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.

20 Year School Reunion: Memories lost

reunionTimes change, people change and time changes just about everything. I believe that memories can fade but that they are not necessarily wiped forever. I believe that we keep the best memories protected and allow the insignificant ones to be pushed to the backs of our minds to allow the more important and prevalent ones to take their place.

Our brains are fascinating and extremely complex pieces of machinery. Very cleverly designed to file and categorise information with a fine tuned retrieval method that allows us to access the memories that we need when we need them most.

Well….in most cases anyway. It’s important to remember though that I’m not writing about the autistic brain here because that is a whole other blog post. I’m writing about me and my neuro-typically wired brain for the purpose of this particular post.

Recently, I was put in a position where I honestly started to believe that I was literally losing my mind and it sent me into a late night google marathon where I learnt what is REALLY going on with me right now.

Last weekend, I attended my 20 year school reunion. I had the usual butterflies as I climbed the staircase mentally preparing myself to walk into a room filled with my past but they were quickly squashed when I saw my first familiar face.  I walked over and hugged the smiling young woman in front of me who hadn’t changed at all, and we started chatting about what we’d both been up to. I looked around the room and spotted another couple of vaguely familiar faces and a lot that I didn’t know at all.  I told myself that they must be the partners of people that I’d gone to school with but still – I couldn’t shake the uneasy feeling that had started to wash over me.

A guy walked past and kissed me on the cheek and said “Hi Fiona, great to see you”. I smiled and returned the greeting before turning to my friend and asking her “Who the heck was THAT?”

She grinned – “I’m pretty sure the two of you dated at some point” she giggled and told me his name.

“Oh WOW” I replied. “I can’t believe I didn’t recognise him”.

I mingled for a bit and talked to several different groups of girls – most whom I had no trouble remembering because I still stay in contact with them.  I spotted my high school crush walk into the room and my knees went a little weak when he hugged me but I know it was nothing more than silly childish memories. Still – it was one of the highlights of my night lol.

I walked over to the bar to order another drink and stopped on the way to chat to a girl who I used to live up the road from me.  She launched into the “Do you remember this? Do you remember that?” routine as I nodded and smiled all the while becoming more and more uneasy about my incredible loss of retrievable information. I honestly couldn’t remember a single damn thing that she spoke about and with that added to the mass of unfamiliar faces around that room, I was beginning to feel a little squeamish.

I took myself outside for a walk and I walked up and down the main street of my beloved home town twice trying to figure out what the heck was going on with my brain.  The cold air hit my arms and I started to shiver but I wasn’t ready to return until this all started to make some sense to me.

I asked myself; “What is wrong with me? I’ve ALWAYS been great with names and faces? Why can’t I remember a huge chuck of my school years or the people who were in it? “

I thought about how I didn’t recognise a SINGLE teacher from school who was attending that night and even when their names were mentioned to me – I couldn’t recall what they taught nor if I was in any of their classes. I wandered back to the hotel and went back inside. No-one had seemed to notice me gone so I felt better and less conspicuous than before.

A group of friends headed over and we all posed for a photo giggling and right then I decided to stop worrying about something I couldn’t do anything about and determined to just relax and enjoy myself.

I was surprised that I wasn’t asked the question that I’d been dreading “What happened to your face?” too many times though I did notice people looking at my dropped mouth and cheek questioningly. I told a few people about my brain and corneal surgeries but for the most part, I kept that info under my hat.

I went home that night happy and thrilled that I’d gotten to see so many great people again. I swapped numbers with a few and vowed to make the effort to meet up with those who live near me. I feel asleep almost instantly that night – I was exhausted!

The very next morning, I woke my daughter and we drove up to my old high school to take the tour. We all chatted while we walked around and the uneasiness started to creep over me once again. As people reminded me that we took classes together and joked about events that had occurred during our school years I was at a loss to remember anything again. I walked past classrooms that I couldn’t place and stared into spaces that meant nothing to me. The vast majority of my high school years seemed to have vanished completely from my memory and I had no idea how to get them back again.

I drove home disheartened and went onto Mum’s computer and opened Google. I typed “memory loss” into the search engine and waited. I sifted through countless articles looking for something that would ring true with me when bingo – I found this

Stress is a large factor in long-term memory loss.

“I have stress in my life” I yelled triumphantly and read on.

 Other causes include: brain trauma and/or surgery, anxiety, sleep deprivation, illness or extreme conditions whereby the patient is consistently subjected to conditions requiring hyper vigilance or attention to detail.

I began to feel a WHOLE lot better because all of that pretty much describes parenting on the autistic spectrum in a nutshell!  Add to that my 13 hour brain surgery, loss of my Dad and the enormous grief I experienced (and still do)  and the marriage-on-the-rocks situation than I’m currently in and the answer to my memory loss was staring me down.

Put simply, I learnt that because my days require me to constantly be thinking ahead, planning in advance and staying one step ahead of autism, I’ve had to shift my focus onto those things entirely to ensure that I am constantly on the ball.

Every morning I mentally list everything that needs to be done that day and then prioritize them. I must have at the ready an escape plan if things go awry, be aware of the different ways in which each child needs to be approached, be mindful of triggers and try to avoid them, be on the watch for signs of distress, plan the next few hours ahead allowing for changes and have ways to navigate them as smoothly as possible at the ready as well as everything else that a regular mother has on her mind as well. Then I have to physically dress my 10 and 7-year-old sons because they lack the fine motor skills to do so and all the while get myself ready and out the door by 8am.

It is all just so mentally and physically EXHAUSTING!

So my brain hasn’t actually erased those memories of my high school years, it has merely filed them into “not important right now” so that all the many millions of snippets about autism, OCD, Aspergers, structure, routine, ADHD etc etc can be more readily accessible.

I can’t tell you how relieved I was to discover that I’m not going crazy. It was such a load off to learn that my brain was actually in a kind of self-protection mode and not actually malfunctioning at all!

But the thing that brightened my day most of all was when I read this:

When a patient has long-term memory loss, he has problems recalling stored memories, not creating new memories.

So excuse me while I go and play with my kids and create some new exciting and hilarious memories for when I’m old and grey so I can share them with my own grandkids.

But not until after I’ve had a nap ..yawn..

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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Just don’t get too comfortable….

I think I may have written this post maybe 4 or 5 times over the past few days, but every time I’d read it back, I’d be unhappy with it so I’d delete it and start again.

I just can’t seem to write out what I need to write about without giving away too many details so I will only say that parenting an almost teenager is on par with raising autistic boys at the moment.

Holy hormones Batman!

Even my Mum has admitted that she didn’t have to deal with this kind of stuff when we were growing up. I guess times have changed and there are a lot more temptations out there for kids these days…sigh…

So yeah….things have totally sucked here. And no, I don’t believe that I’m being melodramatic either.

I have really struggled with guilt because I KNOW that Ella puts up with a helluva lot more than the average 12-year-old but I just can’t help the fact that the boys both require a lot more attention at the moment. So I have been feeling very torn.

And on top of that: it seems that Harley’s OCD has increased AGAIN, and frankly – he’s starting to unnerve me with his ever-increasing rituals.

I can handle the obsessive hand-washing. And even the counting of his steps is something I can learn to live with. But the vocal stimming and the repetitive questions that he needs to hear answered in exactly the same way each and every time – added to the irrational fear that he will cause harm to his family if he doesn’t do what his ‘stomach’ (?) tells him to that it will result in one of us dying….well that about tips me over the edge.

I mean seriously….it is becoming a huge problem for all of us and I’m staring to become unhinged. Its like living with Melvin from that dreadful Jack Nicholson movie “As Good As It Gets” but much much worse.

And he’s only 9.
Sheesh!

On a happier note, the boys both survived school photos and a fire drill at school this week with minimal after effects which is wonderful progress as far as I’m concerned!

And I have had my Mum here for the past two weeks so there have been an extra pair of hands to help me which is fantastic – except when they are needed to soothe frazzled children or hug an emotionally distraught Fiona.

But it’s all good.

Just don’t expect a coherent response from me for the next couple of weeks while I settle back into the chaos that is my life. Yep….Mum flies home tomorrow…..

But its okaaaaay…. I’m going to take deep breaths then count to 1 gazillion and then take more deep breaths. If you need me….I’ll be the one in the corner rocking and sucking my thumb!

Nah..just kidding: God will get me through.

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Shutting down or shouting out?

I always find it fascinating when I see something in one of my children that I recognise in myself.

I know that I am not naturally a decision maker, an optimist or display very good coping mechanisms, and it’s become apparent to me that I chose to shut down more often than fight when I’m overwhelmed.

This week I have had Harley home for 2 days and Lucas about to have his 6th consecutive day off in a row tomorrow. All due to sickness. Lucas had some blood tests earlier today because the Dr thinks he has either a respiratory infection or glandular fever (Mono).

And it’s interesting to me to watch how the boys have both responded differently to sickness and how their individual responses have affected me.

Harley (God bless him) makes sure that everyone around him knows that he’s sick, that he’s miserable and that he being sick is a major inconvenience to him. His anxiety goes through the roof with his OCD kicking it up a notch and the perseveration begins over whether or not he will end up vomiting.

Sigh

I’ve often wondered if he is ever really as sick as he says he is or if it appears worse because he works himself up so much.

He calls out at 2 minute intervals that it’s not fair, that he’s too hot, too cold, thirsty, hungry, uncomfortable, bored etc etc etc.

Whereas conversely, I often don’t realise just how sick Lucas is because he just lays down quietly and withdraws into himself choosing the silent protest. Which sounds like the easier child to handle right?

Well, yes and no. Sure, it’s easier on my ears and my patience but the downside is like I said: I often don’t find out just how sick he is until much later than his brother who gives me a running commentary of his every ache and pain in minute details.

I have to do a lot of guesswork with Lucas and he shuts down so much that often he refuses food & water and I have to physically open his mouth to administer medication. He doesn’t seem to hear me or respond to his name when he’s shut down like this. So it’s not always practical!

Remember his birthday last year? Remember how he was hospitalised with paralysis in his legs? Remember how much he shut down then? Well I didn’t. DOH! You can refresh your memory by clicking >>HERE<<.

Sure, in the past few days he has had some great moments where the medication has perked him up briefly and there have been glimpses of my vivacious little fella but they have been sadly few and far between.

I think that autism definitely plays a huge part in how my boys respond during times of high anxiety or in sickness, but there is also a very definite personality/genetic makeup factor in there as well.

I realised that I have spent so much time over the last few days trying to get Harley to stop whining and trying to get Lucas to interact with me in some way, that I haven’t allowed them both to individually indulge in what it is that they each need.

Harley needs to hear me soothe him constantly, in the same way that he will often ask the same question repetitively even though he knows that the answer never changes.

He finds comfort in patterns, in routines and in consistency. I believe that he repeats the same phrases: It’s not fair, I’m too hot, I’m too cold, I’m thirsty, I’m hungry, I’m uncomfortable, I’m bored in what seems to be a bizarrely cathartic way!

And all I have been doing is sticking ear-plugs in my ears and shutting him out because *I* couldn’t cope with the constant jabber.

And this realisation has really shone a light on myself. I have realised that I am very much like Lucas when I’m overwhelmed.

I shut down both physically and emotionally and enter a state of self-preservation.

These are the times that I shy away from my blog, my emails, my Facebook, Twitter and all other types of cyber interaction and especially from those whom I know in real life lest they see through my carefully constructed façade!

I call it self-protection mode but deep down I know that it’s just avoidance 😦

But here’s where my son and I differ greatly; When I shut down, it’s usually detrimental to me because I stop seeing reason and I block out those that are truly trying to help me, but when Lucas shuts down – he ALWAYS comes out the other side fitter, healthier and better off from the experience.

It’s like he needs to power off so that his body can fight the nasty bugs that have infiltrated his immune system. I really honestly think that he needs to do it so that he can protect himself.

From what? I’m not really sure but for now I’m going to put it down to just another mystery of the autistic mind that might one day be understood by NTs like me….or it may not.

Whatever the case may be – I’m going to keep doing what the Dr tells me and wait it out because I know that there’s a mischievous, sparkly little boy behind those glazed over dull eyes of his.

I just KNOW it 🙂

Climbing out of the trench.

As regular readers will know: I have two children diagnosed with Aspergers Syndrome. And I’ve written many times that they are polar opposites in how they present. I have read a lot of blogs that say that parents like me are being unfair to the autistic community by presenting the negative side of autism.

But this my friends is sometimes the autism that we live with.

And I know that it’s not everybody else’s autism but this is our story.

Some parents may have a “Lucas” type of aspie in which case – they may see this as an unfair portrayal, but I also have a “Harley” and other parents of Harley’s will know where I’m coming from.

I’ve asked the question before: What Kind Do You Have? because I know from personal experience that extreme anxiety, aggression, anger and explosive behaviour are not always present in every child on the spectrum. But it is VERY present in one of mine and not in the other.

So…..

Everybody knows that once a month, most men walk on egg-shells around their wives, girlfriends or teenaged daughters right? Right?

I don’t need to go into specifics, but you all know what I mean when I say that some words or actions are just triggers that could potentially cause a major explosion. And most of you reading this are in fact one of these women that need to be given a wide berth every four weeks or so.

Well, this is a really ideal way of explaining what life is like when you have a child with high anxiety and aggression issues related to their particular brand of autism.

But the similarities end here because, this doesn’t just occur monthly. And its not able to be predicted with a calendar. This is far more constant than that and often far more volatile too. The end is not in sight and there is no 3 weeks “normal” period in between.

Now don’t get me wrong; I absolutely love my boy to bits but honestly, sometimes, it feels  like we are living with a bunch of moody teenage girls who are all cycling one after the other. There is no reprieve.

And other times it’s like we reside in a constant combat zone and the associated stress levels are constantly at an all time high in this household.

It’s why I believe that like a lot of parents of children on the spectrum feel like they live in the middle of a war zone. Like they have been thrust onto the front line and why they long for someone or something to pull them out of the metaphorical trench.
Because there really is NO break at all.

Anyone can avoid particular subjects or people for a short time but when you’re in it 24/7: there aren’t any down times.

I was sitting down having a deep and serious conversation with Mr Patient recently and we were trying to figure out why we seem to be always teetering on the verge of complete mental meltdown ourselves, and why the simplest things seem to set us off so much more than they really should.

We wondered aloud why we become so unsettled and angry by little things that other parents are seemingly unaffected by.

Because, the thing is; we know that not all behavioural related childhood traits are autism specific. We are aware that all kids have moments of defiance and pushing their boundaries but we’ve also noticed that other parents don’t seem to be pulling their hair out in utter frustration over the little things as often as we do. They seem to be able to shake it off a lot more easily.

And we figured that it’s got a lot to do with their stress ratings.

Let me explain:  Between us, we came up with the stress-o-meter as a way to help each other understand exactly where we are at. I’m sure that this is an age old technique that has some fancy psychology term, but we are simple folk and have found that this is what works for us.

Think of a long straight line. At one end of this line is a 5 and at the other is a zero and the goal is to stay aware of where we are sitting on that line at all times.

So, level 0-1 is ideally where we’d all like to remain but life often throws curve balls and many of us find ourselves reaching 3’s, 4’s and sometimes a 5.

Everyone has stress and everyone varies at their level on this meter but honestly-for us, it feels like we hover somewhere between 4 and 5 at all times. We admitted that we rarely if ever get down to a 2 and almost never on level  1.

And prolonged exposure  to stress often affects your ability to move lower on the line. I see it in my own Mum when she comes to stay. She arrives on a healthy zero and goes home somewhere between a 3 and 4 herself. By the end of her visit she is often asking things like; “Is it bedtime for them yet”?

And this makes me feel a whole lot better. Because it means that we are not the only ones who find it tough going here.

And I think that it’s got a LOT to do with how much time you spend dwelling in the trench and how much time you allow yourself or are permitted to climb out.

But here’s the thing. Climbing out is not always as easy as you would think.

Some days we really believe that we deserve to be in that trench. We become big  martyrs and tell ourselves that we aren’t doing everything possible for our children if we aren’t thinking about ways to help them 24/7.

We wrongly tell ourselves that any times spent doing anything non-autism related is time wasted that should have been spent on helping our child to better navigate this big bad world.

It’s like mother guilt only a hundred times more.

But this is not the only reason that some of us dwell in the trenches.

Sometimes, (and I can attest to this scenario a lot more than the former one),  we honestly have no idea how on earth we are going to get out of the damn trench because it’s all we know.

We become familiar with it and we start to carve out our own little niche. We tell ourselves that as long as we need to be there, we may as well make ourselves comfortable, and we gradually find ourselves slipping further and further down into the mire of that trench.

And the sound of gunfire rings louder as our stress levels rise with every coming day.

Because we haven’t seen sunlight for sometimes months, we start to become irritated by the smaller things that we would likely be able to block out or deal with if we knew it’s only going to be temporary.

But we know it’s not. We can’t see the end in sight. We can only see the (assumed) many years of heartache ahead of us. We’ve lost sight of the bigger picture.

We know that often there’s nothing to look forward to and that it’s difficult to take your eyes off the here and now and look beyond to the treasures that potentially lay ahead.

And some of us need a helping hand to pull them out of the trench. Like I did and still do.

If you’ve read this blog for a while you will have read that I myself have been diagnosed with clinical depression and am currently medicated to manage it. I have good days and my bad days and EVERYTHING in between!

I am one of those people who struggles to see the silver linings and can very easily sink because I simply forget how to swim. I often think that it’s impossible to climb out of the trench and I become overwhelmed and exhausted so much quicker than I really should.

But God knows this and has placed people around me who are able to help keep me afloat and help to pull me up when I find myself sinking into the pit again.

God is the one treading water whilst he hold my head above the crashing waves.

I still have that wretched self talk telling me that I don’t deserve it whenever I’m offered a break and I am overcome with emotion when someone does reach out, but I’m definitely getting MUCH better at this!

I have recently started walking with a close friend. Because sunshine boosts your vitamin D and sunshine also dries the mud in the trenches.

Laughter and friendship and being able to escape the war zone even once a week is incredibly important so I have promised myself that the self-talk is going to change.

I may not be honestly able to get down to a zero or 1 on that stress-o-meter whilst I have very young children…..but if I can get down to a 2 or 3,  I will get that much-needed reprieve.

I AM worthy, I AM capable and I will believe what God says about me NOT what my exhausted, tired and emotionally drained brain tells me to believe.

I’m allowing people to pull me out of the trench or inviting God to sit down in it with me and comfort me until I have the energy to climb out. Or let him give me a leg up 🙂

Either way….I KNOW I’m never alone.
Have a great weekend friends xx


What I’ve learned these past few years.

Sometimes, no matter how hard you try or how much work you put in, there are going to be days that are harder than others.

That is the nature of autism.

It’s neither good nor bad. It is what it is.

And when you love someone with autism, you will keep putting one foot in front of the other until the hard times pass because the joy that is at the end is indescribable – the rewards are priceless.

And that my friends; makes all the harder times worthwhile.

What has autism taught you?

I remember…..

This was taken a few weeks after we received Harley's diagnosis. The same age as my reader's child.

I often get emails from strangers who have read my blog and just want to connect by telling me their story. They write and tell me how autism affects their lives and often the parallels between something I’ve written and what they are experiencing in their own worlds is fascinating.

I love receiving emails because it motivates me to keep writing and to keep spreading awareness one reader at a time.

I opened my email a couple of days ago and there was a new message from a brand new reader who had stumbled onto my blog during one of those (I assume) frantic 3am google searches.

They wrote about their child who has only been diagnosed as recently as 2 months ago. They don’t have any support networks as of yet and are not in contact with any other families that are walking a similar path to them. They feel isolated and frightened.

So naturally I sent them the link to Welcome To The Club written by the amazing Jess over at Diary Of A Mom. Because EVERY new parent should be handed that letter along with their child’s diagnosis. It is vital reading.

But do me a favour?….Finish reading this post before you click over there because once you’ve read Jess….you won’t want to come back 😉

The parent who emailed me desperately wanted to know that there is a light at the end of the proverbial tunnel. They were anxious to find out when and if their child will grow out of this overwhelmingly exhausting stage and wanted reassurance that it will all be ok.  And to be completely truthful – I was unsure how to answer this at first.

I didn’t want to lie and tell them that the meltdowns, tantrums and sensory issues would just magically disappear one day and that life would become all honky dory all of a sudden. And I didn’t want to give them any false hope by telling them that they can expect their child to become “typical” overnight, but I wanted to assure them that what they are experiencing is a normal part of the early days of discovering that you have a child on the autistic spectrum.

I wrote of the feelings of loneliness, of grief and of self-doubt and I told them that I truly understood. I recognised the fear, the anxiety and the emotional overload that was evident in their email and I was forced to go back in my memory to when Harley was first diagnosed at exactly the same age that their child is now.

I remembered the meltdowns that seemed to go forever. I recorded some of them on my mobile phone so I could show it to the paediatrician because it felt like NO-ONE would believe that there was something “odd” about my child. He watched them and nodded knowingly and told me that I would eventually find a way to manage them.

I didn’t believe him.

I remembered the punch in the guts when this very same Doctor told us that our child was “different” and that we would need to adapt as he handed us a list of therapists, specialists and blood tests request forms. I remembered the desperate feeling of abandonment, and feeling overwhelmed and exhausted all at once.

And I remembering thinking that we’d never make it.

But you know what? Through forcing myself to go back and deliberately remember those early days – I was able to see for the first time just HOW FAR WE HAVE COME!

And it got me all excited!

I remembered these feelings and thoughts, but was able to recognise that we don’t live there permanently anymore. We visit them occasionally and we will always be tied to them in some way, but we have moved on to become stronger, wiser and a lot more street smart.

And so YES, I was able to see that there IS a light at the end of that darn tunnel. YES, it WILL get easier, but sometimes it’s probably more likely a case of our challenges seeming more manageable because we now have experience and adaptability on our side.

Back in those early days, we weren’t as capable of predicting possible outcomes in the same way that we can now. We now know precisely what Harley’s triggers are and we either avoid them completely or find other ways around them to make them work for us. We have developed a “tool kit” that is custom designed for him and we rarely go out unprepared these days.

We’ve altered our expectations and have finally realised that sometimes it just isn’t worth pushing stubborn elephants up hill anymore.

And because of this I would say: YES. There is hope. There is HOPE and you will be ok.  My heart breaks for the pain they are in but I KNOW that they WILL be ok.

Because love conquers all and they have more than enough of that for their child or they would never have cared enough to write.