Purpose

Well, it’s been quite an eventful year! Every year is eventful, but this one seems to have notched up a lot of “firsts’ for us.

Ella has almost completed her first year of uni, Lucas is almost finished primary school and Harley got his first job and I just feel so old.

Like seriously old.

It’s so true that the older that you get- the faster the years seem to go.

If I’m being honest, I’m not coping very well with the way that time keeps marching on despite me.

But , I mostly want to write about Harley and his incredible progress.

As I mentioned earlier, he just got his first job! I couldn’t be prouder of him even though it means I often have to give up my weekend evenings to go pick him up from work and my social events are now being planned around his work schedule.

When he first started, he made the decision that he wasn’t going to tell his employers that he is on the spectrum. Which is totally his choice.

I however, struggled with this a LOT.

My concerns were mostly due to the fear that he would be misunderstood and that he would have no allowances made for him should things go sideways. Or backwards, or as they often do: inside out.

Ella works in the same store about 38 hours a week (whilst still attending full-time uni- crazy girl) . And she sat me down and explained that she would have never let him apply for this job if she didn’t think he was up for it because it would reflect on her as much as him if things went awry. She knows the job and it’s requirements and she also knows how Harley is prone to overload and meltdowns. So if anyone could make an educated guess as to how he’d cope- it would be her. So I listened to her and kept out of it as hard as that was for me!

And I ain’t gonna lie- there have been some shocking explosions at home as a result of holding it together so long at work, and even tonight he came home overloaded by the Christmas crowds, the noise and the expectations on him but I can’t stress enough how damn proud I am of this kid!

He is learning to listen to his body.

He often (but not always) knows when he’s at his breaking point and takes himself away and either lays down next to our dog (she’s brilliant at calming him) or he listens to Rainy mood .com on his phone (which by the way is an AMAZING app for anxiety and or sleeping issues).

But whilst this is all such a positive experience, there is a flip side to this story that I just feel as though it needs to be told.

As many of you know- Harley is in a support unit at his High school due to his autism.

And it hasn’t exactly been smooth sailing.

He has been suspended for 4 days and has had countless run-ins with the teaching staff due to their expectations and his behavior not being on the same page. (I’m being as tactful as I can here because I have been extremely unhappy with the school on so many levels.

But that’s a whole other post that I’ll never write publicly).

Because Harley is in this unit , once a week he is sent to work experience at a store where he is essentially treated as a hassle.

The group of kids he goes with are taught basic life skills and have been pretty much written off.

During work experience, he is only ever asked to clean up messes, sweep floors, make coffee and other meaningless tasks that the staff couldn’t be bothered to do. He has never been taught customer service and the kids are kept ‘out the back’  so as to not be in anyone’s way, He is spoken down to as though he is stupid, and is rarely (if ever) given tasks or jobs that make him feel worthwhile .

 

I dohbt that that he is leaning anything that would help him later in life.  He absolutely hates Wednesday’s but I’ve convinced him to just stick it out for the next 4 weeks or so until Christmas holidays are here and that he won’t ever have to go back again after that.

The general vibe with this work experience (in my opinion) is that these kids aren’t worthy of being treated as meaningful members of the community because they’re ‘disabled’ and frankly it’s extremely patronizing that they aren’t treated the same way that paid staff are.

I know that there are many workplaces out there who are doing the whole disability employment thing right and this is likely an isolated case , but I do wonder if this kind of thing is common?

I’m so disheartened that he can be treated like a pathetic loser by those who know his diagnosis and yet completely differently by his employer who have absolutely no idea at all that he’s on the spectrum. He is the same kid in both places.

At work he serves customers and operates a cash register alone , he puts stock away, he greets customers on the door and he is spoken to as any other team member would be spoken to.

And the confidence that I have seen growing in him as a result of this is so heartwarming to watch.

When he comes home from work he is so happy. He talks endlessly about his day. He tells me in detail about what he did and achieved at work and I have realized that all of this is because he finally feels valued and that he has a purpose.

I am so glad I listened to my son on this one and I am so proud of him for the man that he is growing into .

The rewards for believing in him have been amazing and makes this mama’s heart swell.


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No Regrets

When Jane Austen wrote “Life seems but a quick succession of busy nothings” she wasn’t wrong.

It’s the everyday mundane tasks that keep you so caught up with just existing and living that you can barely find the time to do the important things and life seems to pass you by.    Then one morning you wake up and realise that your list of “must do” jobs is long and overwhelming, and you start to feel yourself sinking deeper down into the pit of ‘too hards’.

For me – the biggest and most important ‘must do’ on my list was tacking the NDIS. (Or National Disability Insurance Scheme) for those who are unfamiliar with it.

The NDIS put simply is individual funding for therapies and services that the recipient will be able to access for the rest of their lives. FINALLY, the powers that be are starting to recognise that Autism is a life-long disability and that it by definition impairs individuals in so many aspects of everyday life.

So, it’s a really big deal here in Oz.

I often think about the amount of people who I’ve either walked away from or pushed out of my life over the past few years because being around me certainly hasn’t been easy I know. And whilst I have a lot of regrets; I will never apologise for putting my son first and anyone who couldn’t (or wouldn’t) understand that are the ones who have missed out.

I have found a second job 3 times and had to resign from all of them because they have proven to be too much to handle alongside 2 autistic kids and now that I’m on the flip side- I can see that having less income isn’t the worst thing in the world if it means that I can throw myself into getting my kids the help they need and deserve.

Anyway, I originally applied for the funding back in April (with my Mum having to come to Sydney take the reins when I started sinking from the pressure) and I spent 7 long months ringing doctors, and paediatricians, and therapists and petitioning agencies to get the support that I knew we would all need, and I kept coming back empty handed.

During that time, we had 3 case workers resign on me and the last one had the gall to tell her superiors that ‘in her opinion’ my children would not need a replacement case worker because their mother (me) had several strategies in place and enough insights into autism that the resources would be better used elsewhere.

So, because I was a good mother – I was being punished and the services were granted to another family who did NOTHING for their kids. (Well, that’s how it felt anyway).

It seems as though there was no way I was going to win in that situation but what it did mean was that I was now left alone to fight the bureaucracy and there was no one keeping me afloat.

 

The day of the NDIS planning meeting I woke up and decided that I was going to go in and lay everything on the table because I had absolutely nothing to lose and dressed in my brightest and most obnoxious outfit. I figured that if I felt ok – I’d present my son’s case better and prayed that I’d get an understanding auditor.

What I didn’t count on was the fact that the meeting was so draining that it ripped me in half emotionally and I sat for most of it with my head on the desk alternating between sobbing or crying so much that I couldn’t speak.

Having to verbalise my son’s deficiencies and struggles whilst feeling incredibly alone, isolated and deserted was the hardest thing I’ve done in my whole life so far.

I had to answer probing questions about family life and had to admit that I had no fecking clue what I’m doing most of the time and it was so demoralising. I had to describe psychotic episodes and violent outbursts and show my scars to a complete stranger. That day will likely haunt me forever, but it had to be done.

Every year, I try to come up with a ‘word for the year’ and last year’s word was: “survive” because last year I was hanging by a mere thread.

But at the start of 2018 I was unable to narrow it down to one word so I settled on two. And they were: “No Regrets”.

No Regrets: I am not going to lose sleep over lost relationships anymore because those who want to be in my life know where to find me and make the effort to be present and I don’t need to chase them.

And No Regrets: I’ll do whatever it takes – no matter how much it hurts or rips me apart for the sake of my kids because God will not let me drown.

************

 

Anyway, this afternoon I got home from work and checked my mailbox and there was a big fat envelope with NDIS on it sitting in there. I ripped it open and immediately burst into happy tears.

The amount of funding that Harley received is over and above anything I could have hoped for or even imagined, and I am literally blown away by God’s goodness and promises to walk through the fire with me.         Harley has been granted funding for things that I didn’t dare dream of and his future is so bright that I can barely contain my excitement for him.

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My Beautiful Boy.

 

Ephesians 3:20 – 21

20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

 

 

 

 

 

Perspective

Tomorrow marks the anniversary of my brain tumor removal surgery.
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13 years to the day.

Thirteen years of learning to love the new me. The me with the crooked smile. The me with one deaf ear and the me with one eye that can no longer produce tears. The me with facial palsy that has remained a constant and the me who will alway talk out of one side of her mouth.

I’ve struggled a long time with this new me who still has major balance issues and a permanent hip and knee weakness as a direct result of those balance issues. I’ve struggled with self confidence and even with liking myself.

But I am ALIVE!

The older I get: the more perspective I gain on just how huge this is. I spent this evening watching YouTube videos of other acoustic neuroma survivors and cried as they showed their scars and fist pumped the air as they one by one spoke of their recovery.

There is something to be said of survival against the odds .

Recently, we took our son to the dentist and he commented that the major discoloring and deterioration of Harley’s teeth was directly due to a childhood trauma.
I was absolutely gutted when I heard this because I am sure I know exactly what the trauma was that he referred to.

The night before I was scheduled to go in for major brain surgery Harley came down with a bad case of Chicken Pox. He was only 16 months old so was still a little baby.

I remember sitting in the passenger seat of my car as it was reversed down the driveway in the morning to go to the hospital on the day of my surgery. My Mum was standing on my front porch crying because her little girl was going in for what would be a 13 hour surgery and my little boy in her arms was also crying because he was so sick and just wanted his mummy.

The whole scene was like something out of a bad movie.But through it all: I remained somehow strangely calm.

Harley was still contagious after my surgery so he wasn’t allowed to visit me during the first week of my hospital stay. And when he was finally cleared to come in, he was so frightened of me that he cried and clung to my mum like a little bear cub.

Which is not surprising since I looked like this:

week 1p

It broke my mother’s heart into a thousand pieces and I have carried guilt over this for years.

Another memory I have (and one that has impacted me for years) is the memory of my parents driving me home from the hospital when I was finally released .

I remember sitting in the front seat beside my Dad who was driving and my Mum was in the backseat sitting between 3 year old Ella and baby Harley.
I clearly remember Harley screaming because he was a baby and autistic and overstimulated and ALLLLL the sensory input that I now understand must’ve been completely overwhelming him at the time but he couldn’t tell us about back then.

Mum was trying to comfort him and rubbing his little hands and feet and she was singing softly to him to try to keep him quiet for my sake.

I hadn’t yet adjusted to the outside world and all it’s brightness and noisiness and the sensory input was overwhelming me too but I was once again- strangely calm.

Dad then tried calling out to Harley : “Shh little man, it’s ok, we’ll be home soon, your mummy needs some quiet little mate ”

And I smiled with gratitude at both of my parents because they loved my kids as much as I did.

Then I said: “It’s actually ok . Just having them here with me is amazing.  And I’m alive! I just survived a major surgery and I have my babies back- I’m so thankful that life has given me another chance”

I often think back now about that car drive home and how thankful I was for my life, my parents, my kids and even my new disabilities and I reflect on the difference in my attitude to life and parenting back then compared to now.

On the bad days now where I almost wish my children away, and I curse autism, and I wave my fist up at the sky and yell at God: “ARE YOU KIDDING ME!?!!”
On those days I could not be further from the grateful peace filled woman I was back on that car ride home.

Because sometimes when life gets overwhelming, it’s easy to forget how fortunate I was and AM and how much God held and continues to hold me in the palm of His hand and how He kept my family safe whilst we underwent such a huge upheaval.

Perspective huh?

And I got to thinking about Harley’s childhood traumas of his mother abandoning him when he was sick as a baby, and the countless other times during his baby and toddler years that I had surgery after surgery for my many other health issues and the guilt sometimes becomes overwhelming and debilitating.

But then God gently reminds me that even during all those times : He held my little boy safely in His hand too. Because nothing takes Him by surprise.
It’s humbling to remember that it’s not all about me.

I don’t often buy into all the quaint little sayings like: “everything happens for a reason” but I do believe that God uses everything that does happen in our lives to grow us and to teach us. I believe that any hurdle we go through in life will one day be used as a teaching moment for us in the future or even just to serve as a memory for how far we’ve come in life. Even if it only seems as though baby steps have been taken.

I know that I have a better understanding of the sensory issues that my son experiences because of my own daily battles with light sensitivity and noise and I wouldn’t have that personal understanding if I didn’t struggle with the same things myself.

I am slowly learning the lesson that has been the toughest one yet. I am learning to give thanks EVEN WHEN I can only see the horrible things in front of me.

I am not there yet, but I’m getting closer.

Life was never meant to be easy I don’t think.  But I am a survivor in more ways than one.  And I have the scars to prove it.

week 1h

Healing of the heart 

I finished work early today. I was walking through my local shopping centre after completing my last merchandising job and had a coffee in one hand and my phone in the other. I had earphones in and was walking along looking down at my phone to choose a song to listen to because I just needed to block out the world. I’d had a fight with a staff member in one of my stores and wasn’t in the mood for ‘people-ing’. (Which is unusual for me) .

I couldn’t find any songs that appealed to me at that moment , nothing seemed to match my mood so I decided to walk to Target to buy an iTunes card with the intention of going home and finding myself some new tunes.

Just as I crossed over I noticed a friend that I hadn’t seen in years, she was still quite a way off and hadn’t yet seen me and I toyed with the idea of pretending I hadn’t seen her. (Come on, we’ve ALL done that) . In a total opposite reaction to my natural personality- I wanted to be alone. I wanted to process my exhaustion with no one around and I didn’t want to have to deal with anyone else today. I was mentally and emotionally done. That girl I’d fought with at work had done my head in.
But something in me knew that the friend walking towards me wasn’t ok. The closer that I got to her- the more that my suspicions were confirmed. She had her head down and was clearly deep in thought. Once again I considered just letting her pass but something tugged at me even harder than before so I called out to her and waved .

She looked up and me with a dazed look on her face and it took her a couple of seconds to register who I was. She gave me a halfhearted smile and a small wave and kept walking.

I let her get past me and then turned around and called out to her:

“Katie- you’re not ok are you?”
She stopped walking and tears started rolling down her face and she angrily swiped them away as she shook her head. She sighed heavily.

“No Fi, no I’m not ok. Not at all, not even a little bit”.

I instinctively put my arms around her and though she was stiff at first, she soon sank into my arms and sobbed uncontrollably.

I started crying too because I’m a massive empath- I mean, if you cry around me, there’s a 100% chance that I will cry too.

She cried for a bit longer and then slowly lifted her head:
“I just got a phone call from my sister- my mum will probably not make it though the night. I have to drive up and see her tonight. I don’t know what to do, I can’t think straight…I’m not ready to say goodbye. I’m just so….” and she burst into a fresh bout of tears.

“Oh honey” I said . “Oh there’s nothing I can say to take away this pain. There are no words. I’m just so sorry. So sorry Katie”

“How do I even do this?” She asked me. “How do I possibly keep going? I mean- this is my MUM. This shouldn’t be happening! “

“I know sweetie, life is SO unfair. And short, and as confusing as hell. It just blows. It really does. “

She smiled at me and said: “I forgot Fi. I forgot you’ve been here too”
She was referring to me losing my dad in 2008.

I remembered everything about where I was when I first got the phone call urging me to ‘come home because your Dad doesn’t have long left’.

I remembered where I was, what I was wearing and the pain that seared through my heart as the realization dawned on me that this was real life. That my reality had shifted so suddenly and that there was absolutely nothing that I could do to stop it.
I looked at Katie again and smiled.
“It won’t always feel this way” I told her. “One day you’ll look back and realize that you’re going to be ok. That you are a helluva lot stronger than you thought you were, and that it’s ok if it takes you years to get there. It’s definitely not going to be easy- I won’t lie- there will be days where you feel like you can’t breathe- you will be so overcome with sadness that you feel like you’re drowning. But those days will eventually pass.”

I told her that there is no timeframe for it to stop hurting. That it will ALWAYS hurt but that over time, she would learn to live with her new normal. I told her that she will likely go through years of denial, of anger and of even being completely numb and that all of those emotions and reactions are normal.
I assured her that there is no right or wrong way to grieve – and that even though her Mum wasn’t yet gone, that she was still experiencing grief over bad news and circumstances that had slipped beyond her control.
Then I stood with her in the crowded shopping centre and asked her if it was ok if I prayed with her.

She nodded.
I put my arms around her again and whispered: “Lord- you know exactly where Katie is at right now and none of this has taken you by surprise. You understand the crippling pain that she is in and I pray your peace over her and her family as she makes the drive tonight. Thank you that even though we don’t always understand in our earthly minds what is going on- we trust your sovereignty and know that you’re holding her in your hands”.
She hugged me again and told me she needed to get home and pack. She commented that she believed that she was supposed to run into me this afternoon and I nodded in agreement and squeezed her hand and waved her off.
I pulled my phone out of my pocket and realized that I no longer needed music to distract me. I realized that I no longer felt like being alone and I turned around and started walking away from Target and back towards my car to go home.

My mind started wandering and I started thinking about the days when I’d had to say goodbye to my Dad. I remembered the hospital- the smells, the depressive dusty curtains in his room and how Dad had giggled as he told me that one of the nurses was ‘a bit of a bitch’ .

I laughed out loud as I remembered that bit because it was so massively out of character for my Dad. He was a people lover, an encourager and NEVER spoke badly about anyone. But the cancer and the cocktail of drugs and painkillers that he was on had made him a little more candid and (in my eyes) hilariously honest.
I started thinking about the days before his death where I constantly flipped between anger, denial, bargaining and massive bouts of sadness.

And then the realization hit me that I no longer dwelled in any of those places.

Sure- I still have days where I am totally overcome with sadness and especially when something triggers me I lose the plot a little. But those days aren’t all that often anymore. It suddenly hit me that God has slowly brought me to a place where I am able to function in my new normal. I still grieve him, I still cry, j still miss him dearly and I often resent that fact that EVERYTHING changed in my world the day he went to heaven but for the most part: I am ok.

And then out of the blue I remembered something that I had prayed myself many years ago. Right when I was in the midst of uncontrollable grief I sat in my car one day and literally SCREAMED at God.

“This is so unfair- why did you have to take the man who meant more to me than any other man ever did. Why did you have to take HIM- he was a wonderful father- a great husband to Mum, a loyal and funny friend to many and he loved you with his whole heart ”

And then followed with … “ Jesus-please use this pain I’m in right now and turn it around for good one day, because there is NOTHING good that I can ever see coming from this shitty mess” (yes- God has heard me swear before. He forgave me – we’re good- don’t worry). Haha

And you know what- he did do that.
He really did.
The good that has come out of this was that He placed me in the right place at the right time today where I was able to stand in front of a friend who was broken hearted and say with 100% authenticity “I know exactly what you’re going through and I understand just how overwhelmingly lost you feel right now and that’s ok”

I was able to look her in the eye and assure her that she was not alone. That her hurt wouldn’t never be for nothing and that there was someone who would be praying her through the worst of this.

And I feel SO thankful and privileged that I got to be that for her today.
“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Romans 8:28

Desert Poem

I see you in the desert where,

You’re wandering alone,

But what you have forgotten is,

I haven’t left my throne.

.

If you take my hand, I’ll lead you out,

But you need to make that choice,

I’ll never force or pressure you,

I’ll guide you with my voice.

.

I am a patient father and,

I’ll love you either way,

But I want to save you heartaches,

And remove your constant pain.

.

I have a master plan for you,

It’s been there all along,

I know you wandered off the path,

But I also made you strong.

.

My strength in you has kept you as,

You weathered storms and strife,

My spirit has sustained you when,

You wanted to give up on life.

.

Your heart is soft and beats for me,

Though you’ve said things you regret,

You momentarily lost your way,

But when I forgive – I forget.

.

My chosen child, my precious one,

Be still and rest in me,

I’ll guide your steps and hold you close,

For all eternity.

 

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Freedom..

You hurt me. Not with words, but by withholding them when I needed them most.

You hurt me when you walked away.

You took with you my dreams, my hopes and my passion.

You scarred me with the ill-chosen words you did choose to use when you allowed anger to guide you, and your eyes to be closed to compassion.

You turned your back on me when I needed someone to prop me up.

I needed to lean on you, and you let me fall and I struggle to believe that it wasn’t deliberate.

You knew I was treading water, yet you threw me no lifelines. You responded to my cries for help with anger.

Were you angry at me for being weak? Or angry at yourself for being ill equipped to deal with the onslaught of emotion that I bring to the table?

Some say that you were not ever able to deal with me emotionally, but I call bullshit. You always knew exactly what you were doing.

I know I’m pretty full on but you knew that from the very beginning.

This was always all about control, and power and winning no matter the cost. It was about arrogance and selfishness.

I want to hate you for this and for all the rest of the pain you have caused me over the years, but hate is such a strong force that I don’t want to allow it in to poison me. Because I know it will damage me irreparably.

Part of me wants to find out what I need to do to cause you the same level of hurt and pain that you’ve caused me, but I know deep down that revenge is never the answer.

Love is.
Forgiveness is.
I’ve held onto enough pain to last me a lifetime and it’s starting to make me physically ill so it’s time to let it all go.
It’s time for me to move on and allow healing to begin.

You’ve left me damaged, but not broken. Cautious but not so much that I’ll never be able to let someone in again.

You don’t deserve that much power over me.

Your neglect of our relationship, of our history and our connection hasn’t left me feeling as cold as it I would’ve expected.

It has pushed me closer to Jesus.  To the one who will never be disappointed in me.

The one who will never crush me with angry words, the one who will never abandon me.

So thank you. Thank you for teaching me that it was always foolish to expect a human to be what only God can be.

Faithful, true, honest, loving and kind.

All the things you’re not.

 

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.