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.

 

MY kid is spectacular!

Today was a good day.

It wasn’t the best day but it wasn’t the worst day either. It was the day of the swimming carnival at my kid’s school and this year was the very first time that Harley has attended. It’s been the 3rd year that he has been old enough to go but I had no success in even getting him there in past years, so his attendance alone was a cause for celebration.

He announced to me on Monday morning that he would like to catch the bus with his sister (Ella) and so I reluctantly signed the permission slip. I was proud of him but I admit that I was also a little uneasy. Don’t get me wrong – I’m all for helping him to stretch his comfort zone a little and I think it’s good for him to try new things but if I was to be completely honest, I was a little nervous having him experience so many new things at one time.

  • Attending the carnival for the first time.
  • Catching a bus with lots of other children.
  • Surviving a crowded, noisy smelly environment for 6 hours straight with no escapes or safe corners.

But I prepared him the best that I could. And yesterday afternoon I had a chat to Ella and asked her if she would please text me at intervals throughout the day to let me know how her little brother was doing because *I* needed to know that he was surviving.

She promised she would and true to her word, she updated me every hour with messages like this:

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God bless her – she is such a gem of a child.

So after receiving Ella’s second text, I decided to go for a long drive and I blasted my favourite music in the car singing along loudly at the top of my voice. Simply: because I could and it’s something that I LOVE doing!

Playing any music at ALL is a luxury that I don’t get to indulge in when Harley is in the car, so today I made the most of it and rocked it out big time.

And I may or may not have belted out some Kelly Clarkson, Alanis Morisette and just a bit of Katy Perry – you know – power songs and all that, but I digress….

But today was just what I needed. I had a great day doing whatever the hell I felt like and managed to refuel myself enough to be able to tackle any surprises that the afternoon may or may not have in store for me.

And thank goodness that I did.

Because when I watched Harley alight from the bus and walk towards me hand-in-hand with his big sister, my heart lunged into my shoes. I knew the face that he was wearing all too well. I could read the anxiety, fear and fright in his eyes and knew that he was trying so hard to hold it together. Bless him. I also knew that we only had limited time before the cork was released from the bottle so-to-speak and that I had to act fast. The rumblings of an explosion were there…. He was moaning quietly and pushing his head into my side. He was flailing his arms around floppily so I grabbed his little hand and headed for the office to sign him out early.

But Lucas wouldn’t leave. He wanted to change out of his swimming gear into his clothes and was refusing to come to the car with me. He started to pitch a fit and I didn’t want another upset child on my hands so I sent him to the bathroom with Ella to change.  But they weren’t fast enough and Harley couldn’t hold it in any longer.

So mother and son sat on a step together away from prying eyes while my little boy broke his heart. Tears ran down his cheeks as he alternated between cuddling into me and thrashing uncontrollably. He WANTED to be close to me but he just COULDN’T. His body was fighting him and his entire sensory system was out-of-control. I did what I could but knew I had to ride it out. Eventually he calmed enough for me to carry him out to the car and take him home to his safe place.

**

It was hard on me to drive home watching him wipe away his silent tears out of the corner or my eyes, but I still couldn’t get over the immense sense of pride that I had at that very moment seeing how far he had come.

My boy achieved so much more than I would have ever thought possible today.

  • He pushed past his own discomfort to display great sportsmanship by going along and cheering on his friends and classmates even though he himself is a non-swimmer.
  • He dealt with a different format for the day and with not always knowing what was coming next or where his teacher would be at any given time.
  • He caught the bus like the rest of the kids and went to a pool that he had NEVER been to before and did all this KNOWING that there would be loud noises, lots of kids and strong smells to contend with.

He has gone from a child who refused point-blank to even consider attending the swimming carnival only 12 months ago to a child who achieved SO MUCH personal growth today. And this Mama is so SO proud of him.

And for the record; I am not trying to teach my son to conform, to be like all the other kids or continually expose himself to situations that cause him so much pain and displeasure. Nor am I trying to change him into a ‘normal’ child. I am encouraging him to recognise what I have always known about him and that is that not only will he succeed in life but he will excel.

He can do anything that he puts his hand and mind to and he is amazing, strong and courageous.

And that’s no different to what ANY parent wants for their child is it?

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This is my favourite part of today. Watching him decompress and reset his vestibular system by indulging in an old-fashioned game of upside-down TV watching 🙂

“Have you got a minute…?”

That was what I heard this afternoon as I was walking across the school playground, Harley’s OT had spied me and called out to me. She said she had been hoping to see me so we could ‘have a little chat’….

And this is where I need to tell you that I admit that I held my breath a little bit. Because usually when a teacher, aide or therapist approach me, it’s not good news and experience has taught me that I probably won’t like what’s coming next.

But not today. Because today she had a major breakthrough with him and wanted to share it with me.

For weeks now he has been turning up to his OT lesson without his workbook. She had said that she thought it odd that I had never packed it (it stays in his bag permanently) but then today it dawned on her what was actually happening.

She had a light bulb moment and couldn’t believed she’d missed it for so long!

As she usually does, she waits until he’d settled in his seat and asked him if he had his book with him and he (predictably) replied: “No”.

So then she asked him where his work book was and he replied: “In my school bag”.

So he had been answering her correctly every single week when the direct question “Do you have your work book here”? was asked. But it had never occurred to him to go back to his classroom and get it out of his bag! Such a simple thing that had been complicated by his difficulty comprehending verbal instructions or questions.

She also mentioned that he had been a lot more settled than in the past and enquired whether that was because the stress of the school year is almost over. I ‘casually’ mentioned that he has now been on medication for almost 2 months and her face broke into a smile and understanding was written all over her features.

She nodded and said: “Wow. What a massive change I’ve noticed in him, he is more focused, more agreeable and much calmer than I’ve ever known him to be. I think you made the right decision”.

And instantly I felt the validation that I needed.

Harley’s Paediatrician first suggested the medication route a few years back but I was adamant that I wasn’t going to drug my child. I dug my heels in and determined that I would somehow ‘fix’ his anxieties, aggression issues and OCD tendencies myself.

But I couldn’t.

I eventually had to admit that it was over my head and ask for help.

Since he has started seeing his psychologist combined with the pills, our family life has improved dramatically.

Beyond description.

And now that he is able to gain more control of his emotions, he can actually apply the coping techniques that he has been taught previously before he gets completely overwhelmed.

So its a win-win as far as I’m concerned!

His teachers have noticed a positive change in him too so I’m even further and further away from beating myself up about medicating him.

I feel like I have my little boy back. The one that has been buried underneath layers of angst and fear for 9 years. I see joy in his eyes and happiness more often than ever before.

But please don’t get me wrong – I am not touting a magic cure-all pill for autism. (In fact I’m not ever dipping my toes into THAT murky pond) and I am definitely not advocating for going the medication route because choosing to medicate your child is a very personal decision and it will never be for everyone.

We have been under a remarkable Paediatrician whom I trust implicitly for years now and we weighed up ALL options over 3 years before deciding to bite the bullet so to speak. So this wasn’t a hasty decision at all.

Harley still has and will always have autism. We are just addressing a common symptom of ASDs. I am aware that this is a touchy subject with some folk but I’m simply writing about our family and our experiences and I won’t apologise for doing the best that we can with what information we have available to us at the time.

I love my kids and I want them to be the best that they can be.

I want to see this smile as often as I can. He’s just SO cool isn’t he!

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Deeper

I’ve been pretty slack at this whole blogging thing lately. I have had a lot to say but have been unable to put it into words that I’m comfortable enough with to publish.

Because the truth is, I’m hanging on by a thread at the moment. I’ve become pretty good at hiding my despair but thankfully, there are three people in particular in my life who are always there on the end of a text, phone call or email who keep me from completely losing it.

And they are all able to read between the lines and work out what’s really going on. I love all of them so dearly.

But even so, there is still so much that I really need to write out and deal with and I’ve struggled with writing it out ever since my writing was harshly criticized and made fun of recently.

I’m struggling with the bigger things too.

Like our visits to Harley’s psychologist. I haven’t even processed the information that she gave me on his first visit let alone the other times that he has been. He is just so complex and his issues are way over my head and capabilities and frankly: it scares the heck outta me. I’m not sure that I’ll ever be enough when it comes to helping him.

And the out-of-control behaviour that we are seeing in Lucas at the moment is something that I’ve honestly never seen before. I wonder if its an end-of-year exhaustion thing or whether he is struggling with stuff I can’t work out? And I wonder how deep it goes?

And if he will develop similar anxieties and fears as Harley and end up needing medication too? It’s all too much to get my head around.

Not to mention the friendships and relationship stuff that everybody has. Marriage is so damn hard at the best of times and the pressure increases when you have children who need so much more from you than the average child. I worry that my well will run dry and there will be nothing left to give.

There are already areas of my life that I have checked out of prematurely. It’s just all too overwhelming at the moment and I’m getting tired of just treading water all the time so it’s become easier to do nothing rather than make the wrong decisions.

Maybe that’s a bad decision? I don’t know, but survival mode does interesting things to a person. This funk I’m in has brought some rather abstract poetry out of me so I guess it’s not all bad.

Like this:

Hurting head and aching heart,

Needing some reprieve,

Wanting guidance,

Desiring peace,

But don’t know where to start.

.

I close my eyes and lay my head,

Down on my folded arms,

Wanting rest,

Desiring release,

From all those things you said.

.

As days unfold and choices come,

I don’t know which ways up,

Wanting love,

Desiring grace,

Before I come undone.

.

Then night fall comes and brings with it,

More pain and hopelessness,

Wanting answers,

Desiring truth,

I can’t take another hit.

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Walking in my son’s shoes

“Leave me the hell alone!” I shouted as I threw my iPhone and watched as it hit the nearest wall.
I had no idea who was on the other end because it was coming from a blocked number, but I did know that I couldn’t possibly have dealt with one more person wanting something from me yesterday.

I was well and truly out of patience and at the brink of tipping over the cliff.

I took a deep breath, steadied myself and walked over to retrieve my poor phone from it’s resting place on the tiles half expecting it to be smashed into pieces to match my emotional state. But I was surprised to see that it only had a few minor scratches and I smirked to myself thinking: ‘maybe there’s hope for me yet’.

I sat down on the floor and put my head on my knees and took several more deep breaths.

I couldn’t believe it, I’d lost my cool AGAIN! I was coming apart at the seams and it scared the heck outta me.

And what made it worse was the realisation that this one had nothing to do with autism but everything to do with my mental state. I hated that I was back there again.

***

Every school holidays, mothers all over the world have to deal with exactly the same things that I do. Fighting children, constant hunger and requests for snacks, being told by their kids that they’re ‘bored’ several times a day, messy houses and endless chatter to name just a few. And I’ve always wondered if the other mothers that I observe really do just take it all in their stride and how many of them actually end up like me and continue to fall deeper and deeper into the bottomless pit that is depression instead.

Because, unfortunately, depression is still a major taboo in today’s society and no-one wants to talk about it so we all put on the same stupid brave faces and play by the rules smiling through tears and broken hearts.

And for me, this stupid depression is really such a chicken and egg type situation because I’m honestly not sure if my depression is a by-product of the stress that goes hand-in-hand with raising children with special needs, or whether I struggle MORE with raising these kids because of the depression that hangs over me. I just can’t figure it out.

Depression is such a complex ailment. It is like diabetes in the sense that nothing good comes from receiving the diagnosis and while it can be managed: sufferers really do wish that it would just go the hell away. No-one is thrilled when they are diagnosed and it really can make life such a pain in the butt.

But the comparisons end there.

Diabetes is a socially accepted medical condition because it’s got nothing to do with a person’s psychology but sadly, almost every single disorder that is connected to the brain brings with it harsh judgement, criticism and a negative stigma : Including Autism, ADHD anxiety and various other neurological conditions.

There are (and will probably always be) a portion of society who refuse to believe that these are true and very real diagnoses and people like me continue to fight for those whose lives are affected by one or more of them.

Because unlike diabetes; autism, anxiety disorders and depression are all hugely misunderstood. And depression and anxiety almost always go hand-in-hand.

Depression is always exacerbated by stress and stress comes from anxiety which is a common reaction when you’re in depression.

A vicious cycle indeed!

Then add to that the perception that it’s all about choices and that the depressed person should just ‘snap out of it’ or ‘get over themselves’. That kind of thinking is really unhelpful. And so is telling the person that they should be thankful for what they do have instead of focusing on the negatives. Comments like that are a huge slap in the face and totally undermine and devalue the depressed persons cry for help.

None of us choose this life. We all hate it as much as the rest of you hate hearing about it.

***
Anyway: I forgot to take my medication yesterday hence my complete mental breakdown and freaked out state.

There’s a very good reason that the Doctors tell people not to go off their meds without Dr supervision. It needs to be done slowly and over a very long time period.

When I awoke this morning, I thought I hated being a mother, I thought I hated being a wife and I wanted to run far, far away and never return. I wanted out and I didn’t care who was hurt in the process. I wanted to quit and to give away my children. I wanted to start again.

I recognised that I was heading downhill fast so I told Paul that I HAD to get out so I went for a drive to try to clear my head that was pounding furiously. He joked that I had to come back and we laughed about it but I seriously wanted to keep driving into the sunset.

I drove to the nearest shopping centre with the intention of grabbing a quick take-out coffee but as I stepped into the shopping c, I was hit by a wall of noise that immediately disconcerted me. I placed an ear plug into my ear (I’m deaf in the other) and put my hands in my pockets and walked with my head down. I could still hear every child’s shriek, every word of the song playing over the P.A. and the conversations of those near me. Sounds were mostly muted but still recognisable.

I felt blinded by the bright fluorescent lights above me and the neon shop signs around me were making me dizzy. I took a short cut through a department store and found myself having to block my nose by burying my face into my shoulder because my detour went through the cosmetics and perfume department.

My sensory system was on high alert, my anxiety levels were soaring and I just was.not.coping!

I grabbed my coffee and got the hell outta that centre as fast as I could go and went and sat in my car for the next 2 hours.

Alone.

Almost in silence.

Praying.

I asked (begged) God to show me what was going on with me. I asked Him why I was spiralling out of control and pleaded with Him to make it all go away.

It didn’t. But I don’t believe that God ignored me or refused to answer me. Because He did answer me, just not in the way I’d expected him to.

I was finally able to see that giving up or walking out is simply not an option. I realised that my purpose is still very much alive and that I needed to experience such lows today so that it could all become clear to me once again.
I needed to go through what my son goes through every time he leaves our house to help me to gain a better understanding of his struggles and “walk in his shoes” so to speak.

When I got home again, I sat down and chatted with Harley. I described what I felt today and his eyes were filled with amazement as I told him how the noises, lights and smells made me feel. I told him that I was sorry that I don’t always make allowances for him when I should and promised that I would try harder in the future.

He leaned over and hugged me and said: “You’re the best mother in the whole UNIVERSE”

And once again I sat there crying like a little baby.

But this time the tears were happy tears because I know….I KNOW it’s all going to be ok.

 

What’s a holiday?

It happens every holidays. The excited mothers who are thrilled that their children are off school for a few weeks. They speak in anticipation of sleep-ins, lazy days, relaxing and recuperating combined with the grand plans of outings and day trips and possibly catching up with friends.

I listen to their exclamations of joy and feel like a real cad because if I were to be completely honest – I’d have to admit that I HATE school holidays with a passion.

And yes, hate is a strong word.

I hate that I have full days of fighting children instead of only a few hours in the evenings. I hate that my children whine and complain the entire time that they’re bored regardless of the activities I have provided them with, and I hate that more often than not, I end up housebound because taking them out causes too much stress for all of us.

I will admit that the first week of any holiday break is always the worst because it’s then that the boys are trying to make the transition from the routine and structure of school to the more relaxed easy-going (somewhat structureless) holidays.

The first week is also the time that I start to notice my own mental state shift. And this is largely because I am usually more on-edge and anxious as I try to foresee and predict meltdown triggers and step in and stop them before they occur. I am constantly aware that I need to stay one step ahead of them in everything and that the prospect of just ‘taking each day as it comes’ is something that I just don’t have the luxury of indulging in.

Holidays don’t have anything relaxing about them because they are always chaotic, stressful and loud.

Oh my goodness they’re loud!!

Having said all that, I missed the boat completely with Harley on Sunday with him having the worst meltdown I have EVER seen to date. Clearly I missed all of the warning signs.

***
At the moment, the children, Mum and I are staying in a holiday house on the NSW central coast and on Sunday, we decided to walk up to the shopping strip nearby and get some essentials because it would be quicker than finding a car park. But for some reason, Harley thought that we would be driving up and threw a fit when he discovered that we were walking.

He stomped along behind us dragging his feet on the footpath and screaming at intervals that it ‘wasn’t fair’, that he was ‘tired’ and that he wanted to go home. We ignored him and continued walking refusing to let him ruin our plans because we felt that we weren’t expecting too much from him.

We reached the end of the street and Harley calmed down enough to cross the road and we thought we’d be ok after that so we took our chances and went into a nearby cofee shop to grab a quick coffee before shopping. Harley just reacted by sulking and being generally cantankerous.

As we drank our coffee, he continued to growl at us and threw his food straight at Mum so I told him that his behaviour was disgusting and that we weren’t going to put up with it. He was told to change his attitude or there would be no beach that afternoon. After we finished our coffee, we headed toward the supermarket and that was the exact moment when Harley turned it up a notch. In a matter of minutes, we were thrust into the middle of a full-blown mammoth sized meltdown and there was no escape.

He screamed his lungs out and threw himself down on the footpath with arms and legs flailing furiously. People stopped and stared and when I tried to pick him up but he may as well have had concrete in his boots because he was literally anchored to the ground and I couldn’t budge him.

I tried to talk to him but he just screamed louder. I tried a second time to pick him up and I did manage to carry him for a few steps, but I was kicked and punched so hard that I had to put him down again and I waved the white flag of surrender. So instead, I sat on the edge of a shop window and pulled him between my legs with my arms wrapped tightly around him whilst saying: “Shh, it’s ok, it’s ok, Mummy’s here” while stroking his head as he kicked and thrashed.

At the time, I truly believed that what we were witnessing was a tantrum rather than a meltdown, but the proud part of me didn’t want to look like a bad mother to passers by so I took the ‘calming a meltdown’ approach instead. I did this because I realised that his fit looked like something a 2 year old toddler would throw not something you’d expect from a 9 1/2 year old child. And when Harley gets angry – he becomes super-humanly strong and when he’s not coping…even more so.

Mum was unable to move him either so we had no choice but to send Ella to the supermarket to get a trolley and bring it to us. Together we lifted Harley by the arms and legs and placed him in the trolley while he continued to jump and scream and thrash violently ducking the punches as they flew at our heads.

I walked around the supermarket grabbing only the absolutely essential items so we could get out quickly, while Mum waited with him in the trolley at the front of the store. He was so loud that he could be heard no matter what aisle I had walked down because he was screaming at full volume. I put my head down and refused to look at anyone. I was embarrassed, angry and exhausted.

About ten minutes later, I noticed that the screaming had subsided and headed back towards the checkouts and saw Mum talking to another woman who Mum later told me had recognized that it was autism.

In fact, Mum told me that FIVE different people had also approached her saying that they understood because they had a child/grandchild/relative who also lived with exactly what they were witnessing in Harley and that they understood our exhaustion and mental drain.

No judgment, no unsolicited advice..just pure understanding and support.

She (and I) were absolutely blown away!

***
It’s now been a few days since that episode and I’ve had time to reflect and chat with Harley because I really wanted to get to the bottom of this and discover what actually went wrong. I simply don’t ever want another episode like this. Talking to him was surprising and very eye-opening.

And this is where I find the autistic mind both fascinating and frustrating. This whole event came down to a simple misunderstanding and a hiccup between what we communicated to Harley and what he understood.

Firstly, he had already prepared himself for a car ride which didn’t eventuate, then we added in a quick coffee stop and thirdly, he didn’t have a film strip in his head of what the shops looked like because he hadn’t been there before. Most children are equipped with the emotional maturity to cope with change and adapt to new situations with ease. But Harley – feeling out of his depth , completely freaked out.

But don’t get me wrong here, I don’t excuse his shocking behaviour at all.

Throwing food back at Mum, stomping, screaming and the physical abuse are all extremely inappropriate. But all that I can think to say right now in my resigned, tired voice is : ‘Welcome to our autism’ .

I am struggling to teach this child anger management and self control and how to cope in different situations because I’m just too exhausted anymore. I am counting the days until his next psychologist appointment because I’ve been dealing with this for far too long now.

I wish I could enjoy having my children home without spending most of the time in tears. I want to love the school holidays as much as everyone else. But I don’t.

Not even close.

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The thing about anger….

We have many folders and files of therapy reports and all things pertaining to autism in this house. They are everywhere. Literally.

The thing about anger is that it can have a profound effect on your day.

It changes how you view situations and people, how you act and how you think.

It can be a very dangerous emotion if it’s not handled correctly and today; I almost became a victim of my own undoing by indulging in allowing bitterness to overwhelm me.

***

I’ll go back to give you all some context:

***

Today, I turned the house inside out looking for the report for Harley’s psychological and behavioural assessments that we had done through the university almost 6 months ago now.

I had deliberately put these results aside when I received them in the mail because I simply wasn’t ready to deal with them at the time.

 Well, ok, I did briefly skim through them when they first arrived but I have to admit that I didn’t really absorb any of it at all because I didn’t want to.

But the thing is: the psychologist that Harley has started seeing recently has requested a copy because it would be helpful for her to be able to see the best ways that she can communicate with him and help him. So I had no choice but to search for it.

And I found it. I read it and re-read it and read it again. But I couldn’t escape the fact that it was right there in print in front of me. It was very real.

The words: ‘low average range’, ‘below average’, ‘well below average’ and 8th percentile jumped out at me making me squirm. And from what I’ve seen at home, I believe that this particular report was very accurate.

But our school doesn’t necessarily agree.

Here is an excerpt from the report:

H’s pattern of performance across tasks indicates that he is experiencing difficulty across a range of cognitive domains including verbal reasoning and knowledge, working memory and his processing speed ability. He has particular difficulties in reading comprehension, spelling and numerical operations which supports Fiona’s initial reports… (Loved that bit).

Then it goes on to deliver further results and recommendations for more classroom aide, more learning support and more specialist attention in the school setting.

And this is the part where I burst into tears. I have literally gone around in circles tonight trying to ‘tidy up’ my initial post about my own personal reactions to the subject of aid (or lack there-of) in our school. What I wrote was very true, more than a bit controversial and very heartfelt but it was verging on venomous.

I hovered my mouse over the publish button several times but I wasn’t able to go ahead with it because I knew I had to calm down first and there was a part of me that just wasn’t comfortable with publishing such vitriol. That’s not – and never has been – my intention for this blog. I want to advocate not obliterate and I know too well that words spoken in anger can cause irreparable damage. So I trashed the whole post and I started again.

And no. I don’t think that I am taking the easy way out.

I am still extremely bothered that my child is desperately in need of extra aid and assistance that he’ll possibly never receive, but I have realised that I would achieve nothing good by giving in to angry tirades.

I need to go about this the right way; I just haven’t figured exactly what that is yet.

I am still in major doubt that the school really sees the big issues here. Don’t get me wrong: It is a great school and my children all have wonderful teachers but when you’re dealing with autism and all that it encompasses whilst in a mainstream setting:  it will never be enough.In fact: not even close to enough. And that’s just the way it is.

So who is at fault here?

Well, I don’t think it’s either the school or us.  The school offers what they can according to their funding allocations, and we enrolled our kids there because we believe in the school. Harley had no diagnosis when he started Prep. We were still viewing him as our ‘impossible child’ with shocking social skills and speech delays. We could not have predicted how things would eventuate 4 years down the track and could not have foreseen the extra needs that his disability brings with it.

The most pressing issue at the moment is that what the school sees, and what we live with are two polar opposites. School continues to tell me that Harley is a pleasure to teach, that he is doing wonderfully and that he is settling in well, meanwhile I’m still waiting for the last lot of my Harley-inflicted bruises to disappear and my own medication to kick in.

I hold no grudges because the school can only report on what they see and I can only report on my own reality. The fact that they don’t line up is what needs to be addressed here.

I have no choice right now but to give this all to God and truly believe that He is going to bring good out of this whole situation.

I simply cannot handle any more stress. I’m at my limit, so Jesus: PLEASE take the wheel.

A Mothers Love: Poem for my son.

The school bell rang and children rushed,

Toward their classroom doors,

I saw you pull your hat down firm,

And brace yourself – then pause.

.

And as you walked inside your room, 

I noticed you inhale,

Your hands you pulled into your sleeves,

Your face began to pale.

.

I saw you mutter to yourself,

And count your steps until, 

You noticed I was watching you,

Then stopped and stood dead still.

.

I think you’re brave , you push yourself,

Out of your comfort zone,

I see this and it makes me proud,

I know you’d rather stay home.

.

You think that you have got me fooled,

And that I’ve got no clue,

But I’m your Mum – I see your pain,

In most things that you do.

.

I know that when you pace and count,

You’re trying to pro-cess,

And when your brow is screwed up tight,

It means you’re getting stressed.

.

You sometimes find it hard to speak,

And tell me how you feel,

When you get home from school each day,

For you that pain is real!

.

I’ve come to learn that you express,

Emotions differently,

As either happiness or rage,

And nothing in between.

.

I need to show you other ways,

To let your feelings out,

There are better ways to show me these,

You needn’t scream and shout.

.

Just know son that no matter what,

I’ll love you with my all,

I’m here to guide you through these years,

And catch you if you fall.