Beginning to exhale 

Blogging about your children is an issue that has been a topic of much debate.
There is the camp that say that it’s ok and that it’s no one else’s business what you write because they’re YOUR children therefore your right, and then there’s the camp that is almost venomous in their opinions and attack any parent who chooses to write anything at all.
This second (and polar opposite) group often refer to the the afore-mentioned group as abusive and attention seeking while the first group see the second as do-gooders and the ‘parent police’ .

I’m somewhere in the middle of these two extremes.

I think that writing about your children is definitely a personal decision that needs to be discussed with your kids and it’s certainly not a right. I think that any writing needs to be respectful of the children and mindful of any possible future effects on these children. I also think that the children need to give their permission before anything is shared. And in the past- I have not done that.
I hold onto a lot of regret over that one.
We need to remember that one day they will be grown and there is such a thing as cached information and that it’s possible for anything that we share now to potentially have a profound impact on our kid’s futures.
I feel that it some ways I have crossed the line between wanting to protect my kids and the never ending pursuit of finding my tribe, the other parents out there who can nod in agreement and say ‘me too’.

I have read back on posts I wrote 5 years ago and cringed. Not because of what I wrote- but how I wrote it. Of how I let my own emotions and hurts override the maternal instinct to protect my kids and how I described situations that could now be seen as detrimental to my children.

A lot of the things that I have written when my kids were much younger were NOT written to garner attention or extract sympathy from readers, but simply to try to find other people ‘out there’ who get it.

Other parents who know firsthand what the emotions are that you can’t always necessarily describe and the parents who will stand beside you as you continually push impossible elephants up increasingly higher mountains.
But blogging can also be a place where triumphs are shared and troubles are halved because talking about those things that you’re struggling with can become less daunting and overwhelming when you have another parent offering up advice or ideas that you may not have thought of yourself.

But at some point over the years I learned to shut up and say nothing. I learned that a lot of people judge and a lot of people already have their opinion formed and that there’s nothing you could say or do that will sway them or convince them to see something they’re not willing to see. It’s not always malicious but sometimes it unfortunately is.

So in a way I allowed my heart to toughen up a LOT. I formed a protective barrier around it because I got tired of people walking out on me, and I got tired of other people (even other autism parents) judging me or gossiping about me because they couldn’t or wouldn’t understand what we have been going through or why I would write about it.

Fast forward to last Friday when I met with our new family case worker.
I spent 6 years trying to secure this for our family and I’d almost given up. Six long years of emotional blogging to try to release some pent up grief and to try to dig us out.

On Friday, I sat quietly around a large boardroom table that had a case worker, a senior case worker, a family referral officer and her senior manager sitting there taking notes and assessing ways that they could help our family.

Our family that is in crisis.
Our family who is held together by sheer determination on my part and by the grace of God.

The case worker had a thick file in front of them full of information that had led to us being here where we are right now.

It contained detailed reports from professionals in the medical as well as educational fields. Reports that would make most mother’s hearts rip apart and most families to go through similar emotional breakdown.
And during this meeting, I was required to let it all out.

I was required to describe everything with absolutely no details spared, with no ‘t’ left uncrossed, no ‘i’ left without a dot and no pages left unturned.
Because this was what was needed to enable the workers to put plans into place to help out family to find our equilibrium again.

The first thing that the social worker said to me was that I needed to be helped first.
Because a mother who has no outlet and no relief will not be able to function well enough to be the best mother that her children need. Especially when it’s such a difficult situation that you’re all in.
She knew from past communication from me that writing was what leveled me out and what I use as my therapy.

She knew that I have been avoiding writing for fear of backlash because of the nature of the events surrounding both of my boys and she advised me to keep the details I had shared with her off my blog and that I instead use her as my safe place to discuss these things.
But she doesn’t want me to stop writing altogether.

She wants me to continue writing the fictional novel I started years ago and publish the one that I completed already.
But I haven’t decided yet what to do with that. Because a part of me doesn’t want to share what was written from such a deep and personal place.
Part of me wants to keep the novel sacred because it was written semi auto-biographically and a lot of it mirrors what I was going on in my own heart and mind at the time.
So for now I’m going to sit tight.

But the good news is that for the first time in a very long time – I am finally able to exhale.

And that is worth far more than all the gold in the world.

The Brick Wall

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THE BRICK WALL

I wanted to write this post to attempt to fill in the gaps for family and friends regarding the goings on with my kids and specifically with my youngest son *Lucas.

I know that a lot of you (particularly family) rely on me writing about this stuff to keep you in the loop and I’ve been terrible at staying on top of this blog. Partly because I’m kinda busy lately and any spare time I do have is usually taken up with kid stuff and also because it’s all a little overwhelming and I am trying really had to not be all doom and gloom and come across all negative. Because, let’s face it – that kind of writing is as depressing to read about as it is to write it.

I also want to thank those of you who have been constant with their prayers and encouragement because that’s what has kept me afloat these past few months. It hasn’t gone unnoticed and I am so very appreciative of it.

So, *Lucas:

He hasn’t been very well at all, mentally, and towards the middle of last year he took a very steep downward spiral and like his older brother did at the same age, he became suicidal and majorly aggressive. Not to other people but mostly through self-harming. I won’t go into details for his privacy but suffice to say that there was no way that I was going to sit back and let this monster take over my baby in the way that it had threatened to do with *Harley only a few years earlier.

The first step was having a meeting with his school counsellor and principal and through them I was put in contact with a family referral service.

The family referral service then helped me find a child psychologist who specialises in autism and mental health disorders and have also helped fund these visits as it is a private practice and unbelievably expensive.

During July, I asked my Mum to move in with me for the entire month because I was falling apart and the magnitude of trying to hold down a job and parent special needs kids just about sunk me. I am SO thankful that I have her and honestly: I don’t know what would’ve happened had she not been able to step in and help me dig myself back out. She has been a constant support since then and has held my hand through every step of this harrowing process.

*Lucas’ Paediatrician put him on the same anti-psychotic meds Harry is on, only he doubled the dose after it not having the desired effect.  I still failed to see much of a change in him (apart from marked weight gain which is one of the ghastly side effects of the drug) so I have been gradually lessening the dose until we can find the right balance. Now, he is holding at a lesser dose but he is also undergoing intense therapy so that probably as a lot to do with it as well.

I have just started attending a “parenting challenging behaviours” course that was strongly recommended to me by his psych and after battling my own reservations about this- I went for the first-time last Thursday night. And I’m really glad I pushed past my own junk to go because I can see that the next 8 weeks are going to be the equipping and empowering that this worn-out mother desperately needs.

(My reservations mostly centred around feeling quite hurt and affronted that my parenting skills were being challenged and judged because I felt as though it was somehow my fault that I was once again dealing with the head mess that is out-of-control children).

But I posted a little something on Instagram about this and received some really encouraging comments that helped me to get over myself and realise that it was the best course of action for me to take.

So, the course: I wrote down a ton of notes on Thursday night (none of the other parents did – I think they were a bit confused by me but I know how forgetful I am and didn’t want to walk away not remembering vital information). And I have decided that I will write some blog posts in the next few weeks outlining what I have taken away from the workshops so that I have an online copy of this as well as the scribbled notes in my journal.

Also, because the internet (particularly autism parent-written blogs) are the first place I go when I have a question about behaviours or development and there’s a chance that reading this might help some other parent out there on their own 3am google fest.

(I need to mention that this information is not my own and if you would like to know more about the group of professionals that are teaching this, please email me and I will send you their details. I just don’t want to publicly give away my location so that I can protect my kids).

 

What I took away from Thursday night was “The Brick Wall Analogy”

I have always wondered why the meltdowns and tantrums in my boys seem SO much worse now that they’re older. I mean, when they were 2 -5 (typical developing children’s usual tantrum age) – they would lose it and although their episodes could sometimes go for hours on end, they were shorter and less intense than the episodes that I’m seeing in them now that they’re older. And that didn’t make sense to me at all? Because I thought that they were something that kids just “grew out of” or learned new ways to self-regulate, and they do.

But sometimes, they don’t.

And that’s where the brick wall analogy came in.

All walls are built with a foundation. Some foundations are strong and sturdy (nurturing, loving, typically neurologically wired) and the base for the child’s development is solid. But some foundations are a little weaker. (Illness, trauma, abuse, disability, neurological difference etc)  and though the foundation is weaker – it can still hold a wall because the foundation learns to shift to make allowances for these things (because it’s all it’s ever known).

Over the years, the bricks of learning and development and life experiences are laid one by one until eventually there is a very tall wall that is now strong enough to withstand the onslaught of life’s issues that most adults are equipped to deal with.

But in some children with learning difficulties, neurological disorders, trauma, illness, abuse, disability, situational grief (and a vast list of variables) there are bricks that are either not laid or they are damaged.

Sometimes these bricks are things like self-regulation skills, social skills, language skills, motor skills (gross and fine) and the bricks that are not laid for whatever reason don’t appear to be too much of an issue when the wall is still toddler or child height.

But the taller the wall gets (the older the child becomes) the more that the missed bricks in the wall begin to show their weakness and the more that the wall becomes unstable and noticeably different to other walls.

It starts to sway more because of the missed bricks and the force on the wall; like a strong wind (“life happenings”) cause the wall to take much longer to stabilise.

Now, all is not hopeless, A wall can have the missed bricks patched up later by an experienced brick layer, (child mental health professional) but it’s important to note that these patches will never be as strong as if the brick was correctly laid initially in childhood. Still able to hold the weight of the wall but the more bricks that are missing – the greater the repair job and the more unsteady the wall.

And that’s often where the challenging behaviours begin. The child is missing vital bricks (in Lucas’ case it’s self-regulation and social skills) and right there is how I can now zero in on exactly what my boy needs.

Does anyone else find this as fascinating as I do?

I walked away from the first session feeling as though I had hope for the first time in a very long time and once again – I’m SO glad that I went.

Anyway, I went and got my hair all fancy at the hairdresser this morning and I’m about to go get ready for a girl’s night out with a group of friends so I will leave it here and wish you all a fabulous weekend.

Fi x

 

 

Take another little piece of my heart now, baby…

ImageI write every single day.

But the difference between now and 3 years ago when I started this blog, is that I only publish a very small portion of what I write here on Wonderfully Wired. Most of it is in journals, on loose scraps of paper or still in my head because I learnt the hard way that people are judgmental.  Some people took it upon themselves to publicly correct me, accuse me and made an example of me because I dared to write about things that were slightly controversial, negative about autism or (what they considered) borderline attention seeking.

That’s just the way it is in blog land unfortunately. But I’ve also learnt that if I choose to make information about me or my family public then I have no place in getting upset when I am attacked. I made the choice to put it out there so I have to toughen up and take whatever comes my way.  I have withheld a LOT of information regarding Harley because he is now at an age where he is sensitive to how others perceive him and is high-functioning enough to notice that he is different. I am careful what I write because kids can be really cruel at times as can their parents. But despite all that – I really need to write this out today. I need to know that we’re not alone in this nightmarish hell that we’re living and I need to connect to other parents who not just get it but those who really get it.

Lately, we’ve been finding parenting really tough.

Harley is more aggressive than ever before, more panicky and anxious and more volatile as well. We’re at our wits end as to how to help him and the proverbial straw is balancing very precariously on the camel’s back at the moment.  His meds are taking the edge off –sure- but the underlying agony and grief that he experiences every day just ‘existing’ in this world is holding him hostage at all times.

I look at him and want to cry, not because I’m angry at him but because I feel so helpless to soothe his personal demons and diffuse his outbursts in time. He told me that his brain is literally driving him crazy, he said that he wants to rip it out and stomp all over it because it drives him mental. He doesn’t want to be ‘different’ anymore and wonders out-loud why he has to have autism because “It just sucks hard Mum”.

I only have to look into his eyes to see the pain etched there, the confusion, the hurt and the bewilderment at this world where he is made to feel like an alien. He told me that he knows that he doesn’t fit here on earth. He said he feels like a freak show and that he wants to die. His OCD has started to get out of control again and he is not only over-washing his hands until they bleed, he is also gnawing at them with his teeth.

“I need to feel pain Mum, it stops my heart and head from being overwhelmed. Every time I look at my hands it reminds me that I am stupid, that I am dumb and that I’ll never be like everyone else. I hate me Mum.”

I am extremely picky over whom I choose to spend time with these days. I can only wear my “everything’s fine and dandy” mask for short periods and I just don’t have the strength for small talk and niceties anymore. I may offend people in my real life with my perceived harshness and flippancy but all of my strength is going into keeping my family together and in one piece and I can’t apologise for that.

I keep putting one foot in front of the other because I have to. I keep soldiering on because I just don’t have the option to quit. I’m in this for the long haul – I will NEVER give up on that kid.

Ever.

Take another little piece of my heart now, baby!

Oh, oh, break it!

Break another little bit of my heart now, darling, yeah, yeah, yeah.

Oh, oh, have a!

Have another little piece of my heart now, baby,

You know you got it if it makes you feel good,

Oh, yes indeed.

–  Janis Joplin

 

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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This. Is. Our. Life.

I have a few friends who are at university at the moment. They all know that the next few years are going to be pretty full on but they throw themselves into their chosen field of study because they know that at the end of it – they will be one step closer to achieving success. They know that the sacrifice will pay off eventually and it will all be worth the hard work and long hours.

So my friends make the wise decision to arrange their social life around study and learn to turn down invitations that either conflict with their upcoming exams or might possibly eat in to their necessary research/study time.

They become super-focused and their course seems to completely consume them and be their main topic of conversation. They know that if they were to fail an exam or a unit that it wouldn’t be the end of the world but that it would put them one more step behind and that to catch up again it would require double the effort and time. They know that it’s just not worth it.

They know better than to push their responsibilities to the backs of their minds in favour of having a good time now. And they also know that it won’t be like this forever so they push through so that they can not only succeed but also flourish.

I admire them so much for their dedication and resilience.

It’s been suggested to me that I spend too much time thinking about autism and talking about autism and researching/reading about autism and that I would be better off spending the time that my children are at school doing something – anything that is separate and unrelated to autism. Because apparently – I have allowed autism to consume me and allowed it to depress me, and that it has made me not a very fun person to be around.

And I understand why people would think that way but honestly, as unfortunate as it is that I’m seen that way: I know that this kind of thinking only comes from those who don’t live a life like ours.

And explaining it to people who already have their minds made up about what they think autism should look like or how much time I should dedicate to it daily is as futile as explaining what childbirth feels like to a man.

People can empathise, they can say all the right things and read all the right literature that they can get their hands on, but they will never ever truly understand it unless they live with it 24/7 as we do.

We were never given the option to ignore autism or downplay the difficulties that it often presents because this is our life. We aren’t afforded the same luxury of pretending that it isn’t really all that bad. Honestly: I would seriously LOVE to step away from this life for a few hours a day but I know deep down that to do that I would be putting myself in a position where I would surely fail the afternoon exam.

And yes, like a Uni student who chooses the good life over responsibility – life wouldn’t come to an end – there wouldn’t be an unrepairable problem if I laid off the intensity, but it would definitely put me further behind in the sense that I would be unprepared and ill-equipped to deal with what may or may not be thrown at me.

Life with autism isn’t a series of multiple-choice questions that you may be able to fluke and guess all the right answers to. Autism is extremely un-predictable. And autism is a life-long neurological disorder – not something that will be over after a few dedicated years of study. Information regarding autism and helpful strategies is ever changing and rapidly advancing and I don’t want to just scrape by in these life exams – I want to get high distinctions and really know my stuff so that I can give it my kids my absolute best shot. I owe them that!

I don’t ever know what kind of drama I’m going to get as I drive to school each afternoon to collect the children. It is usually intense and it highly overwhelming but it is what it is so I need to be prepared.

***

And while I’m on this subject, I’d like to ask how many of you have met my youngest son Lucas?

See this little brown eyed smiley boy? He is 6 years old and thriving in his very first year of school. He is reading and spelling above his age level and is an absolute delight to live with.

He was diagnosed with Aspergers Syndrome last year, which places him on the higher functioning end of the autistic spectrum.

In fact – his presentation of autism is so mild that I honestly don’t know if I would have even have noticed his quirks at all if his older brother wasn’t already diagnosed and I therefore knew which indicators to look out for.

Lucas has only ever had one meltdown in the supermarket. I can take him almost anywhere without a problem. He is obedient, agreeable and generally unaffected by loud noises, crowds and a lot of activity, He doesn’t require the same level of routine and structure that his older brother does and he transitions to new situations extremely easily. He is generally an absolutely easy child.

And a lot of families have a child with autism that presents in a similar way to Lucas.  There are a lot of kids just like him out there and that’s wonderful!

But unfortunately, there is a huge misconception that all children on the spectrum are like Lucas and that parents like me who write about major supermarket meltdowns, screaming matches, violent behaviours and family crisis are just trying to extract sympathy at the expense of their children.

We are accused of painting an incorrect and highly inappropriate picture of autism and that we are a disgrace to the autism community. That we are cringe worthy even.

And I understand that. Honestly I do. Because if both of my boys were like Lucas, I would probably also feel the same way were I to read one of my blog posts about a day in the life of Harley. If I was only blessed with a quirky child who didn’t struggle with every little part of the world that they are forced to live in – I can understand that my writing seems overly woeful and self-focussed.

But you see, we also live with a completely different and more difficult presentation of autism as well. We have Harley who is plagued by anxiety, major sensory issues and OCD and I know that there are also a lot of parents out there who deal with a child who presents exactly like Harley. They would love to have a Lucas but instead they deal with a lot of the same stuff that we do.

These parents are also misunderstood and judged both by their peers and families and even sectors of the autism community and also know that unless you live with the major strife, angst and tension that we all do –you really have no idea and therefore no right to pass judgement. Yet they are judged. Frequently.

These are the families that I mostly write for. These parents who throw their hands up in the air screaming “WHAT NOW” every time a new hurdle presents itself. These parents who are at their wit’s end trying to stop their family from crumbling before their very eyes and these parents who would give anything for a full night of sleep.

These are the parents who write to me thanking me for showing them that they are not alone and that there is hope and the families who also endure harsh judgements and well-meaning but hurtful advice.

Truthfully: we honestly thought that by age 9, our son would have grown out of the major meltdown stage. But they don’t seem to lessening in frequency or intensity and we thought that the older that he got – the easier that he would become because EVERY ONE kept telling us that.

But you know what? He’s not! He’s really not! Sure there have been major breakthroughs and massive progress (all which I’m truly grateful for) but when you’re looking at the bigger picture we still have a very long way to go.

And at the end of the day it has had to come down to this for me. (And I apologise in advance if this comes across harshly as it’s not my intention):

If my writing and my accounts of our life offends, upsets or annoys you – by all means, click on a different blog. I cannot write about someone else’s reality, I can only share things as I see them. I do not write to cause controversy, I do not write to sensationalise my life and I definitely do not write in an attempt to procure sympathy for myself by describing every single supermarket meltdown.

This. Is. Our. Reality.

If you think I write unrealistic descriptions of autism as YOU know it, you are allowed your own opinions and I will probably never change your thinking so I’m not going to try to. But I’ll leave with a quote from one of my favourite writers Stuart Duncan who is a father of a child on the autistic spectrum because it pretty much sums where I’m coming from perfectly.

  “Autism is not an opinion, It is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me”.

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.

 

O.C.D…OMG!

Spinning on the spot to regulate himself.

I’ve noticed that there are definite stages that you go through as a parent when your precious child is first diagnosed with autism.

Most parents feel one of two very distinct emotions: either completely blind-sighted and shocked, or relieved that you finally have some answers. And with both of those emotions comes a certain amount of grief. Immediately you start to worry about your child’s health, about your parenting skills, your other children, your family and most of all, how it will impact on the rest of your child’s life. You worry about their future like nobody’s business.

You want to know that it’s going to be ok and you clutch at straws for a while until you eventually find your feet and one day you realise that you’re easing gradually into a new emotional state. And that state is acceptance.

So you start to seek more information. You want to help your child in any way that you can, and your heart for your child is absolutely bursting with compassion. You put yourself in their shoes and you start to become an expert at predicting possible meltdown triggers.  And if you’re like me: you jump on the advocacy band-wagon with both feet.

You declare that you are going to be a world changer and make society a better place for your kids to grow up in. And damn it…..you don’t quit trying despite the setbacks that you continually face.  You pick yourself up time and time again because that’s just what we do.

And then sometimes, in some families, inexplicably and completely out of the blue: you face major regression and it breaks your heart in two.  Before you know it, you are transported right back to the original emotional overload that you experienced when you were first given that scary diagnosis of autism.

******

Here is our story:

AS far as autism goes – things are plodding along nicely. But it’s the stupid co-morbids that are killing us at the moment.  Common co-morbids with autism are Anxiety, ADD, ADHD, ODD and in Harley’s case: OCD (Obsessive Compulsive Disorder). Harley’s social skills, coping mechanisms and general well-being have taken a very steep nose-dive for the worse lately. His anxiety is through the roof, he is having trouble making or keeping friends at school, his sleeping issues have become uncontrollable and he has regressed into his OCD so far that it’s really starting to frighten me.

At night, he starts to become restless right after dinner. He starts flapping his hands ever so subtly, then he begins to lick his hands and fingers and just generally stars to panic. Over nothing.

Soon the pacing starts.

And then the retracing of his steps.

Three times to be exact.

Counting and re-tracing his steps before he crosses the road.

He simply MUST walk along the same cracks in the tiles. If he doesn’t: he says that the voices tell him that someone will die. And he doesn’t want that responsibility on his head so he does it.

Over and over again.

It’s just crazy.

If he gets up to us at night (which he inevitably does every night), he will go back over his steps from his room down the hallway to ours.

Three times.

So he’ll appear in our doorway then turn around and trace his steps again twice more and then appear in our doorway again.

 (Rinse and repeat for the trek back to bed).

It’s getting ridiculous.

He doesn’t even realise that he is licking his hands. Or that he is damaging them more.

And just today I got the fright of my life when we were crossing a busy road and Harley let go of my hand to run back IN THE MIDDLE OF TRAFFIC to retrace his steps.

He was oblivious to anything but the pressing urgency that was gripping him. I had Lucas holding my other hand and I couldn’t let go of him to go chase Harley and in that moment I knew that I couldn’t save both of my boys and in complete panic: I froze. I literally stood still in the middle of the road and screamed with all that I had in me.

And thankfully, THANKFULLY the on-coming car came to a halt. I sat down in the gutter (kerb) and cried while Lucas happily danced around in circles and Harley started licking his hands (as he does when he is anxious). I cannot believe that this is what my life has amounted to. I am furious that this stupid disorder has robbed my family of such peace.

My boy’s hands are ruined. Look at them!

Red raw, painful and bleeding. A daily occurrence lately.

And yes he uses a special soap free wash. I rub a special cream into them each night and bandage his hands but nothing will work when his hands are washed up to 60 or 70 times a day.

I’ve had to admit that this has gotten waaaaay over our heads. He needs professional help and I have started the ball rolling today by phoning his paediatrician, but the earliest appointment that I can get is almost 3 months away and that just won’t do. At the moment, we would appreciate all prayers and well wishes that we can get and I’m spending my evening tonight googling local psychologists and I will find whatever money I need to find to facilitate this happening sooner.

I’m back in the early diagnosis frame of mind which is really hard but I won’t stop fighting for my boy.

Ever.

Mark my words.

Sanity comes at a price.

It was my birthday last week and my Mum said she had NO idea what to buy me so instead: she took me shopping!

And one of the things that I’ve always wanted was one of those little CD walkmans (Discmans) and some bright funky headphones. So she bought me both and I was absolutely STOKED!

(I think I may have been just as excited as I was when she gave me my very first Walkman when I was a teenager… Ahh…..the memories!)

I wasn’t sure if we would even find one in the shops because they are almost obsolete now with technology advancing the way that it is, but I was determined to find one all the same.

The main reason that I really wanted one was because I have a lot of teaching CDs that I’ve never had the time to sit down and listen to, and it would take me forever to load them all onto iTunes so this seemed like the next best thing to overloading my iPod.

Guess what? Not only did I find one, it only cost a low $44! Nothing like the hundreds of dollars that they went for when they first hit the market back in the 1980’s!

And there is an added bonus to these as well: They block out the incessant whining, screaming, crying and moaning that is an unwelcome constant in this place.

And for me…..you can’t put a price on that kind of peace.

Things have been more than a little rough around here lately. We’ve had problems with all 3 children on different levels and we have struggled as a couple to see eye to eye.

Like I said: Rough.

This week alone we have had some pretty huge fall-outs and meltdowns and Harley’s OCD quirks seem to have returned with a vengeance as have the sleep issues.

In fact, Mum and I were giggling today as we recounted the story to Paul of the night last week that he worked late and we spent literally hours trying to get Harley to stay in his room and sleep.

He had come out so many times one night that I finally resorted to piling up 2 heavy wooden chairs, 2 large suitcases, a cot mattress, a beanbag and cushions in front of his door to stop him coming out and even that only worked for a matter of minutes.

Mum and I took turns walking him back into his bed, reading to him, sitting with him, praying with him, brushing him and rubbing his back only to have him continue to refuse to remain in bed.

Lately, his OCD has extended to his walking in the sense that he has an uncontrollable urge to retrace every third step that he takes and he has to walk the perimeter of each doorway of every room that he enters before he can calm himself enough to actually walk inside. So walking him back to his room was made even more of a challenge by that!

He washes his hands literally 60 times a day so that they bleed and are raw and tender.

OCD in full swing is like something out of one of those movies where the audience laughs at the ridiculousness of the scene.  I remember watching movies such as Crazy People where the characters seemed so far-fetched that it really was quite laughable, but little did I realise back then just how debilitating living with OCD can be for not only the sufferer but their immediate family members as well.

My little Harley often complains that his brain is “full” or that it won’t slow down which causes him great anxiety and angst which usually results in him self harming in some way. (Like the excessive hand washing).

And lately, I think I may have had some insight as to what having a ‘full’ brain might feel like because I have had trouble getting my brain to engage when I need it too.

It has been sluggish but also frantic and somehow all at once?

I have struggled to make decisions (even more so than usual) and have desperately wanted to just escape and get away from everyone and everything.

Simply thinking straight has taken a lot of control and honestly it really seems completely futile because nothing….NOTHING is in my control at all right now.

But in saying that: There is a major difference between Harley’s autistic-ally wired brain and my neuro-typically wired one:  And that is the ability to switch off thought loops and obsessions at will.

I can choose to not think about things that overwhelm me. I can choose not to allow thoughts to override common sense and I can choose not to act out on impulsions.  Right now – he can’t do any of that.

I believe that he will one day be able to do this as well, but it will always be more of a struggle for him because of the way he is wired.

The good news is that he is wired to be superbly focused and intimately knowledgeable about his chosen interests. And this will help him to be amazing at whatever field he chooses to work in when he is older, but the downside is that he will have to learn how to just be.

He will have to learn how to slow down his thinking to give himself and his brain a rest once in a while!

He just needs to find what works best for him.

Writing it out and listening to music and teaching CDs are what work for me. Speakers such as Bill JohnsonDanny and Sheri Silk, and Joyce Meyer help me re-focus and replace the confusion with healthy thinking.

And this is why I so desperately wanted my Discman…..$44 is a very small price to pay for sanity I think.

Obsessed Or Overly Pro-active?

I was sitting chatting with a friend in a café catching up.

We hadn’t seen each other for a while and the conversation was moving along wonderfully. But suddenly she leaned over and said to me gently: “You know you’re kinda obsessed with autism right?”

I raised my eyebrows at her and feigned ignorance and replied: “Really? Do you think so?” While batting my eyelids at her.

“Well….yeah” she replied. “I mean, you write a blog, you have a Facebook page for the blog and all over your personal Facebook page it’s so obvious that you’re an autism Mama. You talk about it A LOT. It’s kind of an obsession for you isn’t it?”

I went home and thought long and hard about this conversation. She certainly had some valid points and I agree that it is a huge part of my life but I wondered about the word “obsession” and if it really was a fitting description. I wondered what exactly obsession means.

So I looked it up 😉

obsession (əbˈsɛʃən)

— n 1. psychiatry a persistent idea or impulse that continually forces its way into consciousness, often associated with anxiety and mental illness

Isn’t that interesting?!

A persistent idea. An impulse that forces its way into consciousness.

Well!….. Yeah, autism IS persistent. It IS sometimes impulsive and a lot of the time it does create massive anxiety in both Harley and in me.

So does that mean that I’m “obsessed” with autism?

Well…whilst I can certainly see how it would appear that way…no, I don’t believe that I am ‘obsessed’. Extremely dedicated, interested, pro-active and keen yes, but obsessed? No.

Sure, it is a huge priority for me to continue to learn everything that I can about autism because it’s important to me to be able to provide exactly what my boys need. I want to be their safe place and their interpreter and translator. And for that to be effective…I need to know as much as I can about what I’m actually dealing with.

I’ve seen it too many times….the well meaning people who try to communicate with the boys but are clearly uneasy around them. And the boys have like a sixth sense with this stuff. They know when someone is belittling them or uncomfortable. They are really smart kids. They may not be able to read body language or facial expressions effectively but they instantly know who gets them and who doesn’t.

And this is why it’s important for me to understand as much as I can about autism and especially how it affects both of the boys differently.

So maybe I do talk about it a lot. I know that a lot of the conversations that I have with people somehow end up being about autism, but when you’re living something 24/7 and rarely get out…you can see why.

Other parents have no qualms sharing about their child’s latest academic or sporting achievement. Why can’t I proudly announce that my 5-year-old actually drank out of a straw without choking. Or boast about my 8-year-old who wrote his first legible sentence in grade 3? How about doing a happy dance because HE HAS A FRIEND! Because they are only small things for parents of typically developing children. But for me and thousands of other ASD parents….these things are huge and worth celebrating! These are things that we always assumed our kids would also do at the age appropriate times but had all but given up on them ever occurring at all after their autism diagnoses… We go on and on about these seemingly small achievements because we KNOW that they are massive leaps of progress in our worlds. It may appear to be a tad obsessive but for us – they are life-changing.

But another thing to remember is that autism isn’t exactly like having a broken leg. I mean, if you were to break your leg in a sporting incident…..it’s something that would inevitably come up a lot in conversation.

People see the plaster cast and they ask questions. They want to know all about the accident. Where did it happen? When did it happen? How did it happen? Can we sign your cast? There are Facebook status updates about it, a few cute photos and people continually ask you how you are managing now that things have changed.

But autism is a life-long diagnosis. And we mamas know that we’re in it for the long haul. Some autism Mamas don’t know that their child will actually be able to live by themselves one day, they know that one day they will no longer be here and their child will need a full-time carer because they are unable to take care of themselves. They lay awake at night worried because they just don’t know what’s in their child’s future.

Autism doesn’t simply disappear after a few uncomfortable months. And that scares a lot of people. But because we know that this is a lifetime commitment for us, we throw ourselves into being the best mother that we possibly can. Some still call that obsession and that’s ok, but when your 8-year-old son comes up and wraps his arms around your waist and hugs you tightly, you will happily wear that label.

And when he says: “ Mum, I know I’m harder work than regular kids. Thank you for taking such good care of me, I love you”…. You can handle being called just about anything in the world! Because moments like that make you realise that it’s all more than worth the tears, sleepless nights and frustrations and you throw yourself right back on the frontline with passion.

Obsessed or not. I’m not backing down.

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

Dr David Feinberg 2007

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.”