MY kid is spectacular!

Today was a good day.

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

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

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

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

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

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

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

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

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

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

And thank goodness that I did.

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

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

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

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

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

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

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

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

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

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

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

The Lorax got it right.

image via alittledelightful.com

Today I went to a Sue Larkey seminar and she was fantastic. As usual.

But I’m not going to write specifically about what she taught us today but instead I’m going to write about what I personally took away from the seminar.

Let me flash back to when I heard Sue Larkey talk for the very first time quite a few years ago now. It was 2008 and Harley was only 5 years old and had only very recently been diagnosed with autism. I was attending my very first Tony Attwood autism seminar and Sue was a guest speaker there.

I remember sitting in that crowded auditorium with literally hundreds of other parents, teachers and carers listening what seemed like hours and hours of information, strategies, advice and ideas and I was overwhelmed and distraught to find out that there was so much that I didn’t know and needed to learn to help my boy.

I came home that night and sat in my bed and cried and cried and cried for literally hours. It was almost like I was reliving the emotional distress that I felt when I first learned that he had autism. I was emotionally and mentally overloaded and felt an enormous sense of helplessness washing over me in tidal waves.

I asked myself: How could I possibly ever learn all THAT?

At that first seminar I took very few notes and absorbed only what my brain could handle but there was a handout (thankfully) that I was able to dive into and explore much later on when I had the brain space to do so.

Gradually, I started to seek out information in my own time and strived to learn as much as I could. I wanted so badly to understand the workings of my son’s wonderfully wired brain. So I started observing him at play, with strangers, with friends and in his classroom environment whenever I went in to help and I found that there was an absolutely brilliant child hiding behind his struggles.

In him I recognised my own stubbornness and refusal to be told that I cannot do something and it spurred me on even further. I threw myself into discovering ways to help him to be the best that he could possibly be. I stared down the challenge and determined that he was going to be successful NO MATTER WHAT!

And slowly – things started to become clearer and clearer.

Then I met my friend LISA who is an adult on the spectrum and my eyes were opened to a whole new level of understanding and possibilities. Seeing autism through the eyes of someone on the spectrum is Uh-mazing!

Even today in the seminar Sue played us a few videos and every single one of them was an interview with an individual with autism. Sue recognises that we can learn SO MUCH from those who LIVE with autism personally and can explain it first hand to those of us who are really only textbook trained. She featured Temple Grandin and Carly Fleischmann. (See video below).

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Honestly…..both of these women are remarkable and well worth the time spent watching some of their videos.

Like my wonderful friend Lisa – these amazing ladies have really opened my eyes and increased my understanding of autism and sensory needs in my boys.

But do you know what I took away from today that surprised me more than anything? What amazed me and gave me the boost that I have been needing oh-so desperately lately? And what reassured me that my boys are in fact going to be ok?

 Confirmation.

She confirmed for me that my gut instincts are spot-on when it comes to my boys. A lot of the stuff that she shared about was stuff that I am already doing with them. Much of which she suggested, spoke about and taught were things that I am already instinctively applying to our family situation.  And these are things that I have learned myself through trial and error and from applying ideas that I have either researched or learnt myself on my own time.

No-one taught me a lot of this stuff – I have learned most of it just by simply following my own maternal gut instincts.

And remember that 4 years ago I was scared out of my head that I was going to somehow fail my child and that he was doomed to a life of mediocrity because *I* couldn’t be the mother that he needed.

~

I remember being told by parents with older children on the spectrum that ‘it gets better’ and I scoffed and rolled my eyes at them. I couldn’t see past the next ten minutes and all I could see was hourly meltdowns, tantrums, hurdles and struggles. I had difficulty believing that it wasn’t always going to be as hard as it was at that moment. But that does really honestly change.

You still experience different levels and intensities of emotions with your child but the battles change and your coping mechanisms increase.

So I want to encourage anyone who is new on this journey and let you know that it DOES get better. It will probably never be easy all of the time but even regular parenting rarely is.

Now let me explain something important here: I am not university educated, I do NOT claim to know everything there is to know about autism and I still learnt a LOT of things today that I didn’t know before. There is always more and more to learn. I am certainly not a scholar and in fact I failed grade 12 because I hated school and never really applied myself so you don’t need to be blessed with super duper intelligence to be a successful parent to these amazing kiddos.

I believe that the most important thing you can give your child is love. If you can love them and accept them just the way they are, you will find that things naturally and gradually fall into place.

It IS overwhelming at first. It IS scary and it IS terrifying when you realise just how complex ASDs are and what they bring with them but you don’t need to know EVERYTHING to effectively parent your child.

You only need to love and focus on your own child and work on helping them. If you love them you will naturally want the best for them anyway and find that information is unconsciously absorbed through applying new methods and strategies.

When I look back to 4 years ago and realise just how far I’ve come without even really trying – I see that there IS a light at the end of the tunnel.

I will NEVER know all there is to know about ASDs because there is so much to learn. But I am in tune with my boys and their needs.

And I know that all of you love your kids too so I’ll finish with one of my all time favourite quotes from Dr Seuss’s The Lorax:

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

I remember…..

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

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

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

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

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

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

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

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

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

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

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

I didn’t believe him.

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

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

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

And it got me all excited!

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

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

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

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

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

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

Where do I go from here?

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

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

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

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

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

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

OK  ;)

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

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

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

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

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

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

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

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

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

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

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

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

So then the tears begin.

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

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

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

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

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

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

And then the guilt begins.

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

I totally bailed on them both.

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

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

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

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

And why doesn’t anything seem to work?

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

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

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

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

Where do I go from here?

Executive functioning and visual aids.

Temple Grandin once said:

“I cannot hold one piece of information in my mind while I manipulate the next step in the sequence.”

Individuals with AS often lack the ability to use skills related to executive functioning like planning, sequencing and self-regulation.

>> Source <<

So, What is executive functioning and how does it affect those with autism? Well….in autistic individuals, it’s more of a “dysfunction” than anything else because it is something that many of them struggle with greatly.

Put simply: Executive Functioning is something that is instinctive in those with NT (neuro-typical) minds but needs to be taught and learned in children with autism.

It includes skills like planning, organisation, attention being held and the inability to see the big picture. People with an executive dysfunction tend to focus on the small or minor details and miss the rest.

As Temple Grandin said in the above quote –  She is unable to ‘plan ahead’ if she’s in the middle of a different task.

Can you see how many problems this can cause for my kids? Yep. A lot!

I often have to stop myself when I’m giving directions to them because I remember that I have given them too many instructions and that they are unable to take it all in and act on it.

Like – telling the kids to “tidy up their rooms”. That is waaaay too general and non-specific. So I have to break it down into little bite sized chunks and walk them through it step-by-step.

We are a big fan of using visuals in this house. We have them everywhere! On the fridge, above the basin, on the toilet wall, in the shower, over the bath, in the car and on their wardrobes reminding them to do the basic tasks like getting dressed. A simple picture of them getting dressed wouldn’t work, they need the sequence that the clothes need to go on.

And visuals are useless if you don’t teach your child how to use them effectively and have them teach you back so that you know that they fully understand the purpose of them.

As you can see in the above picture, all the tubs in our toy room have enlarged photographs on them of their exact contents. This makes it so much easier for the boys to tidy up. If they don’t know exactly where something goes they can look for it in the photo.

Below is a short video of Lucas and I today “tidying” up the toys and you can see how the technique has started to work but still needs a lot of work (on my part too).

Sure it’s a much longer drawn out process than if I tidied it myself, but it’s important to me that my kids learn these basic life skills so that they can take them with them into their adult lives.

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Oh , and I actually managed to post on my poor neglected ‘fun’ blog today as well. Just a silly poem about school holidays. You can read it by clicking >> HERE<<.

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Obsessed Or Overly Pro-active?

I was sitting chatting with a friend in a café catching up.

We hadn’t seen each other for a while and the conversation was moving along wonderfully. But suddenly she leaned over and said to me gently: “You know you’re kinda obsessed with autism right?”

I raised my eyebrows at her and feigned ignorance and replied: “Really? Do you think so?” While batting my eyelids at her.

“Well….yeah” she replied. “I mean, you write a blog, you have a Facebook page for the blog and all over your personal Facebook page it’s so obvious that you’re an autism Mama. You talk about it A LOT. It’s kind of an obsession for you isn’t it?”

I went home and thought long and hard about this conversation. She certainly had some valid points and I agree that it is a huge part of my life but I wondered about the word “obsession” and if it really was a fitting description. I wondered what exactly obsession means.

So I looked it up

obsession (əbˈsɛʃən)

— n 1. psychiatry a persistent idea or impulse that continually forces its way into consciousness, often associated with anxiety and mental illness

Isn’t that interesting?!

A persistent idea. An impulse that forces its way into consciousness.

Well!….. Yeah, autism IS persistent. It IS sometimes impulsive and a lot of the time it does create massive anxiety in both Harley and in me.

So does that mean that I’m “obsessed” with autism?

Well…whilst I can certainly see how it would appear that way…no, I don’t believe that I am ‘obsessed’. Extremely dedicated, interested, pro-active and keen yes, but obsessed? No.

Sure, it is a huge priority for me to continue to learn everything that I can about autism because it’s important to me to be able to provide exactly what my boys need. I want to be their safe place and their interpreter and translator. And for that to be effective…I need to know as much as I can about what I’m actually dealing with.

I’ve seen it too many times….the well meaning people who try to communicate with the boys but are clearly uneasy around them. And the boys have like a sixth sense with this stuff. They know when someone is belittling them or uncomfortable. They are really smart kids. They may not be able to read body language or facial expressions effectively but they instantly know who gets them and who doesn’t.

And this is why it’s important for me to understand as much as I can about autism and especially how it affects both of the boys differently.

So maybe I do talk about it a lot. I know that a lot of the conversations that I have with people somehow end up being about autism, but when you’re living something 24/7 and rarely get out…you can see why.

Other parents have no qualms sharing about their child’s latest academic or sporting achievement. Why can’t I proudly announce that my 5-year-old actually drank out of a straw without choking. Or boast about my 8-year-old who wrote his first legible sentence in grade 3? How about doing a happy dance because HE HAS A FRIEND! Because they are only small things for parents of typically developing children. But for me and thousands of other ASD parents….these things are huge and worth celebrating! These are things that we always assumed our kids would also do at the age appropriate times but had all but given up on them ever occurring at all after their autism diagnoses… We go on and on about these seemingly small achievements because we KNOW that they are massive leaps of progress in our worlds. It may appear to be a tad obsessive but for us – they are life-changing.

But another thing to remember is that autism isn’t exactly like having a broken leg. I mean, if you were to break your leg in a sporting incident…..it’s something that would inevitably come up a lot in conversation.

People see the plaster cast and they ask questions. They want to know all about the accident. Where did it happen? When did it happen? How did it happen? Can we sign your cast? There are Facebook status updates about it, a few cute photos and people continually ask you how you are managing now that things have changed.

But autism is a life-long diagnosis. And we mamas know that we’re in it for the long haul. Some autism Mamas don’t know that their child will actually be able to live by themselves one day, they know that one day they will no longer be here and their child will need a full-time carer because they are unable to take care of themselves. They lay awake at night worried because they just don’t know what’s in their child’s future.

Autism doesn’t simply disappear after a few uncomfortable months. And that scares a lot of people. But because we know that this is a lifetime commitment for us, we throw ourselves into being the best mother that we possibly can. Some still call that obsession and that’s ok, but when your 8-year-old son comes up and wraps his arms around your waist and hugs you tightly, you will happily wear that label.

And when he says: “ Mum, I know I’m harder work than regular kids. Thank you for taking such good care of me, I love you”…. You can handle being called just about anything in the world! Because moments like that make you realise that it’s all more than worth the tears, sleepless nights and frustrations and you throw yourself right back on the frontline with passion.

Obsessed or not. I’m not backing down.

¨ When your child is diagnosed with cancer, neighbours stop by your home bringing pre-cooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

Dr David Feinberg 2007

Confessions of a grumpy mother.

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

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

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

Told you I was cranky.

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

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

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

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

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

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

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

I actually laughed in her face.

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

Seriously?

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

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

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

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

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

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

~~~

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

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

Look closely…It’s all in the eyes…

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

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

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

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

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

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

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

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

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

I love that girl.

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

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

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

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

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

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

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

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

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

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

Which all leads to me yesterday.

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

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

So how did I know?

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

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

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

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

And this is where the word frustrated comes in.

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

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

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

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

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

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

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

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

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

I am Mrs 79. Pleased to meet you.

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

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

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

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

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

You get the picture.

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

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

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

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

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

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

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

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

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

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

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

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

So, back to the environmental factor in autism.

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

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

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

I guess I’ll never know.

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

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

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

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

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

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

Have a great weekend all.

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

~~~~~~~

Unsent letter

To the person who has hurt us,

You do know who you are,

I want to tell you here- right now,

That you have gone too far.

.

I want to let you know that we,

Still love you just the same,

But it hurts me when you judge our ways,

And give me all the blame

.

You know my life is not like yours,

And it will never be,

I do the best with what I have,

So please don’t bad mouth me

.

My children know that they come first,

And have my full attention,

So forgive me now, if you’ve to wait,

And I am not perfection

.

I feel that you just inward look,

And make it all about you,

But in THIS house, we’re not that way,

You never seem to approve

.

I’m sorry if you feel that I,

Have been a dreadful pain,

I have no time for childish rants,

It’s puts me off my game

.

My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

.

I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

.

I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

.

So instead of focusing on yourself,

Why not offer to shoulder our burden,

And walk a mile in different shoes,

Before just spurting your poison.

.

I work so hard but still you want,

To criticize me and complain,

You won’t believe in ASDs

So it’s always just the same…

.

I’ve tried to tell you all I can,

But you don’t want to listen,

So saying that I am “not right”

Has been your latest mission

.

If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

.

The things that you’ve complained about,

Weren’t done to tick you off,

My heart was right, and full of love,

But now….I’ve had enough

.

I can’t go on pretending that,

Everything is now okay,

I’ve tried my best – but it’s not enough,

I’ve nothing left to say

.

I truly hope that you get to,

The place where you find peace,

I pray that God will bless you lots,

And that this tension now will cease…..

Tidal waves.

I find it disconcerting to say the least when my child has a bad day, because a bad day round here doesn’t look the same as a bad day anywhere else.

No.

It looks like an angry tidal wave that is threatening to wash away everything in its path. You can’t escape it and there’s not a lot to grab onto to steady yourself anyway.

Everything seemed to be sailing smoothly this week until yesterday when Harley came home and flew into a rage that was completely unprovoked, unpredictable and unexplainable. As he ran through the house pushing things off shelves, kicking doors and walls and banging his own head repetitively on the cold, hard tiled floor, we stood by watching him helplessly knowing that we had to let him ride it out.

We knew that it was something big that had caused him to react this way and we also knew from painful experience that the underlying reason may not be something that would be discovered easily.

Although he appears to be in the fight response when he is like this, his inability to form coherent words when he is in this distraught state of mind causes him to cross over ever-so-slightly into flight mode. He mentally shuts down and his eyes glaze over as he searches frantically for a safe place. He needs to escape his own brain and he cannot rest until he does. He has been telling me in the days leading up to now that his brain feels fuzzy and that his head is telling him to stop spinning. I should have heeded this warning….

Because his cognitive functioning skills are non-existent at times like this and he lacks any hint of social appropriate behaviour when his brain overloads itself, I cannot do a darn thing for him.

He just needs to “get it out” and does so however his mis-firing brain tells him to do so. Appropriate or not.

But there is ALWAYS a trigger. It’s all about the three R’s. The rumbling, rage and recovery stages.

I failed to recognise the rumblings and was punched in the metaphorical face with the rage cycle instead and waiting until recovery arrived was my only choice. The only thing I could do was ensure that he was safe in the process and that his siblings were also kept out of his path until the storm had passed.

Eventually he fled to his bedroom and lay down on his bed thrashing and kicking until his body was so exhausted that he fell asleep. I went and laid down beside him and stroked his sweaty forehead and prayed over him until his body stopped fighting and surrendered to rest.

As an autism mother it is one of the most difficult parts of my job. It is draining, it is heart-breaking and nothing makes you feel more helpless than not being able to comfort your child when his thoughts are attacking him and he literally rips and scratches at his own head trying to get some peace.

But also as his mother – one of the most rewarding parts of my job is seeing him breakthrough and make progress.

He only slept for a very short time. Just long enough for his brain to process whatever it was that had triggered the tsunami and allow him to return to the world that confuses him so much.

He woke up and found himself in my arms and gave me a weak smile. His tiny voice shook as he shared with me his heartbreak.

And right then – my heart broke all over again.

He is being teased: He is being called a “baby” because he claims that his best friend is his teddy bear. He is being called a “Mummy’s boy” because he flew into my arms at school excitedly yesterday and gave me a big kiss and told me that he loves me. And he is being told that he plays silly games and talks funny.

Um yep…

 Socially inappropriate behaviour not in line with his biological age??   Can anyone say “ASD”?

Back to the freakin’ neurotypical teaching drawing board. It’s not fair. It’s just not fair.

Urgh…

Different NOT less.

This poem was inspired by a number of things that have transpired here lately. Firstly by Eustacia Grandin Cutler who is Dr. Temple Grandin’s mother who coined the phrase “Different not less”. She wanted the world to know that her daughter is remarkable but my no means any less of a masterpiece just because her thoughts and ideas are sometimes a little left of centre.

Another inspiration for this poem comes from sitting down at night and talking to Harley about his day and hearing the pain in his voice as he is starting to realise that he is different to his peers.

He has had a lot of “down” moments lately and it has been coming out in his behaviours at home.

No-one else is privy to this hurting side of him and that’s one of the downsides to being high-functioning I guess. He is able to recognise that he is an anomaly and is trying his darndest to change that and I’m so mega proud of my boy but sometimes feel like I’m standing on the sidelines watching a traumatic event take place before my very eyes and all I can do is stand anchored to the ground with my arms ties to my side unable to do anything to help him.

Sometimes I want to run away,

And leave it all behind,

I’m tired of the exhaustion, want

To quit the daily grind

.

The tiny things that make me see,

The hugeness of this task,

Of raising special children is,

A really montstrous ask.

.

It’s not the normal Mummy things,

That make me want to yell,

I can do the meals, the baths, the chores,

And manage very well.

.

The dressing kids and sorting fights,

And homework battles too,

I get that every other Mum,

Feels like she runs a zoo!

.

No, it’s not the things that we ALL do,

That make my tears begin,

And threaten to undo my cool,

and break my heart within.

.

It’s seeing how the simplest things,

Can totally undo,

My child because he cannot tell,

Me what he’s needing to.

.

When he erupts if he can’t cope,

I sense his physical pain,

I see the torment in his eyes,

And watch him thrash again.

.

He wants to be like all his friends,

He wants to blend right in,

He knows he’s different and that hurts,

His feelings through and through.

.

My mother’s heart just breaks apart,

When he tries to adjust,

To sit in crowds, with noise and lights,

And try to look non-plussed.

.

The things that others take for granted,

Really causes me stress,

I want the world to realise that,

He’s different but NOT less.

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!

Why traffic lights SUCK!

Lucas has a new ‘thing’. He likes to sing in the car.

But it’s not just any old singing. Oh no…..because that wouldn’t bother me so much.

Regular singing would be cute and bearable and maybe even catchy, but his is the repetitive nonsense type of singing that makes you want to poke yourself in the eye.

Until it bleeds.

Because that would be less painful.

UGH!

And it’s not that he is terribly off-key, in fact – he seems to be the only child of mine that picked up any of my musical abilities but it’s more the type of songs that he chooses to sing that do my head in.

For example: Does anyone remember the Traffic light song by the Monty Python guys?

Well for the uninitiated: here is the worst song you could possibly imagine.

Now try to imagine it being sung to you over and over and over again…..

Do you feel sorry for me yet?

Oh….and a huge thankyou to my lovely husband for showing it to the boys in the first place

Awesome.

Totally Awesome.

Lucas regularly sings this insidious song in the car, but that wasn’t what he chose to sing this morning.

No, this morning’s song was a made up song that stemmed from an episode that we had a few weeks ago where he completely pushed my buttons and got the desired reaction from me and therefore obviously never forgot about it.

It also happened in the car on the way to school one morning.

Harley had whispered to Lucas that it would be funny if he told me that he’d peed his pants. Which was just lovely as you could imagine.

So…. he did and he acted the part so well that I totally took the bait and completely freaked out. I pulled over to the side of the road and got out of the car whilst going off my head ranting at him: “Why didn’t you tell me you needed to go?”.

I opened his car door and reached in and put my hand on his legs to check the relative humidity and at that exact moment they both started giggling hysterically saying: “We tricked you Mummy! We were just joking!”

I failed to see the humourous side and they knew it but they couldn’t stop laughing for the rest of the way nonetheless.

~~~

So anyway….back to the song.

After I’d dropped the older kids at school this morning, I started to drive Lucas to pre-school. I turned onto the freeway and a little voice from the backseat piped up singing a song to the tune of “The Farmer In The Dell”.

Here’s the tune:

~~~~~

Lucas’ version went like this:

“I think I peed my pants,

I think I peed my pants,

Uh-Oh Mu-u-mmy,

I think I peed my pants”.

Ok….So I laughed at his cleverness the first time and maybe even smiled the second but by the 93^rd time in 15 minutes ….I was ready to commando roll outta that car going at high speeds and make a run for it!

And I’m more than a little suspicious that he had some help coming up with the lyrics for this….Hmmmmmm?

So…what do your kids like to sing in the car and does it drive you completely batty too?

~~~~~

Exploring emotions.

  Meal times have always been a downer here. Rarely have I cooked a meal that all of them have been willing to eat. Tears are a regular occurrence and more often than not I leave the table defeated and somewhat angrier than I was when I sat down.

It’s true that I’m no Master chef but I can do a little better than canned food and toast, but because we have so many conflicting sensory and taste issues here – it’s almost impossible to keep everyone happy all of the time.

Tonight I served up dinner and Lucas and Ella sat down happily, said grace and started eating.

And of course : Harley threw a fit.

Nothing new there, we get this about 4 nights a week. So I casually bent down and picked up the fork that he had sent flying in rage and left him to it.

The other 2 kids are so used to this kind of behaviour that they hardly blinked. They simply went on eating oblivious to the jumping, flailing, screaming and whining.

After a few minutes with no response from any of us – he calmed down a little bit and edged closer to the table to see if he could elicit some sort of reaction from me so I grabbed the tomato sauce bottle and made a smiley face on his plate with it.

I thought this might make him laugh (or even smile at the very least!)

But no. He wasn’t budging.

I went back to eating my dinner and watched out of the corner of my eye as Harley walked around to the other side of the table and grabbed the BBQ sauce bottle and headed back to his seat.

I assumed that his little display of displeasure was over and he’d realised that he wasn’t going to win and I expected him to sit down and start eating therefore silently admitting defeat.

But I was wrong again.

He used his fork to smear out the happy face I’d made and used the BBQ sauce to make a sad face instead next to it and then pushed his plate away and marched off to his bedroom in a flood of tears.

What followed during the next ten minutes conjured up a lot of very mixed emotions in me…I was annoyed, frustrated, proud, relieved, joyful and sad.

All at once.

Harley had taken a pen and a pad of paper into his room with him and had drawn a picture of himself on about 8 different pieces of paper, each with a speech bubble coming out of his mouth. He had then written in each bubble a word and distributed these drawing throughout the house.

He left one on my pillow, one on the table beside me, one on the kitchen bench ….(you get the picture).

I studied them intently trying REALLY hard to decipher his writing but I failed miserably. As hard as I tried, I could not understand his writing and this just seemed to exacerbate his anger so he went and hid underneath the fuse ball table in the back room for half an hour silently rocking back and forth with tears streaming down his little face.

After we’d finished eating, I went and sat down beside him with all the notes and asked him if he could read them to me.

He’d calmed down enough at this point to talk to me and he did.

The bubbles said: “I’m angry”, “I’m sad”, “I’m hungry”, “I’m scared” and “I’m tired”...

Well I just about suffocated him with the huge hug that I wrapped him in because I was SO proud of this amazing progress!

My boy was not only able to recognise and own but CONVEY his feelings and emotions to me in a calm manner!  How cool is THAT?!

Suddenly the frustration that I had at not being able to understand my child was overwritten by a warm fuzzy emotional tidal wave!

It seems that my attempt at making him smile with the sauce actually prompted him to express what was going on inside him. It was the trigger that he needed to tap into his emotional state and he then found a way to communicate with me even amidst his stress.

The sad face that he drew back started a domino effect of emotions that just spilled out of him and I think this is absolutely wonderful!

I have given him some emotions visual cards that I have had printed up for a while now and he is very excited about that. Onwards and upwards I tells ya!

So what does fair mean?

  I posted about this particular topic over 12 months ago but this particular issue has raised it’s ugly head again recently so I wanted to revisit this subject because my feelings on it have not changed since and I am still very passionate about getting this message out there.

The majority of my blog posts stem from conversations I’ve had with friends and/or family and occasionally things I read, watch or hear through the media or Internet. But mostly, the topics for my posts come from personal situations that either one of my children or I have been involved in directly.

I know that I tend to over think things and sometimes I come up with the wrong answer but I rarely take things at face value anymore. I am just like any other mother who wants what’s best for her child but in my kid’s cases – I often have to fight harder due to the invisible nature of their disabilities. (Yes…I hate that word too but don’t attack me for it).

Recently, I was chatting with a good friend of mine who doesn’t have any special needs children at all. Her middle son is doing wonderfully at school but she told me that there are some ASD and ADHD children in her son’s class and how disruptive they were to her son. She then commented on how unfair it was on the rest of the class to have to wait for the teacher to deal with them all the time.

I saw her point and because she is a great friend and always will be, I know her heart and it is not one to cause offense or be judgmental so I made the decision to not call her on it and I let the comment slide.

I also know that unless you have a child with a special need it’s often difficult to understand that a simple task like sitting still for ten minutes can take ALL of their days worth of concentration and energy leaving nothing for the next 5 hours or so. These kids often just appear to the untrained eye to be a disruptive, inattentive child with behaviour issues. It’s difficult to understand that there is a helluva lot more going on than meets the eye and I get that because I’ve been there with Ella. I’ve been judgmental myself ….once upon a time!

I was thinking about my friend’s harmless comment again today in a new light and I remembered the earlier post I wrote that was about something that I heard once at an autism workshop that I attended. The subject we were discussing was behaviour at school particularly in relation to children on the spectrum in a mainstream setting.

The lady that was leading the seminar gave a great example to answer this question.

She said:

“Imagine, I am an ER doctor who is fully qualified in CPR and the person next to you has a heart attack. And even though I could (and probably should) step in and start CPR and mouth to mouth, I choose not to because it’s not fair to everyone else here that didn’t have a heart attack”.

She then went on to explain that by not giving our kids the help they needed because the other kids are being left out is no different to the ER doctor not wanting to “play favourites”.

I know how ridiculous it sounds when you put it like that but it sure makes a great point! My friend D told me that her son had a pre-school teacher that would tell the other children who complained about his perceived special treatment that fair is not everybody getting the same but everybody getting what they need.

How great was that teacher!

But don’t misunderstand me here. I totally understand where parents of well behaved, highly achieving, typically developing children are coming from when they complain about how their kids seem to be missing out because our kids require so much of the teacher’s attention and time. I get that. Really I do.

I help in my son’s classroom and I SEE that he is a handful. But I refuse to apologise for him because he is just being who he was created to be. There is a huge difference between ‘naughty’ and ‘overloaded’.

And because I am a parent of 2 children with ASD, I also know that it’s not our kids’ faults that they were born autistic (or with a special need of some type) just as the person having the heart attack in the above mentioned story didn’t choose it either. So why should they be penalised for something that is out of their control?

Exactly. They shouldn’t.

As a dedicated warrior mother to two fabulous spectrummy kids – I push not for better or preferential treatment but only what they deserve.

Don’t all kids deserve the very best?

Just a little food for thought……

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…..

Facing the music.

Because Mr Patient has been away a lot lately and because taking the children out to dinner can be a bit risky – we decided to all head up to a smaller shopping centre to eat lunch together today because lunch ALWAYS goes better than dinner in our experience.

It wasn’t a total disaster but it certainly had potential! You can read about the last time we attempted to go to this centre –> HERE <–.  No, this visit wasn’t as eventful but it certainly came close!

After we had parked the car and entered the shopping centre – we walked towards the food court we noticed a lot of people all heading in the same direction as us . It was lunch time granted, but to see SO MANY people was really strange!  This centre is not usually packed to the rafters like it was today and we knew that there had to be something going on.

We rounded the corner and Harley stopped dead in his tracks and almost tripped another couple over in the process. He grabbed my hands and clamped them tightly over his ears and turned to me as white as a sheet and said: “Oh no Mummy, I can’t do this!”

I looked ahead and saw the long, long line of excited teenagers and heard the extremely loud music that we were walking towards. And then I saw what all the commotion was about. I’ll tell you but first let me ask you a question: what are the chances that a previous winner of Australian Idol would be signing autographs courtesy of the local radio station in this tiny little centre?

Yeah…..pretty slim but guess what? We managed to pick not only the day but the very time that he was performing live.

I knew I had to act quickly to avoid a sensory overload meltdown so I thrust some money into Mr Patient’s hand and told him to go order the kid’s food . I then added that I was off to the hardware and that I would meet him back in the food court in about ten minutes.

I purchased some bright red headphones from the motoring section and although they weren’t fully noise cancelling – they provided enough muffling to enable Harley to make it through the entire meal.

We found an isolated corner to sit in and proceeded to enjoy our meal as a family. The usual chatting didn’t happen but we did manage to communicate via silly facial expressions and hand movements.  I wonder what our fellow shoppers thought of my weird family and their silliness?

I don’t care actually – we had a GREAT time and that’s the most important thing.

And the added bonus? I now have a pretty red pair of headphones that I can wear around the house to block out my kids!  Bahahahahaha!