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 3^rd 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:

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?

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!

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.

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 8^th 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.

The honest list..

Today I had to complete a task that I absolutely hated doing. I had to sit down and write out all the areas that we struggle with our Harley so I can take them to his appointment with his new psychologist on Wednesday. I had to fill in forms and provide all the applicable paperwork and this all took me quite a few hours.

Now I know that there are a lot of issues with Harley that need work, but until I took the time to actually sit down and write them all out, I had managed to convince myself that things weren’t really all that bad after all.

But they are. The list is loooooong.

I listed everything from his defiance, aggression and anger through to his OCD quirks and sleeping issues. And as I sat there and read the list back to myself I was confronted with a fact that I have been avoiding for quite a while: The fact that our entire family revolves around this child.

It seems that every argument that has ever occurred in this house has been somehow tied to him whether directly or indirectly. He is always angry and out-of-sorts, he is volatile, he is hard to please and he is extremely vocal when he’s unhappy. I find myself often avoiding disciplining him firmly enough because it’s just too hard having him scream at me and attack me physically.

Paul and I realised over the weekend that the reason we never go anywhere as a family is because it’s either too hard to deal with his tantrums in public or too hard to deal with the aftermath once we return home again. And I no longer think that this is solely related to his autism because we don’t have the same issues with Lucas at all. I’ve always referred to them in blogs as ”the boys’ instead of pointing out that most of the time, it is Harley who makes me want to tear my hair out. Because that seems unfair to do. But sadly, it’s the truth.

And its not like we haven’t tried to go out. If we do happen to mention to the kids that we’re going to the shops for a few items, Lucas simply says “Ok” but Harley starts screaming and eventually Lucas joins in. Lucas constantly copies his brother and the thought of having two of them this explosive frightens the heck outta me.

So that’s why we have to deal with Harley’s anger before that happens.

Most of the times that we do actually go out and then end up staying somewhere too long (in his opinion), the moaning, hitting and yelling starts. So more often than not we opt to just stay home because it’s the easiest option.

Which would be ok if it didn’t bother us to stay home. But it does, because very soon after a failed attempt at an excursion – the resentment sets in and I find myself becoming angry because I feel that I have no life whatsoever and I end up in a foul mood because I’m sick of being so house bound.

I know that choosing to become a parent involves hanging up your selfish hat and putting your kids before you, but this is ridiculous. There has to be a bit of give and take not just take,take,take,take all the time.

Paul and I both hate weekends. And Lucas and Ella have also vocalized that they don’t like them very much either. Ella often sits with her head in her hands when Harley is escalating and unfortunately Lucas regularly cops the brunt of a lot of Harley’s anger. He is constantly being punched, hit and kicked.

Which is why I’m pleased that we have this appointment approaching because it turns out that the OCD is only the tip of the ice-berg with Harley. And whilst it sure would be good to hand him over and have him returned to us completely fixed, we know that it’s not going to happen and there is a long haul ahead of us.

But herein lies my greatest concern. It is bothering me that in order to give the psychologist all the necessary information to help Harley, I will have to paint a pretty nasty picture of my little boy. Much like I have here but the difference is that all of you who are reading this know from previous posts that I would do anything for my precious little boy and I adore him, whereas I have to meet her under very different circumstances.

But I have to present worst case scenario right? My boy IS worth it , he is extremely valuable to this family and he deserves all the help that we can get him.

And that’s what I will continue to tell myself until I stop feeling like such a cad.

O.C.D…OMG!

Spinning on the spot to regulate himself.

I’ve noticed that there are definite stages that you go through as a parent when your precious child is first diagnosed with autism.

Most parents feel one of two very distinct emotions: either completely blind-sighted and shocked, or relieved that you finally have some answers. And with both of those emotions comes a certain amount of grief. Immediately you start to worry about your child’s health, about your parenting skills, your other children, your family and most of all, how it will impact on the rest of your child’s life. You worry about their future like nobody’s business.

You want to know that it’s going to be ok and you clutch at straws for a while until you eventually find your feet and one day you realise that you’re easing gradually into a new emotional state. And that state is acceptance.

So you start to seek more information. You want to help your child in any way that you can, and your heart for your child is absolutely bursting with compassion. You put yourself in their shoes and you start to become an expert at predicting possible meltdown triggers.  And if you’re like me: you jump on the advocacy band-wagon with both feet.

You declare that you are going to be a world changer and make society a better place for your kids to grow up in. And damn it…..you don’t quit trying despite the setbacks that you continually face.  You pick yourself up time and time again because that’s just what we do.

And then sometimes, in some families, inexplicably and completely out of the blue: you face major regression and it breaks your heart in two.  Before you know it, you are transported right back to the original emotional overload that you experienced when you were first given that scary diagnosis of autism.

******

Here is our story:

AS far as autism goes – things are plodding along nicely. But it’s the stupid co-morbids that are killing us at the moment.  Common co-morbids with autism are Anxiety, ADD, ADHD, ODD and in Harley’s case: OCD (Obsessive Compulsive Disorder). Harley’s social skills, coping mechanisms and general well-being have taken a very steep nose-dive for the worse lately. His anxiety is through the roof, he is having trouble making or keeping friends at school, his sleeping issues have become uncontrollable and he has regressed into his OCD so far that it’s really starting to frighten me.

At night, he starts to become restless right after dinner. He starts flapping his hands ever so subtly, then he begins to lick his hands and fingers and just generally stars to panic. Over nothing.

Soon the pacing starts.

And then the retracing of his steps.

Three times to be exact.

Counting and re-tracing his steps before he crosses the road.

He simply MUST walk along the same cracks in the tiles. If he doesn’t: he says that the voices tell him that someone will die. And he doesn’t want that responsibility on his head so he does it.

Over and over again.

It’s just crazy.

If he gets up to us at night (which he inevitably does every night), he will go back over his steps from his room down the hallway to ours.

Three times.

So he’ll appear in our doorway then turn around and trace his steps again twice more and then appear in our doorway again.

 (Rinse and repeat for the trek back to bed).

It’s getting ridiculous.

He doesn’t even realise that he is licking his hands. Or that he is damaging them more.

And just today I got the fright of my life when we were crossing a busy road and Harley let go of my hand to run back IN THE MIDDLE OF TRAFFIC to retrace his steps.

He was oblivious to anything but the pressing urgency that was gripping him. I had Lucas holding my other hand and I couldn’t let go of him to go chase Harley and in that moment I knew that I couldn’t save both of my boys and in complete panic: I froze. I literally stood still in the middle of the road and screamed with all that I had in me.

And thankfully, THANKFULLY the on-coming car came to a halt. I sat down in the gutter (kerb) and cried while Lucas happily danced around in circles and Harley started licking his hands (as he does when he is anxious). I cannot believe that this is what my life has amounted to. I am furious that this stupid disorder has robbed my family of such peace.

My boy’s hands are ruined. Look at them!

Red raw, painful and bleeding. A daily occurrence lately.

And yes he uses a special soap free wash. I rub a special cream into them each night and bandage his hands but nothing will work when his hands are washed up to 60 or 70 times a day.

I’ve had to admit that this has gotten waaaaay over our heads. He needs professional help and I have started the ball rolling today by phoning his paediatrician, but the earliest appointment that I can get is almost 3 months away and that just won’t do. At the moment, we would appreciate all prayers and well wishes that we can get and I’m spending my evening tonight googling local psychologists and I will find whatever money I need to find to facilitate this happening sooner.

I’m back in the early diagnosis frame of mind which is really hard but I won’t stop fighting for my boy.

Ever.

Mark my words.

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.

Sanity comes at a price.

It was my birthday last week and my Mum said she had NO idea what to buy me so instead: she took me shopping!

And one of the things that I’ve always wanted was one of those little CD walkmans (Discmans) and some bright funky headphones. So she bought me both and I was absolutely STOKED!

(I think I may have been just as excited as I was when she gave me my very first Walkman when I was a teenager… Ahh…..the memories!)

I wasn’t sure if we would even find one in the shops because they are almost obsolete now with technology advancing the way that it is, but I was determined to find one all the same.

The main reason that I really wanted one was because I have a lot of teaching CDs that I’ve never had the time to sit down and listen to, and it would take me forever to load them all onto iTunes so this seemed like the next best thing to overloading my iPod.

Guess what? Not only did I find one, it only cost a low $44! Nothing like the hundreds of dollars that they went for when they first hit the market back in the 1980’s!

And there is an added bonus to these as well: They block out the incessant whining, screaming, crying and moaning that is an unwelcome constant in this place.

And for me…..you can’t put a price on that kind of peace.

Things have been more than a little rough around here lately. We’ve had problems with all 3 children on different levels and we have struggled as a couple to see eye to eye.

Like I said: Rough.

This week alone we have had some pretty huge fall-outs and meltdowns and Harley’s OCD quirks seem to have returned with a vengeance as have the sleep issues.

In fact, Mum and I were giggling today as we recounted the story to Paul of the night last week that he worked late and we spent literally hours trying to get Harley to stay in his room and sleep.

He had come out so many times one night that I finally resorted to piling up 2 heavy wooden chairs, 2 large suitcases, a cot mattress, a beanbag and cushions in front of his door to stop him coming out and even that only worked for a matter of minutes.

Mum and I took turns walking him back into his bed, reading to him, sitting with him, praying with him, brushing him and rubbing his back only to have him continue to refuse to remain in bed.

Lately, his OCD has extended to his walking in the sense that he has an uncontrollable urge to retrace every third step that he takes and he has to walk the perimeter of each doorway of every room that he enters before he can calm himself enough to actually walk inside. So walking him back to his room was made even more of a challenge by that!

He washes his hands literally 60 times a day so that they bleed and are raw and tender.

OCD in full swing is like something out of one of those movies where the audience laughs at the ridiculousness of the scene.  I remember watching movies such as Crazy People where the characters seemed so far-fetched that it really was quite laughable, but little did I realise back then just how debilitating living with OCD can be for not only the sufferer but their immediate family members as well.

My little Harley often complains that his brain is “full” or that it won’t slow down which causes him great anxiety and angst which usually results in him self harming in some way. (Like the excessive hand washing).

And lately, I think I may have had some insight as to what having a ‘full’ brain might feel like because I have had trouble getting my brain to engage when I need it too.

It has been sluggish but also frantic and somehow all at once?

I have struggled to make decisions (even more so than usual) and have desperately wanted to just escape and get away from everyone and everything.

Simply thinking straight has taken a lot of control and honestly it really seems completely futile because nothing….NOTHING is in my control at all right now.

But in saying that: There is a major difference between Harley’s autistic-ally wired brain and my neuro-typically wired one:  And that is the ability to switch off thought loops and obsessions at will.

I can choose to not think about things that overwhelm me. I can choose not to allow thoughts to override common sense and I can choose not to act out on impulsions.  Right now – he can’t do any of that.

I believe that he will one day be able to do this as well, but it will always be more of a struggle for him because of the way he is wired.

The good news is that he is wired to be superbly focused and intimately knowledgeable about his chosen interests. And this will help him to be amazing at whatever field he chooses to work in when he is older, but the downside is that he will have to learn how to just be.

He will have to learn how to slow down his thinking to give himself and his brain a rest once in a while!

He just needs to find what works best for him.

Writing it out and listening to music and teaching CDs are what work for me. Speakers such as Bill Johnson, Danny and Sheri Silk, and Joyce Meyer help me re-focus and replace the confusion with healthy thinking.

And this is why I so desperately wanted my Discman…..$44 is a very small price to pay for sanity I think.

Autism, haircuts and a mother who wants to run away!

I looked at my boys on Friday when they got home from school and realised that they were both long overdue for haircuts. I decided that it would be a good idea to get them done over the weekend because then I would have Mr Patient around to help me. But yesterday he had to go into work, and what was supposed to only be a few hours turned into 13 so he obviously wasn’t able to come with us.

Now, I’m not totally stupid – I wasn’t going to take all 3 kids out to a crowded shopping centre by myself so I wisely waited until today (Sunday) instead. I figured that the boys would be fine with the change of plans. And yes, I know what all you autism parents are thinking right now!

Silly SILLY girl!

Normally I would have written a social story or talked them through this minor change at the very least. And I should have learned from the numerous times that I have done silly things like this before – that changing plans without prior notice NEVER goes well.

Anyhoo….

**

We pulled up in the car park and before our seatbelts were even undone, the tears started.

It took Mr Patient almost ten minutes to coax the already-past-it Harley out of the car.

But getting him to walk wasn’t going to happen, So he had no choice but to carry him.

We arrived at the hairdressers and she asked the boys who was going to go first. And before they could answer: Harley took off.  He literally ran for the hills as fast as he could go. As you do when you have sensory processing disorder and you are confronted with being stuck in the middle of a crowded centre with strange noises, smells and bright lights.

So Mr Patient took Lucas and walked over to the hairdressers chair while I hot-footed it after Harley through the centre.

I eventually caught up to him and took my sobbing shaky little boy over down a quiet alleyway and stroked his head until he calmed. There was clearly no point talking to him. So I devised a quick plan in my head and we walked over to the nearby $2 shop where I bought him a squishy angry birds toy to squeeze. It seemed to do the trick and we managed to walk back and I was finally able to talk to him and ask him what kind of cool haircut he wanted. My distraction worked and we seemed to be right back on track again.

And finally he gave us a smile.

Not long from then, his turn came and he sat down in the special seat and (sort-of) let the hairdresser cut his hair whilst he squeezed Mr piggy vigorously. He stayed put to our delight and came out looking gorgeous.

We all realised that we were hungry so we decided to go and grab some lunch and started walking towards the food court congratulating ourselves on surviving so far.

Until we heard that tell-tale moan that we’ve come to know that means that trouble is looming. We turned around to see Harley crying and flapping furiously.

We sighed and I picked him up and carried him down ANOTHER side alley and it took a while but I finally managed to get to the bottom of this episode….It tuned out that some pieces of freshly cut hair had fallen down underneath his collar and was itching him madly. I could see that he was close to another meltdown and I knew I had to act quickly and I also knew that I had come unprepared so had to duck into a nearby shop and buy him another shirt.  I knew we’d never make it through lunch while he was in such enormous sensory overload.

So in ten minutes – with two of us holding him down and sprinkling baby powder on his neck and removing the old shirt and replacing it with the new one later – we finally made our way to the food court crossing our fingers, toes and anything else that we could think of!

But look at this:

A smile.

It was short lived because soon he started to obsess about having ‘dirty’ hands and wiped them vigorously with baby wipes whilst demanding that we take him to a restroom so that he could wash them properly.

But it was a smile nonetheless.

 

So, we gave in – took him to wash his hands and then again after he’d eaten and started to walk back to the car.

I saw this and grabbed my phone to take another snap – moments like this are precious.

And here’s the bit where I admit that I got home and burst into tears of complete exhaustion and got down on my knees and yelled at God.

Not because I’m mad at Him. Not because I think He gave us a bad deal in life but because I can’t for the life of me figure out why on earth he believes in me as much as He does.

Why does He trust me so much?

I know He will continue to give me the grace that I need to keep on keeping on but honestly, after today….I think I might go to  bed for about a hundred years! It’s all too bloody hard!

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 6^th 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.

Where do I go from here?

When you read today’s post – please keep in mind that I’m not looking for sympathy. I am working through this in my own way by writing it out. I am not angry, or depressed or complaining, but I have found myself to be at a bit of an impasse and not knowing which direction to head in.

I  love my kids and am fiercely protective of them but on occasion…..there are parts of their brands of autism that drive me stinking crazy. Hence this post.

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

Ok. Ground rules laid out, let’s begin.

Most of you know that both of my boys are diagnosed on the autistic spectrum, and most of the time I’m ok with that. But if I’m being completely truthful with myself, I can admit that a lot of the time I also feel quite ripped off.

And there’s another emotion circling overhead that looks a lot like jealousy or anger but I’m refusing to admit that either of them are possibilities. So for now they will remain known as ‘the unknown factors’.

OK  ;)

And it’s not so much that I’m ‘jealous’ of the normal families that I seem to see everywhere – because I’ve mostly dealt with the fact that this is our life and that it’s ok to be different, but surprisingly I’m MORE ‘jealous’ of those families that only have one child with autism.

I’m ‘jealous’ of the fact that they can focus on that child’s needs alone and of the lengths that they are able to go to, to ensure that their child’s needs are mostly met.

I read stories about new techniques that they’ve learned and methods that parents have implemented and wish that there were some way that I could make them work for us. But I know that I can’t put one child’s needs on a higher priority than the other and I know that I am not able to always to meet both of their needs at the same time.

Sure, I join these parents in rejoicing when their child makes progress or learns something new but there’s a part of me that inwardly cries out: “My child could possibly learn that too if he were the only one I had to put the extra time and effort into”.

Because let’s face it. There’s no doubt that raising children is hard work full stop.

And raising multiple kids kicks it up a level. But raising children with a special need kicks the difficulty factor up a helluva lot of notches.

So trying to foresee and plan for 2 kids with completely opposite high needs – is nothing short of bloody ridiculous.

Most afternoons in the car on the way home from school – there is screaming and/or crying.  And most of these episodes can be attributed to the two boys driving each other stark raving MAD! The problems arise because they are both needing to escape from their brain overloads but because their sensory profiles and emotional needs are polar opposites – they do what calms them in completely different ways.

Harley goes into a trance like state where he shuts down and sits quietly with his arms wrapped up around his bended legs. He finds comfort from gently rocking back and forth and gazing out the window. I have learned not to ask him about his day or try to converse with him until he has had his down time and I know he will come to me when (and if) he’s ready to talk later on.

And this would be great if he were able to do this in peace each afternoon. Ella and I would gladly leave him be until he was ready for company. If he could spend the car trip home defragging from his day – I’m sure that our entire afternoons would be a helluva lot smoother.

But our problem is that Lucas also needs to defrag as well. But he gets his release from vocal stimming. He hums, makes throaty repetitive noises and flicks his fingers over and over again. He talks non-stop in boring monologues and pointless rhetoric.

And as you can imagine…..all of these…drive….Harley…..CRAZY!

So then the tears begin.

The tears quickly turn to moans, then to thrashing in his seat and eventually he screams at Lucas with his hands over his ears begging him to stop making those noises.

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

Do I try to stop Lucas from making noises (that really are quite harmless) for Harley’s benefit?

Or do I try to teach Harley to ignore it and give him headphones to wear instead. (Which I have done many times).

But then, there’s the part of me that wonders if I should be doing a better parenting job. I wonder if I should be using situations like this to teach them both a thing or two about life. Should I use the moment to teach Harley that there will be many times during his life where things  will annoy, frustrate and irritate him but that he needs to learn to suck it up occasionally. Or should Lucas be taught that his noises are irritating to other people and that he needs to control himself better and point out that people in the real world will tell him to shut up if he continues that into adulthood.

Well I suppose the time will come that both of these issues will need to be addressed, but then while my own brain is processing these thoughts, my mother heart takes over and tells me that it’s my job and responsibility to provide what they BOTH need and give them the grace to wind down from a busy day in their own individual ways.

And then the guilt begins.

Eventually my head starts to hurt and I react like I did today: Today it all got too much for me, so I pulled the car over on the side of the road, turned off the ignition and climbed out of the car for ten minutes to let them fight it out alone. I stood beside the car with my back turned to them just taking deep breaths and I counted to 100.

I totally bailed on them both.

And I did it because I simply didn’t know which child to help. I couldn’t prioritise either of their needs and problems and I couldn’t work out which decision to make. All I knew was that I needed to get as far away as possible from the chaos that was unravelling right before me and that I needed to escape immediately.

Anyone that has ever tried concentrating in traffic whilst children scream, throw things and kick the back of your seat will know that in situations like this, escape is not only highly desirable but also entirely necessary.

I did what I had to do to prevent me from having a car accident. And I would do it again in a heartbeat.

I’m still left wondering: How the hell do I fix this?

And why doesn’t anything seem to work?

I’m sure that both of them would be AOK if they didn’t have each other. If I only had Harley, I could provide that quiet safe place. If I only had Lucas, I could allow him to make the noises he needs to and run and bounce to his heart’s content. But I wouldn’t want to even imagine life without either of my precious wonderful boys.

But this isn’t just about a car trip each afternoon. As my friend puts it – I am living in a constant combat zone.

If it’s not the car, it’s the dinner table. If it’s not the dinner table, it’s in the bathroom with gurgling and teeth cleaning noises. Or the trampoline and the joyful yelling that goes along with it, or the TV noise levels, or the volume on the iPad. We leave one combat zone (the car) each afternoon to leap straight into another one that’s equally as exhausting and demoralising. And it continues well into the sleep combat zone.

And then I’m back to my original thought: Am I jealous, angry or is it something more?

Where do I go from here?

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

Look closely…It’s all in the eyes…

At first I really struggled to know where exactly to start this post, so late last night I sat down with a pen and paper and wrote out as many random words that came to mind in an attempt to try to figure out what was really bothering me.

I came up with: bewildered, annoyed, helpless, frightened, angry, exhausted and I kept coming back to the one word that crept up more often than the others: frustrated.

And I determined to try to find out why I kept coming back to that word.

I realised that when you’re a parent of a child on the autistic spectrum, you are thrown directly into the deep end and forced to assume the role of not only parent but also that of ‘interpreter’ and “translator’ and you take on this role often several times every single day whether you want it or not.

And most of the time I am totally ok with that, but then there are days that my inability to decipher and decode what my son’s actual crisis is about is when the words like exhaustion, angry, frightened and helpless start to creep in as well.

Last October I took the children home to visit my Mum in the school holidays, and while we were up there, we attended an 80th Birthday party for a close friend that Mum had helped organise. It was a great night and I think only a handful of people actually know what went on behind the scenes in our little world that night. I’m sure that most partygoers were blissfully unaware that my little boy was breaking his heart and clawing at himself in major distress only 2 rooms away from the festivities. Mum was helping in the kitchen and also unaware at first of the mayhem I was dealing with.

And that’s because I’ve become very skilled at removing my distressed child from the attention of onlookers in situations like that night before the brown stuff starts hitting the fans. It’s become my superpower

That night last year was triggered by one small remark that I had made offhandedly to Harley who I saw drinking his second can of soft drink. I casually said to him: “You’ll make yourself sick if you drink too much of that stuff”, and I walked over to greet someone else that had waved me over.

As I started chatting to this lady, I glanced over her shoulder and saw Harley’s face contort and his body stiffen and I knew I had to get him out of there immediately. I JUST knew. I excused myself and apologised quickly and ran the eight or so paces over to Harley and grabbed him under my arm calling out to Ella at the same time to keep on eye on Lucas. She nodded knowingly and grabbed his little hand and skipped outside with him towards the grassed area.

I love that girl.

Anyway….I got Harley outside through the fire exit and sat with him as he bent over the 2 foot brick wall flapping, screaming and crying his little eyes out. He was virtually non-verbal but I managed to figure out that the groans,grunts,screams and cries were to the tune of “You said I’m going to be sick….I don’t want to vomit, I don’t want to be sick, I’m so sorry, I’ll never drink lemonade ever again”

Oh yeah…..Did I mention that one of the traits of  individuals on the spectrum is EXTREME literalness? Well it is.

He had convinced himself that he was going to be physically sick and because he is a massive germ-o-phobe….this was totally unacceptable to him. He stresses if someone even SAYS the word vomit in his hearing so the thought that he might actually be sick himself, had done his head in. I sat there with him for what seemed like hours and I managed to get him to calm down (well, the screaming and crying stopped but the rocking and the nervous flapping hung around a lot longer) and I walked him back inside because he was begging to wash his hands.

As I waited for him outside the bathroom, I saw a friend who I grew up with and hadn’t seen for years, and we started chatting. He and his lovely wife have a beautiful daughter with PDD-NOS and I only had to say that Harley was “having a moment” for him to understand exactly.what.I.meant.

Shortly afterwards, Harley walked out of the bathroom and my friend (God bless him), took one look at my boy and gave me a hug saying: “Ok……You need to leave right now, I understand completely….it was great seeing you.”

I picked Harley up like a little infant and carried his limp sweaty body out to the car with Ella and Lucas following me. I placed Harley into the car seat but he clung to me like a baby koala refusing to let go.(This child is 8 mind you). I couldn’t stand there holding him with my back bent on that angle so I lifted him out and sat with him in the gutter. And there we sat for another half an hour rocking and the tears stopped wetting my shoulder and he eventually released his grip on me and we were able to all get into the car and drive home.

My mum told me later that my friend had said that when he looked into Harley’s eyes, it spoke volumes and that everything made total sense to him at that moment.

I’ve learned long ago that parties and Harley just don’t mix. THIS is why we regretfully decline a lot of invitations (and probably why they’ve stopped coming in anymore).

And it’s important to mention that it wasn’t just the literal comment  of mine that sent Harley spiralling downwards that night, that comment was only the trigger. I had already noticed anxiety rising in him earlier on due to the crowds, loud noises and unfamiliar surroundings. He had his headphones on but the noise wasn’t the only thing bothering him.

Look closely. Those eyes tell a lot. They are saying: "I'm nervous but I know Daddy will protect me"

Which all leads to me yesterday.

Yesterday was the Easter hat parade at my children’s school. Just those words induce horror in a lot of ASD parents and it was no different for me. When I arrived, the kids were all seated in their classes in the quadrangle with the parents and visitors all sitting and standing in a large circle around them. There were a LOT of people there and each class danced around in a circle to very loud and lively music one by one.

Harley’s class got up and from 20 metres away I saw his eyes and said to my friend: “Uh-Oh, he’s gonna blow”. I just knew. It was written all over him and though he may have looked shy or reserved or even nervous to the average Joe….I knew exactly what I was looking at. I’ve seen it many times before, it was unmistakable.

So how did I know?

I have been asked many times how I “know” when he’s about to topple over the edge from coping to a soggy mess and until yesterday I was unable to actually pinpoint exactly how I know. The answer is in the eyes. As my friend pointed out at the party, it was in the eyes. Yes, the eyes tell a LOT. It’s ALL in the eyes.

These eyes say "I'm safe and happy".

As soon as the parade was over I took Harley by the hand and walked him over to his teacher.  He stood beside me silently head butting me and yanking at my hand and I asked her to look closely at his face and body language and explained that THIS is what the lead up to a huge explosive meltdown looks like. I asked that if she ever sees this face….it would be advisable to help him escape to a quiet place as quickly as possible. I explained that it’s when his sensory system is about to blow and that it’s something that you preferably need to get to in the early stages but if not – you need to deal with it ASAP.

I walked him into the quiet vacated classroom and he sat in the corner crying, rocking and shaking. His eyes were filled with pain, with fear and they were pleading for me to fix it all for him. To make it all go away and to help him to soothe himself because he knew he was past the point of no return. He didn’t speak a word but his eyes told me all I needed to know. The rest of the day was a complete write off and ended badly with the effects on the rest of the family carrying over well into the night.  I put on my brave face and acted all nonchalant because I’ve gotten that down to a fine art now But yesterday was hell in many ways. Hours and hours of inconsolable crying and screaming will do horrible things to most people, and I for one, cried long into the night.

And this is where the word frustrated comes in.

Everyone assumes that as his mother that I always have the solution. That I can come along and save the day and that because I can read him that I can make it all better, but this is not always the case. And most of the time I wing it all anyway because what may work one time isn’t guaranteed to work the next. It’s frustrating to be able to predict most meltdowns yet not know how to deal with them.

I was so frustrated as I watched other families laughing, talking and enjoying their picnic lunches with each other, while I had to go and fetch the head of junior school to retrieve my son who had locked himself in the boys toilets crying and screaming only to run out and escape and be untraceable for the next half  hour.

I was so frustrating to have to make my youngest child miss out on his first ever book parade after activities and it was equally as frustrating to have to go over to middle school and ask my 12 year-old daughter to leave her friends and sacrifice her lunch hour to help me by watching one of her little brothers while I searched for my absconder and do massive damage control when I finally found him.

It was even more frustrating for me to see other children on the spectrum sitting quietly with their parents eating their lunch while I bravely held back the tears yet again. I wondered what they had all done that I had forgotten to do?

Why were their kids coping and mine wasn’t? What did I miss?

How come no-one else’s child lost it on such a grand scale?

I finally convinced myself that these other parents must do what I do and whip them outta sight at the first inkling of an explosion too because any other answer would have been far too tough for me to bear.

So yeah….. Frustration is the word of this week.

But next week I’m aiming for fantastic
What are you all aiming for?

I am Mrs 79. Pleased to meet you.

I’ve been thinking a lot lately about the environmental factor in autism. Sure , we know it is only one possible theory as we already know that it’s also made up of a genetic component. And yes, I know there are certain people out there with theories that vaccinations have triggered off those children that were already genetically pre-disposed but that is an argument that I am NOT going into as this is not the direction that I want to take this post in.

So, I know that environment is only one small part but I definitely feel that it can be a big part nonetheless. Tony Attwood has said that to reach a diagnosis of aspergers, it is like ‘completing a 100-piece jigsaw puzzle. You need 80 or more pieces to complete the picture’.

 So, my boys are obviously made up of 80 or more pieces (and I believe the husband is too) . He often jokes to me that I am only one piece short of receiving a diagnosis myself.

In fact he regularly affectionately calls me ’Mrs 79′. He is referring to the obsessions that I have developed over the almost 14 years that we have been married. When we first got hitched, he took a photo of our master bedroom to show the difference between his side and mine.

His was spick and span, neat and tidy and anally perfectly organised. And then my side……clothes thrown everywhere, books piled high and balanced precariously on the bedside table, an abundance of moisturising creams and make up in the drawer that was regularly left open and shoes strewn carelessly over the floor.

You get the picture.

I deliberately misplaced couldn’t find that particular photo anywhere to put it on this post so you’ll have to take my word for it!
I was young, messy, lazy, nonplussed and regularly made fun of Mr Patient for his pedantic and obsessive ways.

I clearly remember (not knowing about ASDs back then) that he often had what I can now see were actuallymeltdowns if things didn’t go exactly as he’d imagined they would or if plans changed without his prior knowledge. For example: Before meeting me, every 1st Saturday of each month was spent on the ‘inside’ of the house cleaning, and every other Saturday was when he would do the ‘outside’ (mow the lawns etc). So you can imagine his freak-out the first time that I invited friends over for lunch on ‘Outside Saturday’  week. Or made a picnic and suggested we drive to the beach on ‘Inside Saturday’….. He struggled to say the least!

But then as the years passed, I became more and more obsessive myself. I became the mother that had all of my children’s clothes hanging on the same coloured hanger as the shirt: White shirts on white hangers, blue shirts on blue, orange shirts on orange hangers and they were all grouped together in the colours that blended.

The blue shirts were next to the green which were next to the yellow which merged seamlessly into orange etc. No-one else was allowed to touch the clothes…….including Mr Patient and I would flip out if anyone so much as looked at the wardrobes.

And when I hung clothes on the clothes line – blue clothes HAD TO be hung with TWO blue pegs. I simply wouldn’t cope if you used a red and a blue peg. *Gasp*

I had also started to turn into a neat freak wanting everything perfectly in its place and working myself to the bone to make it happen. I would screech at the children if they had more than one toy out and I was unable to leave the house in the mornings until ALL of the beds were made and the dishes were done on the off-chance that SOMEONE would come and visit. (No-one ever did). I really started to be bothered by all of this and questioned myself as I knew that this wasn’t the real me.

So I took myself off to see a psychologist fearing that I was losing it big time!

I had a lot going on; My Dad had just passed away, Harley was only recently diagnosed, I had suffered a particularly nasty case of glandular fever (mono) that almost turned into CFS and my body was in shut-down due to the 4 major surgeries it had endured in just 2 years.

My immune system wasn’t coping and my stress levels were at an all time high. The psychologist helped me to see that everything else in my life was literally spiralling out of control and I so desperately wanted to gain back some control. And the washing was one thing that I actually COULD do something about.

She gently explained that what I was doing was a form of ‘normalizing’ my life. By controlling these mundane every day things so closely I was able to take back some ground that I thought I had lost through circumstances beyond my control. Nowadays – I still LIKE my clothes to be on the right hangers but if they aren’t, I don’t lose it, I’m able to just shrug my shoulders and move on!

I have realised that it’s not the end of the world if a blue shirt goes on a red hanger and my house RARELY looks like a show home anymore. (I have three children for goodness sake!)

And yes, there is actually a point to this – stay with me, I’ll reach it eventually…..

So, back to the environmental factor in autism.

I was never a particularly obsessive person, in fact the bedroom photo story proves that point perfectly, but when stress and circumstances were combined……I did develop some very obsessive tendencies that are often associated with spectrum disorders.

So it is interesting to me now to look back and realise that environmental factors DO in fact play a large part in autism.  And the term ‘environmental factors’ does not just apply to untested chemicals, pesticides, flame retardants, detergents etc.. but things like the circumstances of our life, or the environment in which we live and also our everyday surroundings .

I wonder that if I was married to someone who was as sloppy as me and also didn’t care for routine, if things would have been different? I may not have dived into these obsessive natures that I often witnessed in my husband as HIS coping strategies and I wouldn’t be comparing my non-coping signs to those of individuals on the autistic spectrum?

I guess I’ll never know.

But my mum tells me that as a child growing up, I didn’t struggle in social situations, I made friends very easily and  I was NEVER obsessive or needed routine or structure.  I thrived with change and I know for myself that I have never felt particularly  ’different”’or had any trouble understanding body language or facial expressions.

Yet……now that I am the only NT in (what may as well be called) a house full of aspies – I have somehow been ‘moulded’  into an honorary aspie if you will. I think it’s just a case of sink or swim.

I have needed to adapt to my surroundings and I have had to choose to see things through a different lens.

I may have gradually gone from perhaps 20 pieces, to 30, then to 40 and now I may possibly be up in the 70s so I truly believe that the environmental factor HAS played quite a major part here.

It surely makes sense. I live it and breathe it. It’s all I am surrounded with. It’s something that I can never and would never WANT TO escape.

It’s all A-OK with me because 79 is a FABULOUS number after all.

Have a great weekend all.