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

 

 

Not that kinda mother.

img_7617There’s a certain kind of clarity that comes from being 40. Well, er – 41 actually but I’ve stopped counting. I have decided that I’m not going to get any older, Ima stop right here at this age.

Well, last year’s age, but you know what I mean.

And by clarity, I mean, self-awareness. I seriously could no longer care less what other people think of me.

Yeah, that’s a lie too. I WISH I didn’t care but my emotions preeeeetty much rule this girl.

Yep. Always have done- probably always will do.

And that’s ok.

Anyway – as I was saying, I’ve learned a lot about myself in these past few years and I’m gonna write about it here so I can read back on it the next time I’m in full blown self-hatred mode and rediscover why its ok to be me.

Firstly – I am aware that I am different to most mothers. I am not great at the whole example setting thing.

My teenaged daughter is usually the one telling ME to mind my language and it’s usually her asking ME to get a grip when I lose it. And my boys have seen me in a puddle of tears on the floor holding onto a glass of wine for dear life and then been there to comfort ME more times than I care to admit.

But here’s the thing: my kids know they could rely on me to be there for them no matter what happens, and that I will love them regardless of anything that they could ever say or do.

So I’m calling that a win. I’m not always perfect, but my love for them is.

I may not always operate in complete coping mode but I am capable of being what they need when they need it most and that’s what is most important.

I don’t always make the best decisions when it comes to parenting but I do always apologise when I stuff up.

That’s also important.

Secondly: I’m a better mother when I spend (a metric crapload) of time away from my kids. And THAT’S ok to admit too. It doesn’t make me a bad mother; it makes me real. Not all mothers want to spend every waking moment with their children climbing all over them and obsess about every tiny aspect of their children’s lives. We are all different. I for one go stir crazy when I’m not afforded enough “Fi” time.  And the result of that’s not fun for anyone. BELIEVE me. Working outside the home with long hours is what keeps me sane and helps teach my children the independence that they may not have learnt had they not have been forced into it. I’m not gonna feel guilty about that anymore either.

It’s wonderful that some people can post all over social media about how much they LOVE school holidays and simply ADORE having their offspring home and post album after album of beautiful photos of the amazing artwork, craft creations and outings they have done with the neatly dressed, intelligent, well behaved children, – but that’s not me (or my children) either.

No.

Not even close.

It’s taken me a loooooooooong time (and I’m not there yet) to be ok with the fact that I am not like those mothers.

I abhor craft, I don’t have an artistic bone in my entire body and going ANYWHERE further than the corner store with two autistic boys makes me want to stab myself because it is a hell that most people won’t ever fully experience.

And here’s why:

My kids have zero executive functioning skills. Know what they are? They are the skills that allow kids (or adults) to exercise mental control and be able to regulate themselves.  These skills are easily learned and eventually instinctive in neurotypical (or normally wired) individuals and most kids have them down pat by about ten years old.

And by self- regulate I mean, to be able to make decisions for themselves, to instinctively understand what is expected of them in public places and to know how to self-entertain, behave appropriately and in their own best interest.

Put simply:  because my boys are autistic and don’t yet have these skills mastered, a simple outing usually ends in one or both of my boys hitting/punching/kicking/poking/slapping each other in the nether region or screaming out something to the tune of:

“I’M BORED AND HUNGRY AND I HATE YOUR HAIR MUM AND YOU SMELL LIKE BUTT AND YOU’RE THE WORST MOTHER EVER BECAUSE YOU WONT BUY ME A NEW GAME AND WHY CAN’T I HAVE THIS CHOCOLATE AND WHY CAN’T I GO TO THE TOILET RIGHT BLOODY NOW AND WHY CAN’T I GO HOME WHERE MY PLAYSTATION IS BECAUSE YOU KNOW I HATE GROCERY SHOPPING AND WHY ARE YOU SITTING IN THE CORNER OF THE SHOP ROCKING AND SOBBING MUM WOULD YOU LIKE ANOTHER WINE?”

Or, you know, something like that.

And when I remind myself that most mothers stop dealing with toddler tantrums at around the age of 5 and that I am still dealing with them in 10 and 13 year olds I remember to stop comparing myself to the mum who took her four beautifully dressed children on a thirty six-hour car trip to see the beach on the other side of the country and stopped at every boutique café along the way because that isn’t – and will never be – my life.

Plain and simple.

It’s not even comparing apples and oranges but instead comparing apples with mutant kiwifruit cross bred with an exotic rambutan and bitter melon (they’re real fruits – google them).

But I don’t want you to feel sorry for me. Just don’t judge me for not being even close to having my ducks in a row.  In fact, living this ridiculously insane existence has afforded me a sense of humour that I never knew I had before, and it’s taught me to never ever EVER take anything at face value.

There is ALWAYS more going on in everyone’s lives than what they post on social media.

I’m learning not to compare my off-the-planet home life to Susie homemaker and have come to the realisation that not everyone is as brutally honest as I am.

I may scare a lot of people off with my honestly because it’s often confronting and raw and uncomfortable, but it also filters out anyone in my life who isn’t willing to stick with me through the darker days and has shown me who I can trust and who only wants to be my friend for what they can get from me.

So thankyou to anyone reading this because it means that you’ve stuck by me and I love you and appreciate you more than I could ever convey.

Have a great weekend all. I am spending mine taking my son to the hairdresser to fix up the home hair cut he gave himself (those darn executive functioning skills to blame again).  Or lack thereof.

Haha.

The rocking horse …

I’m a worrier. Always have been, it’s kinda my ‘thing’. I’m not proud of it, and next to my tendency to over share and to talk too much – it’s my most hated personal trait.
One of the things that has been bothering me a lot lately may seem small and insignificant to some, but I’ve struggled a lot with it and am still trying to figure out the best way to move past it. And that is friendships. Specifically- for my boys.
Lucas has been catching the bus home for a long time and whilst there were some teething problems, he seemed to be handling it quite well. But recently he has been coming home quite distraught and adamant that everyone hated him. It took a lot of directional questions and detective work on my part, but I finally got to the bottom of this alleged bus bullying and it was a hard one for me to stomach.

My boy in all his aspie glory took it upon himself to self-nominate as the ‘bus monitor’. Which, in plain terms means that he decided that snitching on all the other kids who weren’t following the rules was his personal responsibility.

So, any child eating on the bus was awarded a mark against their name in his notepad, as was anyone swearing, standing up or ‘being a bully’ and he took his self appointed job very seriously and carried his notebook into school every morning to report to the teachers what he had seen on the bus the previous day.

Clearly the other kids were not huge fans of this and the rest is pretty easy to figure out.

Lucas is turning ten this year, and sadly – his quirky little ways aren’t as endearing to other kids as they once were. Kids are quicker to point out his differences and he responds to this with aggression.

Sigh.

And then there is Harley.
I worked DAMN hard to get him this placement in an autism class and I stand by my decision. He needed this because he was drowning in mainstream and I truly believe he’s in the best possible place for the rest of his schooling. But that comes at a price.
And the price is socialising.
Since he has been in his placement, he is surrounded by other children with varying levels (for lack of a better word) of autism. And that’s great – but it’s also not.

Because at lunch and recess and sport and PE and pretty much every extra curricular activity that his class is involved in- he is surrounded by other children who also have massive social delays and enormous anxiety. They are all given the option to stay in the ‘safe playground’ (which is a concrete area with seating attached to the unit they attend) or to play in the ‘regular playground’ which is where the rest of the high schoolers hang out.

No prizes for guessing where they all end up.

And all of them ‘want ‘ friends, but none of them have any idea how to go about making them. And that’s sad. None of them understand how to initiate conversations and because they’re not choosing to mix with the rest of the school- they aren’t learning vital social skills to survive in the big bad world. This bothers me greatly.

As much as I want to wrap him up in cotton wool and tell him that he can stay my baby forever- I know that I am doing him a disservice by not encouraging him to do the hard things and teaching him those social skills that he will be expected to display one day in the workforce.

Harley comes out of school most days and talks animatedly about the boys in his class and what they did at lunch time and the games they played in class and he talks fondly of the other boys, but he has absolutely no idea how to foster friendships with any of them and truly believes that they aren’t his friends and don’t actually like him.

And I’m left wondering how to teach these skills to my boys when they only have each other and don’t really have any ‘typical’ friends to teach them about having mates or being socially appropriate etcetera etcetera.

I worry that this is my fault because I never involved them in any sports. (I offered but they weren’t interested). And I never forced them into play dates or social functions that they clearly didn’t want to attend.

I even stopped requiring them to go to church because the fall out afterwards from the sensory onslaught was becoming too much for ANY of us to deal with.

And because it’s ‘my thing’ to worry, I lie awake some nights angry with myself for not fixing any of this earlier – or some how preventing it and I beat myself up for being a crappy mother.

I worry that they are going to be dysfunctional adults and that I would’ve caused it through neglect. And then my mind starts to go places it shouldn’t.

Eventually I drift off into fitful sleep and wake up the next day drained and beyond tired.

But here’s the thing: I really do know better. I know deep down in my heart of hearts that this will all somehow work out.

Because they’re God’s kids and He won’t let them sink. They may go through any number of storms in their lives but He will always be in the boat with them telling those pesky waves to quieten down and the raging waters to calm.

Like He does for me.

All. The. Time.

As my dad used to say: “Worry is like riding a rocking horse. You can ride it like crazy but it doesn’t actually get you anywhere, all it does is wear you out and steal your joy”. 

I just need to be reminded occasionally.

My girl was the cutest little rocking horse rider you ever did see

Matthew 11:28-30

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.For my yoke is easy and my burden is light.”

Guilt

Mother guilt is pretty much a given when it comes to motherhood. Its just a part of the whole deal.

I’ve had my fair share. Sometimes it comes from pressure that I put on myself and sometimes in comes in the form of comments from other people, friends, family or even the kids themselves.

I try to maintain a healthy work/home balance but I’ll be the first to admit that I’m actually pretty crappy at it. In fact – I totally suck at it.

I have spent the past I don’t know HOW MANY years advocating for Harley and trying to get him the help that he needs in the school system at any cost.

I did everything I could think of to help him manage better at school and spent years paying for countless therapists to try to encourage some sort of progress on paper, but all I kept seeing was a defeated and sad little boy.

He has always struggled to read, to write and with maths. Actually, he has battled with pretty much every element of school life. The socialising would still be the part that he has the most difficulty with but being that he is autistic- that aint about to magically change anytime soon.

We were driving to school last week when he oh-so-casually mentioned to me that his teacher suggested that he gets his eyes tested because she noticed him squinting at the board and also at his workbooks.

“How long have you had trouble seeing honey”? I asked him.

“I’ve never really been able to see much” he replied.

Um. Ok.

So I took him to the optometrist that very afternoon to learn that he also has the beginnings of the same eye condition that has plagued me for most of my life (but hopefully it will be able to be corrected in time so it doesn’t reach the point that mine have).

Blind as a bat I believe the technical term is!

And to think that it didn’t even occur to me to get his eyes checked – cue the mother guilt … in spades…

I took the afternoon off work today to go with him to collect his new glasses and was almost in tears as he excitedly skipped through the shopping centre reading out every shop sign and describing to me everything that he was seeing in great detail.

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I asked him on the way home why he hadn’t told me earlier that he couldn’t see well and his answer damn near broke my heart.

“Because I just figured that everyone else was seeing the same as me but I thought I was dumb and that they were just smarter than me.”

I glanced at him in the rear view mirror and noticed him look down at his feet.

“Plus, I didn’t know what to say to tell you Mum. I couldn’t find the right words to describe it, and I knew that you have to work really hard for our money and I didn’t want to waste it on glasses because I know you can’t really afford it”.

I was gutted.

Sure, I’ve had to say no to the kids a lot lately because bills often eat up the majority of my pay, but I had hoped that he knew that I would’ve done whatever it takes to get him what he NEEDS.

But I managed to sit him down this afternoon and explain that I will always find a way when it comes to my kids. And that I was so super proud to have him as my spectacular spectacles buddy.

 

Day one ..

Today my first-born son started high school!

I know right?

I hashtagged #sayWHAT? On Instagram underneath the photo of him all dressed this morning because I can hardly believe it myself!
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But I suppose it had to happen eventually, he is turning 13 this year (ugh – not coping with the thought of having TWO teenagers in the house).

We arrived at the school nice and early and hung back from the other waiting hordes of kids, noise and chaos and I watched Harley closely for signs of anxiety or tension but was pleased to see just pure and genuine excitement instead.

It wasn’t long before a girl from his class (who I recognised from the transition program) nervously walked over and stood beside me and asked if she could wait with us.
“Of course Natasha!” I said and realised immediately that my incredible memory for names still kinda freaks people out!

She instantly relaxed and leaned her head on my shoulder and I immediately recognised the sometimes-autistic trait of invading personal space. It was fine because I’ve walked this path for so many years now that gorgeous little quirks like this now make me smile instead of alarming me and I just roll with it.

Harley (seeing her ease with me) warmed up to her and eventually the two of them walked over and sat on the stairs together and waited until the bell went.

So I waited a little longer before realising that he was going to be fine without me and walked back to my car feeling as though I’d been gut punched!

Which is weird: because years ago (when he had to be literally pulled off me kicking and screaming) I would’ve given ANYTHING for him to show a little independence but now that he is able to do things on his own – I found it disconcerting and unnerving because I hadn’t realised just how much I need to be needed til now.

I climbed into my car and sat there motionless for a little while before deciding that work was gonna have to wait and I drove to a nearby coffee shop to meet a friend so that I could have a cry and a much needed brain dump.

I sat there and spoke about everything I’d declined recently. The coffee dates, the party invites and movie nights and the school events that seemed to be never-ending, and I realised that none of it really mattered to me at the time because my mind was ever consumed with ensuring that my precious boy was properly taken care of.

I let my own health nosedive, I started drinking far too much and I let great friendships dissolve because I didn’t put enough time or effort into them.

I hurt other people…..

And realising all of this made me really sad.

Because I can see now that I didn’t do a very good job of letting God carry my burden, and I tried to take on way too much myself and then wondered why I ended up in a soggy mess being no good to anybody.

But having said that- I don’t know that I would do things any differently should I have my time again.

Because my kids really do mean THAT much to me.

They will ALWAYS come first and I will always do whatever it takes to get them what they deserve. But I need to figure out a way to do it with more balance. I need to get a better perspective and I need to learn to function better under stressful situations so I don’t keep falling in a heap.

Because all the months of advocating, and petitioning and jumping up and down to anyone in authority have inevitably taken their toll on me.

But they paid off big time. My boy is now safely in an autism unit receiving the nurturing care and education that he was deprived of for so many years and that in itself is worth celebrating.

 

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He arrived home this afternoon with a big smile on his face and a skip in his step and told me all about the new friends he’s made and the love that he has for his teacher and I for one – couldn’t be happier.

Oh – and I made two new mum friends at the school gate while I waited for him! So that’s a plus!

Friendship and the Special Needs Parent.

You’d have to be living under a rock to be unaware of the struggles that we are having in this house at the moment; in pretty much every area. I remember being told when Harley was first diagnosed that as he got older that some things would get easier and that other things would become harder but that in one way or another, life with autism will ALWAYS present challenges of some description.

At the time I thought that it was shallow comfort but I can now see exactly what was meant by that comment.

For example; three years ago, we had a big challenge with Harley chewing all of his clothing until it became unwearable, and the vocal stimming and tics that he indulged in used to drive us mental! Even the massive anxiety and panic attacks that he had whenever I took him to a supermarket were heart wrenching and frustrating, so yeah – I guess that we’ve come a very long way since then in those particular areas.

But as the paediatrician told us 6 long years ago, things would become challenging in OTHER areas instead.

I suppose that what I’ve taken from that is the knowledge that autism will be something that will determine most of our decisions and circumstances for the rest of our lives. It isn’t something that the boys will ever grow out of, they will just learn new ways to cope with situations and discover ways and methods that work for them.

I’ve certainly had to learn to pick my battles and for the most part, I’m ok with all of that.

I’ve had my time to grieve for the futures that I thought I wanted for my boys and have allowed my thinking to be shaped by the circumstances that ARE instead of what ‘might have been’. I’ve laid down my sadness and confusion and allowed acceptance to inhabit its place instead.

There has been a lot of soul searching and tears to reach this place mind you – none of this happened overnight. You don’t live through six years of the hugest learning curve imaginable and come out the other side without enormous life experience I can tell you!

Most of the things that challenge me these days are related to other people’s opinions and ideals that they project onto me regarding my choices regarding raising my autistic boys more than my own self-doubt.

I wrote a post about three years ago when I first started this blog and outlined three categories that I have had to put my friends into to help me to realise that some people will always remain acquaintances.

Here is an excerpt from it:

Autism is a scary word. Even though it’s not contagious and it is not always an obvious disability – it is ALWAYS there.
I’ve categorised my friends into 3 main groups at the moment.

1. Those that are also on the autism highway and totally and completely “get” me and my life.
2. Those that don’t necessarily live my life but are willing to learn more and gain a better understanding of autism and can therefore support us through thick and thin
And then there’s the 3rd group:
3. The people that I had friendships with once but no longer have them due to their judgmental attitudes and refusal to see that my child(ren)s behaviour isn’t due to lazy or inconsistent parenting. There are also people that I meet that instantly go into that category …..sadly.

It helped me to deal with the fact that I had lost close friends post diagnosis because they simply couldn’t deal with my life and that I was continuing to have people who I thought cared about us keep drifting away.

That’s another part of this whole ‘things will always be hard but in different ways’ thing that I referred to at the beginning of this post.

Becoming a parent of a child or children with special needs is one of the greatest friendship sifters known to man. I don’t believe that it’s always a deliberate thing but more of a case of people just not knowing what to say or how to help.

And of course every family is different and needs vary from child to child.  I try not to react when people say “I don’t know how you do it – I couldn’t” because I wasn’t exactly given a choice in this either.

That may seem like a reasonably benign and possibly encouraging thing to say but it comes across as the exact opposite. What I hear is: “Thank God I don’t have to live your life”.

I may seem a little harsh and difficult to please here but please believe that this is not my heart. I am not angry, bitter or even disappointed in anyone but I have had to mature in this area and realise that there will only ever be a small handful of people (if I’m lucky) that will truly “get it”.

I can only speak for myself but I can honestly say that I’m not looking for friends who say the right things and devote hours and hours to checking in with me. I don’t expect that. I know that everybody has busy lives and their own issues to deal with, but I struggle a LOT with friends who only want to be around me in the good times and run scared during the heartaches.

One of the BEST things that a friend said to me recently was: “I don’t know what to say, I don’t know what to do, I don’t know HOW to help and I can’t be there for you physically but I want you to know that I care and I’m praying for you.”

That touched me so deeply.

I need friends who are willing to sit with me in the trenches (not physically – I have friends interstate, hours away and even overseas) and allow me to offload without firing solutions at me and trying to “fix” everything.  I need friends who won’t just tell me that “It’s ok, everything will work out” then uncomfortably change the subject.

I get that not everyone can handle the tears, the meltdowns and the anger that often pours out of me and I know that there seem to be a lot more of the harder times than easier ones right now but unfortunately – this is the season that we are in.

I‘ve had to delete my Twitter account, post minimally on my Facebook Page and will soon be culling a lot of onlookers from my Instagram account because I just simply don’t have the brain space to keep putting into one-sided friendships that aren’t serving me right now.

I’ve had to learn to be choosy over who I give my time to these days and instead of feeling guilty over that – I am going to be thankful for those wonderful people who are still in my life who continue to build me up and meet me exactly where I’m at.

I wouldn’t change you guys for the WORLD.

First rule I’ve adopted for my life? Be kind to ME.

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

 

20 Year School Reunion: Memories lost

reunionTimes change, people change and time changes just about everything. I believe that memories can fade but that they are not necessarily wiped forever. I believe that we keep the best memories protected and allow the insignificant ones to be pushed to the backs of our minds to allow the more important and prevalent ones to take their place.

Our brains are fascinating and extremely complex pieces of machinery. Very cleverly designed to file and categorise information with a fine tuned retrieval method that allows us to access the memories that we need when we need them most.

Well….in most cases anyway. It’s important to remember though that I’m not writing about the autistic brain here because that is a whole other blog post. I’m writing about me and my neuro-typically wired brain for the purpose of this particular post.

Recently, I was put in a position where I honestly started to believe that I was literally losing my mind and it sent me into a late night google marathon where I learnt what is REALLY going on with me right now.

Last weekend, I attended my 20 year school reunion. I had the usual butterflies as I climbed the staircase mentally preparing myself to walk into a room filled with my past but they were quickly squashed when I saw my first familiar face.  I walked over and hugged the smiling young woman in front of me who hadn’t changed at all, and we started chatting about what we’d both been up to. I looked around the room and spotted another couple of vaguely familiar faces and a lot that I didn’t know at all.  I told myself that they must be the partners of people that I’d gone to school with but still – I couldn’t shake the uneasy feeling that had started to wash over me.

A guy walked past and kissed me on the cheek and said “Hi Fiona, great to see you”. I smiled and returned the greeting before turning to my friend and asking her “Who the heck was THAT?”

She grinned – “I’m pretty sure the two of you dated at some point” she giggled and told me his name.

“Oh WOW” I replied. “I can’t believe I didn’t recognise him”.

I mingled for a bit and talked to several different groups of girls – most whom I had no trouble remembering because I still stay in contact with them.  I spotted my high school crush walk into the room and my knees went a little weak when he hugged me but I know it was nothing more than silly childish memories. Still – it was one of the highlights of my night lol.

I walked over to the bar to order another drink and stopped on the way to chat to a girl who I used to live up the road from me.  She launched into the “Do you remember this? Do you remember that?” routine as I nodded and smiled all the while becoming more and more uneasy about my incredible loss of retrievable information. I honestly couldn’t remember a single damn thing that she spoke about and with that added to the mass of unfamiliar faces around that room, I was beginning to feel a little squeamish.

I took myself outside for a walk and I walked up and down the main street of my beloved home town twice trying to figure out what the heck was going on with my brain.  The cold air hit my arms and I started to shiver but I wasn’t ready to return until this all started to make some sense to me.

I asked myself; “What is wrong with me? I’ve ALWAYS been great with names and faces? Why can’t I remember a huge chuck of my school years or the people who were in it? “

I thought about how I didn’t recognise a SINGLE teacher from school who was attending that night and even when their names were mentioned to me – I couldn’t recall what they taught nor if I was in any of their classes. I wandered back to the hotel and went back inside. No-one had seemed to notice me gone so I felt better and less conspicuous than before.

A group of friends headed over and we all posed for a photo giggling and right then I decided to stop worrying about something I couldn’t do anything about and determined to just relax and enjoy myself.

I was surprised that I wasn’t asked the question that I’d been dreading “What happened to your face?” too many times though I did notice people looking at my dropped mouth and cheek questioningly. I told a few people about my brain and corneal surgeries but for the most part, I kept that info under my hat.

I went home that night happy and thrilled that I’d gotten to see so many great people again. I swapped numbers with a few and vowed to make the effort to meet up with those who live near me. I feel asleep almost instantly that night – I was exhausted!

The very next morning, I woke my daughter and we drove up to my old high school to take the tour. We all chatted while we walked around and the uneasiness started to creep over me once again. As people reminded me that we took classes together and joked about events that had occurred during our school years I was at a loss to remember anything again. I walked past classrooms that I couldn’t place and stared into spaces that meant nothing to me. The vast majority of my high school years seemed to have vanished completely from my memory and I had no idea how to get them back again.

I drove home disheartened and went onto Mum’s computer and opened Google. I typed “memory loss” into the search engine and waited. I sifted through countless articles looking for something that would ring true with me when bingo – I found this

Stress is a large factor in long-term memory loss.

“I have stress in my life” I yelled triumphantly and read on.

 Other causes include: brain trauma and/or surgery, anxiety, sleep deprivation, illness or extreme conditions whereby the patient is consistently subjected to conditions requiring hyper vigilance or attention to detail.

I began to feel a WHOLE lot better because all of that pretty much describes parenting on the autistic spectrum in a nutshell!  Add to that my 13 hour brain surgery, loss of my Dad and the enormous grief I experienced (and still do)  and the marriage-on-the-rocks situation than I’m currently in and the answer to my memory loss was staring me down.

Put simply, I learnt that because my days require me to constantly be thinking ahead, planning in advance and staying one step ahead of autism, I’ve had to shift my focus onto those things entirely to ensure that I am constantly on the ball.

Every morning I mentally list everything that needs to be done that day and then prioritize them. I must have at the ready an escape plan if things go awry, be aware of the different ways in which each child needs to be approached, be mindful of triggers and try to avoid them, be on the watch for signs of distress, plan the next few hours ahead allowing for changes and have ways to navigate them as smoothly as possible at the ready as well as everything else that a regular mother has on her mind as well. Then I have to physically dress my 10 and 7-year-old sons because they lack the fine motor skills to do so and all the while get myself ready and out the door by 8am.

It is all just so mentally and physically EXHAUSTING!

So my brain hasn’t actually erased those memories of my high school years, it has merely filed them into “not important right now” so that all the many millions of snippets about autism, OCD, Aspergers, structure, routine, ADHD etc etc can be more readily accessible.

I can’t tell you how relieved I was to discover that I’m not going crazy. It was such a load off to learn that my brain was actually in a kind of self-protection mode and not actually malfunctioning at all!

But the thing that brightened my day most of all was when I read this:

When a patient has long-term memory loss, he has problems recalling stored memories, not creating new memories.

So excuse me while I go and play with my kids and create some new exciting and hilarious memories for when I’m old and grey so I can share them with my own grandkids.

But not until after I’ve had a nap ..yawn..

How much longer?

I wrote this poem a couple of years ago but this is the first time it’s been published on this blog. I wrote it as a contribution for a parenting blog that published it in a series on humour in parenting. But that blog is no longer running so I thought that since it is school holidays here at the moment, it is very fitting to share it here.

Holidays are here at last,

The mothers all proclaimed,

Preparing for their little ones,

With craft and food and games.

.

Imagining their sleep-ins

And the lazy days ahead,

They made no plans deciding that,

They’d wing it all instead!

.

The first week was the hardest one,

The kids were out-of-whack,

Adjusting to their new routines,

But soon they got on track.

.

They learned where Mamas hid the craft,

And where she stashed the treats,

They figured out which button to push,

To make their mothers shriek.

.

The kids knew tricks to set her off,

And how to get their ways,

They’d fight and scream and argue a lot,

Knowing persistence always pays!

.

The kids would wake at unGodly hours,

But couldn’t be up alone,

They’d come in and they’d beg for food,

In that narcissistic drone.

.

So mother’s thought “I know a trick,

I’ll take them out instead!

The fresh air and the scenery,

Will clear their little heads”.

.

She drives them to the local park,

Her car packed full of balls,

And bikes and helmets, scooters and stuff,

She doesn’t really need at all.

.

A picnic that she packed with love,

Has come along for the ride,

Cos the kids all gagged and refused to eat,

Once they saw what was inside.

.

So they’d all go home and soon they’d start,

To follow their Mums around,

And start the chant that mothers all HATE,

The most annoying sound!

.

I’m bored, I’m bored , I’m bored, SO BORED!

I’ve got nothing to do,

There’s nothing on the stupid TV,

And the wii is annoying me too.

.

I don’t want to read, I don’t want to craft,

I’m not watching that stupid show,

I HATE to cook and painting is dumb,

How many more days to go!?

.

So mother goes into the kitchen and,

She pours another cup,

Of coffee or tea or whatever it is,

That helps to pick her up.

.

She looks at the fridge to the calendar there,

And starts to regain her cool,

Because circled in red with love hearts drawn,

The words: ‘Kid’s go back to school’!

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Beauty Will Rise

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Springtime has long been linked with new beginnings and the end of a cold, dark oppressive period. (The winter) I was looking over some old letters today (because I’m very sentimental like that) and came across a beautiful ditty in a card that my best friend’s Mum wrote to me about this time two years ago. It still very much speaks to me.

It’s in the winter that the trees shed their leaves, and look bare and even unattractive.  However, under the ground the roots are drawing nutrients, growing bit by bit, and becoming more secure and able to hold the following spring’s “leafed tree” more securely afterwards.  I remember telling myself MANY times: “In the winter, the roots go down.” Spring is on its way!!!

I was reminded of a song written by Steven Curtis Chapman following the untimely and accidental death of his daughter Maria.

The tragic loss almost caused him to quit the music industry and give up completely. But during the grief that he endured in the many painful months afterwards, he wrote the song “Beauty Will Rise”

‘Cause I have seen the signs of spring

Just watch and see

Out of these ashes,

Beauty will rise

And we will dance among the ruins

We will see it with our own eyes

Out of this darkness

New life will shine

And we’ll know joy is coming in the morning

He didn’t give up nor did he allow difficult and painful circumstances to shape him or dictate how his future was going to be.

He chose to allow beauty to rise from the ashes of death both physical and metaphorically.

It is September and the first official month of Spring here in Australia and I am starting to see new life sprout in the form of progress in my children and a new hope for my future. During the winter periods the roots DID in fact go down, in fact, they went down very deeply. They have been drawing nutrients and life saving water reserves and already I’m starting to see newer and fresher foliage appear.

 

 

Psalm 1:3 He shall be like a tree, planted by the rivers of water. That brings forth its fruit in its season. Whose leaf also shall not wither; And whatever he does shall prosper.

 

I can’t help but be excited about whats in store for us.