An Impossible Situation

Sometimes parenting on the spectrum finds you in situations that are hard to navigate and it’s often impossible to figure out the best strategy for dealing with them when you are in the heat of the moment. Because these moments aren’t always black and white like regular parenting can be at times.

There have been times where I have had to make a choice of which child to comfort when some situations arise.  And that’s an incredible hard thing to have to do!

Like yesterday, we were all driving the 6 hours from my Mum’s house to ours and had stopped for lunch. I had taken the boys with me to the bathroom and was helping Lucas to wash his hands by turning on the tap for him, only I accidentally turned on the hot tap causing him to burn his hands. He let out an ear-piercing scream from the pain and Harley (who was standing next to him) reacted strongly to the sudden loud noise and thumped his little brother HARD on the back.

Lucas was still crying from the burn and now also from being hit and his screams got louder causing Harley to throw his hands over his ears to block the continued screaming.  But, Harley was now kicking Lucas because he was still screaming and it just went around and around in circles.

Lucas kept screaming – Harley kept kicking Lucas because he was screaming – Lucas screamed from being kicked. And repeat.

I was in an impossible situation because I needed to get cold water on Lucas’ hands to help ease the burn (who wouldn’t let me put his hands anywhere near the water because he didn’t want to get burnt again) and trying to calm him from being hit and kicked as well as trying to comfort a distraught Harley who was in full-blown meltdown.

I couldn’t do it and had to make a quick on-the-spot decision to deal with the most important issue; which was focussing on the burnt child. I then had to put myself physically between the boys to take the force of Harley’s kicking to shield Lucas all while trying to get him to stop crying, run the water over his hand and show Harley that I was there for him.

To add to this: at the moment I have a bad leg and knee from a running injury so I also had to ensure that he didn’t kick that leg during his meltdown. It was a challenge I can tell you!

Eventually Lucas’ cries turned into small whimpers and Harley started walking in circles on the spot looking at the floor. (This is part of how he calms himself) and I was able to gather a boy under each arm and hug them closely.

I tried my best to talk to them both about what had just happened but honestly: I didn’t believe that either of them was deliberately upsetting the other. So I asked Harley to apologise for hitting and kicking and I apologised to Lucas for turning on the wrong tap and causing him to scream and hurt Harley’s ears.

It’s been 24 hours now since this happened but I am still unsure if I have handled this properly.  Lucas’ hand is ok, the boys are best buddies again and it seems to be forgotten.

So why am I still upset over the whole episode?
Why is it still haunting me? Why can’t I just get on with it?

Because mothers are harder on themselves than anybody else is.

I’m interested to know if anyone else has any tips on how they might have handled this situation?

Any thoughts?

Just look at the ground Mum …

I will not enter a JB HiFi store if I can avoid it. It’s not a bad store, the staff I’ve encountered there have always been lovely and their prices and products are good. And it’s not just my local one that I won’t go into, it is every franchise. Anywhere.

This store kills me. But it’s not a superficial reason that makes me dislike it, it’s because this store does complete overkill on their in store advertising and point-of-sale. There are banners, pricing signs and posters hanging from every spare space of ceiling and covering every spare wall and surface that there is. I literally cannot cope with the bright yellows and excess of signage because it confuses and overloads me visually.

As long time readers would know – I have vision problems. I have had a corneal transplant in my left eye because I was born with a degenerative eye disorder. So this kind of in-your-face promotional onslaught actually hurts my eyes and gives me headaches. And this is because my eyes don’t work together but rather as individuals hence the reason that I have trouble knowing where to focus in places like this.

So I avoid them if possible.

Today we went down to the shopping centre to grab a few things and Harley pulled me by the hand leading me towards that very store. He wanted to go and look at the Skylanders in there and I shook my head and quickly explained why I couldn’t handle being in that store.

“Just look at the floor Mum” he said.

I turned around and looked at him asking him to repeat it.

“Look at the floor Mum. That’s what I do when you take me somewhere and it is too loud or there are too many people. If I look at the floor and count the tiles or floorboards, my brain focuses on that instead.”

I was amazed!

I asked him: “Is that why you are always walking into people and poles and stuff when we’re out?”

He nodded and smiled.
“Yeah, sorry about that Mum. I’m just looking after my brain”.

I LOVE that my boy has begun to develop ways to self-help and that he is starting to be able to verbalise them. I LOVE that he is finding a way to fit in this world. I love every little unique and quirky thing about him.

And hey…as far as I’m concerned, if counting tiles is what it takes for him to focus, count away my boy!

Stilettos and Joggers

I was telling a friend the title for tonight’s post and we laughed about it.

We were discussing the act of walking in another person’s shoes and the difficulty factor involved when there are kids with special needs as part of the package.

I said that if the shoes you were made to walk in on another person’s journey were your own worn-in comfortable joggers – the walk would a lot more pleasant than if you were to walk the same path wearing unfamiliar and un-sturdy stilettos that pinched your feet every time you took a step.

And we agreed that as Mum’s of SN kids, we were often not given the option of footwear and were expected to sprint in heels regularly. But we’re not allowed to complain because this is our lot in life right? Somehow on some level we deserved to have more difficult children, or we were given them because “God” gives his toughest challenges to his strongest warriors (or insert any other cliché that SN mothers have been told to alleviate the speaker’s own feelings of guilt).  But the thing is – none of us put our hands up for this. This is just the way it is.

Lately – I am frequently overwhelmed with feelings of inadequacy. I constantly worry if I am doing enough to help Harley. I think about his future and wonder if he will be able to navigate adulthood or whether it will send him into frequent shut downs or worse – public meltdowns. And if he does shut or melt-down regularly – will he be able to hold down a job? A relationship? Friendships?

Last week was the school Easter Hat parade. Harley had told me in the morning that he didn’t want to go but I had a busy morning ahead of me so I made him go anyway. I turned up a few hours later to watch the parade and noticed during the event that Harley was dangerously close to losing it. As soon as it finished I went over to grab him to take him home early but knew by the look on his face that I was too late.

His class was the last one to walk around and he was on complete overload by the end. I walked him out of the auditorium and over towards his classroom when he turned to me and punched me in the stomach, he followed that up with a few kicks to my shins and some head butts for good measure. He was sobbing and moaning and clearly needed a safe place and I would have thrown him in the car if I could have found Lucas, but he had run off somewhere else and was somewhere amongst the throng of other parents and students.

I let go of Harley’s hand to take a phone call. It was Ella calling from over the other side of the school in the middle school area. She had somehow grabbed Lucas and was calling me to ask me to come get him because he was lost and looking for me. But by the time I had hung up from the call – Harley had taken of at full speed.  I tried to follow him but he was too fast.

My phone rung a second time and it was Ella again telling me that she’d seen Harley run past her and she’d noticed that he was terrified and told me which direction he’d headed in.
I eventually found him cowering inside a tent inside one of the junior school classrooms. My joggers had become stilettos again and I turned and walked out of the classroom alone and burst into tears.

Somehow, someone had alerted the head of junior school and she had gone into talk to him. Once he came out again to me she asked him to apologise to me and I was floored?

In all these years, it has never occurred to me to ask him to say sorry for hurting me whilst in the midst of a meltdown.

I just told myself that it was part and parcel of having a child with special needs. I told myself that he wasn’t in control of his emotions so therefore he didn’t need to make amends. I usually just nurse my wounds and try to pretend that it didn’t really matter.

But she pointed out that whilst he may have been unable to control himself at that time, he still needed to say sorry to me once he was calm again. She asked me (rhetorically) how he would go in the workplace if he never apologised for his outbursts. (If they happened).

I knew she had a really great point and I wondered if I had been strapping on stilettos when I should have been able to stay in my joggers all along?

Have I made things harder for myself by “allowing” certain behaviours that I would never allow from a typical child all under the guise of “he can’t help it”. Have I permitted my child to push me into a corner by not requiring him to take ownership of his actions.

Yeah….I really think I have! And discovering this about myself has opened my eyes to a whole new way of parenting.  I’m really not doing Harley any favours by not teaching him acceptable behaviour and if I continue to make excuses for him when he hurts me – how will he ever learn to treat other people the way they deserve to be treated?

It’s a tough question but one that I have had to eventually ask myself. I’m tired of running in heels.

Now

I always wanted to be a mother for as long as I can remember. I have never been a particularly goal oriented person but having children was always right up the top of my to-do list. And I was blessed to have three healthy children which is far more than I deserve and I am thankful for this – every day of my life.

Really I am.

I don’t take this lightly – I know that there are a lot of women out there who go through years and years of heartache and loss and I will never understand why life deals crappy hands to some people. Life can really stink sometimes…it is unfair and it is harsh. Which makes me even more thankful for the blessings that I do have.

But towards the end of last year, I started to go through a kind of ‘shift’ in emotions. I found myself resenting the kids more and more and a number of times I told my husband that I wish we’d never had them in the first place. I tried to ‘speak to my soul’ and tell myself off for being so awful because I could hardly believe myself that I had allowed things to get that bad.

Of course I didn’t mean it but what I did mean was that I was losing who I was. I had forgotten what it was like to be “Fiona” and not just someone’s Mum or someone’s wife and I didn’t know how to get me back again.

I had decided last year that I would take the first year of Lucas’ schooling off before going back into the workforce and I can see now in hindsight that I wasted an entire 12 months. I achieved nothing except gaining weight, watching TV and browsing around shopping centres to kill time. No wonder I was miserable. But things are changing now in a really big way. I’ve taken the proverbial bull by the horns and thrown myself head first in to a number of new activities; boot camp, studying and even some part-time work. And I am once again looking after my mind and soul. I am taking care of ME.

As I mentioned, I have joined an outdoor fitness boot camp group that I’ve been going to three times a week and I’ve pushed myself harder than I ever thought possible. I’m so surprised at how much I really do love it and look forward to it. And whilst I still have a looooooong way to go to achieve my final fitness goal, at least I’m a helluva lot closer than I was last year! I have more energy, more motivation and a lot more self-esteem.

I’m eating better and sleeping more and just loving life at the moment.

I tried to exercise today, but my asthma let me down and I couldn’t breathe properly. There was a lot of smoke in the air and as soon as I tried to do the warm up exercises it became clear that I wasn’t going to be able to finish the session. So I decided to go for a slower walk for the hour instead and I took my friend’s new baby with me so she could do her workout in peace. And this beautiful baby boy taught me so much more than I ever thought possible.

As I walked, I watched him sleeping through the hood of the pram. He was so calm, so tiny and so helpless. He was safe and protected from the outside world and I thought about the fact that my friend had put so much trust in me. Her brand new son, her biggest treasure was in my hands and I wasn’t going to take that lightly at all. I felt honoured to be given such trust and I thought about how similar it is to how God takes cares of us. How He looks down on us and protects us from the world. How we were so helpless and insecure before we found Him. And because I know He is my shelter and my safeguard – I can also rest peacefully in Him. And that’s what I’ve been learning how to do.

While I walked I reminisced about my own little boy Harley – and remembered the many times that I used to walk around the block with him in his pram over and over again trying desperately to get him to stop screaming. I was always in tears myself as I walked. I would rock that damn pram for literally hours because my baby hated being held. He was so resistant to the outside world that it completely baffled and confused this once sanguine and outgoing mother. I sighed because I know that I barely even remember Harley as a baby. Sure I’ve got dozens of photos but my memory has blocked out a lot of his babyhood because it was just too painful. At the time, I thought I was the worst mother ever because he didn’t want me near him. I didn’t understand him and everything that I read about raising babies just made me feel worse because they were all written for parents of children who were developing typically.

But I didn’t know that I was dealing with autism. I had no clue that my boy’s sensory system was under constant assault from the environment around him. I didn’t know that taking his pram through a crowded shopping centre with bright lights, loud noises and crowds would do the reverse of calming him.

I just didn’t know.

But I do now.

I have learned how to show him love in a manner that HE understands. He has taught me how to navigate through the invisible barrier of communication and I now know when to leave him alone. I may not have had those moments of bliss where I got to gaze at my sleeping baby like I did today, but I have more than my share of those NOW.

And NOW is what I am going to continue to focus on because the past is only a reminder of how far I have come. The past is part of what has shaped who we are but it now serves as a reminder of just how far HE has come and of all the good times up ahead. I have fallen head-over-heels in love with my children all over again since I stopped to take care of me.

It was all about taking my eyes off what I don’t have and learning to be thankful for that which do have, because;

“Sometimes God lets you hit rock bottom so that you will discover that He is the rock at the bottom”.
Dr Tony Evans.

Psalm 61:22 From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.

Fi x

Consequences – choosing the right door.

Image from: image by freeimageslive.co.uk – photoeverywhere

I haven’t blogged much lately – it’s been busy here with me commencing studying and the kids going back to school and therapies etc.

This year – Ella is in her second year of high school in grade 8, Harley has gone into grade 4 and Lucas into grade 1. They have all settled in nicely as far as school goes but as is usually the way – home life hasn’t been anywhere near as smooth sailing.

Harley has rediscovered anger and aggression and Lucas has begun to push boundaries in a big way again. But by far our biggest issue at the moment is trying to teach them both about consequences. It continues to be an extremely exhausting uphill battle.

Neither of them (but particularly Harley) seem to be able to grasp the concept that what they say and do now will ultimately dictate whether or not they are praised or disciplined for their behaviour(s) in the near future. It’s frustrating and so far I haven’t seen a lot of progress. But I’m not giving up just yet!

I’ve been asking questions such as: “How do you teach a child who isn’t able to even name their own emotions (let alone realise that other people have feelings and desires)  that they need to factor all of that in when they are making decisions that may also affect others?”

And: “How do you correct them without making them feel like they have failed or broken some unspoken rule that they aren’t aware even exists?”  I don’t want to break their spirit and cause them to feel useless or stupid.

Well – I’m honestly not really sure because we’ve also been on a steep learning curve as we try to parent without having any idea what we’re actually doing. But the good news is that WE as parents are able to learn from past parenting failures and therefore use a different approach the NEXT time that a situation arises. Because WE’VE learned that what we were doing just wasn’t working. So we can no longer use the excuse that “they don’t get it” because the onus falls on US to become teachable instead. Especially if we hold any hopes of actually training our boys to be responsible and caring adults one day.

Admitting that we haven’t got it all together is paramount to achieving success in any aspect of parenting. Stepping down off the pedestal and continually looking for new and better ways to parent is the only way that we will ever find what works for us and our children.

*****

This week , I was driving along in the car with my Mum and Ella. I pulled up to a set of traffic lights and looked into the rear view and saw my beautiful teenaged girl sitting there quietly singing along to her iPod. When she noticed me, she smiled and gave me a cute little wave and I immediately got a flashback to her at 18 months old sitting in her car seat kicking her legs and laughing as we drove along. She was SUCH a delightful baby. When she came along,  our lifestyle barely changed, our social life continued and we only ever had to say “no” or “stop” to her and we would get immediate obedience and absolute compliance. She never pushed boundaries (and still doesn’t), she never threw tantrums and she always seemed to slot in effortlessly anywhere that we went.

But guess what? We parent our boys in the EXACT same way that we parented (and continue to parent) her.The house rules and behaviour requirements haven’t changed, the expectations are exactly the same and whilst she continues to be pleasant to live with – the boys are increasingly challenging and pushing us to the limits of our patience.

And this is why we KNOW that we aren’t necessarily crappy parents so much as we need to find a different but equally as effective method of teaching the boys. It’s not that we think Ella is a better child, it’s just that she learns in a more mainstream way than they do and she adjusts to and understands the unspoken rules of society much better than her brothers. We were never in a position where we had to research and trial other less conventional methods of parenting with her, the methods that ‘everybody else’ used worked for her. We didn’t realise how just fortunate we were.

And because we had her first – I can understand why parents of children like Ella wrongly assume that autism is no more than a badly behaved, badly parented and spoiled child. This was one of the factors that led me to starting this blog. I want to scream from the rooftops: IT’S NOT ALWAYS THE PARENT’S FAULT!!!!!

I digress……

*****

I truly believe that ANY child whether they have a special need or not can be taught anything. It’s just a matter of finding out what works for each child individually and not applying a one-size-fits-all approach to learning. I am all for it in the classroom and in social situations, I want my boys to be given opportunities to flourish and I regularly quote the phrase: ‘Fair isn’t every child getting the same thing but every child getting what they need’. But embarrassingly – It’s only been recently that I have started to apply this same approach to my parenting style and start to think outside the box to find a way that will work for US as a family.

I have read a LOT this past week on teaching consequences and the best piece of advice that I found was to go back to the tried and tested social story.

So guess what I’ll be doing this week? I’ve also decided to try to make the most of Harley’s visual brain and have settled on the idea of teaching the boys using a RED door for a bad consequence (STOP) and a GREEN one for good (GO). Because it will be much easier for them to visualise and recall which door that a particular past behaviour has led them to so that they can LEARN from their past experiences than for them to recall a whole bunch of confusing and meaningless words.

And once they’ve learned how to connect behaviours to the right or wrong doors – we will be well on our way to success. Wish me luck! I hope I’m onto something!

Once it’s completed I will post it here and on the Wonderfully Wired Facebook Page so stay tuned.

MY kid is spectacular!

Today was a good day.

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

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

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

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

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

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

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

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

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

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

And thank goodness that I did.

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

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

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

**

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

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

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

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

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

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

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

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

The Spinning Question Mark

Last night as I was putting Harley to bed, he asked me if I would stay with him and talk for a bit because he wasn’t tired yet. So I lay down next to him and we started chatting about the day and what we had been doing. We played the butterflies and cockroaches game.

I asked him what his “butterfly” was (his favourite part of the day) and he told me that it was playing the Wii (no surprises there). Then I asked him about his cockroach (not so good thing that happened that day) and he told me that it was the shopping centre that we went to that morning to have a coffee together as a family. It was too noisy and smelly apparently.

And then he started giggling so I asked him what he found so amusing. He looked at me and said: “Mum, every time we play the butterflies and cockroaches game I have to try not to laugh”

“Oh” I said surprised. “Whys that?”

“Because one of the butterflies that I can see flying around my head always bumps into the other butterflies. And it’s funny.”

I was surprised but really curious to learn more so I asked him; “Do you see a cockroach in your head too?”

He nodded and said: “Yep, he is really tall and has a walking stick and sits down next to me. He is really grumpy and shouts at the butterflies.”

We laughed together and I decided to explore further because I was fascinated to learn that my boy – like so many other individuals on the autistic spectrum – can truly see in pictures!

I asked him if he gets a picture in his head if I say the word ‘car’ and he nodded. So then I asked him if it was Mummy or Daddy’s car that he pictured and was astounded by his response. “It’s not anyone’s car Mum. It’s a car that my brain made up. It’s blue and white. It’s the same picture I see for the word ‘car’ every time.”

So I thought I’d take it further.

“Harley, what do you see if I say the word ‘Volkswagen’? Do you see that same car again?”

“No”. He said. “I see an empty box with a big question mark over it spinning around and around because I don’t know what a Volkswagen is”.

Wow. I knew I was onto something so I dug deeper and asked him: “Do you see a spinning question mark a lot?” 

He nodded. “Yes, every time someone says I word that I’ve never heard before. It is what I see when I don’t understand what the other person is talking about. I hate it when I see that question mark. I feel stupid and that’s why I sometimes get angry”.

I was even more amazed by now! I tried again: “Harley, when I say the word ‘kitchen’ do you see our kitchen or someone else’s?” I asked.

“I just see a big white area with a sink and a lady flipping pancakes on the stove”. He said. “I don’t know who the lady is so I call her kitchen lady”.

“What about if I say ‘dog’. Do you see the same dog every time?” He nodded. “What kind of dog do you see?” I asked him.

“A Chihuahua. Because they are small and don’t frighten me” He explained.

I also learned that when he hears the word ‘pool’ he sees a big empty blue hole in the ground with a person standing in it. There is never any water in it because the word ‘swimming’ pool has water but ‘pool’ doesn’t! And then he told me that when he is in the school playground, he sees pictures on lots of different TV screens.

“Sometimes when I’m playing with *Ben, I see myself on a big screen and I’m standing behind myself watching what I do. And because there are lots of other kids around too, I see them all on smaller screens. But they have all got the sound turned up too high and are all on different channels to each other. I can’t understand what any of them are saying and they all try to be louder than each other and I can’t work out how to turn any of them off so I have to run away.”

By now my mouth was almost hanging open! This was a massive revelation to me!

“And”. He continued “At church time at school, it’s like there is one screen for me with a question mark spinning around inside it and everyone else’s screen doesn’t.  If it is too loud or too confusing for me, I see myself inside my box hugging my teddy and he listens to all the noise for me so I don’t have to.”

I had been dying to ask him about how his brain goes when people talk to him really quickly. I know from experience that he doesn’t cope with information overload so I was curious to find out if he had developed a technique to overcome this.

“So Harley” I started. “When Mummy or somebody else talks to you and uses a LOT of words, what do you see in your head then?”

He sighed. “Well, when they first start talking, my brain shows me pictures of what they are saying and then before I can join the picture together to understand the sentence, they have already started a new one. It’s so frustrating so now I only answer the bits that I hear and understand.”

He followed with: “You are good at this now Mum, you know that I can’t do that and you wait for me”. (I think he meant  that I wait for him to “process” before speaking more). And yes, I do!

I smiled down at him and he reached up and gave me a butterfly kiss on my cheek with his eyelashes. He then giggled and said: “Mummy, that butterfly won’t get lost and bump into other butterflies. It is in my eye so I’ll always know where to find it. “

He looked back at me and stated:  “I love you Mum, I’m tired now so please go away now”.

Amused at his ability to be brutally blunt but charming at the same time I smiled and pulled the blankets up on him, kissed his forehead and ran to get a pen and paper so that I didn’t forget any of this.

My kid – like ALL kids and adults with autism – has a truly remarkable brain. He is definitely teaching me more than I could EVER hope to teach him. He is wonderfully wired and I wouldn’t want him any other way.

Ten ways to spot autism in a crowd.

Children on the spectrum often like things that are repetitive like spinning tops.

I am often asked the question: “What does autism look like” or “How can I tell if a child has autism” and the simple answer to those questions is “You can’t”. Because autism doesn’t have a particular ‘look’ but is detected by observing behaviours NOT appearance.

Autism is often referred to as the silent disability because there is no wheelchair or defining facial features to help identify it at first glance.

But if you know what you’re looking for – its not as difficult to recognise as you might think. It’s important to me to share this because the more that society is taught about differences – the greater the acceptance and tolerance levels toward children and adults on the spectrum for the future generations. So I are condensed a lot of information here into ten short points that may indicate an autism spectrum disorder.

The first rule of thumb in possibly identifying autism is;

ALWAYS GIVE THE BENEFIT OF THE DOUBT.

Whenever you see a child who appears to be odd or quirky or if their behaviour is not quite right-even if you can’t put your finger on the possible reason or see any other indicators of a disability, assume that there is more to the situation than meets the eye.

For example: If you see an older child having a tantrum in public then it’s usually safe to assume that there is something else going on here. Generally, kids are too embarrassed to pitch a full blown tantrum past the ages of 5 because they have enough self-awareness to know that people will stare at them. But not in the autistic child because often they are simply unable to contain their emotional and sensory overload and it is no longer a matter of choosing whether or not to hold it in.

That’s not to say that older children don’t have tantrums, but in an older child, a tantrum in public is usually much more subtle. These tantrums are designed to get their own way without attracting attention to themselves. Like kicking a shop display, or mumbling insults under their breath or sulking and refusing to do what they’re told. But not flailing and screaming in front of dozens of onlookers.

And in an autistic child, what may start as a silly little tantrum can quickly escalate into a full blown meltdown if they are unable to make themselves understood. Usually something has triggered this tantrum and if its not nipped in the bud it can get really messy really fast. Autistic children cannot control these meltdowns and are unaware that they are causing a scene and giving into them wouldn’t end the yelling whereas in a tantrum – it would.

Some children on the spectrum can’t handle loud noises

But back to spotting autism….

Let’s imagine that you are in a playground and you know that there is an autistic child playing in there but have no idea which one it is. What would be the first clue that you would look for?

For me, spotting that child would be as simple as looking for the one who seems to be on the outer.

1. BEING ALOOF:

The child who either plays alone or is trailing along behind the other kids desperately wanting to be included. It’s often wrongly assumed that autistic kids don’t care for other kids but often it’s just their underdeveloped social skills and lack of social intuition that are holding them back. Most of the time they desperately want friends but don’t know how to initiate conversations or interact with other children. These kids don’t read body language or facial expressions and may not understand if another child gives them the ‘leave me alone’ face. Children on the autism spectrum learn by mimicking their typically developing peers and you would be looking for the child who is ‘following’ rather than leading the group.

However – in some of the higher functioning children (Aspergers Syndrome especially) the child may actually be the ‘life of the party’ and come across as obnoxious, precocious, loud, inflexible and unreasonable. But it’s important to remember that this is not a character flaw – it’s indicative of their under developed social awareness. They just want to be included but don’t understand how to do this in a socially acceptable manner. Either way – the child has a definite “quirkiness” about them.

2: REPETITIVE PLAY

Children with autism may also indulge in a lot of repetitive play. They may sit and watch the spinning of a wheel for a long time or continue to retrace their steps and repeat the same actions over and over again never seeming to tire of the monotony. That’s because children with autism enjoy getting the same result every time and take great comfort from being able to predict the outcome in an otherwise unpredictable world. These kids may also group items together or line them up. Example: rocks in a line in a sandpit or leaves sorted into colour shades.

3. EYE CONTACT

A child who has autism will rarely make eye contact with strangers or with other children. They can sometimes appear to be ignoring you but this is rarely the case. I’ve been told by autistic individuals that they are unable to look at people when they’re spoken to because it confuses them and they have to stop listening in order to look. They say that looking in people’s eyes is frightening unless they know , love and trust the person talking. Often times a child with autism may become mute when a stranger speaks to them because they cannot form the correct words whilst their brain is in freak-out mode.

4. TOUCH

If a child is in fact on the autistic spectrum, they may react if they are touched, hugged or accidentally brushed up against in a playground setting. They may strike out at another child who playfully pushes, taps or attempts to cuddle them as they sense that their personal space is being invaded. Because of this, they can wrongly be labelled as ‘rough’ ‘mean’ or ‘aggressive’ but really it’s just their self-protection mode kicking in.

Or….a child who under registers stimuli may do the exact opposite and be overly affectionate and not seem to recognise those invisible boundaries that we all have. Either way – the behaviours displayed here in these two scenarios are an indication that there is something bigger going on with that child.

5. UNDERSTANDING VERBAL CUES

These kids struggle to understand and comprehend instructions especially if they’re complex or contain too many steps. So you’re looking for the child who seems to be deaf or ignoring their parents or who doesn’t register that they’ve been spoken to immediately. The child may explode if they are unable to convey their wants and needs to their caregiver and become frustrated if they’re not understood by other children.

6. REPETITION

An autistic child may repeat (and mimic) the phrases that other children use or insert lines from a movie or tv show into a conversation whether it fits or not. This is called echolalia and it is a very common communication tool for children who are developing speech.

7. RULES

If a group of children are playing together and one of them changes the ‘rules’ or starts to play it differently, the autistic child may react with aggression or anger because they are not coping with change and suddenly become frightened at their lack of understanding. Autistic children thrive on rules and routines and require them to function peacefully.

8. SENSORY STIMULII

A child with autism may severely under or over react to noises, crowds, smells and sights. This is all due to their sensory system either being overloaded or under registering. Most typically developing children won’t notice subtle changes in noise levels or the sun getting brighter but you can bet your bottom dollar that the over sensory child will be the first to react negatively.

9. UNUSUAL COMPASSION

Children with autism usually always have an affinity with nature and with animals. They seem to have somewhat of a connection that most of us just don’t understand. The autistic child may be the one who prefers to lay down in the dirt with a dog or finds a lizard underneath a rock. They may also become upset and inconsolable if another child steps on an insect and go into bat for the poor defenseless ants that are crawling up your leg!

Every single autistic individual that I have met has got a very gentle nature and a sensitivity to all forms of life that most of us could really only dream of.

10. DANGER AWARENESS

The last thing to look for is the child who has no apparent fear of danger or consequence. And this goes beyond the normal ‘rough and tumble’ boy stuff. These kids have an underdeveloped sense of caution and just don’t see the risks that most other children would instinctively notice. Look for the child climbing up the flying fox or jumping off the top level of the climbing structure or – *gasp* running onto a highway to get to the shiny object that has caught their eye over the other side.

Autism really is beautiful. It is almost magical and it is extremely rewarding to live with. But how do I know this? I and the mother of two boys who have autism and they have taught me so much more than I could have ever imagined.

Because of them, I now appreciate the smaller things that most folk often take for granted. I am learning to look for beauty in the most unlikely places and I no longer take anything at face value.

Let me encourage you all to dig deeper, invest into those “different” people in society and you will always find that it was more than worth the effort.

Onwards And Upwards My Friends…

I realised yesterday that my perspective has shifted a lot in the past few years and my mother’s intuition has been fine-tuned a lot more than it has ever been in the past. And this new perspective has helped me to view an incident that occurred yesterday in a brand new light. In fact – I was able to turn the negative into a very big positive and it’s the little things like this that keep me motivated.

By now most of you would know that I am currently staying up at my Mum’s with the children as school doesn’t go back until the end of the month. There is a ten day festival going on up here at the moment which is great for families and gives us all something extra to do at very little cost.

The entire main street of town is closed off for about 4 blocks and the streets are lined with performers of all varieties. It runs day and night and does include a lot of loud music, huge crowds and a lot of different smells, sights and new experiences. (Which I’m sure is a sensory overload NIGHTMARE if you have autism).

So bearing that in mind, I have given the boys headphones and chewy toys and have tried to keep the exposure to the festival minimal and closely monitored, however yesterday – despite my best efforts, it came close to ending very badly indeed!

We went to church in the morning (If you know anything about Pentecostal churches is usually very loud, crowded and in your face), and then we met some friends for lunch. Afterwards we decided to go into town and go for a stroll down the street to check out the action. I watched the boys closely and they seemed to be doing wonderfully. I smiled to myself because a few years ago we wouldn’t have even have attempted to do all of those things in the one day let alone attempt an event like that!

I realised our progress and started to relax a little and enjoy myself. I stopped to listen to a few bands and chatted with strangers and just had a really great time. We walked another little distance when we passed a performer with a very loud microphone and a huge crowd of people gathered around clapping, dancing and watching.

I stopped with Mum to have a listen for a few minutes until I saw Harley freeze……he stopped dead in his tracks, clapped his hands over his ears and tears started rolling down his little face. He looked up at me with his eyes pleading and said: “Mummy, there is too much loud, too much people…I need to get out, I need to go home now”….

So I grabbed his hand and dragged him into the closest shop and sat him in a quiet corner on the floor wrapping myself around him while covering his ears. I held him tight and he eventually relaxed into me saying: “Thank you, thank you Mummy, you are the best Mummy ever”.

I sat there and went through my options in my head. Our car was up the other end of the street and we’d have to walk about 2 blocks to get back to it…..that wasn’t going to work…..I spoke to Mum and we decided that Ella and I would walk back to the car and I would drive as close as I could to this shop and pick up Harley, Lucas and Mum. It worked brilliantly and peace was restored for another day!

And when I got home again, I began to think the whole thing through in a bit more depth. I started to mentally list all the areas of progress in my head.

1. Harley handled an entire church service in a new environment with people he had never met previously.

2. We went for lunch in a place that he’d never been before.

3. We were able to walk 2 whole blocks before Harley showed signs of not coping.

4. Harley not only recognized himself that he wasn’t coping but he was able to communicate that to me without screaming and melting down. He was able to use some of the anxiety coping techniques that we’ve been teaching him WHEN HE NEEDED THEM and for me….this is HUGE progress!

A few years ago – he wouldn’t have been able to let me know that he was close to losing it….he wouldn’t have recognized that split second and make the decision to ask for help – he would have just exploded and I would have been angry at myself for not reading him better and the rest of the day would have been a write off because coming down from a mammoth meltdown can take literally hours! Not to mention the fact that it drains him as well as us.

Harley didn’t reach the point of no return yesterday because it was nipped in the bud so to speak. Afterwards – told him how proud I was of him for using his words. He is doing remarkably well at learning that if he talks about something that I can then help him. (This is a phrase that my dear friend has been drumming into him for a while now). I’m seeing so much exciting stuff going on with him (in particular) lately that it warms my heart.

And lastly – I want to say to any parents of younger kids who seem to be massively unpredictable and hard work at the moment…..go back and read some of my earlier posts and read about the struggles I had with Harley only 3 years ago. I remember parents of older kids telling me that ‘it will get better’ and I didn’t believe them. I couldn’t believe them.

But you know what? It does, it really does. It may only be small things at the moment but combined with all the other ‘small things’ from the past (almost) 3 years since I started this blog – they all add up to massive progress.

And its only onwards and upwards from here…

Still So Much Good Stuff To Come…

Me and my loudest child. Still not louder than me though

I’ve always been interested in people. I love all those little online personality tests and quizzes and love to learn about what makes other people tick.  I’m your typical sanguine – always wanting to be with people and not enjoying my own company very much. In fact – I pretty much hate being by myself – I get bored and need the people-to-people contact every day or I start to nosedive emotionally.

I also think that part of the reason why God gave me the kids that he did is because he knows how much people fascinate and interest me and he knows that I am the kind of person to dig deeper until I’m satisfied that I’ve learnt all that I can learn. Autism definitely adds a whole other layer to my kid’s personalities and a lot of the rules for typically developing kids don’t apply when you start to throw nuances like : sensory issues and still-developing social skills into the mix.

I have written a few times before about The Five Love Languages and how they helped me to better understand why Paul can be such a pain in the butt sometimes.

  Whoops! Did I really write that?

What I MEANT to say was that learning about love languages helped me to realise that he does in fact love me but doesn’t (even close to) speak the same love language that I do.

In a nutshell – There are 5 languages.

1. Physical Touch (not sexual)

2. Words Of Affirmation

3. Quality Time

4. Giving and Receiving Gifts

5. Acts Of Service

And everyone has a primary love language and usually a secondary one or two as well. They are the way that we show others that we love them and what makes us feel loved the most.

****

For example: My primary love language is Words Of Affirmation with physical touch and quality time following closely behind. That means that I give love via what I speak and write to people. I am more aware than a lot of people of the absolute power that words can have on a relationship in either a negative or positive way. The best way to hurt me is to ignore me, use harsh or insulting words to speaking to me or to withhold kind and encouraging ones as well. I am careful what I write or say to people because of this.  I am also a big hugger and I love to spend time with my friends.

 (And amusingly enough – I hoped to churn this post out a few hours ago but I got waylaid by chatting to a friend making this a perfect illustration!)

But tonight’s post isn’t going to be about marriages, or any type of adult relationship but about my kids. Specifically about my relationships with each of them and how the love languages apply to them individually. And lately I’ve spent a lot of time peeling back the layers of my children’s individual personalities to try to discover the best and most effective ways that I can love them.

Ella’s primary love language is Quality Time which actually makes me sad because the boys tie me up so much that it’s often hard to give her much of it. But we have been consciously making the effort to go out on Mum/daughter days a lot more often than we used to. The downside is that she is at risk of feeling unloved if she doesn’t get enough quality time with either of us. There’s always room for improvement though and I am determined to give her what she needs.

Harley was a no-brainer for me. He is exactly the same as me – Words Of Affirmation and Physical Touch. He loves his cuddles and a compliment can make him float for days. Conversely though, like me – he also gets extremely hurt by unkindness and needs to be built up very frequently. Things that other kids could just shake off can stay with him for a long time and can do a lot of unnecessary damage.  I understand the love languages side of Harley the most out of all of my kids but I am also regularly confused by how differently it presents on him compared to me. I think this has something to do with his wonderfully wired brain and how differently it processes things but I’m still working on figuring this one out.

And then there’s Lucas. He was a particularly difficult one for me to figure out. I had to do a number of quizzes on him until I had what I considered to be the correct answer but even now I’m still not 100% convinced.  I asked him to tell me what I do that makes him feel the happiest and most loved.

I put it to him like this:

Would you prefer:

1. A cuddle and kiss? (Physical Touch)

2. A new toy (Giving And Receiving Gifts)

3. For Mummy to tell you how proud she is of you (Words Of Affirmation)

4. Mummy to spend the afternoon playing Trashies with you (Quality time)

or

5. For Mummy to clean your room up and make you a cake? (Acts Of Service).

He answered that a hug would be his favourite which interested me for a few reasons. Firstly because it was the very first scenario that I put to him (and perhaps the only one that he actually heard and processed) so to get a definitive answer, I put different scenarios to him mixing up the order each time, But each and every time – it was Physical Touch that won out. The other reason that this surprised me was because every time that I hug Lucas – he only stays in my lap for mere seconds before jumping off again in another Tiggerific  bouncing episode.

So now – I’m wondering how much of a part that both of the boy’s sensory processing difficulties play in the way that they give and receive love and how much autism affects their ability to feel loved and safe when they need it most. I’ll explain further:

When Harley becomes overwhelmed by too much noise, too much light or by strong smells – he can’t stand to be touched at all and he becomes aggressive and sometimes violent and screams out the most awful things.  And it’s the same when he’s in the middle of a meltdown.

He has described to me on a good day that when people try to talk to him when he’s in that state that the human voice aggravates and irritates him more than any other sound. I find that incredibly fascinating. Especially since any other time – Harley  is incredibly affectionate and very generous with his hugs and kind words.

And Lucas – well he is similar to Harley in that he also cannot stand to be touched if he’s overwhelmed or melting down – and he says that the human touch actually  makes his skin feel like its burning. But here’s what I find amazing – As Lucas is coming down from an episode – he  is OVERLY generous with hugs and climbs into my lap and wraps my arms around him refusing to leave.

So the things that bring them comfort and calm them on a good day are actually the same things that can escalate an explosion on a bad day.

***

I already have huge amounts of much respect for all individuals on the autism spectrum but now: WOW!  It has gone up a few hundred notches. I’m sure that there are bundles and bundles of undiscovered information and so many more layers to peel back still for my children and  I know that I have SO much more to learn about all of this.

The exciting part?

It has become like a neat little project for me….. Bring on 2013!

Wordpower

When I was growing up, I only had one sibling. My sister is 14 months younger than I am and was in the grade below me. With us being so close in age, it was common for people to compare us. (But not our parents, they treated us as individuals.)

My sister was always is smart.

She did really well at school and went on to study graphic design at university and more recently floristry.  She is incredibly talented in all areas of design and her home regularly looks like something out of a magazine.

I on the other hand completely suck at every aspect of design and couldn’t colour match anything to save my life. And I don’t particularly care for it either.

For me school was difficult, frustrating and mind-numbingly boring. I used to turn up every morning in grades 11 and 12, get my name marked off and then walk to town to go shopping for the day. (And oh-wow did my grade 12 marks reflect this! )

Academics wasn’t and still isn’t my thing. All I ever wanted out of life was to get married and have a family, she always had a career in

This is me in grade 12. Complete with a chip on my shoulder…

mind.

I remember my grade 10 math teacher standing me up in front of the class and humiliating me by pointing out that my younger sister was able to do the maths problem that I couldn’t and asked me what was wrong with me. The whole class laughed at me and from that day onwards I never turned up to his math class ever again.

And he wasn’t the only teacher who I had trouble with. My geography teacher hated me and went out of his way to make my life hell for years. It all started because of a class discussion on evolution and he asked me what I thought …… so I told him.  He opposed the creation beliefs that I have and disagreed with me about absolutely everything from that day onwards. Publicly.

Then 4 years after leaving school I returned home to live for 3 months while I moved from one capital city to another. I moved in with Mum and Dad to save money and worked as a waitress in a local café. One day this teacher came in for lunch and gleefully jibed me in front of his friends saying: “Well, well well….I knew you’d never make anything of yourself, and look at you now. Serving ME coffee!”

Those comments have now stayed with me for over 21 years and although I’ve forgiven them both, I have seen them down the street a few times over the years when I go home to see Mum.  I still smart when I lay eyes on them and the reason I still get a reaction is because words have power.

And words spoken over or to a child can have either a devastating or uplifting effect.

(The tongue has the power to bring with it life or death – Proverbs 18:21)

I spent my school years feeling like a massive failure because my sister did so well. I felt like I was an embarrassment to my parents so I clowned around instead. But I can honestly say that I was ALWAYS proud of my sister whenever she did well. I was excited for her and thrilled when her university offer came in. By then I had realised that higher education wasn’t for me because I HATED the thought of studying anything. I made my peace with being the loud and proud goofy sister instead.

My Lucas is a textbook aspie. He has the high intelligence, the amazing vocabulary and the hyper-verbal speech. He is excelling in all areas of his schoolwork and is amazing us with what he is achieving. He’s like a mini Sheldon and what most people think of when they hear the word: Aspergers.

I can’t tell you the number of times that people have reminded me that Einstein, Isaac Newton and Beethoven are all suspected to have had aspergers traits and then follow up their observation with “See, your child is going to be brilliant one day”. (Like they need to convince me that my child is going to succeed DESPITE their diagnosis).

But then I have Harley. He is not the classic aspie. He struggles with almost every aspect of schooling from reading and writing through to socialising with other kids.

He puts so much incredible effort into just BEING in school that there’s not much energy left for learning. Add to that his difficulty coping with noise, crowds and variations in temperatures and you have a child who is constantly being subjected to pain and discomfort. His sensory processing issues are through the roof most days.

It’s like forcing ME to go cold turkey on caffeine and then sticking me in a room full of children for 6 hours because being a teacher is MY idea of hell)……I would NOT do well under those circumstances yet Harley faces this kind of discomfort AND MORE every.single.day and he does it with grace.

Harley doesn’t fit the mould of “typical aspie” that is so often assumed on him and the label does more damage to his personal opinions and expectations of himself than anything else.

And I know that comparing my boys and their abilities is not only stupid but incredibly dangerous. And  I am no longer hurt or angry at my high school teachers because I truly have forgiven them but I still remember both instances very clearly. That’s why words have to be so carefully chosen before uttering them.

My boys both have wonderful teachers who speak only the very best over my boys and because of that, I know that they will do well later in life. And that brings me great hope.

But it’s not all bad. My own high school experiences have made me a better mother. I know the effects of negative comments and off-the-cuff remarks so I am super careful to watch what I say to them lest they carry around baggage like I did.

And now that I am an adult , I realise that although my sister is so much better me academically, and in design – I also know that I am much better than her in other areas.

And this is what I am trying to teach my children.  Everyone has different and unique abilities. We are not all made the same way and no-one is good at everything.

Last night was the junior school presentation night. I had suspected that Lucas might do well because of the glowing reports we have been receiving all year whereas conversely, I also knew that Harley has struggled a lot.

And I was thrilled when Lucas earned the medal for Excellence in Mathematics. He stood up on that stage proudly smiling from ear to ear while everyone clapped. And I was sad for Harley when I watched his disappointment at not receiving an award but I knew that as rough as it seemed – it is a necessary part of learning about life.

Paul and I rock-paper-scissored each other to decide who was collecting which child at the conclusion of the night because we could tell Harley was borderline and knew it would be hard work. He won the match so I headed over to the row Harley was sitting in and he ran towards me and punched me in the stomach. He then head-butted my arm and kicked me before throwing himself down on the chair beside him. He wasn’t happy at all.

He didn’t do a very good job of hiding his disappointment so I sat quietly beside him to let him get it out of his system. Finally he looked up at me with tears in his eyes and said: “I’ll never be as smart as Lucas, I’m such a dumb head”.

I stiffened and knew that I had a defining moment in front of me. I reassured him that he wasn’t dumb at all and that there were so many children that not everyone could possibly win an award. I listed all the things that he is great at and reminded him of his strengths. I pointed out that he wasn’t the only child in his class not to receive an award and assured him that I was incredibly proud of him because I knew how hard he had been working. I asked him to try to remember to be happy for his classmates who did win awards because that’s what good sportmanship is about.

At that moment I saw Lucas running toward me with Paul and Ella following closely behind.  I looked at Harley and said: “I know you’re sad right now and I do care very much but I have to tell Lucas that I’m proud of him because he deserves to be praised for his efforts.”

Lucas threw himself into my arms and I hugged him telling him that I was very proud of him. I glanced over his shoulder at Harley and was amazed and touched when he reached out and patted his little brother on his back saying: “Well done Lucas”.

My eyes filled up as I realised how huge this was for a child who is not only in the depths of disappointment but supposedly (according to some of the ridiculous literature out there) not possessing empathy.

Well, if that’s not progress and a perfect example of empathy I don’t know what it was!

It’s a hard thing to have to deal with sadness in one child whilst not taking away from or downplaying the achievements of another but I came home last night with a big grin across my face.

BOTH my boys did me proud. And it was an incredible night.

“Have you got a minute…?”

That was what I heard this afternoon as I was walking across the school playground, Harley’s OT had spied me and called out to me. She said she had been hoping to see me so we could ‘have a little chat’….

And this is where I need to tell you that I admit that I held my breath a little bit. Because usually when a teacher, aide or therapist approach me, it’s not good news and experience has taught me that I probably won’t like what’s coming next.

But not today. Because today she had a major breakthrough with him and wanted to share it with me.

For weeks now he has been turning up to his OT lesson without his workbook. She had said that she thought it odd that I had never packed it (it stays in his bag permanently) but then today it dawned on her what was actually happening.

She had a light bulb moment and couldn’t believed she’d missed it for so long!

As she usually does, she waits until he’d settled in his seat and asked him if he had his book with him and he (predictably) replied: “No”.

So then she asked him where his work book was and he replied: “In my school bag”.

So he had been answering her correctly every single week when the direct question “Do you have your work book here”? was asked. But it had never occurred to him to go back to his classroom and get it out of his bag! Such a simple thing that had been complicated by his difficulty comprehending verbal instructions or questions.

She also mentioned that he had been a lot more settled than in the past and enquired whether that was because the stress of the school year is almost over. I ‘casually’ mentioned that he has now been on medication for almost 2 months and her face broke into a smile and understanding was written all over her features.

She nodded and said: “Wow. What a massive change I’ve noticed in him, he is more focused, more agreeable and much calmer than I’ve ever known him to be. I think you made the right decision”.

And instantly I felt the validation that I needed.

Harley’s Paediatrician first suggested the medication route a few years back but I was adamant that I wasn’t going to drug my child. I dug my heels in and determined that I would somehow ‘fix’ his anxieties, aggression issues and OCD tendencies myself.

But I couldn’t.

I eventually had to admit that it was over my head and ask for help.

Since he has started seeing his psychologist combined with the pills, our family life has improved dramatically.

Beyond description.

And now that he is able to gain more control of his emotions, he can actually apply the coping techniques that he has been taught previously before he gets completely overwhelmed.

So its a win-win as far as I’m concerned!

His teachers have noticed a positive change in him too so I’m even further and further away from beating myself up about medicating him.

I feel like I have my little boy back. The one that has been buried underneath layers of angst and fear for 9 years. I see joy in his eyes and happiness more often than ever before.

But please don’t get me wrong – I am not touting a magic cure-all pill for autism. (In fact I’m not ever dipping my toes into THAT murky pond) and I am definitely not advocating for going the medication route because choosing to medicate your child is a very personal decision and it will never be for everyone.

We have been under a remarkable Paediatrician whom I trust implicitly for years now and we weighed up ALL options over 3 years before deciding to bite the bullet so to speak. So this wasn’t a hasty decision at all.

Harley still has and will always have autism. We are just addressing a common symptom of ASDs. I am aware that this is a touchy subject with some folk but I’m simply writing about our family and our experiences and I won’t apologise for doing the best that we can with what information we have available to us at the time.

I love my kids and I want them to be the best that they can be.

I want to see this smile as often as I can. He’s just SO cool isn’t he!

Wordless Wednesday 7 November 2012

Do you know how much self control he exercised here?

One Mum’s trash is another Mum’s treasure :)

Yesterday, Ella and I went to church together and left the boys at home with Paul because sometimes, it’s just not worth the fight. I sat with my dear friend *Hope and as usual, she blessed me with her wisdom, her compassion and her desire to help other people.

We were sitting behind another friend who had her little boy with her who was getting a bit restless so Hope rummaged around in (what we call her Mary Poppins bag) and produced some paper and coloured pens to draw with. She drew an upside down cat and encouraged him to draw too.

The little boy’s Mum sat down beside him and also tried to get him to draw and eventually he picked up the pen and scribbled all over the cat! I giggled and pointed it out to Hope and she smiled and said: “It doesn’t matter – he’s engaging with his Mum, that was the whole point”!

Wow!

Hope probably doesn’t realise what that tiny comment meant to me or how the words rolled around in my head for the following 12 hours or so!

“Engaging with his mother”. I just couldn’t shake it!

I thought about my relationship with my own kids and knew that when it comes to engaging them – I rarely do. And that’s not because I don’t know how to, or because I don’t have the time to, but because most of the time: I don’t want to.

That’s right, I don’t want to……..I’m over it. O.V.E.R!

Most school afternoons I am exhausted within half an hour of collecting the kids from school. The constant yelling, running, jumping, flapping, bouncing and spinning mixed with mindless chatter and monologue-ing just about does my head in. I often develop a headache around 3pm and tense up and usually end up putting myself in a time out!  I go into my bedroom and sit on my bed, (or in my wardrobe on the more desperate days) and escape the chaos for as long as I can get away with it!

I’m not really that clueless though – I do know that my kids need to decompress after a long day at school and that they require some sort of loose routine to help them to do that, but organising and scheduling does not come easily to me at all. I fight it a lot more than I should.

But I cannot just tell my kids to “go play” because they simply don’t know how to.

For a child who is developing typically, they are born with play skills that are flexible, spontaneous, creative and also voluntary. Playing comes naturally to them and it’s how they learn about their world. Play teaches children how to self-amuse and be independent when they need to be and helps the child to build confidence in themselves and their abilities.

But, children on the autism spectrum often need to be taught how to play. It sounds strange I know, but children with an ASD often have repetitive, non-functional and rigid play with very limited interests. Because of this they struggle to learn skills to help them to socialise with other children and they don’t instinctively know “how” to play make believe type games. (This is why it’s difficult to engage with children on the spectrum and in my son’s case – why he often explodes in anger because he can’t figure out what he needs to do next or how to do it!)

There is hope though. The best way to engage a child on the spectrum is to find out what they are interested in. Find out what makes them smile, what excites them and what makes them feel safe. And then use that interest to engage with them and teach them necessary life skills through play.

At the moment – both of my boys are mad about Trashies! (Trash Packs).

The trashie army

Our house has been overtaken by them, and a dear friend often buys the boys new ones as rewards and incentives. So this afternoon once we got home and wound down a bit, I asked the boys if they would “help” me to sort the Trashies out.

I asked them if they could help me to put them all in groups of the same colours and to help me to figure out which group had the most Trashies in it and which one had the least. Of course they were in their elements because this type of activity is well documented as being something that ASD children love to do. Grouping things, lining them up and organising are all known to be comforting to individuals on the spectrum. So ‘together’ we sorted them all out.

Because I was playing alongside the boys and not talking to them face to face, they were comfortable enough to tell me about their days at school. They were super-focussed on arranging the Trashies and there was not one single harsh word spoken between them the entire time. This alone is HUGE progress because when you have 2 sons on the spectrum and NEITHER of them possessing very good social skills, play skills or knowing how to play independently – there is always a lot of fighting going on. But not today!

Next we counted them by colour, did some basic adding and subtracting and ‘invented’ conversations between the different Trashies. It was wonderful to see them getting so involved and the sneaky maths homework proved a winner too! (hehehe).

Most days I curse those little trashes that are strewn all over my house and usually I cannot go into a single room without finding one of them on the floor but after this afternoon, I have started to see Trashies in a whole new light!

Granted it only lasted ten minutes before Harley started begging for the TV and Lucas for the computer but it was ten minutes longer than yesterday. And I hope to increase that play time over the next few months as I continue to find new and exciting ways to engage my children.

So for  now….I’m keeping some of the trash INSIDE the house.

* Hope is not her real name, but she is the same friend that provided my boys with these wonderful grubby little treasures…She has brought us much hope hence the pseudonym ♥.

This. Is. Our. Life.

I have a few friends who are at university at the moment. They all know that the next few years are going to be pretty full on but they throw themselves into their chosen field of study because they know that at the end of it – they will be one step closer to achieving success. They know that the sacrifice will pay off eventually and it will all be worth the hard work and long hours.

So my friends make the wise decision to arrange their social life around study and learn to turn down invitations that either conflict with their upcoming exams or might possibly eat in to their necessary research/study time.

They become super-focused and their course seems to completely consume them and be their main topic of conversation. They know that if they were to fail an exam or a unit that it wouldn’t be the end of the world but that it would put them one more step behind and that to catch up again it would require double the effort and time. They know that it’s just not worth it.

They know better than to push their responsibilities to the backs of their minds in favour of having a good time now. And they also know that it won’t be like this forever so they push through so that they can not only succeed but also flourish.

I admire them so much for their dedication and resilience.

It’s been suggested to me that I spend too much time thinking about autism and talking about autism and researching/reading about autism and that I would be better off spending the time that my children are at school doing something - anything that is separate and unrelated to autism. Because apparently – I have allowed autism to consume me and allowed it to depress me, and that it has made me not a very fun person to be around.

And I understand why people would think that way but honestly, as unfortunate as it is that I’m seen that way: I know that this kind of thinking only comes from those who don’t live a life like ours.

And explaining it to people who already have their minds made up about what they think autism should look like or how much time I should dedicate to it daily is as futile as explaining what childbirth feels like to a man.

People can empathise, they can say all the right things and read all the right literature that they can get their hands on, but they will never ever truly understand it unless they live with it 24/7 as we do.

We were never given the option to ignore autism or downplay the difficulties that it often presents because this is our life. We aren’t afforded the same luxury of pretending that it isn’t really all that bad. Honestly: I would seriously LOVE to step away from this life for a few hours a day but I know deep down that to do that I would be putting myself in a position where I would surely fail the afternoon exam.

And yes, like a Uni student who chooses the good life over responsibility – life wouldn’t come to an end – there wouldn’t be an unrepairable problem if I laid off the intensity, but it would definitely put me further behind in the sense that I would be unprepared and ill-equipped to deal with what may or may not be thrown at me.

Life with autism isn’t a series of multiple-choice questions that you may be able to fluke and guess all the right answers to. Autism is extremely un-predictable. And autism is a life-long neurological disorder – not something that will be over after a few dedicated years of study. Information regarding autism and helpful strategies is ever changing and rapidly advancing and I don’t want to just scrape by in these life exams – I want to get high distinctions and really know my stuff so that I can give it my kids my absolute best shot. I owe them that!

I don’t ever know what kind of drama I’m going to get as I drive to school each afternoon to collect the children. It is usually intense and it highly overwhelming but it is what it is so I need to be prepared.

***

And while I’m on this subject, I’d like to ask how many of you have met my youngest son Lucas?

See this little brown eyed smiley boy? He is 6 years old and thriving in his very first year of school. He is reading and spelling above his age level and is an absolute delight to live with.

He was diagnosed with Aspergers Syndrome last year, which places him on the higher functioning end of the autistic spectrum.

In fact – his presentation of autism is so mild that I honestly don’t know if I would have even have noticed his quirks at all if his older brother wasn’t already diagnosed and I therefore knew which indicators to look out for.

Lucas has only ever had one meltdown in the supermarket. I can take him almost anywhere without a problem. He is obedient, agreeable and generally unaffected by loud noises, crowds and a lot of activity, He doesn’t require the same level of routine and structure that his older brother does and he transitions to new situations extremely easily. He is generally an absolutely easy child.

And a lot of families have a child with autism that presents in a similar way to Lucas.  There are a lot of kids just like him out there and that’s wonderful!

But unfortunately, there is a huge misconception that all children on the spectrum are like Lucas and that parents like me who write about major supermarket meltdowns, screaming matches, violent behaviours and family crisis are just trying to extract sympathy at the expense of their children.

We are accused of painting an incorrect and highly inappropriate picture of autism and that we are a disgrace to the autism community. That we are cringe worthy even.

And I understand that. Honestly I do. Because if both of my boys were like Lucas, I would probably also feel the same way were I to read one of my blog posts about a day in the life of Harley. If I was only blessed with a quirky child who didn’t struggle with every little part of the world that they are forced to live in – I can understand that my writing seems overly woeful and self-focussed.

But you see, we also live with a completely different and more difficult presentation of autism as well. We have Harley who is plagued by anxiety, major sensory issues and OCD and I know that there are also a lot of parents out there who deal with a child who presents exactly like Harley. They would love to have a Lucas but instead they deal with a lot of the same stuff that we do.

These parents are also misunderstood and judged both by their peers and families and even sectors of the autism community and also know that unless you live with the major strife, angst and tension that we all do –you really have no idea and therefore no right to pass judgement. Yet they are judged. Frequently.

These are the families that I mostly write for. These parents who throw their hands up in the air screaming “WHAT NOW” every time a new hurdle presents itself. These parents who are at their wit’s end trying to stop their family from crumbling before their very eyes and these parents who would give anything for a full night of sleep.

These are the parents who write to me thanking me for showing them that they are not alone and that there is hope and the families who also endure harsh judgements and well-meaning but hurtful advice.

Truthfully: we honestly thought that by age 9, our son would have grown out of the major meltdown stage. But they don’t seem to lessening in frequency or intensity and we thought that the older that he got – the easier that he would become because EVERY ONE kept telling us that.

But you know what? He’s not! He’s really not! Sure there have been major breakthroughs and massive progress (all which I’m truly grateful for) but when you’re looking at the bigger picture we still have a very long way to go.

And at the end of the day it has had to come down to this for me. (And I apologise in advance if this comes across harshly as it’s not my intention):

If my writing and my accounts of our life offends, upsets or annoys you – by all means, click on a different blog. I cannot write about someone else’s reality, I can only share things as I see them. I do not write to cause controversy, I do not write to sensationalise my life and I definitely do not write in an attempt to procure sympathy for myself by describing every single supermarket meltdown.

This. Is. Our. Reality.

If you think I write unrealistic descriptions of autism as YOU know it, you are allowed your own opinions and I will probably never change your thinking so I’m not going to try to. But I’ll leave with a quote from one of my favourite writers Stuart Duncan who is a father of a child on the autistic spectrum because it pretty much sums where I’m coming from perfectly.

  “Autism is not an opinion, It is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me”.

Why it’s dangerous to put children in boxes…

Sometimes my Harley puts himself in a box

I have observed that children with autism are usually placed in one of two major boxes.  (There are many smaller sub-boxes but these are the main ones).

(1) The high-functioning kids are generally placed in the “He will be ok, nothing to worry about here, it’s only a minor diagnosis, they will do just fine” box and their parents are often assured that there’s nothing to be concerned about,

(2) And lower-functioning kids are often wrongly placed in the “Give him a happy life because he won’t amount to much” box and the parents aren’t given much hope.

And both of these boxes are so wrong on so many levels and neither of them takes into account the lengths that parents will go to to prove them incorrect.

When my son was first diagnosed with high functioning autism, people often said things like: “Oh he’ll be ok, my_________ (insert distant relative or friend of a friend’s child) has aspergers and they are the top of their class. Your son will grow up to be a genius, you’ll see”. (And in saying this they were totally disregarding my son’s invisible struggles based on some other child’s experience).

Or “Really? He ‘looks’ normal to me”. (As opposed to abnormal? Really?)

And of course: “My (friend whose mother works with a man whose cousin’s neighbour has autism) says that the best thing to do is…” followed by a long list of various supplements, vitamins, diet changes and medications because it worked for “that” child.

And I have had many other similar comments.

My personal favourite is: *Sigh*: “Make sure you give him extra love” (Like I was going to abandon him or something because he was a write off? Seriously? Were they questioning my ability to love my own child or were they resigning him to the no-hope basket without even meeting him? Or were they implying that love would in fact conquer all?

I really don’t know!

But I do know that not everyone who says things like this has malice behind their comment. And I’m not making fun of anyone here at all because I totally understand that people say things like this for a number of reasons. Even I have said the wrong thing to people about their child before, but I have learned a better response now that I am a special needs parent myself.

I now say: “And how do you feel about this”.

Because then it provides a platform for my friend to tell me what they really think and feel, and I can avoid putting my foot in my mouth by saying the wrong thing. I follow their lead and show a genuine interest in what they tell me because I know how much they just need a friend more than anything else at that moment.

Bumper sticker can be purchased at: zazzle.com

I also know that 9 out of 10 people had the best intentions when they said these things to me and I personally appreciated any attempt at consoling me but I have now realised that there are many reasons why people respond in ways like those.

Some may have been uncomfortable upon hearing the “a” word and they projected their own feelings about how ‘they’ would handle their child being diagnosed onto me.

Or they may have tried to alleviate their own discomfort by smoothing things over by saying something positive instead thinking that this is what I was looking for.  But they don’t realise how much I hate seeing pity in their eyes. It made me think that my child would have been a huge disappointment to them if they were the parents.

There are some who still believe that what we are dealing with is just bad parenting, and I’ve found that most of the time when you come up against people who think like this, I can’t change their mind anyway because they believe it so strongly. So usually, when I come up against this one: I just smile and walk away. I no longer waste my breath.

And sometimes, people comment this way because they are truly just tying to help and they really honestly don’t know what to say but they want to say something! And that is admirable.

But what really concerns me is when I am told that my child will do ok in life because ‘so-and-so’s child did and they have aspergers too’. Because by saying this, they are either (a) downplaying all of my child’s struggles that are often invisible and (b): making waaaaay too much of a generalised statement.

(And anyway – I already KNOW that my child will do well because I’ll be damned if I’m leaving anything to chance. And also because and what I consider successful and what society considers successful may be two completely different things anyway).

 

I am largely bothered when generalisations are made about individuals on the autistic spectrum because by making a general sweeping statement; you are lumping them all together and labelling them as a minority group.

Each individual on the spectrum is just that: an individual. They all share common characteristics and traits but each and every one of them is unique and gifted with different things. They are as varied as the sky is blue.

For example: My son is not a genius per say but he has a memory for Sonic facts that would rival even the manufacturers at Sega! But still, his IQ doesn’t place him in the savant category. Some autistic individuals are able to memorise entire chapters of books whereas Harley forgets a sentence two seconds after reading it but he is not dumb by any stretch!

Some children with autism have photographic memories whereas Harley does not but he can tell you exactly what he was wearing last Thursday after school. Different talents for different children. Similar in many ways but so very different at the same time.

Each of them brings totally different but equally as valuable things to the table so can you see why it’s wrong to place them all in the same box?

Image credit: autisable.com

Harley gets disheartened when the little girl in his class who also has a spectrum diagnosis does so much better than he does in exams, class activities and in the playground, because sadly: he has learned to compare like with like.  I am currently in the process of helping him to change his thinking in this area.

*
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It’s considered politically incorrect to tell a woman that she’s pretty ‘even though’ she’s overweight and most of us have the sense to not say something so blatantly rude, but when a parent of a child on the spectrum is told: “it’s such a shame about the autism, he is such a good looking little boy”…it’s the exact same thing.

Most parents will admit that at some time, they have compared their children whether deliberately or not. I have done it! I have seen major chasms between developmental milestones and huge differences in coping mechanisms, mannerisms and even looks, but have had to learn why focusing on this is such a dangerous thing to do.

Just as I’ve had to learn how to treat my kids all as individuals, I see a great need for society to open their minds and hearts to discover that there is so much more to these kids than just the label “autism”. They each have their own personality, their own personal likes and dislikes and their own personal characteristics.

They are not defined by the label AUTISM but instead are a valuable member of society who just happen to have autism.

Get outta my head!!!

Lately I’ve been starting to own some of my deepest fears. I’ve admitted them, faced up to some of them, started to deal with them and eventually with God’s help: I’ll overcome them.

But you see , I often have this awful feeling that’s hanging over me like a heavy blanket. It’s that feeling that lurks in the back of your mind that isn’t obvious but it makes you aware that you’re ‘uneasy’ about something, but it’s something that you can’t quite pinpoint.

And that feeling is called “dread”.  

I often complain because it feels like we never get invited anywhere, but when we do – my brain starts going into overload and I start the train of thought:

‘What if the boys can’t handle the noise, the crowds, the venue….What if Harley can’t eat anything there, What if no-one talks to them, what if people DO talk to them and make fun of them, what if one of them has a meltdown….what if we never get invited back’.

Or worse still: ‘What if they behave so beautifully that they make me look like a big drama mama looking for sympathy’!?   (because it’s all about ME don’t you know!)

And then I start thinking of ways that I can decline the invitation graciously whilst feeling sorry for myself in the process.

But then other times, we DO accept invites and we DO actually go out. But I rarely enjoy it because the entire time that we are there, I am trying to stay one step ahead at all times. Trying to predict possible triggers and avoid them if possible and I throw all my energy into making sure that the kids are taken care of that I forget about me.

Do you see what I’m doing here?

I’m getting so caught up and carried away with the what if’s that I am unable to enjoy the moment. I am unable to go out and have a good time because I’m afraid of the consequences of letting down my guard for even a few minutes.

And that’s not just me being overly protective. I have let my guard down before, I have listened to well meaning friends tell me “He’ll be fine” and “Stop worrying” only to have to deal with the mammoth-sized meltdown once we get home again.

And I really don’t know which is worse.

But I have learned recently that dread is a close relative of fear. I was reading *THIS* article by Joyce Meyer entitled : How to enjoy life despite your circumstances.

And in particular, this passage: 

It’s impossible to reach your God-given destiny if you allow negative thoughts to fill your mind. Dread is a close relative of fear, and allowing it to remain in your mind, sets you up for misery and robs you of joy. 

 And that’s what I’m taking with me into this week. I’m responsible for my own happiness. I don’t have to allow dread and fear to make decisions for me. Yes, going out with my boys sometimes is very hard and draining, but I have decided to refuse to live in dread anymore.

For the price of jellybeans.

 

Today I’d like to introduce you to the newest member of our family. See this cute little teddy bear? Well, his name is “Jelly Beans”.

 A pretty clever name considering that there are 3 little jelly beans on his nose.

And Jelly Beans is Harley’s newest little buddy. He joins the original Teddy, Cookie and Sprinkles in his bed each night.

Teddy, Cookies and Sprinkles

This foursome of bears each has a story behind them and each of them have helped Harley to cope in all kinds of situations that he has found to be daunting. These bears hold a very special place in his heart and he treats them with the utmost love and respect.

Teddy is the original bear that we bought for Harley before he turned 2 and he hasn’t left his side ever since. Up until Teddy’s arrival, (and we were still clueless as to Harley’s diagnosis or even that he needed one) he was forever chewing and sucking on his sleeves, blankets, pillows, cushions, and anything he could find for comfort!  But Teddy filled a very large gap in Harley’s life. He has been through the most with Harley and is still his favourite bear to date.

Cookie’s name continues to amuse me because in Australia we don’t use the word ‘cookie’….we call them ‘biscuits’ but because Harley made Cookie at Build-a-Bear in America – he has named him according to his birth place. And sprinkles…well sprinkles was bought for Harley by a dear friend who treated him to his favourite place back in July and has donuts on his feet with “sprinkles” on them. Hence the creative name.

But the story behind Jelly Bean involves sleep issues, a psychologist and a reward system.
Curious yet?

Well, I guess you could also refer to Jelly Bean as ‘leverage’.

Most of you will know that my boys have been sharing a bedroom for quite a while now and it has had its pros and cons, but we realised that it was time to separate them after too many nights where Harley’s sleeping meds would kick in rendering him drowsy and Lucas (who is un-medicated) would lay there and happily talk, and talk, and talk for HOURS. Harley would then get annoyed, Lucas would retaliate until the whole evening would descend into a screaming match between the boys and NO ONE would end up getting any sleep!

And we’ve always known that getting Harley back into his own original bedroom was never going to be an easy task. He hated that room. For some reason it has always frightened him.

So we decided to bribe him. (Yes I know….parents of the year eh!)

Well, Paul told Harley that if he stayed in his own room for a whole week that he could have $10.

Harley bargained for $35.

Paul came up a bit and offered $15 but Harley wouldn’t budge off $35.

Paul came up again offering $20 as his final offer but Harley shook his head digging his heels in even more firmly.

So curious: Paul asked him why he wanted that exact amount?

“Because that’s s how much the build-a-bear that I really want costs”. 

 (Smart kid eh!)

Ah…..NOW we had something to work with…

So..Fast forward to last Wednesday when we took Harley along to his first appointment with his new psychologist and as I wrote before: She had trouble pulling conversation out of him because he didn’t want to be there. But he did talk to her once. And have a guess what the first thing he told her was?

Yup. ….. “Mum and Dad are buying me a new build-a-bear if I sleep in my own room for a week”.

Paul and I exchanged nervous glances before anxiously looking back at the Psych to see her reaction.  I was sure that I was about to get a lecture on bribery and the inappropriateness of “buying” your children’s affections, but I was genuinely surprised! Because she did neither!

She looked at Harley and said: “Did you know that your new teddy is only allowed to sleep in your new room though?”

Harley looked at me and asked: “Is that true Mum?” 

So I nodded at him and said:

“Yes. Yes it is true”. (Whilst cursing myself and thinking DAMN I wish I’d thought of that!!)

The Psych continued: “That’s right Harley, if you leave your bed to go to Mum and Dad’s bed or back into Lucas’ room you won’t be able to take your bear with you…He has to stay in your new room”.

Ugh…I felt a bit sick and started to panic a little but guess what? ….Tomorrow makes 14 days in his own bed.

Did you read that correctly? :  FOURTEEN DAYS IN HIS OWN BED! At the OTHER end of the house in his OWN room!!!

Woot WOOT!

This really is a HUGE deal in this house! I have posted many, many times over the past 2 years about the massive sleep issues that we have endured and the troubles that his constant night wanderings have cause for all of us.

I LOVE our new psychologist in more ways than I can express right now and although I’m not quite ready to publicly share other stuff that she is working on with Harley, I will  in good time.

And to think that the purchase of a simple teddy bear brings my child such comfort and delivers rest to my family: It is money well spent.

So for the time being; I’m going to continue to celebrate these little stepping stone moments because they all join together to make up the path that is going to lead my boy into a wonderful and amazing future.

And you can’t ask for more than that now can you?

The thing about anger….

We have many folders and files of therapy reports and all things pertaining to autism in this house. They are everywhere. Literally.

The thing about anger is that it can have a profound effect on your day.

It changes how you view situations and people, how you act and how you think.

It can be a very dangerous emotion if it’s not handled correctly and today; I almost became a victim of my own undoing by indulging in allowing bitterness to overwhelm me.

***

I’ll go back to give you all some context:

***

Today, I turned the house inside out looking for the report for Harley’s psychological and behavioural assessments that we had done through the university almost 6 months ago now.

I had deliberately put these results aside when I received them in the mail because I simply wasn’t ready to deal with them at the time.

 Well, ok, I did briefly skim through them when they first arrived but I have to admit that I didn’t really absorb any of it at all because I didn’t want to.

But the thing is: the psychologist that Harley has started seeing recently has requested a copy because it would be helpful for her to be able to see the best ways that she can communicate with him and help him. So I had no choice but to search for it.

And I found it. I read it and re-read it and read it again. But I couldn’t escape the fact that it was right there in print in front of me. It was very real.

The words: ‘low average range’, ‘below average’, ‘well below average’ and 8^th percentile jumped out at me making me squirm. And from what I’ve seen at home, I believe that this particular report was very accurate.

But our school doesn’t necessarily agree.

Here is an excerpt from the report:

H’s pattern of performance across tasks indicates that he is experiencing difficulty across a range of cognitive domains including verbal reasoning and knowledge, working memory and his processing speed ability. He has particular difficulties in reading comprehension, spelling and numerical operations which supports Fiona’s initial reports… (Loved that bit).

Then it goes on to deliver further results and recommendations for more classroom aide, more learning support and more specialist attention in the school setting.

And this is the part where I burst into tears. I have literally gone around in circles tonight trying to ‘tidy up’ my initial post about my own personal reactions to the subject of aid (or lack there-of) in our school. What I wrote was very true, more than a bit controversial and very heartfelt but it was verging on venomous.

I hovered my mouse over the publish button several times but I wasn’t able to go ahead with it because I knew I had to calm down first and there was a part of me that just wasn’t comfortable with publishing such vitriol. That’s not – and never has been – my intention for this blog. I want to advocate not obliterate and I know too well that words spoken in anger can cause irreparable damage. So I trashed the whole post and I started again.

And no. I don’t think that I am taking the easy way out.

I am still extremely bothered that my child is desperately in need of extra aid and assistance that he’ll possibly never receive, but I have realised that I would achieve nothing good by giving in to angry tirades.

I need to go about this the right way; I just haven’t figured exactly what that is yet.

I am still in major doubt that the school really sees the big issues here. Don’t get me wrong: It is a great school and my children all have wonderful teachers but when you’re dealing with autism and all that it encompasses whilst in a mainstream setting:  it will never be enough.In fact: not even close to enough. And that’s just the way it is.

So who is at fault here?

Well, I don’t think it’s either the school or us.  The school offers what they can according to their funding allocations, and we enrolled our kids there because we believe in the school. Harley had no diagnosis when he started Prep. We were still viewing him as our ‘impossible child’ with shocking social skills and speech delays. We could not have predicted how things would eventuate 4 years down the track and could not have foreseen the extra needs that his disability brings with it.

The most pressing issue at the moment is that what the school sees, and what we live with are two polar opposites. School continues to tell me that Harley is a pleasure to teach, that he is doing wonderfully and that he is settling in well, meanwhile I’m still waiting for the last lot of my Harley-inflicted bruises to disappear and my own medication to kick in.

I hold no grudges because the school can only report on what they see and I can only report on my own reality. The fact that they don’t line up is what needs to be addressed here.

I have no choice right now but to give this all to God and truly believe that He is going to bring good out of this whole situation.

I simply cannot handle any more stress. I’m at my limit, so Jesus: PLEASE take the wheel.

Wordless Wednesday 29th August 2012 – Required Reading

Yesterday I took a trip to the library because the two books I’d put on hold had come in. Both of them came highly recommended to me and the titles pretty much speak for themselves.

I’ll let you all know how they go….