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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Beginning to exhale 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Brick Wall

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THE BRICK WALL

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

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

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

So, *Lucas:

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

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

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

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

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

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

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

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

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

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

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

 

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

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

But sometimes, they don’t.

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

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

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

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

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

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

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

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

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

Does anyone else find this as fascinating as I do?

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

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

Fi x

 

 

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!

Success! 

Today was a great day. I mean REALLY great. I’m sitting down in bed right now, cup of green tea in hand and with music playing softly in the background. It’s the perfect setting for reflecting on just how precious progress is for this autism mama.
I know all parents are thrilled when their kid reaches milestones, but I celebrate milestones that many other parents take for granted and consider to be un-noteworthy. These milestones may seem insignificant to some but huge to me and many other parents just like myself.
It started this morning when the boys didn’t want to go with their father as planned, so I had no choice but to take them to church with Ella and me. Which is quite a feat in itself considering the volume of the music in my church.

Even *I* often find myself inserting ear plugs to protect my hearing on occasion so I was really worried that the noise would push (particularly Harley) to breaking point.
So I went prepared.
I packed iPods, noise cancelling headphones and earplugs. A backpack filled with colouring books and pencils and fiddle toys galore and the boys both took their teddy bears as well.

I’ve learned over the years to ignore the puzzled looks on people as they watch my almost 10 and 13 year olds play with toys that you would normally expect a toddler to play with, and I no longer feel the need to explain anything to anyone but am happy to answer questions if I am asked.

The service lasted just over an hour and they were both FANTASTIC! I admit that I spent a lot of time looking over at them and checking- waiting- for signs of either of them not coping, but was pleasantly rewarded each time with big smiles and hugs.

And this people, is massive.

It wasn’t all that long ago that I barely left the house and avoided any type of public meeting for fear of bringing on meltdowns, so the boys have come quite a long way.

After coming home for lunch, I decided that I would make good of my plans to start planting my own vegetable garden and herbs so I gathered up the kids and took them to a nursery nearby to select some plants.

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We planted tomatoes, lettuce, basil, shallots, chives, mint, thyme, rosemary and chilli plants.

And the kids have each been given the job of watering and tending 2 plants each so this should be interesting!

I love weekends like this with minimal stress and maximum participation and hope that there are many more to come in the near future.

Christmas 2015 – autism and massive progress. 

 I remember Christmases past which would inevitably end with me sitting on the floor in my walk-in wardrobe with a bottle of red and a box of tissues sobbing and wondering whether life was ever going to get any easier. 

Christmastime with all it’s sensory overload and socializing demands used to fracture my family and leave our peace and joy in tatters. But of course that was mostly all behind closed doors. 

The boys (husband included) were masters at the ‘fake it til you make it’ act that high -functioning autistics become masters at, but the wheels would always fall off in a big way when the visitors left and reality started to sink back in. 

But this Christmas things seemed to be much much easier.  

Harley has certainly matured and learnt new ways to deal with his anxiety that didn’t involve beating the snot out of me, or one of his siblings!  This weekend, I observed him quietly remove himself from situations that overwhelmed and overstimulated him, and he was able to self-regulate himself in ways that he would never have managed when he was younger. 

Being part of an autism unit at school has helped strengthen his self-awareness and taught him that getting angry and aggressive doesn’t actually solve anything and doesn’t fix the problem. 

Today we braved the after Christmas sales and after about an hour, I knew that Harley’s coping mechanisms were stretched thin. I was observing him closely and knew that he was a time bomb wanting to go off and was about to cut the trip short before an inevitable explosion occurred. 

I watched him for a few more minutes while his sister waited at a counter to pay for her purchases and was about to tactfully suggest a break or even going home when he surprised me with his maturity.  

Harley quietly walk over to the corner of the shop and sat down on the floor. He motioned for me to follow him so I did and crouched down in front of him. 

“Mum, these crowds and music and lights are hurting my brain and my eyes and my ears. I need to go away from it all. I’m going to lose it soon and I don’t want to hurt you or embarrass you. Can you please take me home. I’m sorry because I know you want to shop but I just can’t take it anymore.”

And right then, crouched in front of my almost-a-teenager boy, I burst into tears. 

I cried because I hurt for my boy, I cried because I wants to make his physical and mental pain stop, and I cried at how unfair and cruel life sometimes is to my boys. 

But mostly -my tears were from pride. 

I am so damn proud of the massive progress he’s made. I’m proud of the self-awareness he has worked hard on developing.

I’m proud of the restraint that he showed in wanting to protect me from his outburst.

But mostly I’m proud of the fact that he was able to consider ME in this situation despite the fact that he was in physical and emotional pain from the sensory onslaught that he was experiencing at that very time. 

I have never bought into the whole ‘autistics don’t have empathy’ garbage, because it’s exactly that: utter garbage.

My boy hurts when others hurt, and he HATES being the reason for someone being  hurt and he will go to great lengths to repair any damage that he may have caused during a meltdown.

Christmas is still a little rough for my boys and the rest of the family by extension, but it is far less ‘poke-your-eye-out-with-a-blunt-stick’ and more ‘deep-breaths-for-this-too-will-soon-pass’ . 

And for that- I am grateful.   

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.