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.

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.

I’ve still got the pom-poms but I shake them less these days.

This is a similar tumour to mine but about half the size of mine....image via wikipedia.

This November it will be eight years since I had life-saving brain surgery to remove a tumour that was growing too close to my brain stem. I have mentioned it on this blog several times and it has never been a no-go topic for me but at the same time; I don’t instantly tell everyone that I meet because most of the time it’s just not necessary and rarely comes up in everyday conversation.

But people often look at me and know that something is different even if they don’t know why. In much the same way as my 2 high-functioning autistic boys often look “different” in how they behave but it’s not always obvious exactly why that is.

In my case: The tumour that I had, was tightly wrapped around both the facial and hearing nerves on the right side of my head. And two major side effects of this particular surgery are hearing loss and facial palsy in varying degrees.  This palsy may or may not get better over time and the old saying that “it’s different for everybody” certainly applies here.

I lost all of the hearing in my right ear and now have SSD and I did not regain my facial nerve back completely. That’s why people I meet can tell straight away that something is different about me. I have been left with a very crooked smile and the entire right side of my face has little movement. Most of the pictures of me that you find on this blog or anywhere else on the web (Facebook, Twitter etc) have been carefully screened by me first so that it’s not strikingly obvious to the average person.

But if you were to meet me in person….you would more than likely notice the palsy even though it has improved dramatically over the years. My close friends tell me that they barely notice it anymore but I’m not sure if I believe them though!

Most of the time, I don’t let my crooked face bother me too much, but if there’s a camera around – I never give an open-mouthed smile. And if I cry (which I do a lot), it’s painfully obvious as I only have one tear duct so only one eye goes puffy and only one cheek gets tear-stained. So I try not to cry in public!  Sometimes I find myself in social situations where I meet new people and notice them trying hard not to stare at my mouth when I talk or laugh. I can see that they are dying to know “what’s wrong with her face” but I sense that they would never ask me, so in moments like this – if it’s appropriate and I’m likely to encounter them sometime again in the future – I tell them why.

The result is usually mild embarrassment for them or fascination and often times: curiosity.

I’m fine with either response but I do so love it when I get to share my story and my triumphs and blessings as a result of going through such a rotten time, because I try really hard to not focus on the icky stuff that I went through after surgery such as self loathing, depression, grief, sadness and pain but to make myself see and verbalise the good things that came from it. I’m still alive aren’t I? And that’s got to be a good thing!

I truly do believe that God works ALL things out for our good and that trials strengthen us and develop our character.

And this thinking is similar to how I am now beginning to approach our family’s journey along the autism highway.

Often if we’re out in public and I notice people observing my son(s) behaviour(s) and wonder if I should offer up an explanation for it. Part of me wants them to understand the ‘why’s’ straight away but I’ve learned that this is rarely the case anyway. I see people watching them happy flapping or twirling around in circles carelessly and I also get the tsk tsk posse when they lose it or meltdown in public. People stare at that which is different. Right or wrong – it’s human nature and it’s just the way it is.

Once upon a time I would tell anyone I caught staring – regularly in fact – but nowadays, I usually decide against it because most of the time, it’s totally unnecessary for me to tell strangers and it’s simply none of their business and would serve no real purpose anyway. And it’s not because autism is a big secret or something to be ashamed of – because if that were true – I wouldn’t have such a public blog that my friends know about. However, I don’t exactly wear a sandwich board around my neck announcing it to every passer-by that I encounter either!

The difference is that the people who read this blog WANT to read and want to know more about life with aspergers, whereas people you meet in the street often have no knowledge of autism and don’t know us personally anyway.

So why don’t I announce it as often these days as before?

Well, I think it has a lot to do with the fact that I’ve discovered that by only drawing attention to the negative side of aspergers….I was only really telling one side of the story.

So take for example a hypothetical situation like my son having a meltdown in a supermarket. Once I would’ve played the autism card and “put strangers in their place” assuming that they were judging my parenting, but now: in situations like that, I ignore the stares and judgmental glares and only answer people on the odd occasion that they offer to help. I usually say something along the lines of: “Thank you but my son has autism and is a little overwhelmed right now. He is a great kid but just not coping too well at the moment I’m afraid”.

Because if my son’s meltdown is their first ever encounter with autism, then its possible that this may be the only thing that they ever associate with autism in the future. And I don’t want people stereotyping these kids as badly behaved, spoilt or bratty because I know that they’re not.

Autism parents know that raising these kids is hell on toast some days and Mr Patient and I often scream at the heavens: “WHAT NOW” but raising these special kids is not without its rewards either.

image via wikipedia.

We all know that there is so much more to our kids than bad behaviour, temper fits, meltdowns and rigid and inflexible thinking. So I’m making it my mission to showcase the amazing and beautiful parts of autism too.

A few weeks ago, I was out for afternoon tea in a local café with my 3 kids and a close friend and her child who also has Aspergers. Her child is a similar age to Harley and all the kids get on marvellously despite their respective social difficulties. There is an understanding between them all that is really beautiful to watch. We ordered our meals and the children sat beautifully and behaved remarkably well. They laughed, we chatted, and after we’d eaten, the kids all ran off to play in the playground. Our Waiter came over and commented to my friend and I on how wonderful the children were and how impressed he was with their manners and behaviour.

My friend smiled at him and asked him if he realised that 3 of the 4 children had a diagnosis on the autism spectrum, and he was truly amazed!

I’m not sure if our well-behaved and adorable children were not lining up with any pre-conceived ideas that he may have associated with autism but he was genuinely surprised and praised us for our remarkable dedication to raising them. (Which we lapped up of course!)

Then my friend pointed out to me the importance of praising our kids to strangers and highlighting that they really are remarkable even though sometimes it’s more of a struggle for them.

But the point that I guess I’m making here is that yes – I still want to spread awareness and I’m not hiding anything or trying to gloss over the hardships, but if I only ever take the hard times as opportunities to teach about autism, I’m not being completely fair to my kids or other individuals on the spectrum.

You can be assured that I will still probably write many posts in the weeks, months and years to come lamenting how damn hard this whole raising autistic kids thing is – because one thing I’m not in – is denial. It’s definitely not all roses, rainbows and sunshine but I will try to save those rants and raves and episodes of manic rage for this blog where the people who read it understand where I am coming from and already know that I adore my kids warts and all.

But I’m going to make a conscious decision to choose my time and place for that kind of rant more carefully.

Just like I don’t walk around telling everyone who even so much as glances at me that there is a reason that I look like I’ve had a stroke or bad plastic surgery – I will save the cold hard facts for appropriate situations or when there is a relationship formed with the other party. Autism is still so unbelievably misunderstood and unfortunately, many people still associate it with tantrums, screaming and uncontrollable rage but many fail to see the loving and precious and amazing side as well.

Often as a mother of 2 children with autism I OFTEN fail to see past those tantrums, screaming fits and rage but I have the advantage of KNOWING that there is more to it than that. Other people don’t.

I will always be on the sidelines with my pom-poms and high kicks cheering on my kids and believing that they can do anything that typical children can do and I will remain their strongest advocate because I’m passionate about creating awareness and understanding for them, but I’m going to go about it in a completely different way from now on.

And if someone comments on an achievement that my child makes – I will use that opportunity to sing his praises and teach that there are no limits to what children on the spectrum can do. I will no longer use their hard and non-coping times as teaching exercises because I now see that I’ve had it wrong all along.

As the clock ticks…

I’m sitting here in the waiting room at the university  psychology clinic. It is stuffy and the ticking of the clock above me is annoying me to say the least. The woman sitting cross from me is chewing gum with her mouth open and there are 2 more women beside me showing each other photos of their pets on their phones. They are all making me crazy. I’m feeling my tension levels rise with every tick.

Yes , my senses are on high alert because today is the day that Harley is undergoing a cognitive and behavioural assessment. And there is a lot riding on today.

The special needs department at school asked me to get this done over 12 months ago but to do it privately would have cost us over $900. So we opted to go on the waiting list at the university where it is done for free.

And today, our turn arrived.

I am nervous and I am excited and I am very anxious. I know that it’s for his own benefit but I also know what it is going to take out of him.

I’m expecting a mentally and physically drained kiddo when he walks back out those doors and I hope that I am enough. He is going to need patience, understanding and space….a lot of space. I’m not sure that I am up for it to be honest.

 The rain pouring down on the roof outside isn’t helping to calm me as it usually does- it only makes more aware of the fact that letting him run it off in a park later isn’t a viable option.

I wonder if he will perform wonderfully or terribly. I’m kinda hoping for a bit of both to be honest.

Because if he performs well..I can be proud of him and know that I have done a great job preparing him, but if  he does badly – the results will show that he needs more work therefore (possibly) more funding and aide.

Talk about a catch 22.

 I know my boy is super smart. I know he is more than capable and that he really really wants to do the right thing. But I also know that even BEING in the classroom sometimes drains him of all of his coping mechanisms and there’s no brain power left to focus on school work.

And that’s really tough for him. He KNOWS what he needs to do but he can’t make his body and brain follow suit.

His communication difficulties make it a struggle for him to put words to his anxieties. He can’t explain why picking up that pencil hurts his fingers, he doesn’t think to tell the teacher that his ears are hurting from the marker writing on the whiteboard and it doesn’t occur to even himself that maybe the buzzing from the fluorescent lighting overhead is causing him physical discomfort to the point where he can no longer focus.

So his brain tells him to act out.

He might slam his pencil down on the table, or kick his chair out from under the desk or collapse in a heap with his head in his hands because it’s all.too.damn.hard.

Or maybe he will take flight. He may stare out the window, allow his eyes to glaze over or become engrossed in the fibres of the carpet on the rug.

This behaviour in a spectrummy child is not a sign of naughtiness or defiance. It is not because they are bored and it’s rarely because they want attention. Most of the time it is because they are overloaded and anxious and unable to express any of this to anyone.

And I get that. The ticking clock above me is driving me bonkers, I’m ready to throw something at that woman with the gum and I’m not nearly as far on the spectrum as Harley is….if at all.

One of the purposes of this testing is to determine his strengths and his weaknesses. It is to use as a tool to cater teaching styles that are tailored to help him reach his full potential.

But first his potential needs to be discovered because often with children on the autistic spectrum – their behaviour masks their potential.

And this boy is going to go a long way in life. I just KNOW it

~~~~~~~

A visit to the Doc

Today was a particularly hard day with Harley. For the better part of the morning he was an emotional wreck. He was an explosion waiting to happen and I wasn’t about to be the one to light the fuse so I walked on egg shells for all of our sakes.

The only method that worked here at home with the boys was the ole divide and conquer. I sent each of them to their own rooms to play separately.

I really HAD to do this otherwise there would be no point in keeping Harley home for a circuit breaker day. I simply couldn’t afford to ruin it by allowing them to bicker and argue all day, it was the best option of all.

This afternoon though, I did have to take Lucas to the paediatrician for a basic follow-up appointment after his formal aspergers diagnosis back in March, so Harley had to join us for that. I went prepared with the boy’s DS’s the iPad and some pens and paper. They both behaved brilliantly in the waiting room and I was SO proud of my boys.

Not long after we arrived another mother walked in with two little boys of her own and sat down beside us to wait. She smiled at me but she looked absolutely exhausted. Her eyes were almost hanging out of her head and she looked like she had the weight of the entire world on her shoulders.

I recognised that pain. All too well.

Her youngest son (who was 4) asked her in fragmented speech if she would help him to do the puzzle that he was holding and she sighed in resignation and lowered herself to the floor to join her son.

But he jumped up and waved his arms about frantically shouting “No Mama, I seat on your knee I will, no you on the floor”.

She looked up at me and rolled her eyes saying “The things we do hey!” as she climbed back up onto the chair drawing her little boy onto her lap.

I nodded in agreement and smiled back at her.

The little boy (his name was Steven) glanced at me shyly, frowned and then buried his head into his Mum’s shoulder whimpering. “That scary lady look-ded at me”

The mother smiled at me apologetically and offered me an explanation to her son’s behaviour : “I’m so sorry about that – my son is still learning how to be around other people” she sighed sadly and took a deep breath….“He has autism”

“I know he does” I answered. “It’s ok….really”.

“You do…..I mean….How did you….what did…I mean, I KNEW you looked familiar, but….can you remind me how I know you though, I’m so sorry but my memory is letting me down lately”…..she trailed off sadly.

“No, we’ve never met” I giggled gently, “Well to my knowledge anyway, it’s just that…..I recognised the signs” I ventured hesitantly.

“Wow…..How?” she asked amazed.

At that point I gestured to Lucas and Harley who were sitting in the corner with their heads down focussing intently on their Ds games. Harley was also rocking back on forth on the spot and Lucas was humming to himself.

 “What do you see” I asked her….

She studied them for a bit and then she almost shouted:

“Oh my goodness! ….  Are your boys….. I mean, have they….Um, do they also have autism?” She asked shyly.

 “Yep, sure do” I answered. “Both of ‘em”.

 “Wow…..I would have never have picked that” she said and then stopped herself abruptly……“Oh my God, I just did that EXACT same thing that I HATE other people doing to me”

I laughed.

“I HATE it when people tell me that my son doesn’t LOOK autistic and now I’ve gone and done it myself!   It’s SUCH an insult when they say it to me….like I’m lying or something!”

I laughed again and assured her that it wasn’t a huge deal. And then a few minutes later it was our turn to go in. I said goodbye to her and waved at Steven who had now warmed up to me and walked into the Doctor’s office.

The appointment went brilliantly!

He did the usual weight, height, blood pressure checks and then we started to chat about Lucas’ therapies.

He asked me about his early intervention group and I told him that it’s working out wonderfully.

He asked how he was going at Pre-school with his aide…..and I answered: brilliant again.

Next the Dr wanted to know if we’d finalised a school for next year and I answered that yes, that was taken care of too.

He also wrote down the names and numbers of the best speech pathologists that he could think of and sympathized greatly with our dilemma after the last one fell through.

We were just about to pack up and leave when he started to tell me about a social therapy group run by a wonderful lady that he described as a miracle worker for children with an ASD.

Harley playing at the group that he attends on Thursdays

And yep….it’s the same awesome lady that I wrote about *HERE* and Harley has been attending for almost 2 years now.

The Dr looked at me intently and made a remark that has put him in my top 5 all-time favourite people in my children’s medical life….he said:

“Fiona, can I just commend you on how much you do for your children. It really is so wonderful to see a parent like you that has taken your son’s diagnoses and run with them and given it your all. I have no doubt in my mind that your boys will be functioning so well once they reach adulthood that they you will barely remember the harder years that you are in the midst of now. It is only up from here on.”

Well, you could hardly wipe that grin off of my face after that!

I can finally tell all those people in my life who criticise me and my efforts – that it doesn’t matter what they think because my children’s Dr thinks I’m awesome!

Sleep is an enigma here.

 

If only he stayed like this all night *sigh*

Everybody knows that when you have a newborn baby in the house that you’re probably going to have minimal sleep for at least 6 weeks. Actually – scrap that….Most people I know would extend that to maybe 12 months or at least until the worst of the teething months are over.

But what about families like ours where 8 years later there are still no signs of your child ever sleeping through?

~~~

Yep, that’s right, we are still waiting for that to happen with our “newborn” eight-year-old.

Of course there have been days and even weeks where Harley has shown us that it is possible, but sadly, we keep reverting back to nights like last night.  He currently takes mood stabilising and anti-anxiety meds and has done for almost 2 years now and it works really well to help him fall asleep.

But that’s not the problem. Falling asleep and staying asleep are two entirely different things.

I could probably count the number of times on one hand that he has actually gone more than a week without waking us up in the early hours of the morning.  Usually between 2 and 5am he is up at least 10 times. And when he’s awake, he makes sure that EVERYBODY else in the house is also awake.  Harley’s room is at the opposite end of the house to ours and his brother and sister’s rooms are in the middle. Sometimes he will lay in bed crying or calling out (which wakes them up) but most times he walks quietly up to our room and stands beside our bed and calls out “Mum….Dad”..until one of us throws back the covers and marches him back to bed kicking and protesting wildly and loudly so they are woken up ANYWAY!

Rinse and repeat several times per night until you reach our point of utter exhaustion.

How very considerate of him….

Today I had downed 4 coffees, a Berocca multi-vitamin drink and a diet coke by 10 am just so that I could function well enough to survive Lucas’ early Intervention Group. And that’s not only incredibly unhealthy but pretty ridiculous and desperate measures to be taking.

This morning when I walked out to the kitchen to prepare breakfast – I was presented with 3 tired, irritable and sleep deprived kids and a husband who looked like death warmed up who had opted to go into the office later than usual just to catch another hour or so of much-needed sleep.

I have been to the paediatrician about this a few times now and each time he keeps handing me a prescription for Melatonin.

So why haven’t I filled it already?

Well – because it’s expensive for one and secondly because with Melatonin you can’t give it every single night because if you don’t alternate it and have days where you DON’T give it, the child builds up a resistance and it stops working.

It’s those in between days that scare me.

What are we going to do on those days?

At least now he is falling asleep. I shudder to think what he will be like on the days after a melatonin-free night.

I have thrown the question out there on Wonderfully Wired’s Facebook Page and many parents have written their personal experiences to me and I must say that it’s been very encouraging to read.

It help to know that there are several other families out there that have a child like ours and reaffirms that it’s nothing we have or haven’t done to make him like this.

It’s got nothing to do with us not establishing solid sleep routines when he was a baby (Thanks for nothing anonymous mothering helplines).  And it is not because we aren’t strict enough with him. (Thank you too well-intentioned mothers at playgroups).

And I know this because EVERY night at 5:30pm he eats his dinner.

At 6pm he has a bath or shower,

At 7pm he has his tablet and cleans his teeth and is in bed by 7:30pm for a story without fail. And it’s always been this way for as long as I can remember.

Is it just me …or does that look like a pretty solid routine?

And 99 nights out of 100 I stick to it.

From speaking with other mothers of ASD kiddos, most spectrum children have sleeping issues of one type or another. And I have only ever read and heard positives relating to Melatonin.

So tomorrow I am pulling out that dusty script and I am marching down to our local compounding chemist and purchasing what seems to be our very last glimmer of hope.

Fingers Crossed…..

Personally, I LOVE a bit of randomness!

I think I hit the jackpot finding an image of a waffle and a truck together! image via www.dribbble.com

Last night at about 10pm, I was sitting down in front of the TV just relaxing when I heard some little footsteps heading towards me. I looked over and saw Harley making a beeline for me. When he was close enough I looked at him and asked him what the matter was.

“I like Sonic” he replied and turned on his heel to head back to bed.

“Hey….wait a minute” I asked him grabbing his arm to stop him from leaving. “Did you come all the way out here just to tell me that?”

“Yes”, he nodded.

“Um, I know honey – you’ve liked Sonic for a while now” I replied.

“Yes, but that was when I was seven. Now that I am eight, I need to tell you again for this year” he said with conviction and then turned around and walked back to bed!

I’m used to this kind of randomness from my boy. One of the first instances of this was when he was about 3 years old (about 18 months before he was diagnosed with aspergers). We were at church and it was Easter time. The Sunday school teachers had gotten all the kids up on stage so that the parents could ooh and aah over the cuteness of their cherubs.

The leader had a microphone and asked several children “What does Easter mean to you?” and held it up to most of the children’s mouths to wait for their answer.

There were the predictable answers and some really cute ones too but when the microphone was put in front of Harley and the question was asked – he stared at it with a blank face and replied with just three small words.

 “I-like-trucks”.

Everyone exploded into laughter and I distinctly remember it like it was yesterday. My little boy was wearing an expression that I’ve never ever forgotten and one that I see regularly today. It was a mixture of hurt, confusion and fright.

I don’t think that he realised that his thoughts came out loud. I’m pretty sure that he didn’t understand the question and that all the sensory stimulation was overwhelming him so much that he had retreated into his “happy place”. He was having an obsession with Tonka trucks at the time so it stands to reason that this was what he chose to talk about.

Like I said – I have never forgotten this but it has only been recently that I have understood that this was a prime example of what we now know to be his one-track mind. And what an awesome mind he has!

Someone once told me that men have waffle brains and women have spaghetti brains. I forget where I heard it so I can credit anyone with it, but I really really loved this!

The analogy is meant to mean something along the lines of a man’s brain being compartmentalised and that they are only able to do one thing at a time. The several single squares on a waffle represent the boxes that men file useful information in so that they can access it whenever it’s required. The boxes are all separate and individually maintained.

Work is in one box which is totally separate from the home square. That’s why (some) men find it a little easier to find balance between work and family life and women not so much.

The spaghetti however, represents women’s brains and how hundreds of strands are intertwined and crossed over and how every little thing is connected to each other and that a woman can process and achieve many things at once and that doing just one thing can be the launching pad for many other things to occur at exactly the same time.

It also explains why (some) women are unable to simply shut off the emotions of a tumultuous family life once they reach the office or leave the woes of the working day behind when they come home to their families.

(This is all generalised by the way –I know that there are of course a lot of men and women who are exceptions to these rules;))

And then there’s the autistic brain.

I have heard it compared to a huge chest where everything is just thrown in all together.

And when the owner of this chest is required to access a piece of information or remember a previous event – they are able to find it and they manage very well without help, but because there’s so much to sort through, it can take a lot longer than an NT person to find what they’re searching for.

That’s not to say that it’s not an organised chest. It may have tidy compartments in there and they are probably well labelled, but because things that make their way into that chest aren’t thrown in haphazardly, and are placed very carefully where they are for a reason…Only the owner of that chest can find their way around it with any success.

 

And once again….this by no means applies to ALL people on the spectrum. I am writing about my own son and what I have observed myself).

Often I will ask Harley a question and see his contorted face as he searches for the correct answer. It can take several minutes for the right one to appear but he does usually come up with it in the end.

But…..if I push him and demand a speedy reply – he will usually give me a random statement or an unrelated piece of trivia because he is trying to substitute by using the first thing that his brain has latched on to.

Usually that piece of trivia is somehow related to whatever his special interest topic happens to be at that present time.

Like the comment with the trucks!

And anyway – I personally think it was a fabulous answer because trucks really are pretty cool, he was only stating the obvious. I mean…..all the rest of the children had already given the correct answer. He was just issuing a community announcement that day after all.

I LOVE how wonderfully wired these kids of mine are! They’re simply amazing little creations . And in case you’re wondering – the reason that he walked out to tell me that he still liked Sonic at 10 o’clock at night?

Simple – he was looping on that thought . Apparently I’d asked him a question earlier in the evening about his party invitations and wanted to know what character he would like printed on them but at the time he couldn’t quite find the answer he wanted to give so he couldn’t sleep until he got it out.

Duh Mum!

And remember…..it’s still Sonic in case you were wondering

Even if it is baby steps – it’s STILL progress :)

Amongst all the drama that has been going on around here lately – there have been some really great things happen as well that I really want to write about before I completely forget about them. It’s not all doom and gloom and there is some fabulous progress that has really gotten me excited. It’s all about baby steps. Nothing major but lots of little baby steps in the right direction. They all eventually add up to miles and miles of huge strides and cover a lot of ground in progress. I want to share these few little baby steps with all my autism Mother friends  :)

I have this framed on my wall. It's all of my children's FIRST steps ♥

Last Thursday (which was Lucas’ birthday – and the day that everything went pear-shaped), Mum and I took the kids up to a local shopping centre with the idea of buying a special birthday lunch for them all but it was cut short due to Lucas’ constant cries of pain so we rushed him straight to the medical clinic which is part of the centre.

While Mum and I stood in the middle of the food court trying to work out the logistics of who was going with who and what we were going to do with the groceries that we’d just bought that needed to be refrigerated, Harley was quickly reaching the point of no return. We were both oblivious to the crowds of people circling us, the music coming from the stage in centre court, the flashing lights and the singing. Our focus was in the moment.

But Harley’s wasn’t.

I glanced over at him just in time to see him suddenly go stiff and stand still with a look pain on his face. He then clapped his hands over his ears and cried out in a pained voice: “I don’t know what’s wrong Mummy…..but I feel really funny and really scared and I need to get out of here”.   He was clearly in sensory overload and really freaking out.

I looked at Mum and we both knew that he had become dangerously close to melting down and that he needed to go outside to escape IMMEDIATELY. No ifs, buts or maybes…..it had to happen or we would pay the price in a big way.

I grabbed Lucas and headed straight for the Doctors and Mum gently led a shaking Harley and Ella outside the centre to a quiet spot where she later told me that she hugged him tightly for about ten minutes until he was able to come down again. Apparently, Ella offered her cardigan to him and he wrapped it tightly around himself shivering and gradually the fear and anxiety subsided enough for Mum to finish the rest of her banking and shopping.

And that right there is a part of autism that I still struggle with even now. The complete bad timing of it all. It has no regard for schedules or whereabouts you happen to be at the time.  If Harley becomes this overwhelmed….it’s like a pressure cooker where the valve just HAS to be released. Life is never simple when it’s just so unpredictable.

But here’s where the silver lining lies:- I’m excited that Harley was able to recognise AND verbalise the fact that he was starting to get out of his comfort zone. He still wasn’t able to articulate exactly what was making him feel so out of control but it is a brilliant step up from this time last year!

We had another episode once we stepped into the Paediatrician’s office the very next day when Lucas was called back in. The waiting room was filled with crying babies, there was music on the radio, ringing phones, tapping on the keyboard and it was crammed full of prams, children and adults . I looked down at Harley and the tell-tale signs were there again. He looked at me and said “Mummy, it’s happening again, I need to escape here”  so Mum grabbed him and took him for a walk before it hit crisis point. What a champion!!!

And on a side note: I’m so thankful that Mum is here at the moment. I have lost count of the number of times that I have been in situations like this and Harley tips over the edge but I have no choice but to leave him in the place that is the cause of his anxiety and he just has to suffer through it.  It’s not easy wrangling 3 kids when one of them is in crisis mode and unable to communicate or cope at all. I simply have to keep him there and try to distract him because there is no-one else to help.  These times kill me because I HATE putting him under this kind of pressure and it’s not fair to expect him to conform when it’s literally eating away at his very soul. 

And even now that Harley is starting to recognise the signs – I still won’t always be able to allow him the escape he desperately. It’s why I don’t get out much and why I refuse most invitations that I receive. It’s just all too hard you see

But I’m not going to dwell on the negatives today. I’m going to rejoice that finally – I think I may have found the perfect paediatrician through all this drama!

I was SO impressed with him and will definitely be back.

The first thing that he said to me when I walked into his office was: “So Mum, you’ve got Bells Palsy – How long have you had that for and what was the cause?”   Once I explained that it was due to a brain tumour I’d had removed – he visibly relaxed and it wasn’t until later that I pieced this all together in my head and understood where he was actually going with that initial question.

I later realised that he was asking me because he needed to rule out MS and other conditions that cause facial palsy in case they might have been related to Lucas’ condition.   I call that thorough. I call that observant and I call that intuitive.

I then realised that he was brilliant!  Most people tell me that they don’t notice my lopsided face nowadays but this Dr noticed it immediately and didn’t miss a beat. He also didn’t treat me like a neurotic mother which sadly – is a rare occurrence in my experiences with the medical field in Australia.

But the icing on the cake with this wonderful man was when we arrived at the hospital and he had a paediatrician in training with him . She asked Lucas a question that he didn’t respond to and Dr Wonderful turned to his student and said “Could you ask that differently please – he’s autistic”..

Hooray!!!!!  He gets it!

I told Dr wonderful at the initial appointment that Lucas’ actual dx is Aspergers but he called it autism! HE CALLED IT AUTISM!

He then proved to me that he is NOT one of the medical professionals who just.don’t.get that although high functioning children are better off in some ways than classically autistic children – he was acknowledging that it is STILL autism and that our kids still need a lot of special allowances made for them.

All is well. Lots of baby steps all in the right direction.

Life is definitely looking up

The response we never knew.

I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.

I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.

But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.

Daddy was very concerned

For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have  Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.

This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?

The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.

***

The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.

Slumped in Mummy's arms. A familiar pose.

After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.

There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.

Otherwise known as: Survival mode.

He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.

I had no choice but to trust God and pray that he would be healed!

And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.

He certainly gave us all a fright!

Since he has been back home – he is smiling again, registering faces and even talking a bit.

He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.

There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.

Thank you

God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.

Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.

*sigh* JUST what we need – another sick child!

At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.

Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.

I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.

Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.

*Sigh*

If only Harley wasn’t a fighter.

Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.

I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.

Please get well soon Harley. We want our beautiful, affectionate charming little man back.

The Posse on the hill

I’d be willing to bet that they didn’t think I would actually do it I – but I am always up for a challenge and this one is relatively easy for me.

For those of you wondering what on earth I am banging on about – let me explain:

A lovely group of Mums up at the kid’s school were chatting with me this afternoon about my blog. One of them jokingly asked me to write a post about all of them.

I smirked to myself because what they didn’t know was that I had already half written a post in my head after one of the ladies made a comment that had triggered a train of thought for me anyway!

She had said that often they called out “Hi” to me but noted that I rarely responded, but she knew that it was because I am completely deaf in one ear and assumed that I probably didn’t hear her.

And that is true and I’m really grateful that she has been giving me the benefit of the doubt, but it’s actually a lot more than that as well. I actually don’t even notice them either.

You see, most afternoons as I walk into school to collect Harley, my brain is usually caught somewhere between vague and tormented. I rarely look up because my eyes are fixed on Lucas who is known for his absconding and it’s the time of day that I am trying to prepare for the afternoon onslaught of emotional outbursts that are bound to occur.

I guess you could say that I am mentally psyching myself up.

As I walk, I go over the routine in my head so that when we arrive home, things will run as smoothly as possible. I know that Harley needs to wind down from keeping it together all day so I need to make sure everything is ready for his return.

Before I leave for school in the afternoons, I have his crashing corner (complete with cushions, bean bags and pillows) set up so he can get his sensory input so that I don’t become the punching bag, the kicking post and the sounding board.

I have afternoon tea already laid out because another trigger for him is to not know what he will be eating. It exacerbates his anxiety and really is a very easily solved problem.

I have dinner planned and written down on the whiteboard so he knows what to expect and I have his homework all ready to do on his desk.

The things that inevitably throw the order out of whack are little things like sibling rivalry, unexpected phone calls, and rain. He LOVES the rain but it sends him into a trance like state where he is rendered useless when it comes to concentrating or obeying commands!

So, each afternoon as I make my way to the school gate, I mentally tick things off one by one in the checklist in my head and brace myself for my little tornado to be released!

There is another scenario at play here as well.

This one is a little bit harder for me to write about. But you know what?….I think I’m finally ready! It’s more of a personal journey that I have been slogging away at for almost 4 years now and it started way back when Harley began school.

Other autism mother’s will surely agree with me that there is a part of you that is forever changed once that diagnosis is thrust upon your child. It’s like the protective parent gene that we all possess but magnified by about 10,000. It’s kinda hard to explain, but it’s a sense of taking that diagnosis on yourself as well.

It’s been written many times that when one member of a family is diagnosed with autism – the whole family is also. Because it isn’t like a broken leg or a case of the chicken pox – both of those things will eventually end, it is a life-long thing that doesn’t just affect one small part of your child’s life.

It affects EVERY part of their lives.

Triad of impairments which simply put are: difficulties with behaviour, socialising and communicating cover every area of a child’s development and is what all the spectrum have in common.

For me personally, Harley’s diagnosis was like I suddenly took on board all of Harley’s issues, emotions and pain like it was actually ME that was diagnosed. I felt every eye staring at me everywhere that I went, I felt incredibly judged and scrutinised and I was afraid to get close to anyone for fear of either myself or a member of my family getting hurt.

I suppose in hindsight that I can admit that I withdrew from people because it was just all.too.hard.

I was jealous of all the mother’s with their “perfect little NT kids” and I felt ostracised, alone and jaded. I kept my distance for a long time because it was like I had forgotten how to socialise. I no longer had anything in common with anybody and I just couldn’t cope with life.

Cue the nervous breakdown that I had last year when things became far too overwhelming and the elephant in the room that everybody refused to speak about just became bigger and bigger.

This should help to explain my seemingly odd, aloof and reclusive behaviour of late!

Then very gradually things started to look up. I joined an online support group for parents of children on the spectrum and I met a whole bunch of parents struggling with the same daily issues, walking on the same narrow and unpopulated trails and they were able to speak wisdom and love into me again. They “got” me!

They didn’t judge, they understood the heartbreak, the gut-wrenching pain and celebrated the small things with me.

Then I started blogging. I met hundreds of people in every corner of the globe who were also fighting the same fights but with different systems, wrestling with the same teeny tiny gripes and able to offer support and friendship to someone who so desperately needed to be accepted.

God met me where I was at and lifted me out of the pit and eventually, I was able to breathe again without my lungs filling up with disappointment, grief and regret.

I still have a lot of really off days, and I know that it will continue to be a challenge, but I guess it’s time to be out and proud: – I AM THE MOTHER OF 2 CHILDREN WITH AUTISM AND I LOVE MY LIFE!!!!!

And as for you gorgeous posse on the hill – I will train myself to look up, smile, wave and call out “Hi” back.

It’s never been anything personal. I just needed to find the sunshine again

The letter.

How can something so “good” bring out such heavy emotions in me?

Isn’t this wonderful news? Just what we wanted to hear? Shouldn’t I be dancing on tables and buying the next round of drinks?

Well, maybe once upon a time I would have.

For those that are lost by these random statements- let me explain.

I’m talking about a letter. THE letter.

The letter that we received in the post yesterday that I left sealed sitting on the kitchen bench because I was too afraid to open it. The letter that Mr Patient forced me to open this morning and find out what information it held.

It is the letter holding the results of Lucas’ Kindergarten interview that we attended last week. I slowly opened it with shaky hands and tears at the back of my eyes threatening to spill out.

I read the first line slowly.

Dear Mr and Mrs Patient……

We are very pleased to be able to offer Lucas a place in Kindergarten next year commencing Term 1, 2012.

My heart sank and the tears escaped.  I couldn’t stop them.

I was partly thrilled that my little boy was accepted but a bigger part of me is still battling the disappointment that moving up to my hometown is looking less likely now.

We had discussed the possibility of me moving there and Mr Patient staying here and coming up on the weekends if we were unsuccessful at getting Lucas into the same school as his siblings. But now that he’s in, that’s not really on the cards anymore. There’s no need to go.

Ok, I confess. I got excited at the prospect of moving and I kinda got my heart set on it right from the very first time that the idea was mentioned.  My Mum, my best friend and countless other friends live there and the kids love the place and know it well. The laid back lifestyle that I grew up in and the idea of everything being no more than 5 minutes drive away was so exciting to me.

I had already dreamed up images in my head of where we were going to live, what school they would attend and how much easier life in general would be with help only a simple phone call away. I would no longer have to drag three kids to every Dr appointment, therapy and meeting. I would have people who could help me.

But the wheels started to fall off when we did the maths and added up the costs of Mr Patient flying home every weekend and it was becoming clear that this wasn’t going to happen.

The way things are at the moment – Mr Patient leaves before the children are awake in the mornings and is often home long after they go to bed at night.  He doesn’t have any idea what we do every day , he knows nothing about any of their therapies and interventions and this morning – he was unable to even tell me the names of his children’s teachers at school.

His excessive travelling means that I virtually do it all alone ANYWAY so moving wouldn’t cause the kids to see any less of him……

But now Lucas is accepted, my dreams are shattered AGAIN!

I need to get my head around the fact that we are staying put. I need to accept that short of a miracle, I will continue to do this alone. And I need to learn to rejoice in this.

Three kids.

Two with autism who require more than I can give.

One mother who is throwing herself onto God more than she ever has before.

Either that or have another nervous breakdown.

Head….meet sand. 

The “G” word…

Sometimes, answers can come from the strangest of places. And by strange, I mean from somewhere that you least expected it to.   

Somewhere you’d never have imagined and from someone who you barely even know.

BUT – God works in mysterious ways!

If you click here you will read that this blog was always intended to be a place where I could write about whatever I needed to at any given time NOT just about parenting children with autism.

Of course- it all ties together in the end because autism is so intricately woven into every single part of our lives. But this is not a specifically autism related post per se.

I will start this post off with somewhat of a “warning”.

This post is going to be a deep one. It’s going to be a little long and probably a bit confronting for some people.

It is full of my life story and if you don’t read through until the end, it may seem like a bunch of annoying complaining, but if you do choose to read, you’ll see the awesome self discovery that I’ve made and you might even see your own life in a new light.

Who knows?

Right. That said – I’m going to do a quick flash back to my last post where I admitted that I have been struggling a lot with depression lately.

I ended that post with words to the effect of: Autism is the root issue of everything that’s difficult about my life.

A few hours after I’d published it, a very close friend wrote to me and said that she had just finished reading it and that she didn’t feel that autism really was the reason for all my sadness and pain. She said that she believed that autism was just a small part of the bigger picture but that she didn’t quite know what “the thing” was.

I actually completely agreed with her – but because I was still unable to figure out why on earth I seem to struggle SO much more than other autism mothers (maybe it was just my own skewed perception), I assumed that autism was to blame.   It was something that bothered me endlessly and I needed an answer and that one was the most obvious choice.

Anyway, one of my regular readers and commenters, a lovely woman whom I have never met (but hope to one day) wrote that she thinks that I am still in a period of grief. And as soon as I read that something inside of me shouted YES! That’s it!

I KNEW that there was something in that!

And I don’t believe that it’s all related to my father passing away a couple of short years ago. I found this wonderful passage in a psychology book (of all places) and it was spot on as far as I’m concerned.

“Many assume that grief is associated only with the loss of a loved one.
Psychology shows us that this is very often not the case, but those suffering grief from things other than the death of someone are often told to “snap out of it.”
Grief is, quite simply put, a response to loss.
The loss can be of something tangible or intangible. It helps to recognize that disappointments, abuse, recognizing one’s limitations, illness, losing a job, or so many other things can elicit a grief response.
People suffering a loss need time to grieve, and such time depends upon how important the loss was.”

W-O-W!

YES! That’s me!

Let’s see: In 2 short years, I had 5 major surgeries. Check.

The brain surgery being the biggest at a whopping 13.5 hours long – complete with a collapsed lung and the recommended recovery period from this is 2 YEARS!

I had an undiagnosed/ aggressive/ insomniac autistic 18-month-old child on my hands at home so recovery wasn’t really an option.

9 months after that, I had my corneal transplant then found out I was pregnant with our unplanned “high-risk” baby Lucas. Check.

Consequently, I had a general anaesthetic c-section followed by a tubal ligation and ALL of these took place in the time that I was “supposed” to be recovering from brain surgery.

We had the added stress of our finances being incredibly stretched due to all of the medical bills I’d racked up (You’d think having brain surgery to remove a 5cm tumour would be covered under Medicare wouldn’t you?) And not to mention the exorbitant costs related to the corneal transplant too. Check.

And just after Lucas was born, I had to undergo surgery for the 5th time to get my gall bladder removed. (There were 90 something peppercorn sized stones in my sterile jar if I remember correctly!) Check.

Then my dear Dad was diagnosed with cancer and shortly after I contracted glandular fever and due to not being able to recover properly– my Doctor told me I was borderline chronic fatigue. Lovely!    This possibility scared the wits out of me so emergency procedures were put into place and Mr Patient was forced to take time off work until I was well enough to carry on. Check.

A few months after that, I received a phone call from my Mum asking my sister and me to go home immediately because the Doctors had told her that Dad was on his deathbed.

We rushed home and he died a few short days later. Check.

6 months after losing Dad, we were slugged with Harley’s autism diagnosis and it was about then that I started blaming autism for everything that I hated about my life. Check.

And while we’re talking about grief – there is definitely a grieving process related to the discovery that your child is “different”, (though I do believe that my kids can do whatever it is that they choose to do and that they will do it well!)

I went to a counsellor and she ordered that I be medicated before she’d even attempt to talk to me again. She diagnosed me with “acute clinical depression” (Whatever that means!)

I didn’t see her for very long because it got far too expensive and she was difficult to get appointments with plus I had no-one able to mind 3 small children for me. I did however find another counsellor that I was able to see during school hours and had a wonderful baby sitter for Lucas – but that was also short-lived due to the time constraints and travel involved.

It’s times like THIS that I find having no family to help out really tough. You can only ask friends to help out so many times before you wear out your welcome no matter how many times they say they’re happy to help.

The simple fact here is: I haven’t had time to grieve ANY of these things that have gone on in my life because they have all happened so closely to each other and they have kept compounding and building up and it TOTALLY explains why there always seems to be a pressure cooker ready to explode in my brain!

Now that I know that it is grief that’s holding me back , I can finally stop blaming myself for not coping as well as everybody else.

I can stop wondering “WHY” I suck at things that other people seem to just drift through and I can now actually believe it when my Mum tells me that I’m NOT a basket case & I’m NOT a crappy, disorganized, useless mother – I just have a lot on my plate and I have a lot of grief to work through!

It’s the keeping it real factor that I have been struggling the most with.

I have always found it REALLY difficult to “put on a happy face” when I feel like screaming.

I’ve struggled to “appear” normal for fear of turning people away.

And I honestly physically hurt whenever I tried to be something I’m not. I know my intensity can be scary and my emotional rollercoasters are annoying – but I’m still a work in progress here.

I’m living, learning and growing.

I’m still grieving, but the thing that excites me the most is that I have discovered that I am up to step 4 in the 5 part grieving process of:

Denial

Anger

Bargaining

Depression

and

Acceptance!

 

So guess what?……… I’m almost there!

See you on the other side!

 

And thank GOD that I have God on my side

The pain of not knowing.

And so ends another school week.  

It is now only the 3^rd week back since the Easter holidays and Harley has already had enough.

He’s decided that school is not for him and told me that he thinks he might stay home from now on.

So …yeah….great news eh!

I think that the major issue that we’re dealing with (and have been since day dot with him) is anxiety.

I mean…..How many kids actually chew off their knuckles because they’re not coping?

He is also still struggling with impulse control (of lack thereof!) and the ability to predict the consequences of his misguided actions, and has been in trouble EVERY afternoon at home this week just for doing really really silly things.  *sigh*

It does help a little by knowing that the anxiety in him is all part and parcel of having an ASD, but just simply knowing doesn’t make it go away.

No – I now need to find some more effective ways of working with him to overcome these massive hurdles because we’re tripping on every damn one of them this week. Everything that I see him doing at home , all come under the 5 major diagnostic criteria points for aspergers syndrome.

****

Firstly, we have : Communication impairment – Harley is unable to effectively communicate the “whys” of his behaviour to me and is only able to say things like: “Because my body tells me that I HAVE to do it”. (It sounds like a pretty well cooked up excuse but I know that he really DOES have uncontrollable urges and these frighten me).

He KNOWS that he isn’t coping but because I really don’t believe that my boy even understands the reason why himself – he is unable to convey it to me so it all comes out in meltdowns and aggressive behaviours instead.

Another characteristics of AS is : Social impairment – Lately Harley has been blatantly rude and disrespectful to me, and has said some really inappropriate comments to anyone who crosses him. He isn’t suffering fools kindly – if he doesn’t like you – he’ll tell you.

I hate this and it goes against every value that I am trying to install into my kids.I desperately want to train them to love one another and to treat people with respect but there’s really no point explaining to him that he’s being rude until he’s in a clearer frame of mind, because otherwise it simply goes in one ear and out the other.   And sadly, those rarely seen calmer moments are few and far between at the moment.

He’s also having his: sensory sensitivities attacked at the moment. This is a major contributing factor to his anxiety and is apparent right now in his aversion to eating anything but plain rice, gluten-free bread gluten-free pasta and crackers. I have had massive dramas by trying to even feed him this week.

This anxiety/sensory aversion merry-go-round is ridiculous and is quite the vicious cycle.

The difficulty with change issue is also a biggie this week because Mr Patient has been away with work for most of it.  Even though travelling with work is something that happens regularly – the unpredictability of it throws Harley into a tailspin every time. Even when we I think I’ve adequately prepared him, he still gets greatly affected by this major change.

And lastly, repetitive and obsessive behaviours. This one sucks. I hate it because it drives me crazy.  I hate watching my son lining things up, counting and re-counting AND recounting things over and over again in a desperate attempt to soothe himself.  The pacing, the rocking, the stimming and the rituals have been kicked up a notch (or twenty) this week.

He is experiencing a lot of physical symptoms too. (Stomach pains, headache, insomnia and big bouts of inattention and irritability).

So….what to do?

I honestly don’t know right now.

I don’t know where to start because I don’t know what’s going on in his little brain.

What I would give for even a small glimpse into his inner workings. *sigh *

I DO know however that I will be spending a LOT of time in prayer and trying to rest in the knowledge that even though *I * don’t know the answers: I serve a God that does know.

And that simply has to be what I’m clinging to right now.

Have a great weekend all…..

♡

Fi x

Confessions of a helicopter parent.

According to Urban Dictionary:  A Helicopter Parent is a parent who hovers over their child, is controlling and extremely over-protective.

Well yes, I guess that term is very fitting when applied to a parent who is unwilling to cut the apron strings from their typically developing child and let them discover life on their own BUT, in my opinion…..this term should not EVER be applied to parents of children with special needs.

For most of us – it is definitely NOT a choice but instead – a necessity.

I would LOVE to be able to just drop my child off at school in the mornings and go about my business but you see….this is a pipe dream for me. I don’t hover because I don’t trust the teaching staff or the school…..I hover for MY SON’S sake…..NOT mine.

And that  my friends, is where I believe the difference lies.

When God blessed the parents of spectrum kids with these children, he also gave us enough grace to deal with the massive responsibilities that come as part of the autism package.

The simple fact is that with autism spectrum disorders- part of the diagnostic criteria is that the child has impairments in socialising, communicating and has restrictive or repetitive behaviours.

 

And in essence, what that means is that throwing your child in the deep end and letting them dog paddle their way through is not only stupid but very very cruel!

***

I have a very emotional story to tell now and I need all of my autism mother friends to wrap their virtual arms around my shoulder as I write because I’m particularly fragile this morning.

Ok?

Thanks..

I sent Harley to school today with both of his hands bandaged up because he has let his anxiety overwhelm him again.

He has licked, sucked and literally chewed his knuckles again until they bled. They are red raw, weeping, bleeding and really majorly gross to look at. He is in dreadful pain and was whimpering as I gently bathed and dressed his wounds this morning and it broke my heart to see him like this.

He looks like a little teddy bear with his paws all wrapped up and as a result, is unable to perform simple tasks like cleaning his teeth and getting dressed unassisted.

I went up to school just before recess to drop off his blazer that he had forgotten and signed in and went down to his classroom to change the dressings on his hands.

The beautiful office ladies would have done this for me but I knew that Harley wouldn’t have responded well to someone else touching his sore hands so I opted to go in myself. (yes, that’s right…..hover, hover, hover).

He was SO excited to see me and Lucas. He ran over to us giving us both HUGE cuddles and announced loudly that his Mummy was here and telling all his friends how much he loves me! (I developed a speck of dust in my eye as you could imagine!)

I hugged him back, took him aside and re-dressed his hands and helped him to get his blazer on. He went back to his desk and sat down and arranged his books in front of himself proudly.

I told him that it was time for me to leave now and that Mummy would see him in a few short hours. He nodded and said his goodbyes to us.

I walked over to the teacher to say goodbye and she started chatting with me about the great progress that she’s noticed in him lately and I beamed with pride.

All the while, Lucas was tugging on my leg so eventually I followed his pointed finger with my eyes and then I saw it.

Harley was leaning forward with his head down, staring at his work. He had his pencil awkwardly grasped in his bandaged hand with tears streaming down his little face. He was TRYING SO DARN HARD to be brave but the tears kept flowing. I watched him wipe some of them away with his little white paw and I could tell how much strength this required on his part.

I walked over to him, crouched down and put my arm around his shoulder and asked him what was wrong.

“I can’t do what everyone else does Mummy” he answered.

“What do you mean honey?” I replied.

“I can’t even hold my pencil, I can’t read and I can’t stinkin write, I’m so stupid” he sobbed.

“YOU ARE NOT STUPID” I practically yelled, LIVID that my boy’s anxiety was consuming him and I started to wonder if coming into the classroom was such a good idea after all.

His gorgeous teacher stepped in and assured me that she would look after him so I thanked her and gradually made my exit once I knew he was ok.

I DO trust that his teacher can deal with this. I DO trust that she has only his best interests at heart but I want everyone reading this to know:

My kid ALSO needs me.

Call me whatever you want. A helicopter parent, a smother mother, a freak, WHATEVER, but when my child is in this much pain just from a task as simple as “being” in a classroom full of kids who can naturally do all the things that he struggles with….. I will not back down and leave him to his own devices.

It’s not a simple case of parental separation anxiety here.

I am not trying to control the school, the teachers or the environment.

I just want to parent my child responsibly and effectively and for ASD kids – that means hovering, asking questions, making requests and sometimes….being a pain in the butt.

I WON’T apologise for being my child’s biggest and loudest advocate. I do not want to look back in five, ten, fifteen or twenty years time full of regret that I didn’t do more to help him navigate this frightening and overwhelming world that we live in.

And I will ALWAYS be the parent that you see waiting patiently by the classroom door to “have a quick chat” with his teacher.

I don’t want to know if he aced his spelling test, or ate his sandwich or got all his sight words correct….I couldn’t care less about these things…..I just want to know if my little boy managed to simply survive!

So if you’ll now please excuse me ….this helicopter needs to go and re-fuel – tank is getting empty : )

I love you but you puzzle me!

I had a new post all ready to publish tonight but my computer threw a wobbly before I saved the draft *sigh*.

I couldn’t be bothered re-writing the whole thing again so I’ve decided to repost this poem that I wrote for my boy last August when I was going through similar emotions with him.

For my precious Harley,

If I could peek inside your brain,
I wonder what I’d see,
A bunch of wires with knots and twists,
all woven randomly?

Perhaps the buttons that help you speak,
have been left on “repeat”,
And movement wires have shorted out,
the anchors for your feet!

I’d love to learn just what goes on.
inside your awesome mind,
I know that you are “oh-so-smart”,
I would be left behind!

I know that there are parts of you,
that wish you were the same,
So you could play with other kids,
and understand their games.

I’m sure it hurts when you don’t know,
just what on earth’s expected,
I hate to see you all alone,
and looking so dejected 

But what these kids have failed to see,
is how unreal you are,
Your passion, love and loyalty,
exceeds the norm by far!

I know that life is going to bring,
you challenges small and great,
But never forget that through them all,
I’ll stay your closest mate.

Love you tiger even though I don’t always understand you.

XX MUMMY XX

It’s all about the chips….

Anyone who reads this blog regularly or follows the Wonderfully Wired page on Facebook would have picked up that I am struggling with Harley A LOT lately.

image from sinnatious.livejournal.com

He has been all kinds of anxious, difficult and aggressive and has made me  want to string him up on a number of occasions.

But just as God always seems to do to me, I was shown today just how far both he AND I really have come.

After I picked the kids up from school , I braved the supermarket, but it’s wasn’t as bad as you might be imagining…..I eased Harley in by telling him that he could have a meat pie for dinner and that we were going to go and buy it now. This is one of his favourite meals so I knew there’d be very little opposition

So, we arrived at the shops and I told the kids that if they behaved the whole time and didn’t run away, that I would buy them some chips before we left. They really earned them too I can proudly tell you all.

My moment of enlightenment happened in the produce aisle as I was looking for the cobs of sweetcorn for tonights dinner.

Well….I heard it myself well before I noticed Harley standing with his hands placed firmly over his ears to block the noise and my heart ached.

A few metres away, in front of the zucchini stand, there was a young couple who couldn’t have been much older than 18 or 19 trying their darndest to contain their screaming, thrashing, head banging (yep) flailing 2-year-old without much success.

He was literally ripping his own hair out, whacking himself on the ears, head banging his mother’s face and kicking his father. They couldn’t hold him still and he was becoming more and more distressed VERY quickly.

They were trying desperately to calm him and after the father gently cradled him like a baby and managed to carry him like a newborn over to a quiet corner in the store, I noticed him rocking back and forth in that tell-tale motion that I’m all too familiar with.

Next, I found myself walking over the obviously shaken mother.

I don’t know what made me do this – I am assuming that God put me up to it because I have no other logical reason for my uncontrollable impulse, but I put my arm around her and hugged her and she sobbed into my shoulder.

I told her that this is not a result of anything that she has or hasn’t done and that it’s NOT her fault.

I also told her to ignore ALL of the other shoppers who were staring at the family because it’s none of their damn business, and told her that she is the BEST mother for her child.

She looked at me with her tear-filled eyes and said “Thank you so much. You have no idea how much I needed to hear that”.

She couldn’t have possibly known that I really DO know how much a comment from a stranger can mean!

She told me then that she has no idea why her son loses it like that and that she can’t get him to communicate with her at all. She said that his tantrums were 100′s of times worse than any of her friend’s children and that she is at her absolute wits end with him.

I had alarm bells ringing all over the place at this point!

But I simply nodded knowingly and told her again that none of this is her fault.

And as her partner was coming back with a much calmer son who was snuggled into his chest with his hands over his eyes, I told her to remember today and remember my words next time that things escalate and she feels helpless.

I also made sure that I told her that it would be wise to mention this to her Dr next time she visited if it continued and reinforced for a third time that is IS NOT HER FAULT!

She half- smiled and thanked me again.

It was then that I pointed at my three kids who were standing a few metres away next to our trolley, (but safely out of earshot)  and said:  ” You see the little boy in the middle who is standing there calmly?”

She nodded.

“Well, he used to be EXACTLY like your little boy every time I took him anywhere. He screamed constantly both day and night and I thought my  life was over….I’ve been where you are and I can tell you that it can only get better.”

Her face then brightened and she smiled for the first time and we said goodbye.

…..

I got into the next aisle and started searching for the tomato sauce and without me being able to stop it – the floodgates rushed opened and I bawled and bawled. and bawled.

Harley noticed my wet cheeks and asked me why I was crying?

I looked at my little treasure and told him: “I’m just SO proud to be your Mum,  that’s all”.

He looked confused and said in his usual tactless aspie way : “But that’s stupid Mum, you should only cry if you’re sad, not proud!”

I stopped pushing the trolley and bent down to his level and took his little hands in mine…He surprised me by eye contacting me and I detected genuine concern in them as I gently told him that once upon a time…..HE was just like that little boy that we just saw.

His face grew animated as he asked me if the other little boy has aspergers too?

“I don’t know mate. I’ve never met him or his Mummy before but yes, I think he might have something LIKE aspergers. But you know what?”   I continued.  “His Mummy loves him just as much as I love you so he will be ok”.

He nodded and said: “Mummy”….. in a matter-of-a-fact voice. “If he does have aspergers, I know why he’s crying. It’s because it’s very loud and smelly in here and there are too many other people shopping. I want to scream and cry too but I really really really want you to buy me those chips so I’m trying extra hard not to”.

I was a complete sobbing basket case by now and I hugged him so tightly that he complained that I was trying to choke him!

I looked up at the ceiling and said out loud to God:   “Oh wow…..so seriously THIS is the place you choose to break me!” lol

And as I finished the rest of the shopping and made my way to the chips aisle, I stood back watching the kids choose the ones they wanted and realised just.how.far.we’ve.all.come and I couldn’t get the silly grin off my face.

……

Harley still really doesn’t understand what the big deal is all about.

He was just glad to get his chips

What kind do you have?

Yesterday, I had 2 lovely ladies come to visit me in the home as a follow-up to Lucas’ CATS assessment and consequent diagnosis of aspergers.

image from picturesof.net

Although I was pleased that someone was at least following up with us – I was annoyed that it was really just a formality and nothing concrete actually came from it at all.

We wasted spent almost 2 hours discussing the family dynamic, the tools and methods that we implement in the day-to-day running of the household and they suggested a few new ideas to me. (Which I didn’t have the heart to tell them had already been tried but failed here!)

One of them asked me to rate from 1-10 how well I cope on any given day with 1 being not coping at all and 10 being coping really well.  I asked: “Do you mean on a weekday or on a weekend”?

She replied that it didn’t matter.  I nodded my head and emphasised that it DEFINITELY mattered because my answers to those 2 different days would differ dramatically.

“How so?” she enquired.

“Well, if it’s a normal weekday and I only have Lucas home…..I would say that I’m about a 9 or 10. He is a very easy child, extremely self entertaining, non-demanding and compliant. But if it is a weekend….I would change my answer to  3 or a 4.” I answered.

“Oh really? “ She seemed surprised. “Why such a dramatic drop?”

“Because that’s when all the kids are here and they are bouncing off each other and it’s also when our most challenging child Harley is home”. I replied.

* I had already told them in the preliminary discussions that Harley ALSO has a diagnosis of aspergers so I think she knew where I was going.

Her next question was: “What would it take to move this up to a 9 or a 10?”

I thought she was humouring me so I answered that the only way for that to happen was for someone to come and take Harley for a while and give us a break. She must have been serious because she wore a very concerned face!

I thought she was going to soften the blow a little but the next part of the conversation really annoyed me.

She had a printout in front of her with a listing of all the places in our area that provide relief to families such as ours and one by one she read them out to me only to see in the fine print of ALL of them, that to be eligible to access these,  the child had to have been given a diagnosis of developmental delay as well as autism. But because it’s ONLY autism, that their hands were tied.

She was preaching to the choir because I already knew all this. I had researched it all myself a few years ago when Harley was in the prime of un-controllable behaviour!

Thankfully….I’m actually ok at the moment.

I know I have had a few emotional posts recently and that Harley has been experiencing extreme anxiety lately, but believe me friends: I’m usually over it by the time that I have published the post because just writing it out is a wonderful release for me.

The last round of questions centred around the people in my life that I turn to for support.

I eagerly told her about all of you. I also told her that blogging has been my absolute life saver! I explained how awesome it is that because of the different time zones that we all live in – I am able to access support any time of any day .

She asked me if there were any local support groups that I attend and I gave an emphatic NO! And the reason?   Too many of them have a Lucas version of autism and not many seem to have a Harley. I felt like NO-ONE understood what it is like to parent a verbally and physically abusive child.

Sure….he’s come a LONG way, but there’s still a lot of distance to cover yet!

And I can tell you from personal experience……If both of my boys presented with aspergers like Lucas did – I wouldn’t understand the true meaning of words like emotionally overwhelmed, sleep deprived and mentally exhausted in the way that I do now!

If you have a Lucas.…I’m happy for you. Really I am.  I KNOW that it’s not all plain sailing for you either. Don’t get me completely wrong: Lucas has his fair share of challenges too, it’s definitely not all roses……but nothing on Harley!

But if you have another Harley……you need a break too.

Here’s a hug for all you mother’s out there whatever child you have. (((( )))).

So…..tell me, what kind of child do you have?

It all comes back to autism

Yesterday we drove the long haul back home from our holiday up at Mum’s.

It should have only taken 6 hours…..but …due to heavy Easter traffic and a few motor accidents….it took us a whopping 9 hours!

And the extra 3 hours in the car with the kiddos was NOT my idea of fun let me tell you! But to their credit…..they handled it quite well.

We arrived home at about 9pm and put the kids straight to bed. Mr Patient unpacked everything from the car and we both took one look at the pile of suitcases and bags that were covering the lounge room floor and promptly decided that it could wait until tomorrow.

We made a cup of tea and sat down and exhaled for the first time.

Then it happened…….I burst into tears.

image from mitchieville.com

It wasn’t just a sniffle and a couple of tears trickling down my cheek – no, it was the really ugly cry. The one with the sobbing, the snot and the in-coherant words!

It all hit me at once. I was back to real life. 

That means school, therapies, homework, a constantly late home husband and a to-do list that’s ALWAYS longer than there are hours in the day.

And I know how exhausting my life is. I wished the same wish that I have wished for about 8 years now……that my Mum lived closer and that I didn’t have to keep pushing this damn elephant up this damn mountain!!

And as Mr Patient and I talked it out….I had a real light bulb moment (or Oprah moment as they are also known).

I realised that EVERYTHING that I am unhappy with in my life at the moment…..All comes back to autism!…

Let me explain:

I verbally listed to my long-suffering husband, all the things that I wished were different:

Firstly, I have wished that I lived closer to my parents for 8 years now….how old is Harley?….that’s right..8

I coped fine with Ella for 3 and a half years, but from the day that Harley was born, we have struggled  immensely with him.

The reason? …AUTISM.

And take the kid’s school situation. The support team at the school is absolutely amazing, the problem is that there simply isn’t enough of them to go around. This results in Harley not getting anywhere NEAR the aide that he requires and we KNOW that Lucas won’t receive it either when he starts next year.

The reason this is an issue for us?…..AUTISM.

Next there is the friendship thing…..sure we have some really wonderful and genuine people in our lives right now, but I could count the people that I can actually guarantee would be there for us in times of need on both hands.

And why have a lot of our friends evaporated?……AUTISM.

What about the money thing? Where does it all go nowadays?

Let’s see….there’s speech therapists, OTs, tutors,psychologists,paediatricians, GPs,medications, gluten-free diets, etc etc etc…..and why do we have all these expenses?

That’s right AUTISM….is anyone else sensing a theme here?

Rather than go on and on about all of these crappy things and the REST, (I think I’ve made my point!) , I really had to slap myself about and make a determined decision to suck it up and move on.

I recognised what this thinking was doing to me….it was poisoning me from the inside out. I was becoming REALLY woe is me and started my own little pity party.

I decided that I don’t want to end up resenting my kids.

I know that it’s not fair but I also know that none of it is going to change anytime soon.

My Dad always used to tell me that life isn’t fair, and I absolutely HATED it when he said that. But you know what?……He was right…!

And do me a favour will you all?

Promise to hassle, harass and harangue me and remind me of this post the next time I start to sink down into “poor me” mode again will you?

Because it’s bound to happen sooner or later!

A blue day….

Alrighty then.

World autism awareness day (WADD) is being celebrated “today” (April 1^st) in Australia.

There are a number of theories as to why this is.

Firstly, maybe because April 2^nd (the day the rest of the world celebrate it!) is on a Saturday down under….it’s harder for people to organize functions on weekends, or maybe it’s because Australians are a little backwards!

Who really knows?

But we are raising awareness TODAY Friday 1^st April…aka April Fools Day…..(hmmm, there might be something in that?)

I woke up this morning and put on my blue shirt and donned my ‘autism awareness for April’ badge and my blue headband and set out with the mission to create awareness about autism and the challenges that our children face every day of their lives.

And because it’s WAAD, I am going to grant myself permission to be candid, outspoken and blunt!

Our kids need the world to understand them.

The sad fact is that one day….God willing…. we will pass before our children and they will need to be surrounded by a world that is tolerant, supportive and caring.

And as much as I wish that these traits came naturally to all of humankind…I know that sadly, they do not.

Particularly in this day and age.

My job as a mother of children with autism is to educate people on who they are, what they need, how they function and to provide the necessary tools to make it happen.

I have made it my mission to tell anyone I come into contact with that these kids are amazing, talented and beautiful souls.

Autism is NOT contagious….it is NOT due to bad parenting….it is NOT a disease, a hinderance or a crutch to bear but a wonderful difference that brings SO much joy to my life.

These kids are not just “autistics”. They are not “things”, “a number” or an epidemic.

They are our children.

Precious human beings with hearts, souls and emotions.

OUR kids!

Carrie with my little Lucas at school this morning

My friend Carrie , is a complete nut for autism awareness…..she is a mother of 2 children with autism and her dedication to spreading the word is remarkable!

She is pictured here at school this morning with my little man Lucas…..also in blue!!!!

(No, that wasn’t an accident!)

I also want to say how sad I am that I still regularly come into contact with parents who have children that they should be pursuing a diagnosis for who are in complete denial about the facts.

I was only speaking to one of them this week.

The mother turned to me and said “No…..my *Johnny isn’t like THAT!” with a voice of disgust when I mentioned that his behaviour was an obvious meltdown because 8 year old children don’t usually throw themselves down on the ground screaming because they have a different teacher….

It’s hard for me to not take offense at her distaste to the possibility of ASD because her implication was that the thought of having a child “like mine” was despicable!

I really don’t care what she thinks of me but I feel for the child who is growing up with no intervention and no understanding.

But….I’ve had to learn my place and show love and not judgement in these (all too common) cases.

 

Mothers….follow your hearts…

Our little Lucas was diagnosed with Aspergers Syndrome just on 14 months ago.  

He was diagnosed by the same paediatrician who diagnosed Harley, and as I have written before, it was virtually an on-the-spot diagnosis. So we as a family took this diagnosis on board and have been catering to this ever since.

He started attending speech therapy, OT and an early intervention group soon after.

Whilst the diagnosis was already given, we still needed to have a CATS assessment.

CATS stands for “childhood assessment team” and yesterday, we drove to the Children’s hospital where they performed the ADOS and the Griffith’s assessment on Lucas.

We entered the room to be met by a multi-disciplinary team containing, the diagnostic paediatrician, an OT, a speech therapist, a physiotherapist and a social worker.

It was a little overwhelming to walk straight into this but we knew it was the final step in discovering exactly how to best help Lucas when he starts school next year.

I know that this sounds terrible but I was actually somewhat annoyed that when Lucas woke up in the morning, he was in a fantastic agreeable mood and his speech was really quite clear because, only the day before, his speech therapist took a video of him and asked me if it was OK if she showed it to some of her colleagues because he is proving to be a mystery to her.

She told me that the inconsistency of his speech bothers her because one week she will understand 90% of his attempts at speech but then only 10% the following week.

So as bad as it sounds – I was concerned that this testing wouldn’t show the “real” Lucas and that it might provide false results.

We spent an hour sitting in that sterile room with all five members of the team answering questions, providing valuable insight and watching Lucas sit W-legged on the floor playing with the trains and dinosaurs completely oblivious to the discussions going on around him.

One of the things that they were particularly interested in was that we already have an older child diagnosed with aspergers. And Mr Patient and I felt ashamed as we admitted that our biggest struggle was not with Lucas – (the child they were assessing)- but with Harley.

The social worker asked us what kind of family support we have, and noticeably were concerned when they heard our answers.

My numerous surgeries and mental health were brought into question and the empathy for our situation in that room was almost tangible!

They were an incredibly supportive and wonderful team.

Next, we were asked to leave Lucas in the room with the Paediatrician and one of the therapists whilst the other 3 accompanied Mr Patient and I to an adjoining room with one-way glass and a TV screen that we could observe the rest of the assessment on.

We giggled as we watched him show the Dr how to tell if you’re alive or dead and squeezed her fingers for her until they turned white and then after releasing the pressure and when he finger returned to it’s normal pink colour – he exclaimed “Yay! You’re alive Dr Jenny”!

She thought it was hilarious too!

We watched this play based assessment with mixed emotions….pride, anticipation and for Mr Patient, a little sadness.

He shed a few tears as the reality set in and he was confronted with the very real possibility that the original Paediatrician was correct.

I need to point out here that I personally am in a very different place to him. I believed this diagnosis right from the start but he has lived in “hope” that his other son would be spared the trials that seem to go hand-in-hand with ASDs.

After the assessment was completed, we were sent off to the hospital cafeteria for half an hour so that the team could meet and compile their results and final diagnosis.

We sat out in the sunny courtyard watching Lucas play happily in the garden and discussed what we expected the outcome to be. I told Mr Patient that I really couldn’t pick it. I honestly had NO idea what they were going to tell us. It was a brilliant day for Lucas….he might have been able to pass for typical because he is so high functioning.

I’ve written many times before that there are days when even I as his mother (and the one that he spends the MOST time with) have doubted the original diagnosis.

These are the days when he is attentive, agreeable, consistent and “typical”. But then soon after he has what I call a “fully autistic day”… These days have him pacing in circles, mumbling to himself and repeating the same phrases over and over to himself like a mantra.

But my concerns were laid to rest as the team re-entered the room and the results were delivered.

Lucas meets the criteria for aspergers syndrome 100%.

We were told that the formal reporting will take a little while to complete but that in the meantime, they can tell us with certainty that the original diagnosis was and is correct.

I beamed when they told me that he has no intellectual delay but conversely he is placed in the 80^th percentile intelligence wise for his age group..

She then went onto explain that the problem lies in his apparent speech delay. The ability is more than there but it’s just not translating to his words. She recommended more intense speech therapy and stressed to us the importance of finding just the right school for him next year.

The Dr must have read my face because she then launched into an in-depth discussion of how differently aspergers can appear in two different children. (Namely my two boys).

Harley is aggressive, emotional, short-tempered and obsessive. But he is also cuddly, affectionate, sensitive and caring.

Lucas is easy-going, level-headed, patient and flexible. But he shuns affection, appears nonchalant and exudes indifference.

She explained to me that personality and sensory profile are major factors in how aspergers looks on the individual and that the family dynamic can also dramatically affect the child’s presentation of aspergers.

For example: Lucas was diagnosed a lot earlier than Harley was so we made the necessary adjustments therefore sparing him the heartache of trying to fit into a family that isn’t catering to your needs.

There were already visuals all around the home left over from Harley and we never expected the same level of compliance that we did of Harley at the same age.

She pointed out that because the boys share the same diagnosis….there are a plethora of variants that affect the way that they present.

The meeting was finished after the social worker asked us what kind of service we as a family needed.

We looked at the floor as we announced again that we needed more help with Harley than with Lucas.

Our information has now been put forward to a number of support providers who deal specifically with behaviour management and supporting the family unit as a whole. I’m thrilled and incredibly grateful.

Throughout this whole exhausting process, I have learned that I need to stop listening to other people because I know my son better than any health professional ever could.

So mothers…..trust your instincts.

It there’s something about your child that’s just not quite right but you can’t put your finger on it…..get it checked.

Follow your heart, the worst that could happen is that your child turns out to be typical albeit a little quirky.

Or…..Congratulations!  You have a remarkable child with an incredible gift who just happens to be on the spectrum.

It’s a win-win as far as I’m concerned.