends and chilled out and enjoyed life to the fullest no matter what I was doing. I used to look forward to them and they were my reward for making it through another week.

And even after we had Ella (and up until Harley was born), we still continued to socialise with friends, go places and DO exciting things on the weekends and were never short of an invitation of some sort. But those days are no longer.

Nope – I feel like our family has some sort of plague. Or a “keep back” sign tattooed on our foreheads at the very least.

All the invitations have dried up and we really don’t understand why? We have tried to nut it out together a number of times but neither of us can figure out what the hell happened or where we went wrong. Why doesn’t anyone want us at their picnics or BBQs anymore?

Are we really THAT bad?

Are we too boring?

Or is our children that are the reason behind this sudden decline in friendships?

***

I think that deep down I do actually know the real reason but I’m unwilling to face it. And I have a strong feeling that Autism has a lot to do with it. Maybe not directly but certainly indirectly.

I think that people don’t understand us so they avoid us. Our lives are too intense and our children require more than a lot of people could be bothered giving so no-one wants to get close.

Or have we scared them off ourselves with the stories we’ve told or worse still…..I worry that this blog has painted such a horrid picture of life in our house that people no longer want to come anywhere near us?

Is this all MY fault?

***

Recently we have talked about the other possible reasons for the rapid decline in our social life and realised that all the places that regular people frequent and start friendships with other families are all out for us.

For example:

Church – Harley can’t handle crowds or noise and if we do manage to stay for a whole service and attempt coffee afterwards…we pay heavily for it later with an emotionally overwhelmed screaming child that can take hours to bring down again.

Sporting events – Are you kidding me? Loud noises, crowds, strong unfamiliar smells, flashing signs…do I really need to go on?

Children’s weekend sports – Well, team sports are automatically out for us due to Harley’s anxiety issues and fine motor struggles not to mention the complete lack of interest in them whatsoever.

Old school friends and their families – Um…..not here. I don’t have any. All mine are back in my hometown so that’s out.

Family members: Sisters,Brothers,Cousins, Aunties, Uncles – none live anywhere near here so ….No.

Work aquaintances – We live over an hours drive from Mr Patient’s workplace and I haven’t worked since Lucas was born 5 years ago so we don’t know anyone!

As Mr Patient and I continued to chat about this –he suggested that we make more of an effort to find some new friends and start inviting people over here first. You know….the whole “be a friend to have a friend” thing. But I couldn’t help but giggle at this idea. I mean, isn’t that like the episode of FRIENDS where newlyweds Monica and Chandler go on a mission to find another married couple that they can pair up with. You know….”married friends”.

They end up being so full-on and come across as so desperate that they scare of everyone in their paths!

Anyhow:

Sorry about the whole whiney tone of this post, I know it’s packed full of negativity and moaning but I’m just trying to work through a few things.

I do however wonder if any other ASD families feel this way too? Do any of you ever wonder where the heck you went wrong and where did everyone go? Do you still long for the acceptance that you’re always banging on about for yourselves or is it just us?

I’d be interested to know your thoughts? :)

Just five more minutes…..

It’s approaching midnight. I’m sitting up in bed waiting for sleep to hurry up and come to me. It is being elusive tonight so I’m trying to pass the time writing in my journal instead.
I can hear the clock ticking and can see Mr Patients’s chest rise and fall with every breath that he takes. I am jealous of his ability to succumb to the enticing call of sleep.

I am not usually one to suffer with insomnia, but at the moment, my tired eyes and weary body are fighting me with all of their might.

I think that subconsciously, I am just trying to delay the inevitable because in just 8 short hours, my wonderful Mum will be leaving to go back home again and Mr Patient leaves on another one of his interstate trips for several days.

The boys will have to re-adjust again.

Having 3 adults in the home alleviates a lot of pressure to achieve everything and the workload is shared almost evenly, but tomorrow it goes back to just one.

Just me.

NO, not ‘just’ me but me ‘alone’.

The child-minding,cooking,cleaning,organising stuff doesn’t bother me so much because it’s all a part of the parenting package. It’s more the emotional workload that I’d rather share than the physical one.

Tomorrow I have to wave goodbye to the awesome Grandma who plays board games with the kids so I can cook dinner in peace. And the Daddy who uses funny voices when he reads bedtime stories.

I’m farewelling the greatest sibling referee that ever lived and I have to tackle the after school emotional blowouts all be myself.

It’s funny because deep down, I KNOW that these things are all do-able and I will be ok. I KNOW that I am strong enough, but still…. I really don’t want tomorrow to come.

I’m like the child hiding under their bed covers early in the morning not wanting to get up and get ready for school. I’m not ready to go back to my life.

Just five more minutes pleeeeeeease?

Is coffee really the answer?

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

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

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

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

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

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

So….where were our children?

Inside.

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

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

Cue parental eye rolling.

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

But of course-our reality is VERY different.

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

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

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

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

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

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

My weekends are always exactly the same.

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

Surely this isn’t as good as it gets?

Is it?

But back to the caffeine/emotions link.

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

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

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

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

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

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

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

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

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

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

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

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

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

.

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

The 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. 

The “G” word…

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

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

BUT – God works in mysterious ways!

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

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

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

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

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

Who knows?

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

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

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

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

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

I KNEW that there was something in that!

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

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

W-O-W!

YES! That’s me!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m living, learning and growing.

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

Denial

Anger

Bargaining

Depression

and

Acceptance!

 

So guess what?……… I’m almost there!

See you on the other side!

 

And thank GOD that I have God on my side :)

Mummy needs a valium.

 Righteo, I need all my ASD mum friends to tell me I’m not alone on this one because I’m completely over the drama that enfolds every morning as we get ready to leave the house.

This was how this morning unfolded…

It all started when the boys decide that it’s fun to get up before the sun does and make sure that they make as much noise as possible to ensure that the entire neighbourhood knows that they are awake.

6:15 am – I hit the snooze alarm for the  3rd time and catch another 9 minutes sleep before dragging myself out of bed. I turn on the coffee machine and stumble over to the pantry to start making lunches.

6:24 am – I walk out to the kitchen and break up an argument over a green matchbox car. Never mind the fact that there are 2 gazillion other matchbox cars to choose from – no, they both want the GREEN one!

6:30 am –  lunchboxes packed and I move onto breakfast and ask the children what they would like only to be met with crying and moaning because Harley was in the middle of a game and didn’t welcome this distraction. He throws himself onto the rug banging his fist screaming “I’m not hungry, leave me alone”.

6:35 am – I tell him that it’s not time to play but that if he gets ready really quickly, that he can play then.

I pour out Ella’s cereal and start the bargaining process with Lucas.

He tells me he wants weetbix so I prepare it and serve it up but somewhere between pouring the milk and carrying it to the table, he changes his mind and erupts into tears and puts his head in his hands declaring that it “sucks”  and that “I’m so mean” and that he wants toast instead.

I tell him that it’s not on offer and that time is ticking so he needs to eat what is in front of him. He starts crying so I walk away and go back to convincing Harley to eat.

Harley is not in the mood for rules so he throws a toy car at me hitting me on the foot. I yelp in pain and hop over to the kitchen to continue the breakfast saga.

6:45 am – After making the decision FOR him and pouring out his gluten-free cereal, I end up sitting in between the boys and spoon feeding them one by one to ensure that they eat SOMETHING!

Bear in mind that these boys are almost 8 and 5 and WAY too old to be spoon fed.  * rolls eyes*

7 am – The boys have now wasted half an hour with silly tears and tantrums and are still only half way through their cereal and it’s time to start getting them dressed.

7:10 am – They finally finish eating a whopping 40 minutes after I first made breakfast. They both have tear stained faces and are not in the best of moods because “the rules” are coming between them and play time. I wash their faces and hands and tell them to go and get dressed into the clothes that I laid out last night.

7:15 am – I head up to the shower and instruct the boys to start getting dressed into their clothes that were neatly ironed and folded.

7:30 am – I walk out of my bedroom fully showered, dressed and my wet hair in a towel.

Ella tells me that while I was gone, all Harley did was play with his cars and that he punched her when she reminded him what he should be doing.

I walk into the family room and see Harley lying on the rug making Brmmmm noises with his cars. He has scrunched his once ironed/folded shirt into a “pond” and dive bombs trucks into it with a “shwwsiiish” sound effect. Lucas is lying next to him with HIS clothes also scrunched and has turned them into an obstacle course for the cars running them over and over them and around in circles.

7:35 am – I start to cry but realise that I still have 25 minutes before we have to be out the door so I try to keep my voice steady as I go and re-iron the now ruined shirts and instruct them both to at least put on their pants.

7:40 am – I finish ironing and walk over to hand them to the boys and notice that Lucas has at least removed his pyjama pants but is running around half naked. I tackle him and put underpants on him and throw his jeans at him telling him that he needs to put them on.

He struggles and struggles with them crying and moaning that he can’t do it and begs me to help him.

I refuse and tell him that he needs to learn to do it himself. He cries for another 20 minutes but eventually gets his entire outfit on all by himself. I cheer and give him a high five and turn my attention to his older brother who is STILL in his pyjamas playing with those stupid cars.

7:50 am  – I grab the cars and threaten to throw them all out and tell Harley that he’d better get dressed or I would take him to school in his pyjamas. (And yes, I did that once but that’s a whole other blog post!)

I hold him tightly between my thighs, standing over him and force his legs into his trackpants whilst he squirms and cries and hits me repeatedly. Next I manage to get his shirt over his head and release him to look for his socks.

Stupid move on my part!

As soon as I let him go, he high tails it to his bedroom and slams the door sitting up against it so I can’t get in. I spend 5 precious minutes coercing him out so that we could attempt to leave on time and finally I’m successful but his bedroom has paid the price.

His bedding is strewn everywhere and the contents of all his drawers are now piled up against his door so I step over them gingerly and scoop him up into my arms.

He snuggles into my shoulder and starts weeping. He tells me that he doesn’t want to go to school because it’s too hard and that he has no friends.

I start crying too. My hair is still wet and the towel has fallen off my head revealing a mass of wet, messy, stringy tendrils and I really REALLY don’t care anymore.

I carry him out to the family room and we pray together asking Jesus to give him a peaceful day and he settles a bit and looks over at Lucas who is now in tears himself because Harley is still gripping the same stupid green car….ARRRGGHHHHH!!!!

Lucas slams into my thigh and demands to be picked up too so I put Harley down and crouch down to embrace both of them at the same time.

I look at my watch and see that it’s now 8:12. We were supposed to be out the door at 8:05.

I realise that none of them have cleaned their teeth so we make it a “race” to see who can do it first. I give my hair a quick blast with the hairdryer and somehow manage to clean my own teeth at the same time.

8:18 am – we run out to the car throwing bags and lunch boxes in and I drive as fast as I can only to pull in the school car-park right as the 8:30 bell rings.

We are officially late……but we’re here.

I need a triple shot coffee with a dash of valium….

Seriously.

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’!

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!

Angry birds and Happy Children.

Wow!

What a weekend!  

You might remember me writing a few weeks ago about a difficult decision that Mr Patient and I had to make regarding our decision to not attend a close friend’s wedding together as a family of 5.

The basic gist of that post was that we felt that it was too much for the boys to handle so Ella and I flew up together Saturday morning for a girls weekend and Mr Patient stayed home with the boys so that we could avoid possible meltdowns and sensory overload.

This turned out to be a MAGNIFICENT decision I must say!  

Mr Patient had an absolute ball with the boys. They toasted marshmallows on the gas stove top, they watched “Mega Mind” on the big screen tv and he took them shopping and bought them both a plush angry birds toy each.  (Who says bribery doesn’t work!)

He tells me that they spent HOURS throwing them at the stuffed pig perched on top of a laundry basket over and over and over again amidst fits of giggles!

Meanwhile Ella and I spent some really wonderful (and much-needed) mother-daughter quality time together and I honestly didn’t realise how much we desperately needed this until we actually did it.

~

This child puts up with a helluva lot from those brothers of hers.

I’ll go back to Friday night now to set the scene for Ella’s complete turnaround of her emotional state.

I’d had an extremely difficult afternoon with Harley. He was in one of his particularly cantankerous, irrational and brain frazzling moods. NOTHING calmed him, he stomped around, punching all of us and walls and furniture and screaming at anyone who dared to go near him.

(In hindsight I can see that it was probably him not coping with the fast approaching weekend changes) but still – it was very trying on all of us.

I walked up to my bedroom at the other end of the house and found Ella sitting on our window seat with her head in her hands sobbing. I went over and wrapped my arms around her and asked her what was upsetting her.  She said that she was sick of all the yelling. My heart sunk as I realised that me yelling at the boys all afternoon had taken it’s toll on her and I told her how sorry I was.

She replied that she wasn’t upset with me, but that she hated that I got pushed to the point of cracking every single day. She said she understood why I yelled so much because the boys are just so full on and that she wished she could make my life easier.

I honestly hadn’t realised that this all affected her THIS much… and my heart broke for her.

So this weekend was very healing for both of us.

The wedding was absolutely amazing! The bride was stunningly gorgeous, the ceremony in the park was just beautiful and I had such a ball at the reception!

I got to catch up with a lot of friends and had such a brilliantly fantastic time…..SO much fun!

I sat through the ceremony in complete peace but every so often, I would find myself thinking about how different it would have been if the boys were there. 

I tried not to but I couldn’t help my mind from wandering.

The ceremony was in a beautiful park and you couldn’t have asked for a nicer day.  Here we are only days away from winter and we were wearing strapped dresses and trying to shade ourselves from the heat!

About 200 metres away from where the ceremony was held – there was a playground. I could imagine that if the boys were there – we would have had a helluva time keeping them away from that but Ella just sat calmly in her seat enjoying the proceedings.

The reception was in a hall about 30 minutes drive out-of-town. A real bush setting and it was AWESOME!

Mum and I watched Ella dance around the hall having the absolute time of her life! Mum commented on how wonderful it was to see her so carefree and happy and I couldn’t agree more.

There were no tense parents to contend with, no annoying little brothers and no expectations on her to “take the high road”.

But as I sat in that hall smiling from ear to ear, I found myself thinking again about the sensory nightmare that it would have been for my boys.

The chatter of a hundred happy people, the clanging of the dishes and glasses, the smells of the cooking dinners, the bright lights and the constantly swaying balloons on the centrepieces would have all been enough to possibly push Harley into a sensory overload explosion!

The speeches were very entertaining, heartfelt and just the right length but even so – Harley would have been stretched to his limit having to sit still for that long.

Ella had so much fun out on the verandah with her cousins snorting helium from the balloons and playing with them all night. The girls get on so fabulously and I couldn’t stop smiling as I watched her so blissfully happy.

She felt very grown up as she tried her very first cup of sweet tea and declared that she is now addicted to it! :D

We were amongst the last people to leave that night and Ella didn’t get to bed until almost midnight (she was wide awake thanks to the caffeine in the tea!)

The next morning, we said goodbye to my sister and her family and Mum, Ella and I headed into town for a coffee and some lunch before our 1pm flight back to the city. 

It’s no secret that I would desperately love to move back home. Not only is my Mum there, but so is my best friend and also a lot of other friends too. The lifestyle is a much slower pace and I find peace when I’m surrounded by family and friends.

We cherished our time together and it was so hard to say goodbye again.

The final boarding call was made and as Mum hugged us, I found myself sobbing into her shoulder, clinging to her fighting the urge to run back to her car and refuse to board the plane home.

I desperately wanted to stay and the thought of going back to the chaos that is my life made me physically nauseous.

Don’t get me wrong…..I love my boys and I couldn’t wait to see them again, but to experience how other people live if only for a weekend was simply amazing.

To see my daughter flourish and relax was awesome and to be able to enjoy myself without having to always be one step ahead, predict the unpredictable and avoid the unavoidable was out-of-this-world.

If nothing else….Mr Patient and I have agreed that Ella and I need to get away together more often. He saw how much this meant to both of us, and I am going to look forward to our next escape.

Not sure when that will be – but at least I have something to look forward to.

Now…..back to life as I know it….

*sigh*

The pain of not knowing.

And so ends another school week.  

It is now only the 3rd week back since the Easter holidays and Harley has already had enough.

He’s decided that school is not for him and told me that he thinks he might stay home from now on.

So …yeah….great news eh!

I think that the major issue that we’re dealing with (and have been since day dot with him) is anxiety.

I mean…..How many kids actually chew off their knuckles because they’re not coping?

He is also still struggling with impulse control (of lack thereof!) and the ability to predict the consequences of his misguided actions, and has been in trouble EVERY afternoon at home this week just for doing really really silly things.  *sigh*

It does help a little by knowing that the anxiety in him is all part and parcel of having an ASD, but just simply knowing doesn’t make it go away.

No – I now need to find some more effective ways of working with him to overcome these massive hurdles because we’re tripping on every damn one of them this week. Everything that I see him doing at home , all come under the 5 major diagnostic criteria points for aspergers syndrome.

****

Firstly, we have : Communication impairment – Harley is unable to effectively communicate the “whys” of his behaviour to me and is only able to say things like: “Because my body tells me that I HAVE to do it”. (It sounds like a pretty well cooked up excuse but I know that he really DOES have uncontrollable urges and these frighten me).

He KNOWS that he isn’t coping but because I really don’t believe that my boy even understands the reason why himself – he is unable to convey it to me so it all comes out in meltdowns and aggressive behaviours instead.

Another characteristics of AS is : Social impairment – Lately Harley has been blatantly rude and disrespectful to me, and has said some really inappropriate comments to anyone who crosses him. He isn’t suffering fools kindly – if he doesn’t like you – he’ll tell you.

I hate this and it goes against every value that I am trying to install into my kids.I desperately want to train them to love one another and to treat people with respect but there’s really no point explaining to him that he’s being rude until he’s in a clearer frame of mind, because otherwise it simply goes in one ear and out the other.   And sadly, those rarely seen calmer moments are few and far between at the moment.

He’s also having his: sensory sensitivities attacked at the moment. This is a major contributing factor to his anxiety and is apparent right now in his aversion to eating anything but plain rice, gluten-free bread gluten-free pasta and crackers. I have had massive dramas by trying to even feed him this week.

This anxiety/sensory aversion merry-go-round is ridiculous and is quite the vicious cycle.

The difficulty with change issue is also a biggie this week because Mr Patient has been away with work for most of it.  Even though travelling with work is something that happens regularly – the unpredictability of it throws Harley into a tailspin every time. Even when we I think I’ve adequately prepared him, he still gets greatly affected by this major change.

And lastly, repetitive and obsessive behaviours. This one sucks. I hate it because it drives me crazy.  I hate watching my son lining things up, counting and re-counting AND recounting things over and over again in a desperate attempt to soothe himself.  The pacing, the rocking, the stimming and the rituals have been kicked up a notch (or twenty) this week.

He is experiencing a lot of physical symptoms too. (Stomach pains, headache, insomnia and big bouts of inattention and irritability).

So….what to do?

I honestly don’t know right now.

I don’t know where to start because I don’t know what’s going on in his little brain.

What I would give for even a small glimpse into his inner workings. *sigh *

I DO know however that I will be spending a LOT of time in prayer and trying to rest in the knowledge that even though *I * don’t know the answers: I serve a God that does know.

And that simply has to be what I’m clinging to right now.

Have a great weekend all…..

Fi x

It all comes back to autism

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

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

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

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

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

Then it happened…….I burst into tears.

image from mitchieville.com

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

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

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

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

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

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

Let me explain:

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

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

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

The reason? …AUTISM.

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

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

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

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

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

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

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

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

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

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

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

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

And do me a favour will you all?

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

Because it’s bound to happen sooner or later!

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 :)