Mirror Mirror

Mirror, mirror on the wall,

Tell me what you see,

A mother who has got it all,

And is living fancy free?

.

A 50’s Mum with her apron tied,

Around her tiny waist,

She exudes pure joy and speaks with pride,

About her family and the day that she has faced.

 .

Or maybe you see a Mum who’s had,

Her share of stressful days,

With kids at home who miss their Dad,

And seek out constant praise.

.

A Mum who looks you in the eye,

And tells you honestly,

That days like this make her want to cry,

And escape and just be free.

.

So mirror there hanging on that wall,

Do you see her tear-stained cheeks?

Do you know that she has given her all,

But still feels so damn weak?

.

Did you know that she has had enough,

Of the constant crying and fights,

And the child who just won’t stay in bed,

Every-freaking-night!

.

The dark rings under her eyes are there,

Because it’s been 8 years,

Of getting up each night is just not fair,

And the reason for her anger and her tears.

.

Despite all this, oh mirror can you see,

That she knows that this too will pass,

And she’s trying hard to be, the best that she can be,

Because it’s only with her God that she will last.

WE DID IT! (and survived to tell the tale).

Last night, Mr Patient arrives home from a very full day and saw the mince defrosting on the sink and turned his nose up saying “Not spaghetti bolognaise again!” . I giggled knowing that this is his LEAST favourite food in the whole world but it’s also the easiest thing to cook and something that I can guarantee that all the kids will eat.

I smiled and cheekily told him that if he didn’t want that-he could have whatever he felt like as long as he was willing to cook it!

He walked over and put his arms around my waist and whispered “Can we go out?”

I looked at him and saw the excitement in his eyes and so badly wanted to do this too so sighed and said “Ok, but you have to help me deal with any situations that may arise as a result of springing this on the boys”.

 “Ok, sure” he answered happily.

He rang 2 family restaurants asking if them if we could get a 6pm reservation and both of them were full but the 3rd place was available.

We put our biggest smiles on and walked over to the boys saying in a cheery voice “Who wants to go out for dinner?” 

Harley’s face lit up and he yelled “YEAH!!!….where to?”

We told him and asked him to grab his coat. As I helped Lucas into his I overheard him quizzing Ella. “Do they have chicken nuggets there? Do they have lemonade?, Which table are we sitting at? Who am I sitting next to? Does it take long to drive there? What are YOU having?”

I looked over and saw her rolling her eyes and patiently answering every one of his questions with “You’ll just have to wait and see”.

 

We quickly grabbed the kid’s Nintendo DSs and piled into the car.

Once we arrived, we were ushered to a table over in a very quiet corner. I was stoked!  

The menus came out and I asked Harley to choose between chicken or fish. He ummed and ahhed for AGES but finally settled on the chicken. I was glad that he didn’t know that there were actually SIX kids meals to choose from lol!

We ordered the chicken grilled without batter because we needed it to be gluten-free and the WHOLE time that we were waiting: Harley perseverated over the possibility that they might forget to make his gluten-free. If it wasn’t so funny, it would have made me CRAZY!

He quizzed the waitress when brought the food over and she patted him on the head and said : “Yes mate I PROMISE!”

I love her!

By now, a lot more patrons had arrived and there was a family with a baby sitting over on our right and when it started crying – I saw Harley wince but thankfully – he was too absorbed in his DS game to react too much.

We all happily chatted as we ate and I felt like a NORMAL family. This is something that I haven’t felt like for a very long time!

Once we’d finished eating and our plates were cleared, the waitress asked the kids whether they would like strawberry, chocolate or caramel topping on their ice-cream and Harley started to lose it.

He stared at the waitress for AGES and I could see his brain ticking over until finally he covered his ears and shouted “I CAN’T KNOW”.

She looked at me and I shrugged and said “He’ll have strawberry thanks!”

 

After they’d finished, we patted ourselves on the back for a successful night out and decided that we definitely need to do this more often!

WHAT A GREAT NIGHT!!!

But all the same – we decided that staying home from church was the best option this morning because expecting him to behave there after a late night and a change in routine was asking way too much.

Rock on us!

 

Count them one-by-one.

It’s funny to me – but every time I have a rough day and start to get depressed, God ALWAYS causes me to stop and take note of my many blessings.

And every time that I do, I become overwhelmed with just how many things I have to be thankful for. Like for example: my beautiful 11-yr-old daughter Ella. She’s amazing.

REALLY amazing!

This child is the gift that we received without even asking for it.

She was a “surprise” and threw us into a bit of a tailspin when we first found out that we were expecting her because “our” plans were to be married 3-4 years and then START trying for a baby. But God had other ideas.

So 15 months after tying the knot – we were thrust into baby mode.

I look back now and simply can’t believe that I thought motherhood was hard work. I had NO CLUE what hard work was when I only had her to care for because she was so darn easy.

She was a textbook baby, ate solids easily at 4 months, slept through the night at 6 weeks (yes, I’m absolutely serious), sat happily in a high chair whenever we would go out for dinner or with friends (which we did FREQUENTLY when she was little) and slotted perfectly into our little family. Life really didn’t change that much when it was just the three of us because she was THAT easy-going.

I would look at other people struggling with their children and secretly think “All they need to do is be a firmer parent.”

With friends who had bad sleepers, I would think ”Just put them to bed and walk out…..it’s all about being the strong parent!”

If friends had a bad eater “Just be firm – tell them that they HAVE to eat it”

And the worst – when people told me that they were housebound and couldn’t possibly attend the dinner/movie/party that we organised because their child was such a crier/bad/sleeper/eater etc, I would roll my internal eyes and think “MAKE the child fit in – it’s really not that hard!”

Oooohhhh eeeeee!

I surely needed a slap up the side of the head and I received it in Harley!

Don’t misunderstand me though – I adore this boy more than I can describe, he brings me laughter, joy, warm hugs, emotional pride and more affection that I could ever ask for but he also brought a lot of emotional overload, stressful heart palpitations and endless tears into my life!

I don’t believe that God punishes people with difficult children but I do believe that I needed a good solid reality check and Harley was part of that!

Ella was not just like this as a baby – she is STILL like this!

She is the most easy-going, laid back, helpful, kind, gentle child.

Take this morning or example: Mr Patient is working today.He is interviewing people for a census job that’s coming up and will be out of the house pretty much all day.

She came into my room while I was still in bed this morning and told me that she had just finished making breakfast for the boys. She was holding a freshly made latte for me and placed it down on my bedside table with a smile and a kiss on my forehead and told me that I should rest and that she would take care of Harley and Lucas for me.

I couldn’t believe how blessed I was but I did get up all the same. The boys were begging for the iPad so I brought it out to them and sat down with my cuppa and chatted with Ella for a while.

After about half an hour I decided to get a start on the housework and told her that she was allowed some computer time. (Her FAVOURITE thing in the world!)

Now…tell me…..how many 11 year olds will arrange themselves at the dining room table on the laptop with their back to their mother JUST so I could see the screen and monitor her internet surfing?

This precious child is not the least bit secretive or manipulative. I can’t believe how blessed I am to have such an awesome girl!

Yes….life IS good. Sure the boys can be hard yakka but that just makes it interesting!

Harley just came up and hugged me and thanked me for letting him use the iPad and Lucas told me that I am his best friend.

Aren’t my kids all just so awesome?!

Remind me of this next time I have a whinge won’t you!

Fi x

Mummy needs a valium.

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

This was how this morning unfolded…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stupid move on my part!

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

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

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

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

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

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

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

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

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

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

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

Seriously.

Noisy boys

When you put my two boys together, it’s like adding bicarb soda to vinegar.  I mean – we are talking SERIOUS explosions of messy goop here! 

There is chaos and mayhem mixed with a healthy dose of overactivity.

It’s NEVER quiet and they compete to see who can be the loudest and get the most attention. But then it usually turns sour because Harley quickly becomes overwhelmed and covers his ears and starts screaming “STOP TALKING”…..

I know I shouldn’t laugh, but it really is quite funny and it never ceases to amaze me that a child like Harley who is extremely sensitive to noise can make so bloody much of it himself!

This afternoon, Mr Patient came home early from work to help with the busy Thursday rush of running around to various therapies, school pick-ups, pre-school collection and ferrying to and from dance rehearsals. This is a mammoth task that I usually undertake all by myself and it is utterly exhausting! I leave the house at 1:30pm and usually walk back in around 6:45pm. UGH!

But I had a bit of a parental meltdown myself after last Thursday and gave Mr Patient an ultimatum….Either he had to come home earlier on Thursdays or I was going to pull all of the kids out of their groups. I’m happy to report that he came through for me and this week was the first day of this new routine.

How did it go?

Well….you’ll have to ask him! (that’s if you can get him to answer – he’s currently in the corner rocking and sucking his thumb moaning “NO MORE BOYS, NO MORE BOYS!” )

Of course I’m kidding! But he did get a glimpse of the ridiculous noise levels and madness that I’ve become accustomed to and said that he doesn’t know how I manage! (Keep it up darling – that’s the kinda talk that makes me smile).

I remembered a poem that I wrote a while back when I was in another one of my these-boys-are-driving-me-absolutely-stark-raving-nuts moments and showed ti to him tonight.

He smiled and nodded knowingly so I thought I’d re-blog it here tonight.

Don’t get the wrong idea here: I love them to bits but they DRIVE ME BATTY!!!!!! :D

Raising boys can be quite rough,
And challenging at times,
Sometimes I think I’ve had enough,
And they cross too many lines…

They seem to think that no means yes,
And push me til I break,
When it stops is anyone’s guess,
So what’s it going to take?!

The constant noise is over the top,
They run and flap and jump,
My days are full and I don’t stop,
Meanwhile….my house becomes a dump!

I wonder if it is just me,
That struggles with my lads?
Do other mums of boys agree,
Are you also going mad?

Some people say that they will grow,
Into some fine young men,
But there’s still one thing I want to know,
Can someone tell me when?

If I had to choose the thing I love,
The most about my boys,
It wouldn’t be the fighting or
The ever-present noise,

It would just plain and simply be,
The way they make me melt
When they hug me tight and then kiss me,
And I’m thankful for the hand I’ve been dealt.

What I believe…

This post may surprise a lot of people who know me personally because I like “girl power” about as much as I like lady Gaga….Bleeuughh!  

I’m not into womens meetings (my friend D calls them oestrogen meetings :D ) and I’d rather gouge my eyeballs out with a fork than attend a motivational speech about influential women.

That said: I really do believe that mother’s need each other.

I believe that we all have it in us to reach out and help others no matter what our circumstances. And this is as simple as buying a cup of coffee for a friend, washing their dishes for them when you visit or just giving a hug and an encouraging word just because you can.

I believe that life is hard. It’s always going to be that way so we may as well get used to it. The difference is how you choose to view it because it’s a glass half full or empty kinda deal.

I know that personally, I often forget this and have been known to sink into deep misery. Parenting autistic kids does that to you – it’s damn hard work and often the rewards for your sacrifices are few and far between.

  Thankfully, in those times that I have bottomed out, one of my amazing friends will pray for me and throw me a rope to help pull me out of the pit. I am so grateful that God has put these people in my life. I would be lost without them.

I believe that it’s ok to not cope and fall in a blubbering heap, and that mother’s need to be more honest with each other. I truly don’t understand why society has these stupid unspoken “rules” that dictate that mothers need to appear to be on top of the world and coping beautifully with everything that they are juggling,  at all times.

Because that’s just not reality at all. Even mothers of children WITHOUT special needs find it tough at times too. No-one receives a manual when they become one.

If you’re having a rough time, you should be able to count on another mother to support and not judge you. If your current friends don’t do this – you need to find new ones. It’s that simple.

I believe that you don’t have to agree with someone or even share their beliefs to help them out because it’s not about that. It’s about putting others before yourself even when you don’t feel like it because what goes around comes around, and one day…you may need someone to do the same for you.

You may be wondering where this post is coming from and where-on-God’s-green-earth it’s headed?

Well, I’ll tell you:

If I had a dollar for every time that someone has come to me and “shared” a tidbit about another mother and/or her parenting skills I would have enough money to retire already.

Seriously, it makes me crazy.

People should mind their own business and rise above gossip.

I’ve mentioned before that I have lost friends since the “a” word moved in here but I can now see that I’m better off for it. Those people weren’t true friends anyway. They were only ever looking for what they could “get” from me and I was evidently too much hassle and they simply weren’t prepared to give what I desperately needed.

But losing them has made way for new and true friends. Friends who don’t always understand us but try their very best to. Friends who don’t judge what they don’t know and friends who are willing to give the benefit of the doubt whenever it’s needed.

Mothering is really damn tough. I know for one that NO-ONE really knows what goes on behind closed doors. For example – very few people are privy to the war zone that we live in every live long day and if outside appearances were everything, I’d be stuffed!

I’ve made no secret on this blog that things have been really tough here at times and will probably continue to be – that’s to be expected considering that autism has taken up permanent residence, but this post is not even necessarily about me.

No, this is more about the people who I meet in the autism circles that I run in and the family stories that I read as I pore over the blogs of other autism mothers all over the world. The mothers who are desperate to be heard and the mothers who have been wrongly judged and probably gossiped about.

My heart breaks for the mothers who have no family support. The mothers who have been shunned by their friends and who have no-one to turn to when the chips are down.

Those mothers who are working three jobs to afford their child’s therapies, the single mothers who have sacrificed everything so that their child gets what they deserve and the mothers who just.want.a.break!

Don’t get me wrong. I am no better than anyone else. I often hear myself saying “I’m already too busy “ or “I can’t” and the sad fact is that we are all living in a frantically paced world right now. But surely even so, mothers can still be there for each other can’t they?

We need to leave our opinions in our heads where they belong and reach out and help each other. Plain and simple.

It shouldn’t be this hard.

It really shouldn’t.

I’m just sayin’!

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!

Angry birds and Happy Children.

Wow!

What a weekend!  

You might remember me writing a few weeks ago about a difficult decision that Mr Patient and I had to make regarding our decision to not attend a close friend’s wedding together as a family of 5.

The basic gist of that post was that we felt that it was too much for the boys to handle so Ella and I flew up together Saturday morning for a girls weekend and Mr Patient stayed home with the boys so that we could avoid possible meltdowns and sensory overload.

This turned out to be a MAGNIFICENT decision I must say!  

Mr Patient had an absolute ball with the boys. They toasted marshmallows on the gas stove top, they watched “Mega Mind” on the big screen tv and he took them shopping and bought them both a plush angry birds toy each.  (Who says bribery doesn’t work!)

He tells me that they spent HOURS throwing them at the stuffed pig perched on top of a laundry basket over and over and over again amidst fits of giggles!

Meanwhile Ella and I spent some really wonderful (and much-needed) mother-daughter quality time together and I honestly didn’t realise how much we desperately needed this until we actually did it.

~

This child puts up with a helluva lot from those brothers of hers.

I’ll go back to Friday night now to set the scene for Ella’s complete turnaround of her emotional state.

I’d had an extremely difficult afternoon with Harley. He was in one of his particularly cantankerous, irrational and brain frazzling moods. NOTHING calmed him, he stomped around, punching all of us and walls and furniture and screaming at anyone who dared to go near him.

(In hindsight I can see that it was probably him not coping with the fast approaching weekend changes) but still – it was very trying on all of us.

I walked up to my bedroom at the other end of the house and found Ella sitting on our window seat with her head in her hands sobbing. I went over and wrapped my arms around her and asked her what was upsetting her.  She said that she was sick of all the yelling. My heart sunk as I realised that me yelling at the boys all afternoon had taken it’s toll on her and I told her how sorry I was.

She replied that she wasn’t upset with me, but that she hated that I got pushed to the point of cracking every single day. She said she understood why I yelled so much because the boys are just so full on and that she wished she could make my life easier.

I honestly hadn’t realised that this all affected her THIS much… and my heart broke for her.

So this weekend was very healing for both of us.

The wedding was absolutely amazing! The bride was stunningly gorgeous, the ceremony in the park was just beautiful and I had such a ball at the reception!

I got to catch up with a lot of friends and had such a brilliantly fantastic time…..SO much fun!

I sat through the ceremony in complete peace but every so often, I would find myself thinking about how different it would have been if the boys were there. 

I tried not to but I couldn’t help my mind from wandering.

The ceremony was in a beautiful park and you couldn’t have asked for a nicer day.  Here we are only days away from winter and we were wearing strapped dresses and trying to shade ourselves from the heat!

About 200 metres away from where the ceremony was held – there was a playground. I could imagine that if the boys were there – we would have had a helluva time keeping them away from that but Ella just sat calmly in her seat enjoying the proceedings.

The reception was in a hall about 30 minutes drive out-of-town. A real bush setting and it was AWESOME!

Mum and I watched Ella dance around the hall having the absolute time of her life! Mum commented on how wonderful it was to see her so carefree and happy and I couldn’t agree more.

There were no tense parents to contend with, no annoying little brothers and no expectations on her to “take the high road”.

But as I sat in that hall smiling from ear to ear, I found myself thinking again about the sensory nightmare that it would have been for my boys.

The chatter of a hundred happy people, the clanging of the dishes and glasses, the smells of the cooking dinners, the bright lights and the constantly swaying balloons on the centrepieces would have all been enough to possibly push Harley into a sensory overload explosion!

The speeches were very entertaining, heartfelt and just the right length but even so – Harley would have been stretched to his limit having to sit still for that long.

Ella had so much fun out on the verandah with her cousins snorting helium from the balloons and playing with them all night. The girls get on so fabulously and I couldn’t stop smiling as I watched her so blissfully happy.

She felt very grown up as she tried her very first cup of sweet tea and declared that she is now addicted to it! :D

We were amongst the last people to leave that night and Ella didn’t get to bed until almost midnight (she was wide awake thanks to the caffeine in the tea!)

The next morning, we said goodbye to my sister and her family and Mum, Ella and I headed into town for a coffee and some lunch before our 1pm flight back to the city. 

It’s no secret that I would desperately love to move back home. Not only is my Mum there, but so is my best friend and also a lot of other friends too. The lifestyle is a much slower pace and I find peace when I’m surrounded by family and friends.

We cherished our time together and it was so hard to say goodbye again.

The final boarding call was made and as Mum hugged us, I found myself sobbing into her shoulder, clinging to her fighting the urge to run back to her car and refuse to board the plane home.

I desperately wanted to stay and the thought of going back to the chaos that is my life made me physically nauseous.

Don’t get me wrong…..I love my boys and I couldn’t wait to see them again, but to experience how other people live if only for a weekend was simply amazing.

To see my daughter flourish and relax was awesome and to be able to enjoy myself without having to always be one step ahead, predict the unpredictable and avoid the unavoidable was out-of-this-world.

If nothing else….Mr Patient and I have agreed that Ella and I need to get away together more often. He saw how much this meant to both of us, and I am going to look forward to our next escape.

Not sure when that will be – but at least I have something to look forward to.

Now…..back to life as I know it….

*sigh*

What has autism done for me? A mother’s journey.

You know…..I often sit down and reflect on the past 8 years of my life since Harley was born and marvel at how differently life is panning out to what I’d dreamt up and planned.  

This is definitely not what I signed up for but having said that – It’s just where I need to be. I have accepted that this is not all about me nor is it all about dashed hopes and dreams. It is my reality and it’s also my destiny.

I am choosing to seek out the silver linings and be the best that I can be. Sometimes that’s easier said than done but I’m trying and that’s what really matters.

When autism moved in – it wasn’t exactly a welcome house guest but is IS a permanent one. So I have to make the choice to embrace it or fight it every day for the rest of my life.

I lay awake in bed last night for hours. At 3am I decided to get up and write my thoughts down in my journal so I could calm my racing mind and make some sense of what I was churning through.

*****

This is what I came up with:

Autism has taught me how to look past my child’s more obvious struggles until I can see nothing but glorious potential and Amazing Achievements.

It has also taught me that I need to fiercely guard myself from judgmental people and realise that not everything is personal.

It has taught me to accept what I cannot change and make the most of the here and now.

Autism has shown me the true definition of Unconditional love.

It has made me realise the sad truth that I cannot trust everyone who has been previously or is currently in our lives but that I can Trust God and His plans for me. Those friends that I hold dear have earned my trust and I love them for it. It has allowed me to cherish the seemingly insignificant moments and to celebrate the baby steps forward.

I now have  been given the gift of being able to view life through a very different, sometimes foggy and opaque but always truthful lens. I see things as they really are not as they are always portrayed.

Autism has enabled me to connect with some of the most amazing and Inspiring people. I  have forged powerful friendships based on respect,understanding and passion that I would never have found had it not been for autism entering our world.

Autism has been the driving force behind me realising my own destiny and purpose in life. I now KNOW that I was never meant to be anything but a Mum who is driven by getting what her children deserve at any cost.

I believe that I am doing exactly what God has planned for me to do and that is raising my autistic children to the best of my ability and to journal my inner most thoughts, my ups and my downs along this journey so that I can look back over past entires and be proud of progress and success.  I no longer have to be overwhelmed by the suffocating sense of failure that creeps in whenever I start to compare myself with others.

When I compare the several University degrees that friends have and the screaming lack of qualifications that I possess, I can thank autism. Because of it, I was awarded a God-given grace that I need daily to raise these sometimes trying, always exhausting and incredibly rewarding blessings.

Without autism, I probably wouldn’t have ever started blogging and therefore wouldn’t experience this amazing release and fulfilment that I get to experience as I work through emotions publicly. Completely exposed and preserved for eternity but they are heartfelt, honest and cathartic.

Autism has shown me a different but not necessarily wrong way to view our crazy mixed up world. It has encouraged me to seek out answers for questions that I can’t quite form and that which I don’t truly understand.

Things that I may have never noticed before or even thought to question before autism moved in. These things now cause me to wonder about and strive for solutions rather than just accepting things at face value.

It has rewarded me with new perspectives and fresh beginnings.

I am now granted the ability to dream without limit, to decide that anything is possible and to follow my heart wherever it leads me.

Since autism thrust itself onto us, I have been stripped bare, exposed, stomped upon, beaten mercilessly, devastated, hurt and very broken….BUT I have ALSO ( and more importantly ) been softened, Strengthened, moulded, shaped, inspired and filled with a new hope.

Autism has changed me forever, I see my children exuding Magnificence, potential and life.

So…….tell me, how has autism changed you?

Deciding the next step.

I picked up my iPhone this afternoon and started to walk towards the study so I could put in on to charge. Right at that moment it vibrated and alerted me to the fact that I had a new voicemail message. I hadn’t heard it ring earlier so I was surprised to discover this. I checked to see who it was from and I noticed that it was a blocked number so I assumed that it was either a nuisance marketing call or the children’s school.

It was the latter. I exhaled and wondered what on earth Harley had done NOW!

(I know that’s a terrible thing to think but hey….that boy has history!)

The message was the school admin clerk advising me that they are soon to be conducting interviews for Kindergarten next year and could I please call them back to arrange a time in the near future to talk through Lucas’ application.

Well…..Time  literally stood still.

I took another deep breath and sat down.

My thoughts were racing, my palms started sweating and I didn’t know what to do.

This . is . huge .

Lucas turns 5 in just over a month’s time and legally he has to start school next year. But we have no idea what to do with that information. NO idea at all. We KNOW that there is already an extremely overcrowded special needs department at this particular school and we also know that Harley could really do with a lot more aide time too. It bothers me that Lucas will likely be in the same predicament and I just don’t know if *I* could cope with that.  

Don’t get me wrong here: I LOVE the beautiful ladies in our special needs department – they are amazing, passionate and caring women but there’s simply NOT enough of them. It’s basically all about mathematics and it all comes down to funding. (Like most schools).

Those of you that know me personally and those that I have been fortunate enough to become close to since I started blogging understand that there is SO MUCH MORE to this than just simply mother’s angst at her baby starting school. There is a lot of umming and ahhing to be done here and a lot of questions that need answering.

It’s not as cut and dried as “we apply and they accept”.

But then…..it rarely is when you’re talking spectrummy kids and schooling. NOTHING is ever simple there!

But basically – because I know how easy it is for someone to copy and paste this blog’s URL, I need to be careful what I write here but I WILL say that I am still (4 hours later) unsure of what direction to head in. Mr Patient and I are scheduled to have a *chat* over a cuppa tonight though I predict that we will both avoid the topic deliberately!

We absolutely want the best for all of our children and we will continue to spend a lot of time in prayer and going through all of our options over the next little while, but probably not tonight ;)

What *I* want to happen next year is in God’s hands and right now I’m absolutely HATING the not knowing part. Things aren’t necessarily panning out the way that I would like them to and I’m struggling to just chill out in rest in God.

This phone call was good from the practicality perspective but not the heart one. THAT perspective is a massive hurdle for me to high jump over.

I will continue to update on this as much as I am able.

Loveyousall. x

Da da da dum!

This weekend Ella and I are flying up to my hometown for the wedding of my (almost sister) *Rebecca.

I’m SO excited !!!!

I have known Rebecca her entire life and her big sister is my BFF *Hannah who I regularly write about on here :)

She was one of the 5 of us kids (me and my sister and the 3 of them) who grew up in each other’s houses sharing our parents and everything that we owned. I’m absolutely thrilled that she found such a wonderful man to marry and can’t wait to be a part of their special day on this coming Saturday.

I’m still sad that it didn’t work out for my whole family to attend, but  Ella and I are looking forward to it all the same.

Here is a photo of the bride to be:

And here are a few teaser photos of what Ella and I are wearing :)

I will upload some more after the fact :)

* Not her real name…..

It IS the same thing…..a Doctor told me (So it MUST be true…wink…wink)

I spent most of last night sitting up in bed cradling little Lucas who had very laboured breathing and was extremely miserable. HE managed to catch a bit of sleep but I only dozed a little bit here and there so have woken up in a zombie-like state today!

After dropping the older kids at school this morning, I drove him straight to the emergency department at the hospital because NONE of his asthma medications were easing his breathing or helping the coughing to subside.  They took us straight in to the paediatric unit and started a range of tests on him…Thankfully they ruled out pneumonia and told me that his lungs were clear enough for pleurisy not to be a possibility either.  So the verdict was severe asthma.

The nurse that took his stats asked him what his name was and how old he was and he looked at the wall before grunting “No thanks, I want to go home”  at her !

She looked at me and raised her eyebrows so I hastily explained that he has autistic disorder and wasn’t in the mood for chatting. She smiled and said “Ok, that explains a lot” and patted him on the head and left to move on to the next patient.

The Doctor came over next and asked Lucas some questions too but he still wasn’t in the mood for talking so I explained AGAIN that he has autistic disorder and the Doctor asked whether he was high or low functioning and if he was verbal or non-verbal.

I replied that his actual diagnosis is Aspergers Syndrome and went on to explain that I’m so tired of the blank looks that I get when I use that term , so I now find it easier to just use the term “autistic disorder”. Then I clarified that I supposed the answer to his question is “neither”.

He then said something that surprised me.

I just want to point out here that the following sentences are transcripts of what the Dr said to me….these are not necessarily MY opinion!…

So don’t shoot the messenger……Just sayin!

He said “You do realise that there is an extremely fine line between the terms aspergers and high functioning autism and that the medical profession disagree on what the actual definition means”.

And then followed with: ” The term ‘aspergers’ is generally given to a child who displays high functioning autistic traits. The point at which speech is acquired has been debated for years as a deciding factor in differentiating between the two terms. It’s basically the same thing but parents deal better with the word ‘Aspergers’ than they do with the umbrella term ‘autistic disorder’. A lot of parents of Aspergian children are in denial that this is even a spectrum disorder. You are in the minority by admitting it.

Really?

I was a bit thrown by this because ALL of the parents of aspergian children that I know personally KNOW that it is an autism spectrum disorder.

NONE of my friends are in denial?

And seriously……the fact that the same child could essentially be diagnosed with PDD-NOS, Aspergers, High functioning autism or Autistic Disorder depending on which practice, which paediatrician and which country you live in…..is ridiculous!

Bring on the DSM-V I say…..I’m over it!

Anywho…..five and a half hours later Lucas was discharged with a fistful of prescriptions, an intensive asthma plan, and a letter for my incompetent  misguided GP stating that there was NO fluid of concern on his lungs and that it WAS severe asthma (as his concerned mother pointed out).

A very eventful day with a good ending.

And now I’m off to grab some Fiona time before Mr Patient arrives home from Melbourne tonight so it’s Cheerio from me :)

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 :)

.

Why I told my son to stay away from nerds.

Yes that’s right….I have told my child to stay away from nerds.  

Before you start thinking that I’m a horribly judgemental and awful parent – let me explain…

Firstly…my son is a bit of a nerd himself. He regularly spouts out monologues about his current favourite aircraft or favourite Ben 10 alien or something else equally inane.

And I tell Mr Patient all the time that he is also more-than-a-bit of a bit of a nerd himself!

I mean: his ever growing star wars Lego collection, his fascination with car makes and models, his love of all things related to science fiction, computers or technology is only a small snippet of why I think this!

B-O-R-I-N-G!

But no, these are still not the types of nerds that I am referring to.

I’m talking about these suckers…

Harley’s teacher made a bee-line for me after school today because she was quite upset that another child had bought Harley a packet of nerds at the school canteen at lunchtime and that he had eaten the whole entire packet.

She wanted me to know how sorry she was for his consequent behaviour issues and that she had spoken to the other child and told them that they are NOT to buy things for other children ever again.

I assured her that I wasn’t upset with her and told her that Harley is getting to the age where he needs to take some responsibility as well! He is almost 8 and he knows that he isn’t allowed to eat something that’s THIS chock full of preservatives and colours!

The teacher was still not convinced that I was ok and then I saw him with my own eyes.

It.was.hilarious!

He had glazed over eyes and alternated between dazed out and hyperactive.

He ran and ran and ran and ran some more!

He yelled out a quick “Hi Mum” as he tore past me for the gazillionth time throwing his school bag in my general direction.

I laughed…I mean…. What else could I do?

Some kids are fine with food colourings in high doses…whereas others (like my boy) are definitely NOT!

And just because I’m a caring, sharing kinda gal…. Here’s a quick video of Harley taken minutes after we walked in the door this afternoon. (Of course Lucas had to copy his brother too…)

We’ve now been home for almost 2 hours and he’s still running!

Which is flipping FANTASTIC!

Not.

Mighty, fearless mother (and occasional bandaid provider!)

Yesterday was Mr Patient’s birthday.   

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The day(s) after really majorly suck!

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

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

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

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

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

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

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

Have a great week all x

The pain of not knowing.

And so ends another school week.  

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

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

So …yeah….great news eh!

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

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

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

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

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

****

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

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

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

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

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

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

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

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

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

So….what to do?

I honestly don’t know right now.

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

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

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

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

Have a great weekend all…..

Fi x

Well….My weirdo magnet is working again!

This is  re-post of an older blog that I dug out because this kinda stuff is happening again and it really makes me laugh :)

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

For years my husband and I have had a running joke that I am just one big weirdo magnet.

Seriously……weird people are literally drawn to me.

I don’t understand it myself but it’s definitely a true statement!

From the stranger in the supermarket who asked me hold her baby while she went to the bathroom, to the checkout girl that told me the in-depth story of how she had to get her cat put down because it was showing homosexual tendencies to her neighbours cat, to the lady I sat next to in church that asked me to use my pen.

I handed her my pen as I thought that the one she was holding in her hand had run out of ink but she then proceeded to put “my” pen in her handbag and kept writing with her own?

I asked her why and she informed me that she liked the look of my pen because it would match her diary at home and that’s why she asked me for it? OOOOoookaaaaayyy!

And I must have a trustworthy face, because the things that people tell me are mind-boggling!

I’ve had to stop women when they start telling me about their bedroom “issues” with their husbands, I’ve had a woman who’ve I’ve NEVER met before offer to come and babysit my kids while I go to the hairdresser (my roots were pretty BAD at that time) and that was her way of telling me to get them done!!

And yesterday, a man came to our front door with a questionaire on electrical companies and I informed him that I wasn’t interested so he said he would wait until I was ready to listen to him. (I threatened calling the police and he eventually left!)

And this kind of stuff has been going on my entire life! Even back in high school I can remember classmates revealing weird and wonderful things to me!

I had a boyfriend that would come over to my place and sit in the eucalyptus tree in my parent’s front yard and pretend to be a koala…….For hours.

Another time he arrived with a long rope and climbed onto the roof of my parent’s 2 story home and proceeded to abseil down the walls? He also once tied two pieces of cardboard to his shoes and then attached a rope to the bumper on his car and asked his brother to drive slowly so he could “road ski”

The idiot ended up in hospital with severe gravel burn!

And these are the kind of people that are drawn to me!

Burt I’ve been thinking…….I certainly live with a lot of “strange” now and I wonder if all of the odd things I’ve experienced (and continue to experience) are preparation for what lies ahead with my quirky family?

Was the woman who stole groceries out of my trolley in the supermarket just God’s sense of humour getting me ready for my own odd little boy who grabs things out of other people’s ?

And the lady in the news agency who asked me outright why my face was lopsided just a glimpse into my future where my aspie but honest son would eventually ask me why I have one eye that is “spooky” and one that’s “normal”?

Ahhh, you’ve absolutely GOT to laugh. It’s just too funny to do anything else!

I had ANOTHER one of these moments only today!

After dropping Lucas to pre-school, I headed up to a shopping centre to buy a birthday present for Mr Patient whose birthday it is on Saturday. I was browsing in one of the department stores when one of the lively 20 something girly-girl too-perky-for-my-liking assistants came over and asked me if I needed any help.

I politely told her that I was just looking and smiled as if to say “hurry-along-now-and take-your-annoying-little-giggle with you!” But she wouldn’t get the hint!

I was looking in the book section which was very close to the makeup counter and she stood beside me and asked me if I wanted to “get a makeover”…..I laughed at her and said : “Why? Do I look like I need one?”

She smiled and said “Well honey…yeah, you kinda do!”

I was too shocked to be angry so I laughed again at her gall and tried to picture HER after 3 kids and 5 surgeries and that made me SMILE :)

It’s funny to me because all this time, I’ve thought that I look like THIS ⬇

But it seems that my mirror has been lying to me because apparently, I REALLY look like this! ⬇

:D

From fear to obsession.

Every night when I pray with my kids, I pray against fear in particular with Harley.

image from carcondition.com

Fear is something that grips him occasionally and can sometimes be quite debilitating for him. I know that God is working on this with him but it is a process that he is  learning through at the moment.

He is petrified of things that other kids wouldn’t give a second thought but constantly fails to see the seriousness of other more obvious situations.

I think all kids are fearful at some time or another-It’s part of the growing up process.

You know – learning what’s not as bad as you first thought and what really IS serious so that it triggers a memory in your brain every time that you experience similar situations again, and therefore know intuitively how to react.

Aspergers children however haven’t been sent that memo! From what I’ve observed in my boys, they haven’t figured out yet that there’s a link between the action and the consequence!

And this can be EXTREMELY frustrating for us!

I was reading *this* on Nancy Mucklow’s website called aptly: “Aspergers and Consequences” today and it explained a lot of what I’ve been noticing in Harley lately.

These two paragraphs especially – helped me to understand WHY this keeps happening!

3. Aspie kids can learn how one action relates to another, but only  if those two actions are truly related. They can’t connect an action with a parent-induced consequence. They know that the consequence is made-up. They know that it really doesn’t necessarily happen.

4. Aspie kids perceive the act of making up punishments as irrational behaviour. They think NT parents are nuts. At best, they will learn to put up with the consequences just to avoid the crazy parent behaviour that will follow if they don’t.

 

Which is what I had to remember this week when Harley scared the cotton socks off me as I drove Lucas to pre-school.

I was driving along the freeway in the middle of 3 lanes at 110 km/h (which is about 68 miles) and Harley decided for some bizarre reason to just open his door!

I screamed at him to close it and he looked at me in the rear view mirror and asked “Why?” (which to him was a perfectly logical question but to me was the most insane thing I’ve ever heard him ask!)

 

“NOW IS NOT THE TIME TO EXPLAIN WHY…..JUST DO IT BEFORE YOU DIEEEEEEEEEEE!” I screeched like a fish monger’s wife!

Ella was having kittens in the passenger seat and went as pale as a sheet and she then joined me in screaming “CLOSE IT NOW!!!!!!!”

I looked back again in the rearview mirror and he looked innocently back at me with a puzzled face and calmly said: “Mummy, you didn’t say PLEASE!”

 

“Oh for the love of life…..PLEASE CLOSE THE DAMN DOOR BEFORE YOUR ARM GETS RIPPED OFF AND YOU DIE YOU SILLY CHILD!” I screeched!

 

THIS approach had finally gotten through, and I scared the pants off him in the process because he closed the door and started sobbing hysterically.

I drove to a place where it was safe to pull over and got out of the car and took him in my arms and hugged him.

I knew that I had to be graphic so that he truly understood the seriousness of the situation but it had shaken him in the process and I didn’t want to terrify him.

So I simply told him that if someone had driven by and their car caught on our open car door, that it could have ripped it off our car and if his arm was still holding it, that he could have been dragged onto the road and would have died instantly.

He started to panic and started rocking in his seat which made me feel bad but I had to step aside from the emotion and remind myself that this is for the greater good.

I kicked myself for not checking that the child lock was on the door before I pulled out of the driveway and vowed that it would now become a definite routine for me now.

So ….what did Harley learn from this?

Well….he now obsessively checks the child lock on the door for me EVERY time he gets into the car.

He obsessively checks Lucas’ door EVERY time we go anywhere and he begs to sit in the middle seat everywhere we go so that he’s not anywhere near the door “just in case I get the urge to open it again Mum!”

He has appointed himself the safety monitor in the house and routinely checks that the stove is turned off, the iron isn’t left plugged in and reminds me daily to make sure that I remember to check the batteries in the smoke detectors.

He shadows me when I’m cooking, asks me to test the bath water before he gets in and freaks if there is a knife left ANYWHERE on the kitchen bench.

So……who said that aspies don’t connect actions and consequences?

I have now managed to get the “danger message” through to him but now I need to work on managing the newly adopted obsessive/compulsive behaviours.

I have been listening to Mark Shultz a lot lately and this song has kept me in peace even though we are weathering quite a storm with Harley at the moment :)

Confessions of a helicopter parent.

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

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

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

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

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

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

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

 

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

***

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

Ok?

Thanks..

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

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

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

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

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

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

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

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

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

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

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

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

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

“What do you mean honey?” I replied.

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

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

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

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

My kid ALSO needs me.

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

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

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

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

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

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

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

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

I love you but you puzzle me!

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

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

For my precious Harley,

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

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

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

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

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

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

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

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

XX MUMMY XX