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

 

 

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.”

On being yourself.

 

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

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

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

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

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

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

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

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

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

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

Romans 5:3-5

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

 

Prayerfully thankful

Ok……so I spat the dummy, I ate comfort food and I sung the “woe is me” song.

Image from Google

But gradually, throughout this day I have been reminded of the things in my life that are wonderful. The things that are beautiful and the things that are true.

I also remembered some of the phrases that I have heard over the years from various places: church, my parents, friends, relatives, teachers, strangers, and also stuff that I’ve read in books.

I remembered that you never get “through” tough times by going around them or avoiding them completely. You have to actually go through them. I guess the old adage ” Character is built during the hard times of waiting” is more applicable to me now then ever!

I have always loved Joyce Meyer and distinctly remember her saying that as humans, we can either “complain and remain” (meaning staying in the pit) , or “praise and be raised” (meaning that if we focus on the good stuff in our lives and be thankful for what we DO have regardless of how things look, we will be able to rise above them.

It’s all a choice.

So far, I have chosen to moan, to groan, to allow myself to be overwhelmed and to give in to the “it’s too damn hard ” way of thinking.

And that’s ok.

Nobody can possibly be bright, cheerful, positive or “together” all of the time – we are all only human after all.

I just believe that it’s dangerous to allow yourself to “stay” in that place.

I’ve been reminding myself a lot today that our future is NOT determined by our past or our present.

And whilst right now I am sitting in the study hiding from the kids with a tension headache across my brow, and aching shoulders and neck, I know that I will not stay in this frame of mind forever.

I know that things will change. I have started the ball rolling by setting up an appointment with the right people at school and once that discussion has taken place, things will eventually start to change.

Maybe we’ll move, maybe not. Maybe the problem person will change or better still move or resign? Or maybe none of those things will happen.

All I know is that I believe in a good God with a great purpose for our lives…

And for us: ……….

Believing makes waiting more endurable.