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.

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!

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

Fiona gets mad…

I was thinking the other day about something that kids used to say when I was at school.

It was actually quite mean now I think about it but when you’re a kid or a teenager – you don’t think too much about the impact of your words .

They used to say to people in art class – that’s not artistic, that’s more like autistic and it was used as an insult….

Ugh, I still cringe whenever I remember that, but interestingly enough, it was never something that I can recall saying myself…. Maybe I was already being prepared for what lay ahead?

It was used in the same context that kids nowadays say “retarded” or “sick”.

It was also quite common to make fun of the slow kids.

I don’t believe that my school was much different from any other schools in that respect and childhood teasing and taunting seems to part of growing up.

But what is too much….

What oversteps the boundaries of harmless fun and into the area of bullying?

When do you need to step in as a parent and what should you just leave to settle on its own?

Of course the answer to that varies between different children and circumstances but for me, anytime that one of my children is so hurt by comments that it starts to impede their home life means it is going too far.

I have mentioned before that we believe that our daughter Ella is somewhere on the spectrum and we know that she is very different to other girls her own age.

We did start to explore the diagnostic route and some professionals believe that she does in fact meet the criteria for a diagnosis. – However, we stopped going down that road on her request and we will revisit it in the future again if  the need arises.

It’s true that she may just have a lot of autistic traits but not enough to fully diagnose her, and we give her more grace than you would an NT child because we know what we see in her.

And she is a flightier –  she shuts down in times of crisis and avoids confrontation at all cost.

So she is the polar opposite of Harley!

Today at school the children were allowed to wear mufti clothes (casual) clothes if they brought a gold coin donation as a fund-raising event and my concerns were raised when Ella and I had the following conversation;

Me: “Why don’t you wear those lovely denim short-alls that we just bought you up at Grandma’s”

Ella : “ No way, they’ll make me look too fat”

Me : (incredulous as she is TINY ) “WHAT! –  You… Fat- you’ve GOT to be kidding”!!!???

Ella : (with tears welled in the corners of her eyes threatening to escape any second) ” I’m NOT wearing it Mum, I need to look thinner”

Me : “But you’ve only had them TWO WEEKS and they look fantastic on – you wore them a lot up at Grandma’s?”

Ella: “Yes, but I don’t know anyone up there who will tease me”

Me: (starting to see red) “Who is teasing you, what did they say. Did they actually call you fat?”

Ella: (tears flowing now) - “There was a book in the library about weight loss and she said that I need that because I need to lose weight”

Me: “Who is SHE? And what the hell is going on?”

Ella: (sobbing now) “* Kirsten said it, please don’t be angry with me Mummy”

Me: “Oh baby girl (putting my arm around her shoulders) – no-one is angry with you, I’m furious with *Kirsten though”.

Ella: (looking somewhat relieved) “Oh…that’s good. She said it in front of *Megan and they both laughed and whispered behind their hands”.

Me: (grabbing the phone to ring and abuse their mothers and have it out once and for all) “Baby, they are not worth it, they are just being mean girls. Stick with *Emma and *Tina, they are your true friends”

Me : “So, now, what would you like to wear instead”

Ella: “Something tight and fitting so it’s not baggy to look like fat”

****

Ladies and gentlemen…..SHE IS ONLY TEN!!!!!!!

***

And my concerns were doubled when I realised that she had refused dinner last night……and then this morning it broke my heart to watch her pick half-heartedly at her cereal and move it around the bowl with her spoon not eating it.

It’s documented that up to 23% of all girls with anorexia nervosa are later found to be exhibiting the signs of aspergers or some autism spectrum disorder .

You can read more about it here.

And even more troubling - this, article REALLY made me sit up and pay attention.

I know that this is still very early days with Ella but I’m not about to sit back and watch her get ensnared by something this awful and possibly preventable.

I’m praying ferverently about this. It is NOT going to happen in this house.

These girls at school have persistently bullied Ella for almost 7 years straight now. And this Mumma bear has had it.

So……tell me…….do you think this child is fat???!!

 

 

Playing the blame game

Well, this morning Harley woke up with a fever and a sore tummy.

Google Image

I immediately blamed myself for being an “awful mother” for not sensing this and making allowances for his shocking behaviour and mood this week.

No wonder he’s been so impossible and such a handful.

Then I remembered the meat pie that he had eaten last Friday night for dinner on our way to the Coast as there was not much of a choice of food available. And the nachos for lunch the next day as we couldn’t  find anything else even remotely gluten-free for him to eat.

The pie was no doubt full of nasty gluten and other preservatives and I know how gluten makes me feel – bloated, irritable and sick. I get cramping, I feel miserable and moody.

The poor child has developed more bowel problems lately and it’s possibly been aggravated by the food that we have fed him over this holiday.

What a shocking mother !

I know this child has communication issues at the best of times and when he’s sick he can only communicate with moaning and tantrums.

Which is what he was doing.

He often loses the ability to string two words together when he’s unwell and I misinterpreted all of this.

*sigh*

I immediately withdrew my “Mother Of The Year” nomination!

How did I miss this?

It was staring me in the face.

It was the answer that I couldn’t see because I was too close to it and my mummy vision was clouded by my anger and bitterness toward him.

He ruined our holiday and I was absolutely LIVID!

But I asked myself : How did I not notice my limp and lucid child who has been refusing food all day yesterday and this morning and connect the dots?

I have a very strong feeling that his moodiness and temper have been somehow triggered by not only the change in routine, environment and weather, but also by the changes in his diet which therefore affects his digestion, his temperament and his general well-being.

I’m still not sure whether this is all food related. He may be coming down with something nastier……time will tell.

The good news is – I’m no longer blaming myself as I received a beautiful email from a very close friend that I contacted when I found out that Harley was unwell.

She gave me a good talking to bless her!

She told me that no mother can predict everything and no mother should be expected to, particularly under such trying circumstances and that I shouldn’t keep putting myself down.

At first I closed my computer down after reading her email because I didn’t want to forgive myself.

I wanted to feel the awful guilt.

I needed it to be real.

I felt that I deserved this emotional battering for missing the vital tell tale signs that I believed mother’s should feel when their child is unwell.

But I went back and read the email again.

And I re-read it.

In fact I read it three more times until it sunk in.

I thank God for this friend.

I’m thankful for all the beautiful people that have commented on my dreary Woe-Is-Me blog posts over the past few days.

You have all touched me and helped me see sense.

***

I want to tell all of you other mothers who also struggle with the “ugly side of autism” occasionally that there is hope.

Just like so many of you told me – it DOES pass.

It’s hard enough raising these kids when they’re healthy.

We don’t need to put any extra pressure on ourselves as  mothers of ASD kids. We already have enough to deal with without beating ourselves up.

And we are soldiers.

We always prepared to fight on the front lines. We know we have no choice.

We love our kids even when they are feral and off the richter scale!

And the last line of the email made me laugh so I’m going to share it here…….

“If it makes you feel better : go and buy a thermometer and next time Harley is being vile – go check his temperature”

Dissecting the day

Well, we eventually made it safely to my mum’s but not without a serious of unfortunate events. (Of course- not much goes smoothly for the Madhouse tribe!)

Google Image

We got a reasonable distance out-of-town and I realised that I had left some things back in the unit so we had to turn the car around and go back.

The reason that we forgot things was due partly to the fact that Harley went in and out of screaming/kicking/crying fits from about 7am onwards. We finally left at 11am so by then we were already emotionally spent and our minds weren’t exactly on the car packing!

It continued to pour down with rain and any last possibility of maybe making it to the beach for a quick stroll before we headed off was quickly squashed.

Because we had lost almost a whole hour because we had to go back – we decided to grab some lunch in town instead of on the road as originally planned.

But someone forgot to warn Harley didn’t t they!

I don’t think that there was a single soul in the Shopping Centre that didn’t see Harley thrashing, punching and moaning as the rest of us tried to eat our lunch inconspicuously.

The highlight was when he got so angry that he ran straight out the doors of the food court and into the car park before running out in front of a car!!!!

And no, we didn’t receive any compassionate or understanding looks from fellow diners.

No.

We got the “bad parent” glares, the tsk tsking crowd, the parents at nearby tables shielding their own children in case they catch his bad behaviour bug and we were the centre of attention for all the rest of the shoppers who used us as their lunchtime entertainment.

By the third time that he ran away from the table after we’d chased him and wrangled him back to his seat – we let him go as we knew that he was just trying to grab attention.

After all – nothing we were doing was working anyway.

Once we finally dragged him (and yes – that’s literally DRAGGED him) back to car, we managed to finally get to the bottom of what the problem was.

Mind you – it took almost half an hour.

The problem was that he didn’t understand why he couldn’t have gone swimming in the pool at the apartments reasoning that even though it was raining it didn’t matter as he was already wet.

We tried to explain that the water wasn’t heated and that it would have been freezing cold. That and the fact that it never really occurred to us and he never ever even asked us!

We pulled out the iPhone and researched the weather reports over at  my mum’s and told him that I would take him swimming one day this week instead.

Problem solved.

He was happy, he stopped crying, stopped moaning, stopped head butting me and calmly climbed into the car and we drove for the next 4 hours without incident.

I . Don’t . Get .It . ??????

Surely ALL this can’t have been over one small misunderstanding can it?

I think it was a combination of having to go back to get the things we forgot therefore making the arrival time at Grandma’s much later mixed with the lunch at a different place and the disappointment of not being able to go swimming all tossed together to cause one big knock on domino effect.

After we arrived, he put on a good show for Mum. She is one of the very few people that he is comfortable enough with to lose it in front  of.

And lose it he did.

Bedtime was HELL. He wasn’t a happy camper and let Mum know by growling at her, moaning and punching his bed and his little brother *sigh*

Here’s hoping that he wakes up in a better frame of mind tomorrow.

I’m trying.

Really I am.

I’m doing my absolute best to make it all easier for him.

I WANT to understand. I really wish I could “get ” him more often but lately, I seem to be sucking majorly at parenting him.

Or maybe he’s just moved it all up a notch.

I need to meet him there instead.

Diving into murky waters….

OK……so maybe I really DO have a post in me after all!

Surprised? No, me either….. But just a warning…

This post may be hard for an adult with aspergers to read. It outlines my frustrations towards my child prior to diagnosis and I would hate any of you to feel that you were a burden to your own parents. That is not what I’m highlighting here. So if you decide to read on, please read this in the context that it is intended.

This post is mainly to show how far both Harley and MYSELF have come in just 2 short years.

Only read on if you can handle some very intense revelations….

********

It was the last day of term 3 for the kids today. WOOHOO!!!  But it’s still amazing to me that I even feel this excited.

Get ready……..I’m going to totally rat myself out here.

OoooooH! I hear you say!

I’m going to reveal another side of me that most of my blogging friends have never seen. And it ain’t pretty!

*Way back before Harley’s diagnosis ( * it’s a place I rarely allow myself to visit), when he was still in pre-school, I used to absolutely DREAD the school holidays. I used to arrive at school at the very last possible minute trying desperately to make the very most of my own time.

I’m going to reveal another secret here. Shhhhhh!

We actually had a name for it…..

Yep, we had things in our household that were known as HFDs.

That stood for “Harley free days“. And I craved them. They were like a drug. These were the days that I used to replenish my patience, understanding, compassion and love levels so that I could give him what he needed because he completely sucked me dry on the days that he was here….

Uh-huh. I told you it wasn’t nice.

It gets worse……

We love acronyms here.

We also had PPSH (poo-poo-schmuck head ) – unfortunately Harley was regularly referred to as this….

EWK nights, (eat without the kids – aka date night)

NAHDDs (pronounced Nards – meaning : needed a heavy drink days)

P-MITED (pronounced pee-mighted : meaning poke myself in the eye day) – in a sentence : “I had a pee-mighty day today ”

Y THIT (pronounced why-thit: meaning : You take him, I’m tired).

And it extended into food as well.

We often cooked “TM with MI” This stood for “Tuna macaroni with magic ingredients”

The “magic” ingredients were peeled and grated yellow squash and zucchini (courgette) that we disguised in the white sauce and the kids never worked out that they were eating vegetables!

BRILLIANT!

And the best thing is that to this day, none of them have figured out what it stands for so we can still cook it!!

Mr Patient and I learned to talk in this code because as worn out, frustrated and annoyed as I got with the kids – I didn’t want to come out and say it outright in front of them. I strongly believe that words have power.

Sometimes, I would only have to look at Mr Patient as he walked in the door and say “Y-Thit” and he would know what to do.

But……then after Harley got diagnosed with aspergers syndrome, I had to take a big step backwards and take a long hard look at myself and rethink, redesign, and rework my whole attitude to parenting, discipline and communication.

And I thanked God everyday for this revelation that it wasn’t our parenting that had gone awry but that it was something much bigger than us that we were dealing with.

After diagnosis, my levels of compassion rose to levels that I could never have imagined possessing before this. My patience level also climbed as did my understanding.

Unfortunately, so did my guilt, and anger. But I was angry at myself.

I felt absolutely rotten for all the times that I had screamed at Harley through tears of complete bewilderment and hopelessness.

I couldn’t stop playing the same movies in my head……the ones about spending hours putting him in time out for refusing to eat his meal because I didn’t know about food/taste/texture sensitivities.

The ones where I was screaming at him like a fish monger’s wife for not coming when I called him – I was still unaware that a child could shut down when they became overloaded in their senses.

I felt like I had left the video of me talking constantly AT HIM in a frustrated, angry and unforgiving tone on repeat and it tortured me over and over day and night.

I did have a sense as a mother that I was dealing with something bigger than just a naughty child. I KNEW that I was doing absolutely everything that I could think of or read about to try and make ground with him.

And for a while there, – I assumed that this was just a “boy thing” that I could punish out of him because Ella had been a dream baby and toddler.

So getting his diagnosis and then starting to find our place on the huge learning curve that is the autistic spectrum – I started to view him in a new light.

I’m ashamed to say that I felt like I had fallen in love with him all over again. I was seeing this child through new and completely different eyes.

My vision was no longer clouded.

I no longer craved days without him.

I didn’t require as many breaks from him anymore.

Because as I started applying techniques that I was gradually being taught by professionals to help him to function in this crazy NT dominated world, he started changing too.

He has progressed SO much that now I look forward to the holidays for many reasons.

Firstly, because I LOVE having my children around.

Secondly because I KNOW that he needs these holidays to re-group and give his brain a rest from the constant stress of daily school life.

And thirdly because I don’t want to miss a SINGLE moment of my children’s growing years.

Because before I know it……..they will be all grown up .

Exploring emotions

The madhouse is full of some very amusing episodes.

Harley's untouched meal....complete with emotions!

And what makes them even funnier is that my kids don’t realise that they are even being funny at all!

Like take last night for example:

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

Harley threw a fit.

Nothing new there, we get this about 4 nights a week. I picked up my fork and left him to it.

The other 2 kids are so used to this kind of behaviour that they also went on eating oblivious to Harley’s jumping , flailing and whining.

He calmed down a little bit and edged closer to the table to see if he could elicit some sort of reaction from me so I grabbed the tomato sauce bottle (ketchup) and made a smiley face on his plate with it .

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

But no. He wasn’t budging.

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

I assumed that his little display of displeasure was over and expected him to sit down and start eating therefore silently admitting defeat.

But I was wrong again.

He used his fork to smear out the happy face I’d made and used the BBQ sauce to make a sad face instead next to it!

Then he pushed his plate away and marched off to his bedroom.

What followed during the next ten minutes conjured up a lot of very mixed emotions in me!

I was annoyed, frustrated,proud, relieved,joyful and sad. All at once.

Harley had taken a pen and a pad of paper into his rom and had drawn a picture of himself on about 8 different pieces of paper, each with a speech bubble coming out of the mouth.

He had then written in each bubble a word and distributed these drawing throughout the house.

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

I tried REALLY hard to decipher his writing but failed miserably. (Setting him off further).

He went and hid underneath the fuse ball table for half an hour silently rocking.

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

He did.

The bubbles said “I’m angry”. “I’m sad”. “I’m hungry”. “I’m scared”. “I’m missing Daddy” etc etc.

Mr Patient has been away all week and won’t be home until Friday night. He is REALLY feeling it this time.

But what I took away from this whole experience was annoyance , sadness and frustration at not being able to understand what he was trying to tell me but also incredible joy, pride ,relief and elation at the fact that my boy has moved a huge leap closer towards being able to not only understand his emotions but also to convey them to me!

So it seems that my attempt at making him smile with the sauce actually prompted him to express what was going on inside him. The sad face that he drew back started a domino effect of emotions that just spilled out of him.

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

Oh yeah…….He had vegemite toast for dinner  in the end!

Anger – get behind me!

I thought it appropriate to use one of Harley's visual aids for emotions!

I know that anger is not always a healthy emotion.

But I think that it is an essential emotion nonetheless. Because without it, we are unable to properly express our innermost feelings and hurts, our fears and our pain.

We need to get angry at injustices served to our children, at societies ill-treatment of “different” individuals and the unfair expectations that are sometimes put on them. Because complacency achieves nothing. And as parents – we are supposed to be our child’s number one advocate.

But….(and here’s the kicker) – I don’t think that it’s healthy to “stay” angry. Because from my experience, doing that only causes more strife and friction and upsets everybody. And it’s also not a very good idea to make important decisions whilst you are angry either.

I’m writing very much from personal experience here too. Harley seems plagued by anger and rage at sometimes it’s justified, sometimes it’s not.

We are trying to teach him that being hot-headed won’t make the situation change and it definitely won’t make it easier , but it could possibly make it worse!

And I have had my fair share of anger worthy moments of late.

There was more than enough garbage going on in Harley’s school situation, to illicit some pretty fierce emotions in me but I had to calm down before I approached anyone about it.

I’ve felt a lot of anger towards parents of NT children which I know is NOT good. But if I was to be honest with myself – It’s probably more “jealously” than anger.

And sadness that is also manifesting as anger in me at the moment too.

This morning I walked out of the school yard after walking Harley into school and looked longingly over at the group of the other mothers of the children also in Harley’s year.

I knew that if I were to walk over and try to join in the conversation, that they would probably be polite and at least acknowledge me but I feel that this deep and wide ravine that is between ‘me’ and ‘them’ is getting deeper and larger all the time.

I really struggle internally to hear their stories of their grand plans for the weekend.

I  get sad when I listen to their accounts of their children’s after school activities/sports/dance classes when I know that if it wasn’t for all the therapies that are crammed into my kid’s weeks there MIGHT be a small chance of them also doing something like that . (and yes J, I will ring up about the cricket ) !!!!

And I feel like punching someone when they joke about how little Johnny/Susan had a tanty over their homework.

A little tanty? PLEASEEEEEEE. They wouldn’t know what to do if they got stuck in the middle of one of Harley’s rage outbursts! And over homework? We don’t have “little tantys”……we have full-blown meltdowns complete with the overacted emotional outbursts!

So, in reality….it’s ME that is driving the wedge between them and me.  *I* am the reason that this abyss has formed so I can’t really blame any of them. *I* am the one that avoids social gatherings and *I* am the one that has removed myself from them and all that they represent.

It’s not their fault that they just.don’t.get.it.

And to be completely truthful – before I had to deal with ASD personally – I really had no interest in learning about it either so I need to cut them some slack and realise that they all have issues of their own and their own mountains to climb.

It has helped me greatly in the past to read  The Other Mother by Darcy over at What We Need and Welcome to the club by Jess at A diary of a Mom.

I often go back and read them both and today was one of those days

After we have stripped away our anger, then we can finally put on love and self control.

Without stripping out the root cause for anger, it is like putting a coat of paint on a dirty wall. It will peel off in no time.

First strip off the dirt and then you can lay the paint right on the wall, and it will stick.

Afterwards, real healing can come when we affirm our purpose of living to do God's will, to exert self-control and to love one another.

Proverbs 14:29
“He who is slow to anger has great understanding, But he who is quick-tempered exalts folly.

Prayerfully thankful

Ok……so I spat the dummy, I ate comfort food and I sung the “woe is me” song.

Image from Google

But gradually, throughout this day I have been reminded of the things in my life that are wonderful. The things that are beautiful and the things that are true.

I also remembered some of the phrases that I have heard over the years from various places: church, my parents, friends, relatives, teachers, strangers, and also stuff that I’ve read in books.

I remembered that you never get “through” tough times by going around them or avoiding them completely. You have to actually go through them. I guess the old adage ” Character is built during the hard times of waiting” is more applicable to me now then ever!

I have always loved Joyce Meyer and distinctly remember her saying that as humans, we can either “complain and remain” (meaning staying in the pit) , or “praise and be raised” (meaning that if we focus on the good stuff in our lives and be thankful for what we DO have regardless of how things look, we will be able to rise above them.

It’s all a choice.

So far, I have chosen to moan, to groan, to allow myself to be overwhelmed and to give in to the “it’s too damn hard ” way of thinking.

And that’s ok.

Nobody can possibly be bright, cheerful, positive or “together” all of the time – we are all only human after all.

I just believe that it’s dangerous to allow yourself to “stay” in that place.

I’ve been reminding myself a lot today that our future is NOT determined by our past or our present.

And whilst right now I am sitting in the study hiding from the kids with a tension headache across my brow, and aching shoulders and neck, I know that I will not stay in this frame of mind forever.

I know that things will change. I have started the ball rolling by setting up an appointment with the right people at school and once that discussion has taken place, things will eventually start to change.

Maybe we’ll move, maybe not. Maybe the problem person will change or better still move or resign? Or maybe none of those things will happen.

All I know is that I believe in a good God with a great purpose for our lives…

And for us: ……….

Believing makes waiting more endurable.

Sometimes, society really sucks.

It’s certainly has been an interesting week here in the madhouse.

The gastro bug has been rife with more unfortunate vomit in bed issues from Lucas. *yuk*.

My claim to fame was that I hadn’t EVER been physically ill since I was 12 years old. Even with a 13 hour anaesthetic after brain surgery and  3 pregnancies, I still had my cast iron stomach intact!

In fact – my “no vomit” record was for held for 23 solid years, but sadly – due to my lovely son passing his rotten germs on, I too “caught the bug” and was slaughtered by the hideous gastro monster!

But, thankfully, it was only a 24 hour thing for me and now I’m back to feeling great

However – not so for Lucas. He is my real concern.  I’m not even entirely sure that his illness actually is due to a virus at all.

I took him to the paediatrician on Tuesday and the Doc has ordered some blood tests on him to check for an auto-immune problem as he agreed with me that it’s definitely not normal for this child to be sick as frequently as he is. He has been sick on and off since February.

And the strangest part is that his older brother Harley NEVER gets sick. He’s an enigma!

I don’t know anywhere near enough about this to make any kind of intelligent statements, but there’s a (very sound in my opinion) theory that the brain/immune system/ gut are all somehow entwined and can be part of the autism mystery.  Which sounds kooky on face value but I’ve done a bit of reading and  I have some friends whose brains I definitely will be picking as there is a lot more knowledge in them collectively than in me alone.

Anyway, I’ll cross that bridge when I’m ready to deal with it!

My Mum flew in on Thursday about lunchtime and I had only just dried my eyes from a very traumatic and demoralising “meltdown to end all meltdowns” at the local shopping centre with my charming Harley.

My daughter Ella had gone with a friend to a sketching class and I had an hour to fill in with the boys so I went over to Medicare to get my refund from both the boy’s paediatrician’s appointments the day before (and OMGosh – THAT was an expensive visit) and then headed to the supermarket to get a few essentials that we were out of.

As I rounded the corner , I saw the free playgym in the centre court that was crowded with excited kids. Harley also noticed it and  begged me to go and play (which surprised me) and I said that he could but only for 10 minutes so we’d have time to grab the groceries before leaving to collect Ella.

But what I hadn’t seen was what triggered the fit that followed.

There was a big table set up especially for the school holidays with face painting and free balloons that had a line a mile long. I estimated that it would probably take a good half an hour for us to reach the front so I steered the boys back around to the front of the gym instead.

Harley screamed “No, I want my face painted” and I tried to explain to him that we didn’t have time and then he screamed “But you lied to me, you said yes” and threw himself down on the ground and started the bottom jumping on the tiles and the swatting at my legs along with the ear-piercing squealing which of course attracted the attention of the entire shopping centre.

(on a side note – this often confuses me because this is the same child that covers his ears in noisy environments and can’t handle crowds???)

He escalated so quickly that I couldn’t make him understand that I had said yes to ‘playing’ but not the lining up for the face painting and balloons , but I think he saw it all as a package and that I was reneging on my original yes.

I had Lucas strapped in the stroller (both of the boys are shocking runners in public places and I’ve learnt from experience that I can only chase one at a time) and so I had no choice but to pick Harley up and try to steer the stroller away from the crowds so I could try to get Harley down again.

Meanwhile, time is ticking………….

Holding Harley was like  trying to wrangle an angry octopus and I literally couldn’t hold him. Especially at the same time as pushing Lucas so I had no choice but to put Harley down and get down to his level.

By now we had drawn quite a crowd of judgmental onlookers who tsk tskd and shook their heads and NOT ONCE did I get angry or raise my voice at him. I just kept stroking his hair saying “I know, it’s ok, Mummy understands”.

I thought (naively) that this would have painted the picture to the nosey onlookers that there was more going on here than meets the eye, that this was not your average run-of-the-mill tantrum.

But no……..

In the end, the ONLY thing that I could do was start to walk towards the exit, turning around every few steps to calmly call him and motion with my hand that I needed him to follow.

Thankfully he did  (begrudgingly) but I still had people glaring at that “horrible mother who’s walking off on her child”.

I.had.no.choice.

I couldn’t hold him, I couldn’t get him to walk, I had to leave right then as 15 minutes had lapsed and we had to go and collect Ella. My hands were literally tied.

But what REALLY upset me was – this meltdown continued into the car park and he would stop every few steps and throw himself down onto the concrete behind parked cars that could reverse at any time and I continually had to LEAVE the stroller with Lucas in it and go back and drag Harley another few metres and the saga would repeat.

I had hoardes of people walk past and stare at us and one lot even stepped over Harley while he was on the ground and NOT ONE of them offered to help me even though I was in obvious distress and clearly unable to handle pushing a stroller and controlling a flailing screaming 7 year old.  Some people crossed over so they didn’t have to be near us, some shook their heads but most of them just ignored us.

It made me really sad to think that this is what society has become. As if autism isn’t hard enough, many of us ASD parents have to deal with episodes like this too often.

The whole thing made me hate this city even more than I already do. I wished right then that I was living back in the country where I grew up where people actually care about their fellow humans. The place I grew up in would have had at least some one ask if I needed a hand.

But my rants about hating living here can wait for another day.

I got to the car and burst into tears. It took another 5 minutes for him to stop thrashing and put his seatbelt on and I could drive.

Once I got to the venue where Ella was, I was met by a close friend whose daughter was also at the sketching class  - She was WONDERFUL to me.

She gets it. She has 5 kids and 3 are also on the spectrum and she has endured similar incidences. I thank God for putting these people in my life at just the right moments – without them, I’d be in a far worse state!!

Having Mum here is awesome.  She handled today’s shopping centre meltdown. He attacked HER.

She’s wonderful and I’m actually relaxing and recuperating- I do believe that I can face another day!

On small step forward, ten giant steps back……

That’s how it feels today.

*sigh*

We have had one the hardest mornings that we can remember with BOTH of the boys today and it has left both Mr Patient and I completely and entirely exhausted both emotionally , physically and mentally. We have very much become Mr and Mrs IMpatient……

I have borrowed some items from Harley’s “stress kit” like squishy balls, fiddle toys and stress putty but all I want to do with them is throw them at someones head!  But I’m sure that this is not the suggested use for these.

Mind you, the day started off very nicely thank you but it went down hill quicker than I could finish my first cup of coffee…

We had been preparing Lucas for his haircut ALL week. I had taken him for walks past the salon, had shown him the wiggles cape that they would wrap around him and pointed out the booster seat that children sit in when they are getting their hair cut.

There was also a promise of Lego being bought after the haircut.

All was well this morning. During breakfast he excitedly chatted all about what was going to happen (well, ok, he babbled a lot of nonsense words) but amongst them were some recognisable ones like “Lego” (of course), “haircut “and “good boy”. So we got the general gist.

So, when we got to the salon, and sat down to wait for Lucas’ turn, I was not prepared for what followed.

When his name was called, I stood up with Lucas (he was on my lap) and started to walk over to the seat that they had prepared for him.

Cue the kicking, blood curdling screaming and the arm flapping.

He hairdresser looked at me with a questioning face and then turned to Lucas and asked him:

“What’s wrong honey, don’t you want your haircut?”

“Nooooooooooooooooooo” he screeched.

I gave her an “I’m sorry” smile and explained that he had autism and is a little frightened.

We waited another 10 minutes while she seated and started cutting another customer’s hair and by then he was (thankfully)  calm enough to take him over to his seat.

She had a portable DVD player that she set up in front of him and that seemed to take his focus long enough to get him looking less shaggy!

I paid the money for his haircut, listened to the hairdresser say to me for the 100th time “It must be SOooooooo hard for you” and got out of there as quickly as I could.

I headed straight for the food court where I met Mr Patient, Harley and Ella who had bought us all some sushi for lunch.

Lunch was great.

We all sat and chatted, admired Lucas’ hair and discussed with the children what we were doing next and how long it would take. Everyone was happy so off we headed in the direction of the nearest department store to get Lucas the Lego that he was promised.

Once inside the store, Lucas found what he wanted and we started to head for the scanner to find out how much it was as there was no price on the shelf.

Harley had also spotted a box of Star Wars Lego that he liked and showed it to me and I smiled and said “Wow, show Daddy mate”  which simply meant: “show it to Daddy”.

But Harley had interpreted that as “Show Daddy, and he will scan it, find out the price and then buy it for you”. (Stupid, stupid Stupid girl Fi!)

So once we explained that we were only buying the Lego for Lucas as he was promised it for getting his haircut and reminded Harley that he too was bought some 2 weeks ago when he had gotten his hair cut, the massive meltdown began - there was NO way that either Mr Patient or I was going to give in to that!

unfortunately, it was one of the hugest loudest and violent meltdowns that I have ever witnessed.  I could not physically restrain him. In fact, I now have extremely sore shoulders and neck from trying to. Even Mr Patient was unable to hold him still.

He did a couple of Matrix like manoeuvres and escaped us every time. It was humiliating.

We had people staring at him and at us from all corners of the stores, shaking their judgemental heads and whispering amongst themselves as he screamed his ear-piercing squeals and kicked racks of merchandise over whilst nearly tripping other people over in the process.

Every time we would get him to the front of the store so we could leave, he would escape our grasp and run back to the toy dept and grab the stupid Lego.

So what did we do?

How did we handle this?

What magical piece of advice can I offer to other stressed  out parents of aggressive ASD children when they suck every last piece of self-worth and strength out of you?

None.

That’s right. Absolutely NONE!

We bought the damn Lego, we told him he could have it when we got home if he proved to us that he could behave.

He could not.

We gave it to him in the car because we were both drained, tired and wanted the screaming to stop.

Mr Patient and I came home and both of us collapsed on the lounge and literally cried.

We cried for our lack of willpower.

We cried because of the unfairness of the whole situation.

We were angry because we felt Ella was ripped of again. She was SO good and always has been that way yet she has to live the frustration, sadness and stress that has become so much a part of raising these two boys.

So here we are. Waving the white flag saying:

WE SURRENDER!!!!!!!

Is it naughtiness or part of his autism?

This is a question that I have been asking ever since my son was diagnosed.

That and….”Does this incident need discipline or understanding?”

I’m not sure that I’ll ever be able to figure out the difference  with a 100% accuracy rate but I am starting to develop a “formula” that I can apply  to most situations through plain old trial and error.

During an episode I have to stop and consciously ask myself…”Is he distressed by his environment or just mad because he isn’t getting what he wants?”

For example.

If we were out shopping and he was coping quite well with everything , not distressed in any way and appeared relaxed and calm, then he asked me to buy him something and after I refuse – he starts jumping up and down and screaming. That’s just like any other child who doesn’t get their own way. This is a temper tantrum.

But however, if we were out shopping and  he was coping quite well and suddenly the music was turned up really loud, or there was an announcement made or a noisy group of teenagers came screaming past him riding on a trolley – and then he started to jump up and down screaming and not coping. THAT is an autistic meltdown.

But if you were a shopper who happened to turn into our aisle at that exact moment- it would appear that a 7 yr old having a fit is just a spoiled little child who isn’t getting their own way.

And that’s when it’s hard as a parent.

The judgemental looks people give you or the “advice” that some well meaning shoppers offer you are unbearable!

Once I had an elderly lady come up to me and H and say “Oh come on mum, just give him a little treat” and she winked at H.

He continued on screaming and flapping and I explained to her that this was not an every day run-of-the-mill tantrum but he was in sensory overload and was not coping.

She just smiled at me and kept walking.

There unfortunately is a very large portion of the population that are not interested in learning about autism and when you try to explain it to them, they usually either walk away like this lady did, paste a fake smile on their face and nod when you talk even though it’s obvious they have glazed over and aren’t listening or the worst one : start arguing with you or tell you to stop making excuses for your child.

I personally have had all 3 of these reactions!

It’s true that just like NT children, autistic children need to be taught manners and socially acceptable behaviour but it becomes difficult when autism and naughtiness seem to blend into each other.

I have found the hardest thing is to recognise when my son’s behaviour  is simply childish naughtiness or autistic anxiety based .

Most times , the difference is subtle, but I  need to learn to treat the behaviour differently depending on which is the underlying reason for the behaviour so my  son has consistency and doesn’t get confused.

An anxious autistic child needs to be made to feel protected, safe and understood whereas a cheeky autistic child needs to be pulled into line and get back to whatever they were doing “before the incident”.

Now, everytime my son loses it , I stop and backtrace what exactly has happened that has led him to this point.

I have to take into consideration the environment. (too noisy, strong smelling, crowded, etc) and then list off in my head all of his “known” triggers that I am aware of and piece it all together and work out what I’m dealing with.

If I have hurried him, spoken harshly to him, cut him off mid-sentence or not given him my full undivided attention when he is speaking to me- these can all provoke a meltdown.

Or sometimes it’s just as simple as his sleeve is itching his arm or he kicked his toe on the corner of the lounge, or I put a clean set of sheets on his bed without pre warning him of this!

So, it’s often quite a massive task for me to stay one step ahead of him at all times, but I’m determined to perfect it one day!

The angriest rocket.

I noticed that Harley in particular was having trouble with his temper and was getting frustrated really easily and decided to make a game out of it all and help him to discover why he has this rage and then can understand and control it better himself.

So I asked him to tell me some things that made him mad!

(click to enlarge).

I wrote them all down for him and asked him to draw me a really big rocket.

And then I asked him if he could tell me what makes a rocket explode?

Here are the reasons he gave me:

The fire is too hot,

All the other rockets are mean to him,

It’s overheating inside,

There’s too much fuel,

When it needs to be changed (?)!

And then I asked him if the rocket would feel better if he exploded or if all these things didn’t happen to the rocket in the first place.

He said that it would probably feel better if it didn’t need to explode.

Aha! Now we were getting somewhere!

I then went back to his drawing and asked him to look at the things I’d written down and tell me which one made him the maddest and so on.

And this is what we came up with.

I can’t begin to explain how much this has helped me to better understand his emotions and also to help him to know what the reasons are for his anger

I can also be better prepared and prevent possible dramas before they actually happen.

Next…..I’m trying to come up with a method of getting him to clean his room!

Mummy time……

Well after today, I wanted to just crawl up into a little ball and ask someone to be kind and kick me over the edge of a cliff.

I had a shocking morning with H and a even more dreadful afternoon with him.

But none of it was his fault at all.

It’s other people letting him down and circumstances changing and I don’t know how many times I have to keep reminding the people around him that you just CAN’T DO THAT to an autistic child!

Grrrr…….and the worst part is that no-one sees what happens after he comes home and lets it all out. It’s me that bears the brunt of all the pent up anger, emotion, anxiety and stress that has built up over the course of the day.

(Although, the teacher that had to physically pull him off me kicking and screaming this morning may disagree with that!)

I’m not going to go into details of this morning because

(a) It’s still too raw for me and

(b), I don’t think that finger pointing or name calling would actually do any good.

Basically – he was promised something that never eventuated. And I had spent ALL night last night and ALL morning this morning preparing him for the change. It’s all he talked about on the way to school. *sigh*

See- I have a neuro-typically wired brain so I can simply realise that sometimes things happen that are out of anyone’s control and life doesn’t always work out exactly how you planned.

But H has an autistic wired brain and he is completely unable to see it this way.

To him. People lied and he is angry and confused.

When I arrived to pick him up this afternoon, the conversation ( or should I say monologue ) went like this:

ME: “Hi honey, how was your day?”

H: “Hrrmmpphhhhhh”

ME: “Did (circumstance) happen or did it get changed?”

H: Throws his backpack at my chest.

ME: “Do you want me to do anything to make it better?”

H: Starts whining and kicking quietly (Can’t let the teachers or any parents see the REAL H, no- save that up for mum.)

ME: “So, I should just leave you alone then?”

H: Tries to hit his little brother with a stick.

ME: Let me know when you’re ready to talk.

By now I’ve realised the absolute futility in trying to talk to him at this point so we head for the carpark.

As we start to drive home, L (little brother) starts joining in the whining because he’s tired and missed his nap today (again).

H the explodes at L and starts flapping, rocking and moaning.

It then builds up to seat kicking, punching and screaming.

I somehow make it home and tell him to go and get ready for (TT), which is the aspergers socialising group he attends on Thursdays.

We have now reached mammoth proportions on the meltdown scale and I consider staying home and giving it a miss this week.

But there is a waiting list to get in and I don’t want  to lose my son’s place by missing too many weeks so we eventually get him in the car.

We arrive and he walks in smiling, calm and all together.

I’m furious by now. The lady running it asks me how my day  was and I hold back the tears and attempt to say “great” but she reads me like a book and everything that happened at school comes spilling out.

She was fantastic and has given me some great techniques to use for next time.

After TT we drive home and my husband is home early so I can go to the hairdressers.

He likes to treat me every 6 weeks God bless him.

As I sit at the basin chair having my hair washed and my head massaged I seriously contemplate not going home again.

I close my eyes and picture myself living in my own house – all alone, the only noise is the soft jazz music coming from my stereo. The scented vanilla candle perfuming the air and a steaming hot bubble bath waiting for me with a glass of bubbly sitting on the edge.

There is a hot dinner cooked for me by my maid. It’s all my favourite foods.

Chicken, avocado, pasta and mushrooms.

To follow there is a selection of decadent desserts to tempt me and the sound of the ocean is faint in the background.

And then the hairdresser says:

“Ok love, you can go back over to the chair now and I’ll dry your hair off”

And I’m back into stinking reality!

But who am I kidding? I love these kids, and I love my life.

Autism, meltdowns, exhaustion and all.

Rumblings, Rage and Recovery

Three R's

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Recently I went to an intensive 2 day autism workshop called Positive Partnerships. Their website is here.  Their focus is on helping parents of ASD kids form positive partnerships with their child’s school and teachers and peers.

And I learnt so many useful and amazingly wonderful things but for me personally, the 3 “R”s was the most powerful.

If you click on the above picture now to enlarge it, you will see that there is a volcano shaped graph and right at the top of it is RAGE.

On the bottom left there is RUMBLINGS and on the right is RECOVERY.

Basically this graph is showing the cycle that some ASD children go through when they are in a situation that they are not coping with.

The rumblings are different for every child. My son’s signs are , whinging, crying, clinging to me, licking his fingers, shirt or hands, rocking, covering his ears, jumping obsessively on the spot and he groans or grunts and later becomes non-verbal if it’s not sorted out straight away.

The goal is to work out your child and teach the child’s teacher what these rumblings manifest as in your child and stop them before they reach rage (also known as meltdowns).

The other major thing to note is that these rumblings can start in the classroom and they gradually escalate and the child may be able to manage them until they get into the car to go home and then the rage hits and parents are mystified as to what brought the meltdown on.

Once your teacher is aware of the warning signs or recognises the rumblings, they can then take steps to stop them before they reach rage like removing the child from the stressful situation or giving them one of their comfort or sensory toys or sending them on an errand so they can get out of the classroom and clear their head.

The white area of the graph is called the “talking zone”. This means that while the child is still in the talking zone, you can converse with them while they are rumbling and ascertain what the problem is but the danger is that if you don’t remove the child from the situation and talk to them (unless you already know what the problem is), then you miss the “window of opportunity” and it inevitably escalates to rage and you need to wait until the child comes back down the graph to the other white talking zone in “recovery.”

This is because an overly anxious child more often than not becomes non-verbal and literally CAN’T talk  OR listen when they are that far into the cycle.

The hard part is that every child is different and even when you think you have your own child worked out – there are so many  variables and the time frame for rumblings can be 2 minutes or it can be 3 hours depending on the situation and stress level of the child. The length of the rage cycle is also variable and can depend on how quickly they reached rage and if they are removed from the situation fast enough.

My sons’s teacher has not been taught this by me yet as I am still fine tuning it myself at home but already I’ve started to ask myself when things are heating up :”Is this really your mountain to die on Fi”?

or put another way :

Major on the majors and minor on the minors.

It can look to outsiders that your child is running the house (or classroom) but it’s really a case of not sweating the small stuff because in the bigger picture, it is not worth standing your ground just to prove a point over something small. Once the peace is shattered you may have a 10 minute or a 10 hour meltdown on your hands…..and what ASD parent in their right minds wants to risk that?