Where do I go from here?

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

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

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

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

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

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

OK  ;)

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

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

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

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

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

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

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

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

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

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

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

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

So then the tears begin.

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

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

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

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

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

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

And then the guilt begins.

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

I totally bailed on them both.

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

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

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

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

And why doesn’t anything seem to work?

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

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

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

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

Where do I go from here?

Confessions of a grumpy mother.

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

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

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

Told you I was cranky.

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

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

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

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

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

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

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

I actually laughed in her face.

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

Seriously?

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

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

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

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

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

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

~~~

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

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

Look closely…It’s all in the eyes…

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

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

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

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

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

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

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

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

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

I love that girl.

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

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

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

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

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

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

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

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

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

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

Which all leads to me yesterday.

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

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

So how did I know?

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

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

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

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

And this is where the word frustrated comes in.

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

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

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

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

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

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

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

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

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

Someone broke my baby.

There has been a huge shift around here lately. And it’s really thrown me. I’m not sure what exactly to do so I’m gonna write until I can get my head around it and try to make some sense and figure out a game plan.

Feel free to click somewhere else if you’re not interested in my ramblings. I wouldn’t blame you!

~

Oh? So some of you stayed! I’m impressed!

I’ll go back to the start of the story:

Exactly five years, 8 months and 2 weeks ago we welcomed out second little boy Lucas into the world.

He was unplanned but a really beautiful surprise. He was an incredibly good baby and an absolutely treasure. I admit that I was nervous carrying him for several reasons but mostly because I was genuinely scared to have another boy.

You see, Harley was an absolutely impossible baby with more issues than you could poke a stick at and still at almost 9 yrs old doesn’t sleep through the night.  Or cry any less, or eat any more or behave any better than when he was a toddler.

Ugh.

I remember the day clearly. I was at my 20 week ultrasound. And when the sonograper told me that I was carrying a boy, I burst into tears, NOT because I was disappointed and NOT because I didn’t want him but simply because I just didn’t think that I could possibly go through all of that drama again. The very thought of dealing with 2 completely out-of-control little boys just scared the pants off of me! (Harley was still undiagnosed at the time).

I have always said that out of the 2 boys, Lucas is the easy-going and unflappable one and Harley (although an absolute treasure and blessing himself) has been the almighty handful.

I’ve written MANY times that despite both of the boys sharing a diagnosis of Aspergers Disorder, they couldn’t be more different. Lucas has flourished and shone from very early on and Harley has struggled with extreme anxiety issues, massive sensory issues and is way more aggressive by nature.

But that has started to change lately.

These days – Harley is getting up in the mornings, making his own breakfast, eating it and getting dressed in record time. He has finally worked out that once everything is done – he has more time to do the things he enjoys before school. It’s been an absolute joy to see him so compliant and has given me hope for the future after all the years of heartache that he has provided.

And just when I started to count my chickens…. I found plenty more just waiting to hatch.

Because nowadays, Lucas has taken up the baton and has picked up where Harley left off.

We are running the same frustrating marathon that we ran with Harley at the same age and I gotta tell you – it absolutely sucks.

Lucas is now the one lying thrashing on the floor screaming, kicking and flailing his arms every morning. He is refusing to eat breakfast, making his body like a dead weight so he can’t be picked up to be dressed and hiding underneath his bed and refusing to comply with anything. Cleaning his teeth needs 2 adults . One to hold him down and prise his mouth open and the other to block their ears with their spare hand and shoulder to drown out the screaming and try to wrangle a toothbrush into the tightly clamped shut jaw.

Mornings have become quite a drama and it’s taking me almost and hour and a half to get them out of the house these days. He is crying more than I’ve ever seen him cry and is coming home in the afternoons like a bear with a sore head.

It’s like he has had a complete personality change.

I went and spoke to his lovely teacher last week and asked her if she’s noticed anything different in the classroom. And predictably she said that he is doing really well. ( I expected that *sigh*)

In fact, she said that he is on a reading level that is a lot higher than most kids his age and that he excels at reading and writing. I stood there with my mouth hanging open and was shocked to say the least since I’ve watched Harley struggle with every.single.aspect of school since day dot.

I’m not used to hearing things like that. Usually teachers tell me that “I know he’s trying but…..” or “He needs to work on….”.

So to be told that your child is excelling should feel really good right?

Well maybe if we weren’t copping the brunt of his exhaustion and frustration at home.

I think he does actually love school but it is absolutely draining him. I think that it is a case of the typical aspie habit of keeping it together at school and losing the plot in a big way once he’s safe at home again. I’ve seen this all before.

But whatever it is, I want it to stop. For his sake as well as ours. I want him to not only cope but to thrive and flourish. I’m thrilled in the progress we’ve made with  Harley but wishing that I could enjoy it more without this hanging over my head.

I’m too tired to do this all over again for God only knows how long. I feel like I’ve done my time, and I’m stamping my foot and pouting. It’s just not fair.

Lucas used to be my placid side kick. He was my take anywhere child. He was a reminder to me that I wasn’t a crappy parent and that Aspergers was more than out-of-control behaviour and aggression.

But then I sent him to school and he came home all changed.

Someone broke my baby.

Was it worth it? Yes, yes it was!

Occasionally, our family likes to walk on the wild side.

The most relaxed we've been for a while!

But for most regular families these kinds of things don’t seem to be all that wild because they are things that they probably take for granted and really don’t have to give a second thought to. Things that have become as natural as breathing, like taking a family outing to a live stage show as we did yesterday.

We took the kids to see “How To Train Your Dragon” and it was wonderful.

The preparation that we put into this event before even leaving the house was mammoth and it’s sometimes a mind-numbingly boring task, but one that is extremely necessary if we want to survive!

In the days leading up to Saturday, we spent time talking about what might happen and discussing what to expect with the boys.  We NEED to do this because if we don’t – we suffer the consequences in over-stimulated and inconsolable children.

In our chats, we covered things such as: crowds, smells,  loud noises, bright lights and anything else that might be an onslaught to (Harley in particular)’s sensory system.

So yesterday morning, we packed the car and reversed out of the driveway.

Cue the anxiety. DESPITE all the preparation. *sigh*.

Harley rocked, he flapped, he cried and he yelled. I was kicked in the back of my seat several times and during the 45 minute drive, we were asked dozens of times ‘How much longer’ through a torrent of tears.

To a person who is unfamiliar with autism and how anxiety and fear of the unknown can often present – it would have easily have seemed that he was being an ungrateful and spoiled brat. But I knew that he was just unsure and overwhelmed with the anxiety that so often cripples him, but even myself who understands the why’s of this behaviour seriously wondered if it would have been better to just turn around and go home.

However – one thing that we have learned is that we know that we need to expose our kids to more of these kinds of situations – as hard as they seem at the time – to help them to learn what is and isn’t acceptable behaviour in public. I often feel cruel putting them in situations like this that are difficult for them but know that the end pay off is worth it.

And it was.

They absolutely LOVED the show, and to watch the wonder on their little faces as they took in the drama and action was priceless.

And I had another example of how small the world really is. The lovely lady sitting beside me  (Let’s call her *Jenny) had a lovely teenage son who reacted to the smoke in the air before the show began. I noticed him pull his shirt neckline up over his nose in much the same way that I have noticed my own kids do it and smiled at her. We got chatting and the “a” word inevitably came up and there was a direct understanding instantly.

My how I LOVE these kind of encounters

*Jenny had forgotten to bring her son’s iPod so I was able to give him some spare ear plugs that I keep in my handbag. We swapped names and have now become Facebook friends.

So Hi *Jenny if you’re reading this!

~

After the show finished we went to a nearby park and got some fish and chips to eat under a tree. It was fabulous.

We laughed together about funny scenes and each of us told what out favourite parts of the show were. There was MUCH excitement!

I took in the moment with a mental photograph as this was as close to normal that I have seen us all in a long time. At that time, we were just another family sitting under a tree together giggling, smiling and enjoying being together. Sadly – this is quite rare for us these days and I didn’t want to ever forget that exact moment.

The park we went to was like a massive O.T. session for the boys and we spent a couple of hours watching them slide down tunnels and climb up rock walls and spin, swing and run to their heart’s content.

It was absolutely the best afternoon and I’m so thrilled that we got to spend it together. As a family. Doing what other families do. ALL THE TIME.

Eventually Harley started showing signs of reaching his limit and Lucas started flagging as well so we headed for home. We fed them, bathed them and then everyone went to bed early. Once they were all settled,  Mr Patient and I all sat down with a huge glass of wine and we crossed the day off as a raging success.

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Or so we thought at the time.

Yesterday was a huge day and it took its toll on them more than we had realised. This morning in particular was really really hard. Harley was a mess of tears, anger, frustration and tiredness.  I had to carry my almost-9-yr-old son into church and he clung to me like a baby koala. He had tears streaming down his face and I had to end up sitting out underneath a tree with him outside rocking him and soothing him for quite a while until he calmed down enough to go inside again. And it absolutely breaks my heart when he’s like this – especially when I know that I have had a large part in him reaching his limit but I know that we have to expose him to the real world in order for him to learn how to function on his own one day.

And because his disability isn’t obvious to the untrained eye – he will need to learn to adapt to different situations to survive in life and gradually, we are helping him to understand this.

And THIS is precisely what autism families mean when they say no to an invitation citing the reason “It’s not worth the repercussions later”. THIS is why we often opt to stay in our safe little autism bubble shut off from the world. We are not being exclusive, we are not avoiding people, we are doing what’s best for our kids and ultimately ourselves. But we know that eventually we have to step out for the greater good.

And that’s exactly what we did…….One small step at a time.

Hope you’ve all had an awesome weekend.

Fi x

A valuable insight.

I often write that I am not very good at coping in certain situations. And try as hard as I do, it’s just the way that I am made and no amount of pushing or criticizing me will change my genetic and neurological make up.

Talk to the big guy if you have a problem. I am a product of His workmanship. I didn’t self-design. I can only work with that which I was given.

And He has wired me to be a sensitive person which is wonderful at times – but also can be a REAL burden at others because I have a tendency to take EVERYTHING to heart and it eats away at me and festers long after the original wound was inflicted.

And part of being super-sensitive involves a lot of tears being shed.

Like this morning.

I had intended to go to the school and watch Ella give her speech to middle school. She was chosen as the finalist to represent her class in the heats last week and today was the big day.

I arrived early and grabbed a seat only to be handed a program and discover that she wasn’t on for another 2 hours.

I looked at Lucas and then at the 40% battery level on my iphone and realised that there was no way that I could stretch either for that long.   I made the decision to swap my plans around and go to the local shops and buy my sister’s birthday gift first.

But after I arrived at the shopping centre, my daughter’s teacher called my mobile and told me that it was moving along a lot quicker than they had anticipated and that  Ella would be on next.

I sighed and explained where I was and that there was no way that I could get back there in time so he offered to try and video if for me instead.

Oh well…..I was disappointed but knew that I couldn’t do anything about it. It was just one of those things. I did feel like I’d let Ella down though.

***

The shopping centre that I was at has free parking for the first 3 hours and then they charge from then onwards.

I knew that I would only be an hour so I parked there , and for the first time in my entire life – I took the little parking ticket with me in my pocket instead of leaving it in the car as the signs all around advise you to NOT leave it in your vehicle.

After visiting EVERY single women’s clothing shop in the centre and finding nothing suitable I gave up and decided to head home again. I took the ticket out of my pocket and checked it and realised that I had been there for only one hour and ten minutes.

Perfect – I was well under the free 3 hours.

I walked back to my car, went to get the ticket out and my heart lurched into my shoes.

I felt sick as I searched every pocket frantically and turned my handbag inside out looking for the darn thing. I couldn’t understand how on earth it had gone missing in less than a minute.

Had someone pick-pocketed me?

I was stunned.

I had no choice but to contact the security office and explain what had happened and I was confident that because the centre had only been open for an hour and a half, it was obvious that I hadn’t overstayed the free period.

They didn’t care. They made me pay $25 for a lost ticket…..

 TWENTY FIVE DOLLARS!

And I didn’t even buy anything in this darn centre!!!!

Before I paid it – I spent another half an hour re-tracing my steps JUST IN CASE….but to no avail.

 Lucas was getting tetchy by now and starting to repeat the phrase “Oh no, Mummy, no ticket” over and over and OVER again!

SO I reluctantly paid the stoopid money and drove towards the exit only to see that the boom gate was permanently raised and that the machine was broken so EVERYONE  got to drive out without a ticket anyway!!

***

You’d think I’d be angry wouldn’t you?

No…I was too upset. I pulled my car over in a far section of the car park and burst into tears.  I rung my husband and sobbed into the phone. I cried for almost an hour all up. I was so upset at myself and at the unfairness of the situation. I completely lost it.

He spoke to me gently and calmed me back down again and has rung me every hour on the hour since to tell me that he loves me. He knew that it wasn’t just these two small things that set me off. He knows that there has been a helluva lot go on in our little world this week.  He knew that my heart had been stomped on and that I was already extremely fragile.

But I have been thinking about this whole ridiculous morning since I got home again and it occurred to me that this is very similar to how my Harley explains his meltdowns to me.

•  He has told me that sometimes when bad things happen and he feels like he is going into meltdown that  he can’t focus on anything else that’s going on around him.     (Just like I couldn’t tell you if there were any people near me in the carpark – I can’t remember, all I could think about was the ticket. It was the ONLY thing I could think about).
•  He says that he feels panicky and scared.     (Even though I knew this was fixable – I was overwhelmed with a sense of anxiety that I couldn’t seem to get on top of).
•  He can’t hear what anyone is saying to him and he feels physically sick on the stomach. (I felt like I was going to throw up and I had to ask the lady on the intercom to repeat her requests and questions several times because I wasn’t taking it in).
•  And he just wants to escape. (I wanted nothing more than to jump into my car and drive far, far away from this place that was making me feel so stressed out and unhappy).

 Please note that I am not trying to trivialize his feelings or pretend to know exactly how he feels but am trying to understand him better.

And if THIS is anything close to how he feels – I have so much more compassion for him than EVER before…..it was purely debilitating and sickening.  I know it was only a $25 ticket and not the end of the world. Really I do. But it felt like it was.

But because I have had a really difficult past week and was hurt quite badly, it has made everything else that’s occurred in my life since then appear larger than life. Like a big fat magnifying glass that hovers above me.

And with Harley – it often only takes a very tiny spark to create a bushfire.  It’s rarely the little things alone that send him off…..it’s a culmination of many little things all linked together…..

And if you’ll excuse me, I need to go and remove my smudgy eye makeup before I leave the house again for the school pick up!

Thank you God for giving me this little insight into my boy’s mind….it is AWESOME!

WE DID IT!

Well, I think I’m seriously starting to get the hang of this parenting a child on the spectrum thingy!

Today was the book week parade at school and I thought it was going to be a shocker based on the over-the-top reaction I got from Harley this morning as I packed his costume into his bag.

He started crying and told me that he didn’t want to go to school but I bribed him by telling him that I would sign him out early and take him to McDonalds for lunch.

 He went dressed as Paddington Bear and I made him some furry ear muffs so that the noise of the excited children that was filling the auditorium would be muffled.

They worked a charm!  He did so well and was really proud of himself for walking up onto the stage with his classmates.

And I was proud of him too! Only a couple of years back we would have NEVER have gotten him up there!

Hooray for progress!

I kept my promise and took him out early for lunch.  It was wonderful to spend some time with my boy alone – he is a completely different child when he isn’t competing for attention with his siblings.

We giggled and chatted for almost an hour together before we went to collect Lucas from pre-school.

When we got home again from school I could see the signs of exhaustion forming on his face so I set up a crash pit with bean bags and pillows in the corner of his room and told him to have some fun jumping around and getting it all out of his system.

Then after about 15 minutes of this, the boys both went outside and finished off their sneaky OT session with some time on the trampoline.  I was just starting to pat myself on the back for reading his signs so well and congratulating myself for helping him to meet his sensory needs when I realised that it was already 6pm and I hadn’t rung the local Chinese restaurant to order dinner.

We had promised the kids last week that if they completed all the chores that we had allocated them through the week that we would reward them with a takeaway meal on Friday night. They had all opted for Chinese which I think is hilarious since all they ever eat is the boiled rice, but who am I to argue?!

So I rung the restaurant to place our order but they told me that there was over an hours wait on take out orders…..

Hmmmm, time to think very quickly. Harley is a creature of habit and I knew I had to choose my words carefully because he was sure to be disappointed at the change of plans and would panic if another option wasn’t immediately offered.

But just then the phone rung and Mr Patient asked me if we wanted to try the new family restaurant that had just opened in town instead.   Yup..it was decided.  We were going to give it a go.

I got the kids all ready and the second that Mr Patient drove in the driveway – we went and climbed into the car and set off on our way.

The restaurant was SO noisy, SO busy and SO crowded that I turned and looked at Mr Patient uneasily. We both knew that it may not be the best place for us but Harley surprised us by saying that he wanted to sit near the outdoor heaters that they had turned on so we took this as a good sign that he was willing to stay.   We approached the door hostess a little bit more confidently than we normally do and as she led us to our table I smiled as I looked at all the other “normal” families sitting around laughing, eating and drinking.

It was a fabulous feeling. We had done this with NO social story, NO pre-planning, had brought NO electronic games and were basically flying by the seat of our pants!

But I know from experience that things can change in a heartbeat. That’s the nature of the autistic spectrum and it often doesn’t take much to tip our precious little boy over the edge from coping to losing it.

And true to form -just after Harley had eaten his last chip, he looked at me and his bottom lip started to quiver. He leant into me and grabbed my hand placing it over his face.

I looked over at Mr Patient and he had registered it as well. Only seconds later the lip quiver turned into a moan and then a groan and finally a loud sharp cry of pain.

I glanced at my half full glass of wine on the table and sculled it as quickly as I could. Mr Patient instinctively grabbed Lucas’ jacket and started putting it on him and Ella started to pack up all of the crayons and colouring-in sheets  we had been given without even being asked to.

It was the most bizarre thing. Nobody said a single word but we all knew what had to be done. We all knew we had to get outta there quickly so each did our part to make it happen.  Our family were in sync with one another and we were all doing our part to avoid the oncoming freight train from crashing into us.

We have seen the volcano that is an over stimulated, non-coping Harley far too many times to not recognize the early tremors.

Mr Patient picked Lucas up in his arms and headed for the cashier to pay for our unfinished meal and I grabbed Harley, threw his heavy 8 yr old 25 kg body over my shoulder and made a swift beeline for the door.

I was almost out when I  saw a friend sitting near the door. She stood up to say Hi so I smiled and placed Harley down on his feet to hug her back all the while keeping a close eye on him knowing that I was playing with fire here!

I made our rendezvous as quick as I could without being rude and then excused myself politely and grabbed Harley. We  only JUST made it around the corner into the deserted car park before the tears started to flow. They streamed down his face like a leaking tap and his whole body shook with anxiety. All of the turmoil and pent up emotions were finally being released. He needed to cry.

I wrapped him tightly in my jacket saying “Shhhhh” in a gentle whisper and rocked him back and forth in my arms like a baby. It worked because he completely calmed within minutes.

Why did he come down so quickly?

Well – I can only speculate but I think that it had a lot to do with him knowing that his family “get” him. And not only do we get him but we love him unconditionally and leaving a table with unfinished food on it is nowhere near as important as getting him as far away as possible from a situation that frightened and overwhelmed him.

We did it!

After Mr Patient and I had settled the kids into bed after coming home, we sat down together on the lounge and smiled at each other.

We did it!

We actually did it!

We managed to have a meal out unannounced and we worked together as a team and made it happen!

Sure – it may never be EASY but it is completely doable.

And doable is WAY better than impossible.

Have a great weekend all.

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!

Was it something I said?

I’ve been feeling really sorry for myself today. I’m completely bored with my life.

It’s Saturday afternoon and it’s a beautifully warm typically Australian Winters day. Spring is clearly just around the corner and though I feel very fortunate to live in such a gorgeous climate – I’m still feeling very blue today.

About an hour ago, I looked out my front door and noticed the neighbourhood children playing in the cul-de-sac on their bikes and scooters and there is even a game of touch footy down one end. Some of the girls are blowing bubbles and there is a lot of giggling going on.

But where are my children?

Slumped in front of some sort of screen. Of course.

Be it a Nintendo DS, a computer or an iPad, they are simply refusing to go out and enjoy the great outdoors. They never want to go anywhere or do anything and are completely content to avoid other members of the human race in favour of stupid technology.

I know that I should “be the parent” and make them get off the damn machines but I also know that it will cause tempers to flare and I don’t feel like the screaming matches and tantrums that it will almost certainly activate so I’m taking the easy way out.

Certainly not when Mr Patient isn’t here to bear half the brunt for me.

Yep. Home alone again and I’m completely over it today.

He is doing some overflow work and has been in and out of the house all day and up until 10 minutes ago (when I sat down at this computer to write this) I was stomping around the house trying to convince SOMEBODY to do something interesting with me!

I asked the kids to go for a walk or to come and kick a ball in the backyard with me. They barely glanced at me as they declined my offer. *Sigh* This is SO not the life that I signed up for!

Where’s the excitement? Where’s the action? Where’s the FUN?

Before marriage and certainly before kids I used to always have somewhere to go and something to do every.single.weekend. And I ALWAYS had someone to do it with.

Weekends were the time that I caught up with friends and chilled out and enjoyed life to the fullest no matter what I was doing. I used to look forward to them and they were my reward for making it through another week.

And even after we had Ella (and up until Harley was born), we still continued to socialise with friends, go places and DO exciting things on the weekends and were never short of an invitation of some sort. But those days are no longer.

Nope – I feel like our family has some sort of plague. Or a “keep back” sign tattooed on our foreheads at the very least.

All the invitations have dried up and we really don’t understand why? We have tried to nut it out together a number of times but neither of us can figure out what the hell happened or where we went wrong. Why doesn’t anyone want us at their picnics or BBQs anymore?

Are we really THAT bad?

Are we too boring?

Or is our children that are the reason behind this sudden decline in friendships?

***

I think that deep down I do actually know the real reason but I’m unwilling to face it. And I have a strong feeling that Autism has a lot to do with it. Maybe not directly but certainly indirectly.

I think that people don’t understand us so they avoid us. Our lives are too intense and our children require more than a lot of people could be bothered giving so no-one wants to get close.

Or have we scared them off ourselves with the stories we’ve told or worse still…..I worry that this blog has painted such a horrid picture of life in our house that people no longer want to come anywhere near us?

Is this all MY fault?

***

Recently we have talked about the other possible reasons for the rapid decline in our social life and realised that all the places that regular people frequent and start friendships with other families are all out for us.

For example:

Church – Harley can’t handle crowds or noise and if we do manage to stay for a whole service and attempt coffee afterwards…we pay heavily for it later with an emotionally overwhelmed screaming child that can take hours to bring down again.

Sporting events – Are you kidding me? Loud noises, crowds, strong unfamiliar smells, flashing signs…do I really need to go on?

Children’s weekend sports – Well, team sports are automatically out for us due to Harley’s anxiety issues and fine motor struggles not to mention the complete lack of interest in them whatsoever.

Old school friends and their families – Um…..not here. I don’t have any. All mine are back in my hometown so that’s out.

Family members: Sisters,Brothers,Cousins, Aunties, Uncles – none live anywhere near here so ….No.

Work aquaintances – We live over an hours drive from Mr Patient’s workplace and I haven’t worked since Lucas was born 5 years ago so we don’t know anyone!

As Mr Patient and I continued to chat about this –he suggested that we make more of an effort to find some new friends and start inviting people over here first. You know….the whole “be a friend to have a friend” thing. But I couldn’t help but giggle at this idea. I mean, isn’t that like the episode of FRIENDS where newlyweds Monica and Chandler go on a mission to find another married couple that they can pair up with. You know….”married friends”.

They end up being so full-on and come across as so desperate that they scare of everyone in their paths!

Anyhow:

Sorry about the whole whiney tone of this post, I know it’s packed full of negativity and moaning but I’m just trying to work through a few things.

I do however wonder if any other ASD families feel this way too? Do any of you ever wonder where the heck you went wrong and where did everyone go? Do you still long for the acceptance that you’re always banging on about for yourselves or is it just us?

I’d be interested to know your thoughts?

Throwing out the books.

image from picturesof.com

Once upon a time in a house just like ours, many many years ago – we were experiencing some “interesting”  behaviour from Harley and I went searching for some helpful tips on how to handle the particular challenges that he was presenting to us.

When I think about it now-I can’t actually believe that I did this (a wire must have come loose in my brain or something) because I headed straight for the parenting books that I had on my bookshelves to see if I could get any little tidbits from any of them that might help.

Yeah, I know!

Dumb idea. REALLY dumb idea!

I completely agree now.

The first book I picked up should have come with a warning label on the side that said: If you are a parent of a child on the autistic spectrum…..DO NOT READ THIS BOOK!   It is written for parents of typically developing children and it will leave you feeling like a terrible parent because NONE of these methods will work for you.

The simple fact (as hard as it was for me to admit it at the time) is that my children don’t develop in the same way that neuro-typical children do so attempting to apply these methods to them was ridiculous from the get-go.

Let me explain:

Chapter one started off by stating that:  “As your child grows, they begin to understand the natural connection between actions and consequences”.

Then I read further to come across this little gem -

“Timeouts work well for all children between the ages of 2-8. Establish a suitable timeout place that’s free of distractions and it will force your child to think about how he or she has behaved. Don’t forget to consider the length of time that will best suit your child. Experts say 1 minute for each year of age is a good rule of thumb; others recommend using the timeout until the child is calmed down (to teach self-regulation)”.

 Calm down? Self regulation?

I remember thinking that if my child was able to self-regulate or self calm, I wouldn’t be reading this book searching for answers in the first place!

And for what it’s worth - my child didn’t used to go into time out ‘thinking’ about what he’d done wrong! – He was usually confused as to why he was even in trouble in the first place because most of the time he hadn’t been able to connect an action to this particular consequence!

On a recent note – we do actually use time outs in this house but for a completely different reason….we use them because *we* need a break from the child. We put them in their rooms so that they stop kicking, hitting or screaming at us so it’s usually more a case of a creating distance between the kicker and the kickee than the usual reason for imposing a timeout.

***

I know that I really should have tossed the book at this point but my curiosity got the better of me so I read on. I flicked to the chapter on 9-12 year olds and read this:

“Kids in this age group — just as with all ages — can be disciplined with natural consequences. As they mature and request more independence and responsibility, teaching them to deal with the consequences of their behavior is an effective and appropriate method of discipline”

Hmmmm, wasn’t this the same thing that I read way back in chapter one?

I can’t believe how far our thinking has come in only 4 short years!

And before you all think I’m being completely unfair and un-teachable here by bagging the aforementioned book - Yes, I do agree with some of the writings on some levels….but first I have to get over the hurdle that is my child being completely unable to predict consequences. Most of this book was founded on that premise.

Gosh disciplining would be a heck of a lot easier if my child GOT that small piece of the puzzle.

But I’m not going to go off on a negative rant here – no, I’m going to write about what WE do that (so far) seems to be working for us.

You know that phrase that parents use all the time “You’ve got to the count of three before I….” (insert threat of choice).

Well…I used to do that too, but I always ended up with a sobbing mess of a child who simply couldn’t process my request that quickly and would descend into a mammoth meltdown before my eyes.    So now I give him a slow count to ten instead and get the same result. He still knows that I am requiring obedience, but I am not rushing him and causing him more unnecessary stress.

And saying to one of my boys: “Remember what happened LAST time you did that” as a warning to not commit the same crime….chances are he is unable to recall it so now, I remind him as I go.

ie:

“Lucas – last time you tipped that jug of water on the floor – Mummy got really cross and you had to help me mop the floor so THIS time, I want you to stop pouring it NOW, before you get yourself into trouble” (side note – don’t ever use the phrase  ‘will get you into hot water’ on a literal child!)

And whether he is able to recall it or not – the message still gets through but without all the confusion.

Or how about when parents say to their kids:

“I want you to pick up your dirty socks and put them in the hamper, carry your soccer boots to the laundry, take out your lunch box and place it on the kitchen bench then put your school bag in your room”.

 If I said all that – I can guarantee you that NONE of it would get done and I’d have tears, tantrums and refusal on my hands.

I’ve had to learn that this is all WAY too much for an ASD child to process, there are too many steps to that command so I would then approach this scenario in one of two ways.

Either break the tasks up into single requests or write a list (for Ella’s age group) or draw pictures depicting what I needed to happen for the boys because they are younger.

I have to say that learning these methods and more have been life changing for us. A lot of the drama can be removed if I just remember to try to think like they do.

I’m continually trying to research new methods of how to help my kiddos and if anyone can put me onto a book that’s written specifically for ASD kids regarding disciplining and raising younger children – please write to me and share!!! I still need all the help that I can get!

And lastly – I have a handful of parenting books for typical children that are gathering dust  on my shelves.  Anyone wanna come and take them off my hands?  :)

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

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

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

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

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

But Harley’s wasn’t.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hooray!!!!!  He gets it!

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

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

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

Life is definitely looking up

The response we never knew.

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

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

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

Daddy was very concerned

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

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

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

***

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

Slumped in Mummy's arms. A familiar pose.

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

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

Otherwise known as: Survival mode.

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

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

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

He certainly gave us all a fright!

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

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

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

Thank you

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

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

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

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

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

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

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

*Sigh*

If only Harley wasn’t a fighter.

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

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

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

The Posse on the hill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is another scenario at play here as well.

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

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

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

It affects EVERY part of their lives.

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

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

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

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

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

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

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

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

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

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

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

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

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

Surviving on Fizzy Pop.

image via graphicleftovers.com

I was thinking about the difference between ‘coping’ and ‘surviving’ last night as I sat and chatted with a close friend that came over to visit me. I used that phrase to refer to how I am feeling personally at the moment and I realised that lately I have been a lot more in survival mode rather than actually “coping”.

But this post is not going to be about me.

My friend Valerie was the first place that I’d heard use these terms and she used them to refer to the way that children with autism are in a classroom setting amongst other children, and how they can often ‘appear’ to be doing quite well even though that’s often not always the case.

I wrote on Wonderfully Wired’s Facebook page recently that I always know when it’s going to be a difficult afternoon whenever Harley’s teacher tells me that he has had a great day. In fact, when I hear this – I inwardly cringe because I just KNOW that he’s saving it all up for me. (oh joy). I know that this is quite common in a lot of aspergers children (but by no means ALL of them) and I always thought the reason was that they are intelligent enough to know what’s required of them at school but once they get home again, all bets are off and the pressure cooker valve is finally released.

Well – this is true but my friend (an adult aspie) Lisa explained it to me in a different way. One that had never occurred to me before.

She commented on that observation of mine with these wise words:

A little Aspie nugget here: a good day from a teacher’s perspective means you did your work and behaved yourself. From my memory of this it also meant that I was shutdown, in daydream mode and holding back all day. I’ve been told by an Aunt that I’m like a bottle of fizzy pop. We all know what happens if we shake fizzy pop then take the lid off.

WOW!

I’d never thought of it like that!

So what the teacher was interpreting as a ‘good’ day meant that he was behaving ‘like all the other kids’. But what this required for him was to completely shutdown his natural tendencies and conform to be something that he’s not. I can now understand why we always cop the brunt so badly when he gets home. It’s because he just spent the better part of the day being something that he’s not and pushing his real self down and squashing the elements of his personality and nature that make him who he really is.

For him to be able to present a front of ‘coping’ – he was actually just operating in ‘survival’ mode.

And survival mode is hard slog. It is exhausting, it is mentally draining and it is something that no-one can keep up for extended amounts of time.

I was thinking more about the difference between the two and came up with this:

Imagine that your car breaks down in the middle of the desert and you are hundreds of kilometres from the nearest town. You have a trailer on your car that was filled with a months supply of food and water for you and your friend and all the camping gear and necessities that you will need to last you for weeks. Inside your vehicle, it is equipped with a GPS system and a radio.  So you find out your exact location and use the radio to send out an SOS call.

You reach someone in a town 2 days drive away who tells you that they can’t get someone out to you for at least 3 days due to staff shortages.  This situation is a total inconvenience to you and has thrown a spanner into your holiday plans right at the very beginning of your trip but you instinctively KNOW that you’re going to be ok.

You set up camp, boil the billy for a cup of tea and put your feet up with your friend in front of the blazing campfire and wait.

This is an example of ‘coping’ with an unexpected situation. Annoying – yes – but not the end of the world.

Now……

Imagine that your car breaks down in the middle of the desert and you are hundreds of kilometres from the nearest town. You only have enough supplies on board to last you both until you reach the next town. You have a radio (just like in the earlier scenario) but it isn’t working properly and is unreliable.  You can’t read the map that you brought because it’s written in Spanish and you have absolutely no idea where you are so wouldn’t be able to tell anyone even if you could reach them.

You do a mental inventory on the food and water supplies and work out that if you both eat and drink sparingly that you may be able to make it at least 2 more days. But after that- if you’re not found, things will be touch and go.

You rig up a makeshift tent beside your vehicle by tearing up the skirt that you are wearing and you drain the water from the window wipers just in case. Next you take the car seat covers off and use them to make a flag that you tie to your car aerial with the words “help us please” scrawled in lipstick from your bag and cross your fingers and hope , all the while not letting on how frightened you are to your friend so as to not alarm them.

This situation illustrates ‘survival’ mode.  Frightening, unpredictable and, and seemingly inescapable.

***

Miraculously a convoy of tourists drive past only hours later and you are rescued.

***

Now……In which scenario do you think that you’d be more likely to burst into tears of relief and vent all of your pent-up frustrations and fears onto the rescuer?

Certainly not in the first one because in that one – you were fully equipped with what you needed to get through (much like NT children) and whilst you were pleased to be rescued earlier – you were never all that concerned in the first place. You knew that you were going to be fine because you’d already sent for help and had the necessary coping strategies in place.

But in the second scenario (like our precious ASD kids) it was terrifying. There didn’t look like there was any foreseeable way out. Everything looked hopeless, you felt completely useless and you had to keep your brave face on for the sake of your friend. You were running on pure fear and survival instincts and not much else.

***

Your bottle had been shaken vigorously, the effort that you had to put in JUST TO SURVIVE took every last bit of control from you, your anxiety levels were sky-high and something had to give.

BANG!!!!!!

It’s no wonder my little fizzy pop boy explodes!

Love me every one day.

I had written a post yesterday afternoon after having a dreadful morning with Lucas.   

It was an absolute shocker of a day! It was meltdown central and SO draining!

I wrote it all out but then I received a phone call from a close friend.

She had some really crappy news and my whole mood just sunk. Everything that I’d just been through seemed really insignificant and tiny compared to her news.

None of it really mattered anymore.

My friend has been given the nickname of “Warrior Princess” amongst us all and it is very fitting!

She is always one of the first to step up and advocate for our kids and puts herself in the front line every time there is a battle going on concerning a child. We all look up to her and she has inspired me to fight until I see results.

She was  the friend that was on the phone to me immediately when she heard about the struggles that Harley was having at school last year and she kept pushing me to be a stronger, louder, more passionate voice for my child.

And I can’t thank her enough for that!

So when I read back over yesterday’s blog post, I realised that it shows a good example of what she has taught me!  I stood up for my child, I didn’t shy away from speaking the truth out and I believe that I would have done her proud!

It is because of this that I have decided that I am going to post yesterday’s post after all.

It’s dedicated to my friend who is in my prayers and who I will be pulling for ALL THE WAY!!!!

Love ya mate!

************************************************************************************************************************************

So today was very interesting! I needed to buy some groceries because our cupboards and the fridge were both looking a bit bare. I knew that I also needed to do a few other little errands so decided to go to a larger shopping centre than I usually do so I could do it all in the one place.

The commotion all started because I usually do the grocery shopping at a little centre that only has a supermarket and a few other small shops like a butcher etc, and I didn’t pre-warn Lucas of this change of plans because he’s not usually the kind of child to react to this kind of change.  But today, he completely lost it in a BIG way!

He screamed and screamed and kicked and attacked me. He was SO LOUD that many people stared , tutted and shook their heads.

I couldn’t carry him because he would go all floppy every time I attempted to pick him up so I had to literally drag him by his collar over to a seat so I could at least hold him tightly and try to calm him.

I had an older man come over and actually said to Lucas: “You’re being a naughty boy for Mummy”…..

I told him that he was NOT being rude but that he is autistic and not coping very well.

He rolled his eyes at me and said: “Oh these stupid fancy names – they’re all excuses,  he’s just a typical naughty boy, they’re all over these days because Mum’s are too soft”

So I raised my voice over Lucas; screams and said: “You sir, are a very rude and outspoken man and I don’t appreciate your opinion being thrust onto me. Especially since you don’t even know what I am dealing with here.”

 

And yes, other people heard me but I SO didn’t care!

 

Another lady came up and started saying: “What’s wrong mate, that’s a big noise for a little fella ” in Lucas’ face as he thrashed and screamed and I smiled politely, told her that he didn’t understand her so she said it LOUDER!

I politely explained that he doesn’t have a hearing problem but that he is autistic and is currently unable to process anything that she is saying..

She walked off  - miffed – without even so much as a goodbye.

Then over to my right, two ladies sat at a coffee shop whispering to each other and staring at us. Then as they were leaving, they walked past us, and then one of them said loudly enough for me to hear:  “Why on earth won’t she just take that child home?” and this time I knew that I had had enough of people judging me and my child.

I stood up, followed her and tapped her on the shoulder and said in my finest sarcastic voice:

 

 “Do you really want to know why I won’t take him home?…..I’ll tell you why. It’s because families with autistic children still have to buy groceries and eat too. Sorry that we are interrupting your morning and inconveniencing you”.  Then I flicked my hair triumphantly and walked back over to my now- moaning little boy.

 

Her face went pale and she shuffled off without even so much as an apology.

I didn’t care.

I simply couldn’t understand how so many people could just watch a mother struggling with her incoherent, thrashing child and see that she is staying calm, stroking his hair, saying “It’s ok sweetheart, it’s ok” over and over again but still think that it’s just a case of a child being a brat?!

The facts were: I had no food in the house, today was my only opportunity to do it and leaving it until another day simply wasn’t an option due to appointments and the like taking up the rest of the week.

I managed to get Lucas into a trolley and started whizzing around the store quickly grabbing the bare essentials and ignored the stares and scrutiny of my fellow shoppers.

I got into the cereal aisle and Lucas turned it up a notch. I caved and lifted him out of the trolley and crouched down beside him on the floor to his level and just hugged him tightly. He buried his head in my shoulder and just sobbed and sobbed and sobbed.

It was then that a wonderful young Mum with 2 little toddlers in her trolley came over and asked if she could help me in any way. I smiled and thanked her but explained that he is just having a bad day.

She said: “Does he have autism ?”

Surprised I looked at her and said: “YES! But how did you know?”

“Because I watched you wrapping him in your jacket and squeezing him and the fact that you didn’t treat it like a tantrum. Also because my best friend has an autistic child and he flaps and rocks in much the same way as your son is”.

“WOW”. I replied. And then I thanked her profusely for stopping to help and for not judging me. I told her that she is a rarity these days and that I wished more people would just come up and ask me questions rather than just assuming the worst.

Eventually he calmed and I got him into the seat in the trolley with my jacket pulled down firmly over his head playing my iphone.

And then of course someone stopped me and asked“Why are you suffocating your child under there”.

 

“He’s just hiding from rude people,  that’s all” . I answered and kept walking smiling to myself and thinking that I have definitely done the Warrior Princess proud!

***************************************

When we got home that afternoon and Lucas was in a much better frame of mind, he came up to me and said in his fragmented speech;-

“Thankyou Mum for love me always every one day. Always love forever…..you to me, that’s all.”

This was HIS way of saying: “Thank you for loving me even when I’m hard to understand”.

I mel-ted!!!

*****************************************

Mummy needs a valium.

 Righteo, I need all my ASD mum friends to tell me I’m not alone on this one because I’m completely over the drama that enfolds every morning as we get ready to leave the house.

This was how this morning unfolded…

It all started when the boys decide that it’s fun to get up before the sun does and make sure that they make as much noise as possible to ensure that the entire neighbourhood knows that they are awake.

6:15 am – I hit the snooze alarm for the  3^rd time and catch another 9 minutes sleep before dragging myself out of bed. I turn on the coffee machine and stumble over to the pantry to start making lunches.

6:24 am – I walk out to the kitchen and break up an argument over a green matchbox car. Never mind the fact that there are 2 gazillion other matchbox cars to choose from – no, they both want the GREEN one!

6:30 am –  lunchboxes packed and I move onto breakfast and ask the children what they would like only to be met with crying and moaning because Harley was in the middle of a game and didn’t welcome this distraction. He throws himself onto the rug banging his fist screaming “I’m not hungry, leave me alone”.

6:35 am – I tell him that it’s not time to play but that if he gets ready really quickly, that he can play then.

I pour out Ella’s cereal and start the bargaining process with Lucas.

He tells me he wants weetbix so I prepare it and serve it up but somewhere between pouring the milk and carrying it to the table, he changes his mind and erupts into tears and puts his head in his hands declaring that it “sucks”  and that “I’m so mean” and that he wants toast instead.

I tell him that it’s not on offer and that time is ticking so he needs to eat what is in front of him. He starts crying so I walk away and go back to convincing Harley to eat.

Harley is not in the mood for rules so he throws a toy car at me hitting me on the foot. I yelp in pain and hop over to the kitchen to continue the breakfast saga.

6:45 am – After making the decision FOR him and pouring out his gluten-free cereal, I end up sitting in between the boys and spoon feeding them one by one to ensure that they eat SOMETHING!

Bear in mind that these boys are almost 8 and 5 and WAY too old to be spoon fed.  * rolls eyes*

7 am – The boys have now wasted half an hour with silly tears and tantrums and are still only half way through their cereal and it’s time to start getting them dressed.

7:10 am – They finally finish eating a whopping 40 minutes after I first made breakfast. They both have tear stained faces and are not in the best of moods because “the rules” are coming between them and play time. I wash their faces and hands and tell them to go and get dressed into the clothes that I laid out last night.

7:15 am – I head up to the shower and instruct the boys to start getting dressed into their clothes that were neatly ironed and folded.

7:30 am – I walk out of my bedroom fully showered, dressed and my wet hair in a towel.

Ella tells me that while I was gone, all Harley did was play with his cars and that he punched her when she reminded him what he should be doing.

I walk into the family room and see Harley lying on the rug making Brmmmm noises with his cars. He has scrunched his once ironed/folded shirt into a “pond” and dive bombs trucks into it with a “shwwsiiish” sound effect. Lucas is lying next to him with HIS clothes also scrunched and has turned them into an obstacle course for the cars running them over and over them and around in circles.

7:35 am – I start to cry but realise that I still have 25 minutes before we have to be out the door so I try to keep my voice steady as I go and re-iron the now ruined shirts and instruct them both to at least put on their pants.

7:40 am – I finish ironing and walk over to hand them to the boys and notice that Lucas has at least removed his pyjama pants but is running around half naked. I tackle him and put underpants on him and throw his jeans at him telling him that he needs to put them on.

He struggles and struggles with them crying and moaning that he can’t do it and begs me to help him.

I refuse and tell him that he needs to learn to do it himself. He cries for another 20 minutes but eventually gets his entire outfit on all by himself. I cheer and give him a high five and turn my attention to his older brother who is STILL in his pyjamas playing with those stupid cars.

7:50 am  – I grab the cars and threaten to throw them all out and tell Harley that he’d better get dressed or I would take him to school in his pyjamas. (And yes, I did that once but that’s a whole other blog post!)

I hold him tightly between my thighs, standing over him and force his legs into his trackpants whilst he squirms and cries and hits me repeatedly. Next I manage to get his shirt over his head and release him to look for his socks.

Stupid move on my part!

As soon as I let him go, he high tails it to his bedroom and slams the door sitting up against it so I can’t get in. I spend 5 precious minutes coercing him out so that we could attempt to leave on time and finally I’m successful but his bedroom has paid the price.

His bedding is strewn everywhere and the contents of all his drawers are now piled up against his door so I step over them gingerly and scoop him up into my arms.

He snuggles into my shoulder and starts weeping. He tells me that he doesn’t want to go to school because it’s too hard and that he has no friends.

I start crying too. My hair is still wet and the towel has fallen off my head revealing a mass of wet, messy, stringy tendrils and I really REALLY don’t care anymore.

I carry him out to the family room and we pray together asking Jesus to give him a peaceful day and he settles a bit and looks over at Lucas who is now in tears himself because Harley is still gripping the same stupid green car….ARRRGGHHHHH!!!!

Lucas slams into my thigh and demands to be picked up too so I put Harley down and crouch down to embrace both of them at the same time.

I look at my watch and see that it’s now 8:12. We were supposed to be out the door at 8:05.

I realise that none of them have cleaned their teeth so we make it a “race” to see who can do it first. I give my hair a quick blast with the hairdryer and somehow manage to clean my own teeth at the same time.

8:18 am – we run out to the car throwing bags and lunch boxes in and I drive as fast as I can only to pull in the school car-park right as the 8:30 bell rings.

We are officially late……but we’re here.

I need a triple shot coffee with a dash of valium….

Seriously.

So….What exactly is a meltdown?

Dictionary.com defines a meltdown as: a disastrous collapse or breakdown.  

Put simply – meltdowns occur when a child is put in a situation they cannot deal with mentally, and they cannot escape that situation, so they fall apart.

Recently I was asked that exact question: What exactly is a meltdown?

So after explaining a typical Harley meltdown and emphasizing that no two children are ever going to be the same autistic or not, I decided to ask around and find out how other parents experienced meltdowns and what happens when their child becomes overloaded.

It could be something as simple and benign as a background noise that they are unable to block out like the rest of us can, maybe a smell coming from an unknown source, they are too hot or cold, they are frightened, they don’t understand what’s going on around them, they are overwhelmed both emotionally and sensory wise, there are crowds nearby, perhaps a change in routine, or maybe they are just frustrated.

These are only a handful of possible reasons and sometimes, there is no obvious trigger at all.

There are also times when it seems like my child is just being a brat because I cannot see ANYTHING that could likely have set him off, but I always tend to work backwards and think back to “before” this meltdown occurred to find important clues.

Sometimes it is just a tantrum, but mostly, it’s not.

It is important to know the difference between a tantrum and a meltdown. If you see a child older than 4 having a massive screaming fit in a supermarket or another public place – chances are the mother is dealing with a lot more than just a bratty child. Older children rarely have public displays of displeasure to this magnitude. They might whine, moan or complain loudly, they might kick trolley wheels or shelves to get their point across that they’re not happy, but they don’t throw themselves on the floor screaming and become inconsolable. They have the embarrassment factor on their side.  Autistic children often don’t.

Another indicator for me is how quickly my child can be distracted or even if they can be. A tantrum can often be dealt with by issuing a stern warning or consequence or giving in to the child’s requests. An autistic meltdown doesn’t respond to any of these things because the child is not in control of their actions and is often unaware that they are being socially inappropriate.

But, not all children respond verbally or physically when they aren’t coping – There are three main ways in which autistic children melt down.

Firstly, there is the FIGHT response (aggression, physically lashing out, becoming verbally abusive), then the FLIGHT response (escaping the scene, hiding or sometimes just emotionally and mentally “shutting down” until the event is over) and lastly, the FRIGHT response. (Think “stage fright”).

Sometimes they can experience a combination of responses and sometimes they can respond differently to how they did the last time a similar situation occurred. There are so many variants that affect the result and once again – EVERY child is different.

For example: I have written before of how very different my two boys are even though they both share the same diagnosis. One is a fighter and one is a flighter. But there have been times that Harley (our typical FIGHTER), experiences a FLIGHT or a FRIGHT reaction. It depends on so many different things.

As I wrote at the beginning of this post, I asked a few friends what a meltdown is to them.

One friend said: “My son exhibits deafening screaming, uncontrollable thrashing and a complete lack of awareness that he is even doing it. And then the shock, horror and disappointment that he feels when he finally calms down is heartbreaking to see”.

Agreed!

Harley is JUST like this. He thrashes, he kicks, he screams, he bites, he slaps and he throws- It’s like he’s having an out-of-body experience because he is completely unable to control his actions when he’s this pent-up. It can actually be quite frightening to watch. Anything or anyone is his way is fair game as far as he is concerned.

Another friend said: “The complete lack of empathy that my child has towards the person he has harmed during his meltdown is rough”.

Personally we experience more of this “lack of empathy” than the disappointment that my first friend described. But once again, it’s different for every child.

A different mother wrote: “My son screams, thrashes, kicks and punches over and over and over again. The repetition is monotonous and there is no reasoning in sight. He also doesn’t notice the victim and when he’s at his worst – he head butts and bites himself.” She then wrote that this is heartbreaking and I absolutely agree with her.

She also noted that the triggers can be really obscure and bizarre things too. Like lights reflecting on a floor or shadows chasing him.

YUP- I’ve known Harley to lose it because the colours of his socks and jocks don’t match!

The last friend that responded to this question said that a meltdown in her house begins with loss of reason and understanding. It can start small and build gradually or go from 0-60 in a heartbeat.  Her child is usually triggered by sensory overload (mine too) or being tired or confused. It can take the form of screaming, hitting, kicking or crying.

Lastly she wrote something that REALLY struck a chord with me…..she wrote:

The meltdown affects EVERYONE around us.

So very true. The child doesn’t realise but when they lose it…..we are all instantly a part of it. Because when you have a child diagnosed with autism. The whole entire family also receives that diagnosis.

Meltdowns are funny things…Because both of my boys have the “high-functioning” brand of autism, they are a little more able to display “normal” (I hate that word) behaviour in public because they know what is expected of them but the wheels fall off when they come home to their safe environment. This is where the meltdowns really get into full swing and the family get to experience true autism at it’s ugliest.

It’s the reason that a lot of my friends, acquaintances and colleagues are surprised when I explain that my latest bruise is due to another one of Harley’s meltdowns because all they ever see is the well-behaved, good mannered, quietly spoken little boy who he really is. They just don’t get to see the overloaded, not-coping, anxiety ridden boy that also lurks in there! Nope…..he saves that JUST for us

Occasionally, he will explode in public if he’s had a bad day.  For him – being at school is like a pressure cooker. The steam has to escape SOMETIME!

I have written a lot about the fight response here because that’s the one I know best. It’s the most in-your-face response and what we live with 24/7, but the other two are just as debilitating for the child and their parents.

The fright response can cause families a lot of grief because their child is in a constant state of panic. They seem to have more anxiety related sicknesses, have a lot more fear of every day things and are often difficult to teach coping techniques to.

And the flight response can be damaging too. For example: My daughter is a “Flighter”. When she’s not coping, she goes into her bedroom, climbs under her bed covers and reads a book.

Sure, it’s great not to be verbally and physically abused but she runs the very serious risk of flying under the radar while I deal with Harley’s more obvious issues!

Sometimes, she just develops a blank, expressionless face and it’s a case of “The lights are on but there’s no-one home”! This can be just as dangerous for both her AND us because she is often almost impossible to reach and she bottles things up inside of herself until it starts to fester away at her making her ill and even more confused.

I can’t say that I have the answers here. Because I don’t!   But what I have learned, is that you can’t negotiate with a meltdown.

Because: The reason that your child is melting down is because they can’t compromise and the situation is completely out of their control.

It’s all about learning to read your child, and always trying to be one step ahead of them at all times so that you can try to predict situations and outcomes before they reach crisis point. Then as they get older, we need to teach THEM to do this for themselves.

And it’s also important to teach those that teach THEM. Because once you are satisfied that your child is at least partially understood, they will sense your ease and be less likely to allow situations to frighten them.

And then, they will feel more in control and when they feel in control – anxieties and fears are allayed.

Of course, we will NEVER be able to foresee EVERYTHING that happens because life’s like that!

You never know what you’re gonna get!

Mighty, fearless mother (and occasional bandaid provider!)

Yesterday was Mr Patient’s birthday.   

Birthdays are ALWAYS interesting in this house. Harley doesn’t like it very much when other people get to open presents or have all the attention. He prefers it when all eyes are on him, but I have to say – he handled it really quite well all things considered.

Last night Mr Patient’s mum came over to mind the children because the two of us went out for dinner. I didn’t need to plan a celebratory dinner because we were already going to a work function with Mr Patient’s work colleagues.

We were picked up in style by a Cadillac and served champagne during the trip and delivered to a swanky seafood restaurant right on Sydney Harbour.

Wow!…It was breathtakingly beautiful! The food was magnificent and I had a really lovely time.

I got to dress up and play grown-ups for a whole night!

The children were ok although we did receive one phone call from our 11-year-old daughter Ella saying that Harley was distressed and wanted me to come home not long after we arrived.

But Mr Patient managed to calm the situation without too much drama and I wasn’t told about all of this until much later. (Bless him)!

We arrived home shortly after midnight and walked in to find our bed unmade and signs of a child having been there. We couldn’t find any of the kids under the blankets so we wandered out to the loungeroom and there was Harley fast asleep on the sofa with his teddy and favourite blanket wrapped around him.

My Mother-in-law informed us that she had been unable to settle him anywhere else so this was the only way that she could get him to have any sleep.

She also said that he had been standing in the toilet crying and crying saying “Only my Mummy knows if I need to vomit or not, I need her, she needs to be here”.

(This is an anxiety thing for him- the tummy usually settles after I calm him but he has a deep fear of being physically ill and if he works himself up too much – he usually is).

I walked over to him and picked him up in my arms like a baby and he briefly woke up-opened his eyes-focused on my face-and smiled a smile of relief. I whispered “It’s ok….Mummy’s home now, I’m taking you back to bed” and I felt him physically relax and he snuggled into me as I carried him back to his bedroom.

We never heard another peep from him until morning but I lay awake for a while worrying about him and asking God to show me what the heck is going on with Harley and asking Him what I can do about it?

Today has been a mixed bag of emotions. He has been irritable, unreasonable, short-tempered and teary.

I know I deserve a break occasionally and going out last night isn’t something that I regret at all – but I hate how the aftermath of him being babysat inevitably lasts for days afterwards. It makes me less likely to want to go out again.

The day(s) after really majorly suck!

Mr Patient leaves in the morning for another few days away and I have decided that when it comes to Harley, that I am going to take the path of least resistance this week and to heck with what anyone else thinks about that.

I don’t need to add to his anxiety anymore by enforcing perfect behaviour. I am refusing to conform to society’s expectations on what a child should and shouldn’t be allowed to do. I don’t particularly care if toast for all 3 meals isn’t considered nutritious and as for homework – well, I’ll play that one by ear.

I am going to create a calming, peaceful, accepting home this week and I am going to shower love down on my kids because I realised something major last night.

I realised that my kids think that I am the best kind of Mum and as far as I’m concerned – being missed is the greatest compliment they could ever give me.

The simple fact that even though I often feel like I’m treading water and desperately trying to stay afloat – that’s NOT how my kids see me. I am their hero, their fearless leader and their comfort.

I’m the one that they come to when they’re upset, hurting, happy or just in need of a kiss and a bandaid.

And I think that’s pretty awesome don’t you ?!

Have a great week all x

The pain of not knowing.

And so ends another school week.  

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

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

So …yeah….great news eh!

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

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

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

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

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

****

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

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

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

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

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

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

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

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

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

So….what to do?

I honestly don’t know right now.

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

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

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

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

Have a great weekend all…..

♡

Fi x

It’s all about the chips….

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

image from sinnatious.livejournal.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She half- smiled and thanked me again.

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

She nodded.

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

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

…..

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

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

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

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

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

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

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

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

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

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

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

……

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

He was just glad to get his chips