Brutal honesty and self-talk.

 

Someone sent me a quote the other day and I loved it so much that I put a paraphrased version of in my Instagram bio.

It says:

“Parenting is the most rewarding thing that has ever completely destroyed my sense of self.”

And those couldn’t be truer words for me.

I’ll strip it right back to the bones: “Parenting is the most rewarding thing

Yes. Absolutely it is.

It can give me chills (of the good kind) it can make me laugh and it can give me the greatest sense of accomplishment I’m ever likely to experience.

Watching mini versions of myself running around is amusing, wonderful, heart-warming but also somewhat frightening. When my child achieves something whether spectacular or a smaller personal progression, my heart swells with pride and I also get to feel some of that euphoric feeling they’re experiencing.

There is a part of me that takes ownership for their success and I become so happy for them that I feel as though I could almost burst. I pat myself on the back and mentally list off all the ways that I helped them to reach their goals and the emotions can be simply overwhelming.
When one of my kids succeeds – I feel as though I have finally done SOMETHING right in raising them and the self-talk is usually kind, compassionate and positive.

(But I do have this warped idea in my head that I will somehow be more acceptable to society when my kid is seen to be “one of the good ones).

And when one of them is hurting– I also go through similar pain to what they’re experiencing and it’s hard to separate my own feelings from the truth of the situation in front of me.

This happened a lot when my daughter as younger. She was bullied for a while in primary school – as was I – and it took me back to my own past hurts. To this day, I still struggle to be civil with the girls involved in tormenting her.

I was only chatting with her about this the other day and she told me point blank that I need to bury the past, get over it and move on. (She’s very different to me in this way. She’s a far less emotionally-led person than I am and a lot more matter-of-a-fact about these things).

And she was right.  If she has been able to forgive and get past this, why then can’t I?

Because: so much of my time and compassion and love was invested into helping her through the horrible years that I forgot where to draw the line between caring and taking it personally.

I believe that this is a common parenting mistake for a lot of mothers.

I’ve also done it with my boys concerning societal judgments on their behaviour (whether that was incorrectly perceived by me or the criticisms were real). I’ve gone all psycho-mum on educators, doctors and family members/friends when I’ve thought that my kids were hard done by or ripped off in any way.

I’ve stepped waaaaaay over that invisible line and I’ve come out swinging because my emotions told me that it didn’t matter whether I was right or not, it only mattered that I was seen to be fighting the good fight.

And now to the second part of the above quote: “completely destroyed my sense of self

To me, that means that the very same child that can cause me to reward myself with kind, compassionate and positive self-talk, can also cause me to hate on myself with toxic venomous judgmental words that I would never ever direct at another living person.

Like EVER.

Because I know that words can bring life or be a destructive force. I just don’t seem to value myself enough to withhold such harsh judgments from me.

Let me explain:

If my child doesn’t listen to me and shouts at me and calls me unspeakable names; instead of me just recognising that my child is being a jerk, I instantly blame myself for not having taught them better ways to manage their anger.

If my child gets in trouble at school; I’ll give myself a major dressing down because I tell myself that I probably should have better prepared them better for a situation such as this. I tell myself that I’m a failure and that I’m not present enough in their lives and that it’s all my fault that they’re being a dickhead.

The reality is that sometimes, they really ARE just being dickheads. And that’s a fact.

When my kids fight with each other, I reprimand myself and assume that they’ve only learned this because they watch their father and I tear strips off each other on a frequent basis, and I tell myself “Oh well Fi, I guess they’re only doing what they’ve had modelled in front of them for years”

 And it’s like a vicious cycle.

But the reality is that my kids are probably no worse than any one else’s kids. The difference is that I constantly compare myself to other parents and most of the time; what I’m seeing is only a small snippet of what really goes on in other households.

Or it’s what has been presented to me.

Because I’ve discovered that most parents just aren’t as candid as I am. Most parents only show the highlight reels and cover up all traces of them stuffing up when dealing with their offspring.

I get that, really, I do. I get that airing dirty laundry in public makes others uncomfortable and can sometimes make for some awkward conversations and predicaments. But I’m not talking about that. I’m not talking about hanging your kids out to dry (see what I did there? – the laundry reference?)

I’m not saying that we all need to compare horror stories online of what our kids have done wrong. I don’t think we need to shame them- especially publicly. Our job as a parent is to protect them- not tear them down. But admitting that sometimes we – as parents have missed it, or stuffed up, or even reacted in the exact opposite way to how we should have, doesn’t mean that we have failed as parents.

It just makes us real and honest. And that’s a very healthy place to be if it’s used correctly: to better yourself and learn from your mistakes.

I’m talking about the idea that social media seems to have purported that we are only allowed to show our successes and our wins. That we’re supposed to bury the messy, gritty and downright soul destroying parts of parenting down to depths never to be seen, and make everyone believe that we have are shit together and we are sailing along calm waters all the time.

Because all that THAT does is make parents like me second guess ourselves and wonder what the hell WE did so wrong to have to battle the situations that no one else seems to even understand, let alone live when the reality is that everyone of us have struggles but only some of us own them.

Most one-on-one conversations I have with other parents (particularly mothers) usually go along similar lines to this:  “Wow Fi, thank you for admitting that- I know EXACTLY what you’re talking about, I totally agree with you and your honesty is refreshing, I wish I could speak so openly about that but ….”

And then when I ask them why they hide behind their pretty pictures and captions they tell me that they’ve learned to shut up and ‘smile and wave’ as the saying goes. Just fake it and hope like hell that people are buying it.

And I think that’s sad. Really, really sad.  Because if you can’t be honest about where you’re at – nobody knows how to help you.

Occasionally I’ll have a day where I’m tearing my hair out, I’ve exhausted all my patience and have hit a brick wall emotionally when it comes to parenting. And sometimes on those days, I used to post a picture or quote on Instagram.

On those days, I could usually predict who would avoid me like the plague and who would comment, like and rally alongside me. I was usually correct in guessing the texts, DMs, and phone calls I’d receive and it never failed to amuse me when someone would passively aggressively post immediately afterwards a quote or caption that was intended to put me in my place.

Or worse: they’d make a point of coming and talking to me in person because they were “concerned” about my mental health and how I was coming across. A few times I was told that they were concerned about my children’s wellbeing. I can tell you that this is like waving a red flag to a bull with me – (don’t EVER allude to the fact that you think I’m an unfit parent just because I chose to be real).

It was like they were saying: “How DARE you use a social media platform to garner sympathy or whine about your life. How dare you be so forthright and in my face when all I wanted was to come on here and look at the pretty sunsets and happy families.

But I got rid of all those phoney followers long ago. I didn’t need their judgments (I’m harsh enough on myself!) and I have realised over the past few years that they were in fact the ones who were struggling the most.

I have been scared away from the internets on more occasions than I care to admit but gradually I am becoming a lot stronger and surer of myself.

The Case Worker I have just acquired has been counselling me and showing me how damaging my self-talk has been in the past and she’s been encouraging me to ‘give myself a break’.

I am learning to step back from any situation where I feel as though I have failed my kids and talk to myself as though I were talking to a friend. She’s having me roleplay and speak out my responses so I can hear for myself how damaging my own words have been all these years.

Here’s an example:

My little one was very sick last week.  But I missed all the cues and all I saw was the revolting behaviours and aggression during the days leading up to it. When his teacher sent him home with a spiking fever and a throbbing headache and sore throat- I suddenly realised that all his meltdowns and outburst were because he felt crappy and didn’t know how to tell me. His behaviour told me, but I wasn’t able to see past the shouting and the kicking and the defiance. It was autism 101 and I totally missed it.

My case worker asked me to imagine that my friend had called me and explained the above paragraph. She asked me how I would respond to my friend in that situation.

Easy.

I would tell my friend that it wasn’t her fault. That she is too close to the situation so was unable to see the signs. That she can’t be expected to get it right every single time but that it doesn’t mean for a second that she’s a terrible mother. I would tell her that she’s an incredible mum and that even realising in hindsight is awesome and that she should be proud of how far she’s come. I would tell her that I can see how exhausted she is raising these kids whilst working long hours and that she needs to give herself a break.

Lastly; I would tell her that I love her, that I’m always here for her and that I believe in her.

Self-talk.

It’s totally a thing, and my goal this last 6 months of 2017 is to learn to love and care for me better because no one else is going to do it.

If you’ve gotten this far- through the 2000 + words and are still reading; I thank you.

I hope this weekend is kind to you.

X

 

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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.

You raised me right.

Hey Dad,

You would have turned seventy this month. That’s right 7-0.

Seventy on the seventh.

I still remember your face when your walked into the restaurant for your surprise 60th that Mum threw for you.  I remember the tears of gratitude that filled your eyes as you looked around the room and saw all your family and friends sitting there just to celebrate you. I never imagined that it would be your last big party.

To be honest – I am still pretty angry that you had to leave us.

I know that eight years on people are probably thinking that I should be past the anger stage by now, but every now and then it comes in like a giant tidal wave and completely wipes me out with such intensity.

And I never ever see it coming so I’m never fully prepared.

I never used to swear this much. And I never used to struggle with the massive anxiety that I have had ever since the strongest and most loving man I ever knew closed his eyes for the last time on this earth.

Death really sucks big ones.

Right now, it’s Sunday afternoon and I’m sitting in my driveway in my car that’s got an empty petrol tank that I couldn’t be bothered filling.

The engine is on and I expect it to die very soon but I need the air conditioning turned on because I can’t open the windows due to the shouting I’ve been doing, and the manic banging of my fists on the passenger seat in total frustration.

Its all slightly insane but oddly cathartic to be so geographically close to my family but so far away emotionally.

They haven’t found me yet and I’m not ready to go inside and adult or parent. I want to get this out of me before I explode and end up hurting someone else by reflex.

The grief is crippling me at this moment and I just don’t know what else to do with it so I’ll scream until I lose my voice or one of the neighbours calls the police.

I kid of course .. Writing to you is calming me. It’s helping me feel heard and valued.  It’s allowing me to purge this anger a little and make room for the peace that my soul craves.

I’ve become a bit of an expert at pretending, but Mum knows the truth. She wants me to go and get some grief counseling.  But I just don’t know that I can ever trust another counsellor again after the marriage counselling went catastrophically badly and almost ruined me.  Ruined us – ruined my hope and my belief in human nature.

I want to go back on the medication that I despise because I need to once again be numb.

I need to not feel so much and I need to be able to function again.

I’m going to be ok Dad, don’t worry about me.

But I would give anything to have you put your arms around me one more time and tell me that ‘God’s got this kiddo’.

Because Sunday’s are always the worst day of the week for me. I just can’t do church anymore – I can’t keep pretending for the sake of not making other people feel awkward at my outbursts.

So I’m going to sit here in this hot car and wait for Jesus to come meet me where I’m at.

Because that’s what you would have told me to do. Because you raised me right .

I love you. I always have and I always will.

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This was your 40th dad. The age I am now

 

One minute of every day

In line with my previous post about looking after ME, I downloaded a fancy new app called ‘YOU’ and I’m absolutely LOVING it!
The basic idea of this app is to record by photographs small daily changes that you are making to your life for the better. You can make your posts private – like a personal visual diary, or public (like I have) where people from all over the world can like or comment on your personal growth pics.

Now I know what you’re thinking: “Great, it’s another social media platform that’s no different to Instagram, Snapchat, Facebook or even Twitter. Why do I even need this?”

Well, the truth is : You don’t. But the purpose of this app is to empower people and to help them to be the best YOU that they can be by helping you to create and achieve micro goals.
From my personal experience – most social media platforms tend to bring our people’s competitive sides and posts can sometimes turn into an ‘keeping up with, and running ahead of the joneses’ battle. I jumped off that comparison train a while back because it used to do my head in.

I deleted my Facebook and Twitter accounts years ago. I simply couldn’t deal with the crap that seems to go hand in hand with social media.

I still have Instagram and I’m very particular over who I follow and who I allow to follow me. It’s part of the ‘looking after me’ policy that I’ve adopted.

This app appeals to me mostly because in the about section it says:

Don’t ‘photo stress’. It’s not a photo competition so don’t feel pressured – life is not always picture perfect!

And there are even “7 commandments of the YOU app” that stresses that the app is not a competition. It tells you not to focus on commenting or liking other people’s posts but to remember that the purpose of the app is to help YOU.

It points out that participation is a choice and not expected every day and that they recognize that it’s easy to become overwhelmed when feeling like you have to post every single day. It encourages you to stop and take the time to reflect and think about your goals and encourages you to share anything that you’ve learned about yourself that may help someone else.
Today I posted pics in the categories of MOVE, LOVE, TAKE A MOMENT and FOOD.

 

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I think this app is going to be a wonderful tool for me to continue taking the baby steps that i need to take for personal growth this year.

Why don’t you come me join me?

Simply download the app onto your smartphone and come find me!

My profile name is – Hey_its_Fi

And my account looks like this:

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Hope to see you over there soon!

 

Being Kind To Yourself..

20121123-222717.jpgI’m not one for making New Years Resolutions; I never continue them past the first week of January anyway. Declaring publicly that you are giving something up or starting something new is a sure-fire way to make a fool of yourself or end up disappointed when you ultimately fail.

Ask me how I know this 😉

Besides, I already know of several areas in my life where I need to make changes. God has been speaking to me gently about them for a while and I have also got some friends around me who aren’t afraid to be honest with me when they see me battling hurdles in my life. These friends are few but they are consistent and they speak life into me when I’m struggling and love me no matter what season I’m in.

I’ve always thought that self-harm was cutting, overdosing or physically damaging yourself in some way, but lately I’ve been made aware of the fact that self-harm actually refers to anything that you’re participating in that is causing you injury whether it be physical, emotional or mental.

And I’m the worst at self-sabotage.

I frequently say yes when I really want to (and should) say no, I eat what I know is going to make me ill (I have a list of known food intolerances as long as your arm) and I allow myself to be persuaded into being places I don’t want to be.

The downward spiral continues when I start to hate myself for being weak (again) and I push myself until I end up an emotional basket case and no good for anything or anybody.

Life is always going to throw curve balls at me, and people will always disappoint me – I can’t do a damn thing about any of that. But what I can change is how I view ME and how I treat ME.

Over the course of this year I have many long-term goals, physically, spiritually and emotionally.

Physically I’m looking at gradually eliminating meat, processed foods, dairy, sugars and alcohol from my diet, fine-tuning my eating habits and getting on top of my many food intolerances.

I want to improve my running; both distance and style and I’d also like to work at losing a bit of weight, toning up and strengthening my body.

Spiritually I want to set aside more time to spend with my children and with Jesus. I want to rearrange my priorities and make room for miracles and blessings to occur and I want to teach my children by example about having hope.

Emotionally I want to learn to be kinder to myself. I want to learn how to say no when I need to, how to stand up for myself and how to stop taking crap from other people because I think so little of myself. I also want to set aside time each week to write. I process better when I do this and I find it incredibly cathartic.

 I know that life isn’t always going to be easy and it’s a pretty overwhelming and exhaustive list of changes that I want to make in my life, but I don’t intend on doing everything all at once.

I haven’t even set dates as yet as to what I want to achieve by when or even how I plan to go about reaching those goals, but I have set myself the baby step goal of doing one thing per day that is just for me and just because I deserve it.

Today’s baby step was coming home from work, running myself a bubble bath and drinking a healthy smoothie made from fresh fruit and almond milk.

Tomorrow I am visiting a beautiful florist and I am buying myself a massive bunch of roses and coming home to do yoga and weights in front of a romantic movie.

I’m being kind to me. I am choosing to value myself. This is going to be MY year, I am going to look after myself and I am going to shine.

What’s your 2016 going to look like?

On being yourself.

 

A quote was shared with me earlier this week. It said:

“Love is not just tolerance. It’s not just distant appreciation. It’s a warm sense of “I am enjoying the fact that you are you.”

And oh my goodness, how that spoke to me. Because, I know that I’m quirky, and odd and obsessive and a bit manic at times and that I’m often unreasonable, had to manage and extremely emotional.
But this my friends, this is me. This is what makes me me.

I have spent months analyzing friendships that have dissolved and relationships that have become strained and every time, and in every situation, I have blamed myself.

I have agonized over past conversations, pulling apart entire monologues in my head and I ended up wasting days, weeks & in some cases: months wondering if things would have gone differently had I have handled things another way.
I tried to change me to fit other people’s moulds and tried to alter my personality to fit in with crowds who never really wanted me in the first place.
I told myself that if I were less needy, less emotional, less talkative or even less “present” that I wouldn’t be as frustrating to people and that I’d be more likeable if I tinkered with the parts of me that frayed other people’s edges.

But all that did was strip me of what was quintessentially “Fiona” and it left nothing but heartache, desperation and despair. It made me forget who I was and I could no longer recognise myself for who I am.

Because after you peel away all of the smiles, and the hard outer shell and the mask – you find what’s really inside of me. You will find the depression that lingers despite the medication and therapies I’ve endured, the grief of losing my dad that just wont go away and the constant overwhelming feelings of worthlessness and fear that goes hand in hand with raising autistic children.

It’s all still there but increasingly I am learning that this is the way that God made me and I don’t have to be like anybody else (and I don’t have to be perfect either) to be accepted. And the good news is that I don’t have to stay this way. I am a work in progress and God is slowly bringing the people who I need in this season into my life to speak into me and pray with me and love me through my heartache.

He is healing me and growing me and that ALWAYS hurts.
Jesus wasn’t accepted by everyone when He walked the earth and He certainly didn’t change who He was to suit other people. He just loved them wherever they were at in their lives and served them with grace, mercy and a love that I will never perfect in my lifetime because I am human to the core.
Jesus accepts me just as I am. I don’t have to always be rational or have my life together and I certainly don’t need to pretend that I am tough, in control or managing every aspect of my life. He can see through all the fake and knows the real deal anyway. Plus- He died for me despite all my junk.

I am learning (albeit slowly) that just because other people don’t talk about their hurts, their fears and their shortcomings that it doesn’t mean that they don’t have any – it just means that they aren’t as open or candid about it as I am.
I will probably never find the answers to why some of my relationships dissolved or discover why certain situations ended the way that they did, and although I believe that I have forgiven, it is still hard to forget and move on. But as a very close friend reminded me today: It’s because of unanswered questions that we find faith.

Romans 5:3-5

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

 

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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