Is coffee really the answer?

If you read this blog regularly, you would know that coffee is one incredibly big crutch in my life. It is usually the first thing that I look for upon waking in the morning and something that I crave many MANY times throughout the day.   

Yes….I do believe that I am addicted and I also believe that it’s going to be quite a large hurdle for me to overcome but understanding the “Why” of my excess caffeine consumption may be the key to understanding my somewhat insatiable desire to pump myself full of the toxic liquid daily.

I noticed something very interesting today as I reached for my 5th cup at only 10am.

I realised that there is a very obvious link between emotions and coffee with me.  I guess you could say that it is a similar response to that of emotional eating.

I have been incredibly down for the past few days and spent a couple of hours this morning talking to Mr Patient about it. I sat with him in the sunshine on our front lawn and watched the neighbourhood children riding their scooters and bikes and kicking footballs in the cul-de-sac.

The next-door neighbours were hosting a BBQ (a frequent occurrence that we have NEVER been invited to) and had several cars in their driveway and we could hear the laughter and fun emanating from their backyard.

So….where were our children?

Inside.

With all the blinds closed and the heater on. One was on the laptop. One was on my iPad and the other was on his Nintendo DS. None of them were interested in socialising with the neighbour’s kids and none of them cared to leave the sanctuary of the house.

We realised that we were actually enabling them by allowing this to go on so we made a decision to go and turn all of them off and make them do outside to enjoy the beautiful day that God had given. The tears, tantrums and moaning started and we were told repeatedly that we were “horrible parents” and that we are “SO mean”. Harley even chipped in with “When I grow up and have kids – I’m NEVER going to be THIS awful to them!”.

Cue parental eye rolling.

Part of the conversation that I had with Mr Patient earlier included me asking him what he envisioned weekends would be like when we had a family. His response was surprisingly very similar to what mine was. It included: taking the kids to their various sporting activities, maybe going on picnics, spending it with other families or going for drives to sight see or visit friends.

But of course-our reality is VERY different.

Sure – we could do these things. We COULD arrange something fun every other weekend but we both know that whenever we have ventured out of the “norm” that we pay for it severely over the following days.

Our kids HATE socialising, we don’t have any “family friends” (meaning other families that we socialise with) – they’ve all moved away, and we are not involved in anything that could introduce us to new people therefore allowing for invitations. Sporting events usually end in tears because most ASD kids simply don’t possess the ability to handle losing. We have spent countless hours trying to teach this foreign concept to the boys with limited success because to them – failure is a blemish on their incredibly high self-standards and perfectionistic natures.

Going to church on Sundays is such a major melodrama that it hardly seems worth the hassle and the aftermath of taking our children anywhere different is always so explosive and ridiculously hard that it’s easier to just stay in our little autism bubble and keep to ourselves.

Sounds great right? Just stay home and it will all be fine and dandy?

Well – yes it’s easier on the children and causes less dramas but it’s absolutely KILLING me. I get so depressed when I hear other people recount their weekend activities to other friends and hear about the exciting things that have planned for the upcoming one.

The stories about their adventures and social gatherings that were spontaneously organised.

My weekends are always exactly the same.

Housework. Refereeing sibling arguments, housework, figuring out reasons for meltdowns, housework and trying to keep the peace amongst children that can’t seem to co-exist in the same 4 walls, and you guessed it…more housework.

Surely this isn’t as good as it gets?

Is it?

But back to the caffeine/emotions link.

This afternoon, right after we took the electronics off the children and arranged for us all to go for a walk in the sunshine, and the tears flowed and the anger surfaced – I reached for my favourite coffee mug.

As soon as that hot black strong espresso shot was making it’s way down my throat, I instantly felt the rush of adrenaline that it provided and was ready to tackle the meltdown head on.

I carried Lucas to his bedroom and Harley to his and told them both that crying wasn’t going to fix anything and that I wasn’t going to change my mind. The crying eventually subsided and they dressed themselves (well …kinda!) and as a reward for myself, I went and pushed the button on the coffee machine to deliver another shot of emotional comfort.

I was just about to put it to my lips when I suddenly remembered something that I had read years earlier. It came back to me as clear as a bell and it knocked me for six. The phrase that I had remembered related to the link between emotional eating and weight gain,:

“The worst part about emotional eating is it actually causes your problems to multiply. Eventually, instead of avoiding the issues you’re stuffing down with food, you’ve created another one altogether — weight gain, guilt about eating, worsening health … and then it starts all over again.”

I stopped dead in my tracks as I realised that I was self-medicating with caffeine. And the bigger problems that it creates are: headaches, irritability, heart palpitations, mood swings and dehydration to name just a few.

I didn’t particularly “need” that cup of coffee. Sure-I still love the taste and I do believe that I am very much addicted, but the bigger problem is that I usually just drink it to avoid dealing with what is really upsetting me at the time.

It gives me a rush of control that I desperately crave and takes my mind away from whatever drama is unfolding at the time.

I noticed that I rarely drink it when I’m home alone on Lucas’ pre-school days and I drink the most coffee before and after school and on weekends.

And what is usually the thing that upsets me is the perceived loss of “who I am” and “what I think I need to feel happy”.

The sheer stress of the constant tears, meltdowns, fighting, complaining and rigid/frantically obsessive behaviour that the boys exhibit just makes me want to poke my eyeballs out.

But of course it’s much easier to press the espresso button on the coffee machine than it is to endure the excruciating pain that one would experience with the poking out of ones eyeballs! Not to mention the inconvenience of not being able to actually SEE the melodramas unfolding

Ok….Link recognised and understanding established. I just need to figure out the best way to tackle this one.

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Oh , who am I kidding! – it’s all too hard…. now -where did I leave that damn coffee mug?…….

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!

The helpers

OK….I’ve finally done it.

I have made a commitment to Harley’s teacher that I will now be helping in the classroom every Tuesday morning first thing.

I went along last Tuesday and again this morning and so far – it has been a really positive experience!  I have a lot of reasons why I’ve decided to do this and I will explain them now because I’m sure a lot of you are remembering this post from last year where I vowed and declared that I was NEVER going to set foot in Harley’s class room  EVER again!

But you see: THIS year, he is clicking better with his teacher and THIS year, I am a lot calmer in myself. I no longer come home and cry every.single.afternoon out of sheer frustration and exhaustion. I only do it maybe 2 days a week now

No, seriously……Last year, he was in such an emotionally fragile state that me coming in to his classroom completely threw him out of routine and made the afternoons hell for both him and the other kids who had to endure the meltdowns. The teacher suffered as well I’m sure.

Another reason that I am starting this is so that Lucas can get used to the whole “sitting, listening, working quietly” thing that is a totally foreign concept to him at the moment!

It’s lovely to watch Harley take him under his wing and share his seat with his little brother and guide him gently through the classroom rules He is such a proud big brother and seeing them like this makes it hard to believe that they are the same two boys who are constantly beating the snot out of each other at home!

It has been somewhat of a concern to me that Lucas would manage to conform properly for kindergarten next year but if I can teach him and visually SHOW him what’s expected now….it might help the transition to be easier.

He follows the other children (though not really listening to the instructions) and seems excited to be included.

Harley is always thrilled whenever we are in the classroom. He sidles up to me a lot telling all the kids nearby that I am his Mum…It makes me feel all warm and fuzzy!

The beautiful teacher handed me this today….It was taken last week when we were there helping…….

It brought the biggest smile to my face

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My Ah-ha moment!

I had a real Ah-ha moment at Lucas’ early intervention program this morning.

image from hookedonhouse.com

In the parents group, we watched a Powerpoint presentation on the Sensory system.

Now – I’ve learnt a fair bit about this because Harley has been diagnosed for almost 3 years now but I’ve had to “relearn” a lot of things due to the fact that he is the polar opposite to Lucas in the way his sensory system functions.

We were shown that there are basically four categories and most of us fall into mainly one of them although it is common to have a mixture.

The first two categories are “Over” sensory groups.

The Sensory Avoider (Or the “Controller”)

These people avoid situations where there is too much noise/light/activity/strong smells and action.

They crave routine and structure and can be un-cooperative and inflexible.

They like to “control” their environments either by running away, withdrawing or completely avoiding.

I would say that my Ella is an avoider. She is not always vocal about discomfort but she definitely retreats when she’s overwhelmed.

Then there’s the Sensory Sensitive (The “Complainer”)

These people notice small details and are often bothered by subtle changes, background noises, common noises such as a toilet flushing and have difficulty participating in group activities.

They are often over-reactive and more dramatic than others and are extremely bothered by the “rules” being broken.

My Harley definitely fits into the category of Sensory Sensitive because EVERYTHING seems to set him off on a meltdown!

Mr Patient also displays a lot of Sensory Sensitive behaviour too.

Next is the two “Under” sensory groups.

The Sensory Seeker (The “Pleasure seeker”)

These people crave movement, love bright and/or flickering lights, constant activity and are very impulsive.

They prefer rough and tumble games, are generally more curious and cannot stick at any activity for very long without becoming bored.

OMGOSH!   That is SO me and also Lucas.

And lastly the Poor Registrator (“Easy going”)

These people are unaware of stimulants and are often almost lethargic in their movements.

They often have difficulty getting out-of-the-way because they are too slow.

They under register sensory wise and appear to show little emotion and can seem un-motivated.

*****

Over the past 3 years, I have learnt all I could cram in about Harley’s sensory needs. And I have gotten him to a place where I can recognise the signs of when he’s becoming too stimulated or overly hyped and know (most of the time) how to avoid this happening.  Or if it does….how to bring him down again effectively.

Basically – without actually realising it,  I was doing the exact opposite of what I would want for myself and I’ve been pretty spot on so far!

I figured out a while ago that Lucas and I were very similar sensory wise because I completely understand his desire to be constantly moving.

But this morning as I sat in this parent group that I go to every week, I had a huge light bulb moment.

We went around the circle and had to say what category we thought “we” were in and all but ME were either Sensory Avoiders (Controllers) or Sensory Sensitive (Complainers) so they all fell into the “Over” category.

I was THE ONLY ONE who is in the “Under” category. I am the only one who secretly goes freakin’ NUTS every week having to sit there for two whole hours and “appear” to be coping!

I chew gum for the whole session, frequently fiddle with my iPhone, “pretend” to be taking notes so I can doodle on paper and jiggle my legs!

I usually have to either exercise or go for a walk when I get home because I’m climbing the walls by the end.

My whole life I have struggled to sit still, stop moving, stop fidgeting and pay attention! I had teachers threaten to put me “on the roof”…( you know…Fiddler on the roof?)

Even now….anything over ten minutes long almost drives me SPARE!

And this goes for sermons at church, meetings at work, parent/teacher interviews, social gathering and meal times.

Mr Patient often frowns at me if we’re out at a restaurant because it literally makes my whole body itch if I have to sit still for too long. Car trips make me crazy, and the only jobs I actually did well at were the ones where I was allowed to move a lot during the day.

I loved waitressing, merchandising and mystery shopping but the receptionist and office jobs that I’ve had just about kill me.

NOW I KNOW WHY!!!!!

I’ve always said that Lucas and Harley present so incredibly differently with their ASDs and I can now see that although Lucas “appears” to be socially adept and “involved”….He is really just seeking the interaction, movement and sensory input that his sensory system is telling him that he needs!

He has his CATS assessment tomorrow morning. We will then know once and for all what exactly it is that we are dealing with and be able to approach it in the best possible way.

So….What category do YOU fall into?

My plan is working! …(so far)!

As I’ve written about before….One of the areas that Harley REALLY struggles with is handwriting….

It is a common problem for children on the autistic spectrum and Harley’s fine motor skills are also greatly lacking.

* This is a page from one of his most recent homework efforts:

That took him almost 2 hours every night because of the mammoth effort I had to put in just getting him to even SIT at the table!

And as for getting him to follow the instructions and write in coloured gel pen, texta or coloured pencil on Wednesdays…..FORGET ABOUT IT!

I have enough trouble already. I absolutely hate afternoons because it’s never fun fighting and fighting and fighting with your child to do something that I personally couldn’t care less whether he does it or not *sigh*.

We have the tears, the head banging on the table, the sobbing out loud, the “I cant’s” and ultimately…..a meltdown.

EVERY FREAKIN’ DAY!

So I eventually reached my limit, I cracked and decided that I had to come up with a plan because this simply couldn’t go on another minute.

I went and saw his teacher and told her that Harley has to do writing at his OT once a week and also at Social Group and I stressed that he was definitely getting enough practise and help with his handwriting. (Even though to look at it, it is hard to believe).

I got her to clarify that it was mainly the reading and spelling that they were supposed to be working on with their lists and she confirmed that yes it was.

I then asked her if it would be ok if I could try out a little something that I came up with instead as long as he learnt his words and could read and spell them.

She agreed wholeheartedly and this is the result…..

I simply attach the photographs of him making his words to his homework book and he hands that in along with his maths sheets and home reading record book.

I gotta tell you…it’s a win-win here!

It’s so wonderful when you find teachers that actually care enough to work with you and your child!

And the Madhouse has returned to (our version) of peace!

**Our version still contains random yelling, jumping, running, punching and fighting, but a lot less tears and hysteria!!

How to guarantee a meltdown in five easy steps.

This weekend, I’m really not sure what happened to us as parents!

image from inkcinct.com.au

We stuffed up big time and seemed to forget everything that we’ve ever been taught about raising children on the spectrum.

I’ve written about it below so that anyone reading this can learn from our mistakes and avoid doing EVERYTHING that we did! (Unless achieving a meltdown is your ultimate goal….then please….follow our step by step instructions of guaranteed ways to bring on a meltdown):

1. Make an impulsive decision to go out.

On Saturday morning, we decided that the house could do with a really good sorting through and a major clean out so we set to work.

We went through all of the kid’s toys and books and bundled things up into piles of “good-enough-to-sell on eBay” and “charity”. We cleaned, polished and vacuumed every surface in the house and gave our poor washing machine the biggest workout I think it’s ever had!

We accomplished quite a lot and stood back to admire our achievements before noticing that it was already 1pm and realised that none of us had eaten.

Because neither Mr Patient or I could have been bothered to make anything, he decided to all go to our local shopping centre and treat ourselves to lunch out.

2. Don’t pre-warn your autistic children of your impromptu decision.

We hurried the kids along whist dishing out quick instructions to put their shoes on and go to the garage to get in the car.

First, the tension started on the way out to the garage….the crying. The tears began because we were going in Daddy’s car not Mummy’s.  Then he wanted his BLUE booster seat not the black one, then he wanted to sit behind the driver like he ALWAYS does but Lucas was already there…..

Then it was the seatbelt was too itchy, then it was the sun in his eyes, and then Lucas looked at him funny…….and it went on and on and on for the entire 10 minute drive to the shopping centre.

He got so hysterical at one point that we actually turned the car around and went back to get his teddy bear. No sooner had we restarted the engine and reversed back down the driveway then Lucas started crying because he’d seen Harley’s teddy and now he wanted his puppy.

So back up the driveway and back inside the house to get puppy and it was now 1:20pm and all of our hunger was adding to the tension.

3. Ask your child what they want for lunch without giving them limited choices.

Yep….this one is a sure-fire way to get an overloaded child!

Mr Patient tried to divert Harley’s attention and get him to focus on what he wanted to eat instead of all the little sensory things that were tipping him over the edge.

Harley simply couldn’t cope with the prospect of having to make such a big decision (especially in his current state) so I stepped in and tried to narrow the choices down by telling him to choose between sushi or fried rice. (Because being gluten-free and refusing to eat salad kinda narrows the options down a lot!)

But that didn’t work…he wanted chips. We dug our heels in and told him that it wasn’t healthy enough and that we wanted him to have something reasonably nutritious, so the meltdown continued.

4. Add a third previously unmentioned choice into the mix.

We got inside the shopping centre and headed for the food court. The bonus was that by now, a lot of the patrons had already eaten and the food court was thankfully quiet and non-crowded.

Mr Patient asked Harley if he’d rather fruit salad and he actually agreed that he’d like it. So we took him over to the counter to order it and he burst into tears and threw himself into a puddle onto the ground weeping and rocking.

It took AGES but we got to the bottom of it…..There was rockmelon (cantaloupe) in the salad and it was TOUCHING the watermelon (shock, horror, gasp!)

UGH!

Guess what peoples?

Yep…we gave in and not only did we give him chips for lunch, but ALSO greasy chicken!

Uh-huh! We were too exhausted to fight about it at this point and I knew that taking the path of least resistance was probably the best option at this point.

5. Try to bribe your child mid-meltdown with the promise of a new toy!

Ok…..I had NOTHING to do with this one…..I’m STILL rolling my eyes at the extremely ill-thought-out idea that my darling husband had!

Harley was still sobbing and thrashing so Mr Patient (in all his infinite wisdom) told him that if he stopped crying-he would buy him a Ninjago toy.

I wanted to slap him!  I couldn’t believe that he still thought that this was a normal run-of-the-mill tantrum and that it could be resolved with bribery!

As much as I adore Mr P, he  can really be a newbie when it comes to learning how to deal with meltdowns and their triggers!

Anyway….after we’d all eaten, Harley announced that he now wanted his toy, so we started walking towards the department store but Mr Patient spotted a gaming store with a new Wii game in the window so like the gaming nerd that he is…he stopped to look at it.

Immediately, Harley ran over to the latest Sonic game and started jumping up and down on the spot begging to have this instead of a Ninjago. The problem was that is was almost 8 times the price so there was no way we would even entertain it!

(Especially since I thought the whole buying a toy idea was ridiculous anyway!)

Cue another fit. A screaming, crying, kicking, hitting, flapping full-blown fit.

Lovely. Right in full view of hoards of passers-by.

I grabbed Mr Patient and started barking at him that this was all his fault, that he should have known better than to walk into that store en-route to the department store and that I thought the whole toy-buying idea was stupid in the first place and that I couldn’t BELIEVE how misguided he was at times!

He looked at me bewildered and said that he only offered that in the first place to try to determine if the fit in the car was really a meltdown or just a silly tantrum.

His reasoning was that if it was a tantrum, it would immediately disappear the second a reward was offered because if it was a meltdown, NOTHING would pull him out of it.

Ah…now I started to see his point even though I still didn’t exactly agree.

I guess that he was partially right…. Although the meltdown did subside a little once the toy was offered….it didn’t completely disappear because the trigger for it was that too much pressure and impulsive things were put on him from the get-go.

I took Harley to a quiet place in the centre and gave him big tight squishy hugs and brought him down again to a manageable level and proceeded to find a bewildered and lost looking Mr Patient and the other kids.

We finally made it to the store and headed for the toy department with the boys running ahead of us excitedly.

We heard them before we saw them…..The loud cries and hysterics.

Yup, you guessed it!

They were sold out. What were the odds?

** Mr Patient learned a VERY valuable lesson on the weekend. He has promised to do some more reading on parenting children on the spectrum.

I’m preparing the recommended reading list now  (wink wink)!

I love you Ms Larkey!

This morning at Lucas’ early intervention group, we watched a DVD of one of Sue Larkey’s seminars.

image from suelarkey.com.au

I was the only egghead who took notes during the DVD this morning because I crave ASD info like chocolate at the moment. I believe information is POWER!

For those that aren’t familiar with Sue….you can read about this amazing woman here.

And I’m not sure if this link will work , but you can visit her on facebook here.

I have written down here the main points that resonated with me and although this is longer than my usual posts – I hope you take the time to read it because Sue is a fountain of wonderful information!

What I find fascinating about autism, is that you can never know everything there is to know about it.

There will always be new information just around the corner and often things that you’ve heard before but forgotten about are brought back to your memory when it’s triggered by another point.

And lets face it: Parenting a child on the spectrum will continue to be a learning curve forever!

In this DVD, Sue said that back in the days when we as parents went to school- the teacher would start Monday mornings by writing the date and the day on the board and asked everyone to copy it into their notebooks.

Nowadays it is a lot different.

Because nowadays the teacher will often start Monday mornings by asking the children to write a short story outlining what they did on the weekend.

Sounds easy enough right? Well, no…..not if you’re a spectrummy kid. This is a task akin to climbing Everest!

Sue said that the biggest problem in education today is that it has become too problem solving based .

She then said that these children are unable to problem solve without asking for help which most of them don’t do. (Don’t know HOW to do).

So they either become disruptive, get up and move about or sit there holding their pencil in mid air and have nothing to hand in as a result. (That’s Harley right there!)

The solution is for parents to take photos of what the children did on the weekend and send a few of them to school with them to use as visual prompts.

For example: They look at the photo of the soccer field and they are then able to write about their recent soccer game.

Or they see the photo of the park and they are then able to write a short story on the scooter riding they did on the weekend.

(This is all wonderful but I have to admit that it overwhelms me a little….there’s a lot of organisation and planning ahead that needs to be done on my part until it becomes habit!)

Sue then went onto further illustrate the importance of teaching our kids to find other ways to communicate by using the “French Patisserie” analogy.

In this analogy, she asked us to imagine that we had boarded a flight to Paris, and after we had touched down at the airport , we caught a cab into the very heart of this famous city in search of one of their much desired patisseries. But upon arriving at a patisserie, it occurred to you that you had left your purse in the taxi which was now long gone.

You didn’t speak ANY French and had absolutely NO other means of getting any Euros.

None whatsoever.

You didn’t know a single soul in Paris and you had no access to an interpreter at all. Add to that the fact that you were starving and hadn’t eaten in a couple of days.

(She also told us that we were to imagine that we were NOT allowed to use ANY gestures or facial expressions) to convey our message to the baker that you wanted one of his mouth-watering delights.

So what would you do?

* Would you try the “snatch and run” technique?

* Would you start yelling at them loudly in English HOPING that they would understand what it was that you wanted?

* Would you begin pacing up and down the shop “hoping” that someone notices and steps in on your behalf and offers you assistance.

* Or would you throw a fit because you were SO hungry and SO frustrated at the circumstances surrounding and overwhelming you that you didn’t know how else to respond?”

Wow….you can see where she was going with this!

And it’s true….I was then able to put myself in my child’s shoes and imagine how hellish and difficult their lives must be at times!

I have noticed my boys respond in all four of these ways at times and it all made me even more determined to equip my kids with all the necessary tools they need to survive!

Sue also pointed out the absolute importance of how we use our words to speak to our children.

For example: Imagine an autistic child lining up all their Thomas engines.

Now….Where is the child?

They are sitting in front of or behind the engines looking at them. They are NOT a part of this line up.

So when a teacher asks a spectrum kid to “line up” and they don’t …it’s because there was no reference made to the fact that they were supposed to be a part of this line up.  It’s rarely disobedience.

They usually stand back and watch the other kids…line up! Just as they would with the Thomas trains!

The next point was: Processing and hearing are different things.

Often our ASD kids simply cannot put high and low frequencies together.

Ie: they hear BEST when things are said in simple language with a monotone voice.

And she’s right…often when I’m frustrated with their behaviours or a situation, I will raise my voice and shriek something like: “FaroutIcan’tbelieveyouhavegoneanddoneit againwhenareyougoingtolearnit’sdisgustingandIhateit!”

And I’m met with blank stares.

But when I walk up and physically touch one of them on the arm to get their attention and say in a calm, steady monotone voice:

“Would you please stop blowing bubbles in your drink. Thank you”. I get instant results.

Interesting hey!

Another tip is to make sure that you use their name in the sentence because often our kids won’t realise that the request is for them as well if it’s said in a generalised form.

ie : In a classroom setting, if the teacher was to say:

“Alright everyone, after lunch it’s library time so make sure you have your library bags ready to go as soon as we come back after the bell” our kids would likely not hear the request or know it was also intended for them and end up in trouble because they appear to be disobeying the command or not complying.

Instead, the request should go something like this:

“Alright everyone, after lunch it’s library time so make sure you have your library bags ready to go as soon as we come back after the bell”.

“Harley (waits for him to look up) please get your library bag ready now”.

And it wouldn’t matter if the general request went over his head because he would be receiving the small part of information that he required to complete the task.

Is anyone else having light bulb moments here too?

There are three more quick points that really stuck out at me so I’m sorry if this post is too long but I really lapped this up and I wanted to share it!

Firstly: If your child needs to wait, then this causes anxiety more often than not.

Solution…..give them something to hold. This object then becomes their focus NOT the fact that they are waiting.  And try to keep waiting periods to a minimum because anxiety increases the longer they need to wait.

Secondly: These kids communicate better during movement.

We all know by now that asking your child to “look you in the eye” causes them to shut down their processing as looking in the eyes renders them unable to listen at the same time, so allow them to look “in your direction” but not at you. And MOVEMENT is the key:

Walking and talking at the same time is brilliant for these kids.

The sensory input they are gaining opens up a part of their brains that then allow them to  process what you are actually saying.

If you make them stand still and look at you, you will only get stock standard answers…..ie : “I forget”, “I didn’t do it” and “ I don’t know”.

And lastly: The myth that we shouldn’t still be providing visuals for our kids when they reach high school.

Not true.

She explains this brilliantly by asking us to imagine a child in a wheelchair….

Now…when that child starts kindergarten, what will they need to access the school grounds? A ramp.

And when they start secondary school will they still need a ramp?

And yes definitely for college or university.

The circumstances change ie: In kindergarten, the mother would most likely push the wheelchair into school for them and pack their school bag and hang it on the back of the chair.

In Secondary school, they would probably be then able to wheel themselves up the ramp having packed their own bag and by college, they would now be possibly even able to manage a few small stairs.

But the fact remains that they will ALWAYS need a wheelchair and that won’t change.

Just like our kids…..they will learn coping techniques, survival strategies and self regulatory inconspicuous movements but they will STILL HAVE AN ASD!!!!

So for a high school teacher to look at one of our kids and say “He looks fine to me, he won’t need visual reminders or verbal instructions” is like telling the child in the wheelchair to stop being an attention seeker and forcing them to get up out of the wheelchair and walk!

(the room was filled with gasps then!)

Please let me know if this helped anyone. We will be watching the rest of the DVD another day and I’m happy to be the little dork and take notes again!

Pay it forward…..

I hated today.

Well, not all of it, but a huge part of it.

The day started badly with the kids fighting before I even made breakfast and this ALWAYS starts Harley off in the wrong frame of mind.

I seriously can’t believe the things that my kids sometimes choose to fight over. Does it really matter who gets the blue bowl? (That was a rhetorical question…….of COURSE it matters!)

Also, Mr Patient had a late start for work and was still here all morning. He told the kids he was going to take them to school as a surprise!

Sounds nice right? Like a real treat for them?

Well, yeah, if your kids are typical and can cope with change…

Usually, he’s well and truly gone before the rest of us are even awake so just having him still here threw them from the get-go let alone the new transport plans!

**

I did however have a day to myself because it was one of Lucas’ pre-school days, and I got a lot of things done.

**

This afternoon when I picked Harley up from school, I only had to look at him and I knew what was coming.  He was absolutely riddled with anxiety…..The telltale vacant scared eyes, the drooping head, the downturned lips, the deliberate shoulder hunch and his toes kicking the ground forcefully.

Once we were away from his teacher and most of the other kids, he threw himself down on the grassed area out the front and rocked and cried and moaned hugging his knees to his chest.

My baby was broken and I still have no idea what happened.

I sat down beside him on the grass and put my hand his leg to let him know that I was there.  I knew that I couldn’t talk to him.

He wasn’t present anyway.I felt so helpless and useless.

It was almost like he was in a mixed state of flight AND fright if that’s even possible!

After sitting next to him for a while watching the tears gradually lessen and his contorted frown ease, I convinced him to come over to the car with me.

He only got 3 steps closer before collapsing to the ground again in a blob of tears so I picked up my 21 kilo child and carried him instead.

It took me several attempts to leave because every time I would do up his seatbelt, he would quickly undo it and climb out of the car and run away and it took me almost half an hour to finally leave the school today.

Afterwards, I was so drained, so emotionally exhausted and so frustrated that I got home and actually shut down myself.  I settled Harley on the sofa with his teddy and a DVD then locked myself in my bedroom and cried for nearly an hour.

I HATED not being able to get through to my child. I felt like a failure and completely fragile!

THIS is the part of autism that I really really hate. I can’t stand seeing him robbed of the basic ability to function and communicate. It sucks.

Homework was left undone, dinner was full of more tears and getting him to bed tonight was a nightmare!

He’s only been in his room for a few minutes when he walked out and said to me “Mummy, my brain is going too fast and my eyes won’t close”.

Ugh!

But then…..tonight as I was cleaning up and doing a last minute check in bags that I’ve packed everything I’ll need for tomorrow, I noticed that there was a new message flashing on my mobile phone.

It was from another mother at the kids school. We don’t have kids in the same grades but we have become great friends and her lovely 3 kids are all typical and thriving. We have nothing in common as she’s still in the baby stage but we get on fantastically!

Her message was this:    

Fi, you’re a lovely mum, I watched you this afternoon with Harley.

You were so calm, I’d flip out not knowing what to do if that were my child.

Well done, love *Julie xx

And instantly my spirits were lifted.

I’ll make a point of telling Julie tomorrow what an amazing gift she gave me tonight by sending that. Because of her little gesture, I am now able to face tomorrow with a renewed energy and a heart full of thankfulness and joy.

So pay it forward people……. If you see a Mum struggling, tell her how wonderful you think she is.

You never know….might be instrumental in enabling her to keep on putting one foot in front of the other!

* Not her real name…..

Alright, fasten your seatbelts : I'm going out on a limb!

Right. 

I’m stepping out onto a very risky limb here, but it’s something that’s been playing on my mind quite a lot lately, and I really feel the need to write this down.

I really hope I don’t scare you all off and you come back after this…..?

Anyone who has been reading this blog for a while will have already have picked up that there are two main themes running throughout my life.

1. I’m a God believing Christian.

2. Autism. It’s all around me, and it’s such a part of my everyday life that it’s sometimes all consuming. So it’s stand to reason that often these 2 major parts of my life are bound to meet and cross over at some point.

And they do exactly that every.single.day!

Now…..before you click away from here – I’ll first point out that the sole purpose of my blog is a personal journal and learning space that I use as therapy and to help me to work through my own life experiences living with autistic children.

It’s not and never will be intended to be used as a preaching platform.   Whilst I don’t hide behind my beliefs – I have another blog that I use specifically for my “Christian stuff”.

This is my “autism blog” (for lack of a better description) and what I’m writing about next, is all about what I’ve learned and discovered since my boys were first diagnosed with autism. I have learnt a LOT about myself and my own personal beliefs along this journey too.

***

There is a group of well-meaning Christians that have the views and attitude that AUTISM MUST BE HEALED!

And you know what?…… I’ll let you in on a little secret……I was once one of them.

(Shock , horror, gasp!)

Yes. I took Harley to a number of healing ministries and prayer groups to get him “healed of autism”. I desperately wanted him to be like “everyone else”.

I believed what people told me that he was “afflicted” and “broken” and “in need of deliverance”.

Frankly….I’m now disgusted in myself that I was so narrow minded and naive!

Yes, I do believe that God CAN heal autism…..but I am no longer subscribing to that school of thought. I now see that trying to remove autism from a person is like trying to remove freckles.

They are part of what makes that person unique, and special and “who they really are”. To remove autism, you are essentially removing the very essence of what makes them “them”.

I no longer believe autism to be a sickness, a disease, a defect or a design fault.

It’s just “different”.  Not wrong. Different.

God doesn’t need to heal my boys of autism, *I* need to learn how to be their mother and cherish them for who they are and accept that autism is part of WHO THEY ARE!

Don’t get me wrong though……if I could snap my fingers and only remove the parts that make their lives so.darn.hard….I would.

But it’s just not that simple.

Because to remove autism….you would also be removing their character, personality, adorable quirks and nuances that make them unique and wonderful.

You all know that autism is not a learnt behaviour. It is intricate wiring, programming and a marvellous design that is so darn special so why would I want to take that away?

As soon as I shifted my focus onto celebrating their uniqueness and individuality and stopped focusing on all the “woe-is-me-my-life-is-so-darn-hard” rubbish, I was then able to move on to a much better place of peace, contentment , and developed a much deeper and compassionate love for them than I had ever thought was possible!

Today, I remembered a post that I wrote not long after I first started blogging called “What-if?” and after re-reading it, I realised that God was already preparing me for changing my way of thinking even way back then.

Here it is……

What if…….. one morning, I was to wake up and find my children had been completely “cured” of autism?

What if……..all the special little idiosyncrasies that defined them disappeared as well?

What if……..they were suddenly able to start and continue meaningful conversations with people?

What if……..they realised that they could read my facial expressions?

What if……..they were now able to self regulate and no longer had the urge to stim?

What if……..school work suddenly became manageable and they could understand it easily?

What if………I never had to draw cartoons on a whiteboard again?

What if……..a trip to the shops was as simple as in – pay – leave?

What if……..you could go to any noisy place without earphones and a quick escape plan?

What if……..a crowded cinema with bright lights wasn’t something you needed to be tentative about?

What if……I was able to throw away all the sensory toys that are used to calm or stimulate my child?

What if……..they were able to control themselves in difficult situations and deal with their emotions without becoming overwhelmed?

I’m not sure that if that was offered to me , I’d take it…………..

You see…….

I love that my children are special.

I love that they are unique.

I love that they are quirky.

I love that they are kind, compassionate and gentle beings,

And I love that they are individuals.

To take autism away, you’d also take away the essential parts of them that make them who they are.

They were perfectly formed by a perfect God.

They are a blessing and a joy.

They are just the way they are meant to be and I am just the
mother they need.

***

So….is anyone brave enough to comment or have I crossed too many lines?  LOL

Blog gems….holidays.

Today over at  Jen’s blog gems, the topic is:  Holidays.

Tell us about a holiday, any kind of holiday even just a weekend away, vacation or any few hours to yourself that are not your normal routine…

You can read about my disaster holiday *here*.

 

 

I’ve fixed the problem with the link………

Saying "Pfft" to society and it's rules!

Well…..it’s only Tuesday and already, I feel like I have completed a whole entire weeks worth of busyness!

google image

I’ve written before that I tend to survive on very little sleep and a lot of caffeine, and yes, I am aware that it’s not good to pump myself with as much coffee as I do, but for now…..I’m only jumping one hurdle at a time.

See, here’s how I look at it:

Raising kids is HARD WORK! And raising special needs kids is an extra challenge thrown into the mix. And I have previously failed at giving up caffeine and I have decided that it’s pointless trying to do this until I am ready.

And I’m not ready

Plus. a lot of my tiredness is my purely my own fault. Often I go to bed far too late therefore not giving my body a chance to wind down properly.

But the reason for this is simple. After the children are in bed….this is MY time.

If I go to bed too early, I have less time to myself and I wake up being “Mum” again and everybody wants a piece of me!

And that really really sucks!

**

google image

I’m always hearing or reading that when you have special needs kids (particularly with autism) the children benefit from having a structured, organised and calm environment.

Anyone wanna tell that to my kids? They are the ones who damage the calm!

By nature, I am a fly by the seat of my pants type person. I’m very impulsive and like to make it all up as I go along.

I have had to learn to change in some areas to create an environment more conducive to helping the behaviour(s) of my children.

And it’s been REALLY hard. It’s been a real sacrifice to have to lay the natural tendencies that I have aside and force myself to become more organised and level.

I’ve had a lot of professionals tell me to start by writing lists.

But whenever I have done that, I end up mad at myself because I didn’t get even HALF of the things done that I should have.

And that’s why I don’t write them anymore. It’s too depressing!

I’m much better now at writing social stories, verbally preparing the kids and packing our own food for places where G/F is not an option ,but as for lists – nope.

I sometimes overdo things in the hope that I will get better results and I sometimes forget important things because I have put too much focus into another area that didn’t necessarily need it. But the important thing is that I’m trying.

And life is all about living and learning. It’s all about trying things until you find what works for you and your family.

I’ve tried to copy what works for other autism families and everything has come unraveled because my children are different to theirs,  I am different and Mr Patient is also different.

Circumstances change and so then must your flexibility.

I now take pieces of ideas from other people and mold them into something that will work for us.

As soon as I stopped comparing myself to other families and realised that it’s ok to have our own ways – things became MUCH easier!

And as mothers there is already way too much pressure on us to be everything to everyone. It’s not physically possible – yet we beat ourselves up trying to do it all anyway!

I’m also finally learning that it’s ok to be exhausted.

It’s ok to let your guard down to close friends and family that you trust and to say “Pfft’ to society’s ideals that we should put on a “everything’s fine “ face all of the time.

It’s just all too tiring!

google image

I had a “phone a friend” incident myself just today-and it was just perfect.

She told me to get over myself and realise how far I’ve come since diagnoses and how much I am doing and to take my eyes off what I am yet to achieve.

Not sure if anyone else needed to hear that. But I sure did!

Explanation??

OK  

Google Image

.

I’m confused.

I mean REALLY confused.

Last night, I threw out all the visual cards in absolute disgust.

I figured that they were absolutely useless in this house. And you know what?

We had an absolutely AWESOME day!

It was SO different to “normal” routine too.

 The kids and I drove for an hour and a half North to meet my mum and my sister’s two daughters at a shopping centre that is halfway between here and her place.

My sister is working and Mum is staying at her house to mind the girls during the holidays.

I had a (wait for it…) SILENT car trip up there?

HUH? I could hardly believe that these were MY kids!

And the four hours that we were there in that noisy, crowded and busy shopping centre were an absolute pleasure!

Strange…..

At lunchtime, we sat in the food-court and halfway through our meal, a dance troupe started performing a half hour of dance routines with LOUD music RIGHT NEXT TO OUR TABLE!!

There were even tap dancer with their loud tappety tappety tap shoes banging on the stage.

And you know what?

Harley and Lucas turned their chairs around and watched it ALL.

NO visual cards to prepare them for this spontaneous event, NO forewarning about the entire day  and it was so damn noisy that I kept nervously looking at both mum and the boys ready for a meltdown to occur.

It never did!

After lunch the kids played in the play centre there and when it was time to leave, everybody hugged and kissed and the kids hopped back into the car for another PEACEFUL drive home!

We got stuck in road works and it took us almost 2 hours but still. PEACE!

I just don’t get it?

What really surprised me was that everyone that commented on yesterday’s post Visual Pfft all said that visuals don’t work for themand their children either.

And a couple of you actually said that the days that you DON’T plan are the ones that go the best of all??

I’ve had it drummed into me continually and read it in a lot of aspergers info that children with ASDs need visual aids to reduce anxiety and help them to feel more in control.

So why then do most parent’s find the opposite?

Is this just a big farce developed to create MORE stress in us parents who already walk a fine line?

Or is someone going to write to me and suggest that maybe I haven’t implemented these visual cards properly?

If you are – then kindly send that thought to ALL the people that commented and tell them that they are wrong too. Thx

In case you’re wondering, the visuals I made for our upcoming beach holiday on Friday have been filed away under “USELESS” for now.

I might take them, I might not.

I’ve quickly realised today that -just when you think you have aspergers figured out , it comes up and bites you on the butt and you realise that you know NOTHING!!!

And whilst I am SO thankful for a smooth and event free ENJOYABLE day and don’t really want to be a negative Nelly -  I am feeling a little uneasy.

When you’re parenting a child(ren) with and ASD, you never ever know what’s coming next….

Counting down the days……

This is going to be a very full week!

On Friday we are going here:

Jealous?

I think that it is one of the most beautiful beaches on the Australian East Coast.

The kids are SO excited.

Here’s another:  

But as al you ASD mum’s will know, it’s not just a matter of jumping in the car and driving….OH NO!

I spent the better half of today googling images of everything that I could think of to make up a “What’s happening each day” chart.

It is complete with images of the unit we are staying in, where we are stopping for lunch on the way, the length of the trip (shown on clock faces), what the pool at our unit looks like, the shopping centre we will have to go to buy food etc etc etc,

I also whiled away another couple of hours also on google images getting pictures of everything from tractors to a red car, to cows, to trains , to a blue car to a service station to make each child a “bingo” card that they can stick stars on as they spot them. Hopefully, that combined with the Nintendo DSs and the DVD player will make the 5 hour drive bearable!

I was chatting to Mr Patient and we were reminiscing about the first trip we took together not long after we were married.

We took a small overnight bag each, a shared swimming bag and the clothes on our backs and even he was also pretty spontaneous back then, we just up and went!

Now: we need to spend a week preparing the children, a day making up visual charts and reminders so that they will cope and I will spend hours the morning we leave making sure that every.last.possible.hurdle is predicted and a solution is put in place.

THEN

NOW!

I  admit that I seriously wondered whether we should just save all the hassle and stay home…..?

Here’s the kicker though…..

Ready……

We are only going for THREE DAYS!!!

Hmmm!

Mid year Marvels

Well, my lovely children let me sleep in until 10:15 this morning *gasp*.

While I’m grateful to not be woken by a sharp slap to the face, I am SO far behind the 8 ball today, I feel like I am hours behind schedule (whatever THAT means)!

But never mind…….the ironing will still be there this afternoon, as will the vacuuming, mopping and bed making

I announced to the children that today was a “do whatever you like, stay at home day” and it was met with delighted cheers and clapping and happy jumping on the spot. So I think that was the right decision!

Currently, I have one watching TV, one playing Thomas engines in his room ( well, more like arranging engines into colour groups) and one reading a book so I grabbed the opportunity to catch up on reading my friends blogs (and updating mine!)

As my good friend Livian over at “Our Crazy Life” pointed out to me, it seems that when one of us in ASD parents land have a bad day (or week) it seems that a whole lot of us also do.

I wondered about that and my theory is that it’s the middle of the year – we’ve reached the halfway point in schooling, the emotions and stress of the first half of the year are catching up as we prepare for the 2nd half of the year and wonder what’s in store for our families.

And also as we pump ourselves up and self motivate with the “come – on, you can do it!” monologues that we all know SO well.

I know personally that I have been a lot more stressed than I realised as I looked down at the fingernails that I had done recently, and discovered that I had unknowingly chewed off the acrylic nails and then bitten my own nails underneath right down to the cuticles.

Hmmmmm, not good. I spent last night attaching new false nails to cover my sins!

For me, these end of term 2 July holidays have always been about allowing my kids to “wind down” and regroup for terms 3 and 4 and whatever the rest of the year has in store for them.

It’s also an important time for me to relax and sit back and revel in the progress and achievements that the kids have made so far.

And I forced myself to actually think about and focus on the “good” and “positive” advances thus far.

I’m calling it : TEN MID -YEAR  REASONS TO CELEBRATE

1. The remarkable effects of removing gluten and dairy from the children’s diets, and the new found ability for Harley to verbalise his feelings even in the heart of meltdowns
2. Harley FINALLY being moved into the class that he should have been in from the start even though it took a LOT of work for this to eventuate!
3. The massive change in Harley’s attitude to learning, and to school in general since the class move. And also the peace and contentment that is SO evident in him now
4. Harley’s new teacher being caring, and actually wanting to help him, and having a compassionate heart towards children with ASDs
5. The new friendship that has formed with Ella and her new BFF *Emma
6. Finally getting a health professional to actually listen to and believe me and help me to start the process to getting Ella diagnosed
7. Ella’s breakthrough in getting her emotions OUT and not bottling them all up until she implodes!
8. The fact that 70% of the time, I can actually understand what Lucas is actually saying to me
9. Lucas finally being accepted into an early intervention program
10. Getting all 3 children to eat new foods and try new things without gagging!

So , when I sit back and look at the list, I can clearly see that even though there have been some REALLY tough times of late – I need to make myself remember the small steps forward that we have made.

C'mon mum, get it together!

Well, today was the final day of term 2 for the children and they are now officially on holidays for just over a fortnight. We sometimes go up to my mum’s in the July break but this time we have decided to stay home with my mum coming to visit us here at the end of next week for 10 days.

During the 10 days of mum’s visit, Lucas turns 4, I turn 35 and Harley turns 7. In that order so there a lot to celebrate in the Madhouse in the coming weeks.

I haven’t had time to get ready for birthdays so I spent yesterday at the K-mart toy sale trying desperately to figure what to buy the boys for their presents but I ended up finding some really great things that I think they’ll love.

And then this afternoon , the boys were R-O-T-T-E-N making me feel like returning every single gift one by one!

But I knew that they were just more than ready for a break. This has been one of the longest terms they’ve ever had and I think that even the NT kids at school have struggled to stay focused this long.

I wanted to try to ease them gently into the weekend so I tried the Friday afternoon movie on the lounge trick again but this time, it failed dismally.

They couldn’t agree on a movie, they didn’t like what I gave them to eat, the boys got smacked for using the lounge as a trampoline FAR too many times, they kicked each other, threw pillows at each others heads and just generally let off steam.

After dinner, while we were still sitting at the table, Harley asked me what the “exact agenda” is for tomorrow and what “activities” I have planned for this week!

Sheesh! – *I* don’t even know that yet!

I was kinda hoping to do a whole lotta nothing and just sleep in and relax a lot……….but who am I kidding!? I have kids with autism.

These kids need STRUCTURE – They want ROUTINE – They want to see GAME PLANS, and they need to know them NOW!

Bleugh,

It looks like there will be several trips to the library, several trips to the park, several trips to the craft store and MESS all over my perfect, spotlessly clean display home. ( Ok, even I admit that is a stretch!)

But my point is…..I know that if I put myself out a little and get my act together and make plans and stick to them, structure the days, and get a little more organised, the 2 weeks will be happier, run smoother and be much less stressful for all of us.

Now………..where did I put their library cards?

And has anyone seen where my motivation is hiding?

When it all goes well..

Yesterday the children had “Mission’s Day” at school to raise money for the annual trip to China that some of the senior school students and some teachers make to support an orphanage there.

The children were allowed to wear mufti clothes and do to this it was a gold coin donation. (Australia has a gold coin for $1 and $2 instead of notes).

The kids only had 2 or 3 quick lessons in the morning before an assembly was called and then the festivities began around 12.

Then there were stalls set up all around middle school selling everything from cupcakes and lollies (donated by parents) to key chains and jewellery.

They had face painting, coloured hairspray and a sausage sizzle.

I took along some lamingtons and added them to the tables and tables of delicacies.

Lamington (image from Wikipedia)

It was all very well to have these amazing cakes, lollies (candy) and sausage sizzles, but I had to go and spend an extra $30 at the supermarket to buy my own gluten-free lamingtons, cupcakes and meat pies so that myself and the children could actually eat, and I know that other gluten-free families had to do the same.

Meat Pie (image from Wikipedia)

Oh well…….it’s all for the greater good

(Gosh- it has been quite an introduction to Aussie cuisine this morning hasn’t it!)

Anyway, there were a group of year 12 students running a car wash (yes, in the middle of winter?) and another group had formed a “band’ (I use this term loosely) that were playing a whole lotta noise WAY too loud , it was impossible to hold a normal conversation in the middle school area. (Gosh, I’m sounding old!)

I have now set the scene to paint the picture for how an autistic child with sensitivities to noise, crowds and action and an absolute NEED for routine and structure would cope.

And here’s the amazing bit………..he did REALLY well!

I was prepared to have to whisk him away at short notice if needed but no such occasion arose!

Sure - he walked around with his headphones on, and he had me there holding his hand when we did venture into the noisy part to get his hair sprayed and we had a picnic rug set up in the sun on the hill WELL away from the noise (with another aspie family) that he could escape back to, but still. I am SO proud of him!

Lucas however being the type of child that thrives on noise, crowds and action was a little overwhelmed by all the people towering over him and I caught him covering his ears a couple of times.

And we had to send a search party out for him twice because he did his usual trick of absconding, but nevertheless all was well.

But then it came time to leave.

I had Ella disappear in one direction, Lucas another and Harley stressing because he couldn’t find Lucas.

Once I had managed to get all 3 of them in the one place – we started walking out to the car. And that’s when the barriers started coming down.

Thankfully – I sensed how close to the edge the boys were in enough time to do something about it so I let them have a run around on the oval out the front of the school for about 45 minutes and they were able to get it all out of their systems.

And so ends another successful “out of routine” day at school. And I am smiling and in one piece emotionally and mentally and that’s GOT to be a good thing

Lucas' hair

Ella's hair

It's what people "don't" see that causes most of my stress!

Well…..Today, Harley has a school excursion.

The permission slip that came home last week had in big bold print :

Dear Parents. Please note: BUS LEAVES AT 8:15 SHARP!

PLEASE MAKE SURE THAT YOU ARE THERE BETWEEN 8 and 8:15 THANK YOU!

(school usually begins at 8:30 so it’s not too much earlier).

And so it was.

Last night, we talked to Harley about the excursion as we had been doing all week to prepare him for the “change” in routine.

He has asked a gazillion questions since and we were pretty sure that we had everything covered.

We put him to bed last night at 7:30pm as usual and went back out into the living room to watch a bit of TV and wind down from the day.

Not even 2 minutes later- Harley appears clutching Bo. (His teddy).

He informs us that he can’t sleep so I walk him back to his room, tuck him back in and tell him read for a little while until he is tired. (Even though Mr Patient and I have already read him 2 books each).

10 minutes later he comes back out to tell us that he’s finished reading and can’t stop thinking about the excursion tomorrow.

Mr Patient walks him back and tells him to dream about what he think they may play on the bus trip going there and prays a “Dear God, please help Harley to fall asleep” prayer.

And he heads back out to the lounge.

Before Mr Patient had even sat down again- Harley reappears for the third time.

This appearing every 20-30 minutes continued through the night for the next TEN hours. And that is NO exaggeration.

To say that this child has sleeping issues is a vast understatement!

By about the 4am visit (where we were ready to lock him in the garage) and after we had resettled Lucas THREE times- we told him that if he didn’t go to sleep , he would have to go and sit in the principal’s office all day and would miss out on the excursion altogether.

How many of you can guess what happened next?

Yup. that’s right. HYSTERICS!!!!!

We had screaming, crying, kicking, hitting, thrashing, flapping, jumping, head banging- THE WORKS!

Just what every parent wants to deal with at FOUR O’CLOCK IN THE MORNING!

Roll around 7 am and we drag him out of bed after having only had a couple of 10-15 minutes snoozes and he sits at the breakfast table rubbing his eyes and complaining that they were itchy.

Ah…..duh….that’s because YOUR’E FREAKIN’ TIRED MATE!!!!!!

He looks at me with his gorgeous big brown eyes and says: “Mum, I need you to be sorry to me“

I sighed and then apologised (grudgingly)  and asked him why he wouldn’t sleep last night.

His answer surprised me but at the same time I felt like a complete idiot for not working this one out myself.

“I didn’t want to be late and  miss the bus Mum.”

We arrived at school in plenty of time. 8:05 to be exact. And Harley climbed out of the car with Bo under his arm.

I suggested that he leave Bo in the car so he wouldn’t get lost or dirty. Cue the meltdown.

But……the little “cherub” decided that he would climb back into the car for this fit so no-one could see it and therefore make mummy into a liar if she dared to tell anyone about it.

He finished his little hissy in record time and then walked over as happy as Larry and lined up with the rest of the children smiling, laughing and comparing lunches so that no-one would believe that there was anything unusual at all about this morning for him or me.

AAAAHHHHHHHHH!!!!!!!!!!!

Can’t WAIT to see how he is this afternoon. (Yes, that’s laced with sarcasm!)

And now that it’s off my chest……I’m fine

Oh….and Tuesday 13th July is his appointment with the paediatrician.

I’m gonna get that damn Melatonin no matter WHAT!

Holiday exhaustion!

I was listening to the radio in the car this morning as I drove home from doing the grocery shopping.

Then when the song finished and they went to an ad break, a lady with a voice that was far too chirpy for my liking came on.

She was advertising a Queensland getaway that is “filled with fun” for the whole family.

The opening statement to the ad went like this:

“All families LOVE going on family holidays together, it’s the highlight of any family’s year……It’s the time of year where you all bond and enjoy common interests and bask in each others company…….”

It was too much for me.

I’m sorry ……WHAT?????

She mustn’t have been including ASD families in that generalisation or at least my family!

Don’t get me wrong…….My mum comes with us each year for our family trip to Queensland as we just did last month and we DID have a wonderful time.

She is not only an extra pair of hands and evens out the parent/child ratio, she understands my children and has a sound knowledge of ASD’s herself. She has friends with ASD children and since my children have been diagnosed, she has taken an active interest in learning more about it all.

But that’s not my point here.

She will attest that in order for us to even have a family holiday where we don’t all end up going clinically insane, there is a heck of a lot of forward planning that goes into these trips.

The kids at Movieworld

And that’s for EVERYTHING!

Every. last. detail.

The boys (and Harley in particular) simply cannot cope if they don’t know every single detail before we even leave the house.

For example, he needs to know :

What options are there for breakfast the next morning, what outfit will I be wearing.

Where are we going, what time, how long for, what are we doing there, how far do we have to drive to get there?

Where are we having lunch, what are we eating for lunch, where do we go next, how far, how long, what time …..

And that is for the entire day,

And if you change even one tiny detail – that’s a meltdown right there.

There is absolutely NO room for spontaneity, impulsive ideas or changing your mind.

There’s no strolling along boardwalks, coffee in hand, deciding what to do today.

There’s no waking up and deciding over a leisurely breakfast whether to shop or go to the beach first.

If it’s not drawn on the whiteboard the night before. You CANNOT do it.

Nope.

And if you go to the supermarket without a list with all the items counted and numbered, you’re asking for trouble.

And don’t even think about buying anything that’s not on the list either…..*gasp*

If things don’t go to plan ie: it’s raining but “you promised” that we could go to Seaworld…..look out , there’s a meltdown approaching.

And that’s not even taking into consideration all the “changes” that have already occurred.

Different bed, different room, smells different, different bath, different lounge , etc etc

So yes, you can still have family holidays and you can still really enjoy them, but we’ve had to resign ourselves to the fact that we can never “make it up as we go along” or take each day as it comes. There simply has to be a plan.

There was one night that we had decided that we were all going out for dinner and pre-warned the kids and talked about it all afternoon but when we got there, the place we’d told them about didn’t have kid’s meals or anything that I thought they’d eat.

So we conferred and decided to try another one nearby.

As we were looking at the menu on the wall, Harley was getting hungry and he started to lose it. (Because an unexpected change had occurred you see). He was laying on the floor kicking the wall, chewing his chewy tube, thrashing , flailing, flapping and screaming.

Mum took him for a walk a few metres away to try and remove him from the situation and therefore calm him and I stayed and continued to look at the menu when I heard the couple beside me tutting.

The man said…“That kid is STILL going off, OUR children would have NEVER been allowed to get away with that!”

And his wife agreed.

They obviously didn’t know I was the mother so I turned to them and simply asked:

“So , how many children with autism did you raise?”

And they predictably said none.

So I then turned back to them and calmly said.

“Well I am raising 2,  and THAT child that you are referring to happens to be my son.

He has autism, he is not being naughty, there is a difference.

He is having a very stressful time at the moment dealing with some unpreventabe changes that have been thrown at him and he is unable to communicate with us any other way. So in future, please hold your tongue and your judgements unless you know exactly what you are talking about, you were quite rude”.

They left without ordering.

Also predictably.

Despite that night and the other similar occasions, there were times during the holiday where we just decided that we were going to do what we wanted (like shopping etc) and  took the attitude that the kids would just have to learn to accept change.

And we did have a lot of great moments amongst the bad – they just seemed a little off balance  occasionally!

Even so…..I probably wouldn’t say that family holidays are the “highlight” of our family’s year.

They are great at times but mostly, it’s just plain HARD work and it’s much easier on everybody to just stay home!