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”.

Dear Teacher…

At the beginning of each new school year, parents are required to walk a very fine line.

And that line is the line between advocating for our children’s needs whilst not undermining the teaching staff. Because these are the people who are trained to be teaching our precious children for approximately 40 weeks of the year so keeping a working and healthy relationship with them is absolutely vital.

But when you have a child (or children in my case) with extra needs, that line becomes even finer. Because, like ALL parents, we want our children to reach their full potential, but we also realise that it’s going to take a LOT more guidance and assistance for them to reach it than it will for a typically developing child. And we need to know that the teacher fully understands this.

In this instance – I am assured that Harley’s teacher for this year DOES in fact “get” it.

I was so impressed and grateful when we collected the mail earlier this week and received a letter addressed to Harley. It was a letter from this teacher outlining anything that’s changed in the classroom along with a few photos so he knows what to expect.

Top points for her!

As I read the letter, there was however one point in particular which leapt of the page at me and my heart started pounding: ‘In our class, we get to choose where we would like to sit each day. You may choose to sit in the same spot every day or move about some days’….

I think it’s a great idea but I will be chatting to her about the possibility of implementing an idea that a friend gave me…..to slip a pillowcase over the back of HIS chair so that no matter whereabouts in the room he sits….he will still have at least one thing that remains “safe” and “constant” and “predictable”.

I’ll keep you all posted on how that goes.

Because children with an ASD come in all shapes and sizes, even two children with the exact same diagnosis can be polar opposites (as is the case with my boys).

So, for a teacher to apply the same techniques that worked on one child with AS one year might not necessarily work for my child this year. (As I am finding out myself my parenting two little AS boys with very little other than their genes and diagnoses in common!)

Like I wrote earlier: I have no intention of marching into school claiming to have all the answers. Because, I don’t. And I also have absolutely no teaching training, no special needs training and no professional qualifications in working with children whatsoever.

But what I do have is inside knowledge on my child and how autism looks on him – as well as an insight into how he may respond in certain situations. So it would be remiss of me to not offer up all this information that I have accumulated over his short life if it may help both of them to succeed

Anything that will help him to settle and learn will be in the best interest of everyone.

And this is the reason that I have spent the past week updating Harley’s one page point form “About me” sheet and writing one especially for Lucas so that I can hand them to their teachers on day 1 of a the new school year. They are laminated and ready to go tomorrow

~

You can read them both by clicking on the links here –> for  Harley’s teacher letter and here –> for Lucas’ teacher letter.

~

All ready for big school!

I also ALWAYS include a copy (for the teacher to read at their own leisure) : a copy of MOM-NOS’ BRILLIANT presentation that she gave to her son Bud’s class buddies to help explain why he says and does the things that he does.

The series is called: a hairdryer-brained kid in a toaster-brained world. Once you’ve read this first post…..click on the link at the bottom to read the whole series of posts. I promise that you won’t regret it.

And on that note…..I’m off to iron uniforms, make lunches and make the most of the last few hours that I have left at home with my 5-year-old who will be a big grown-up school kid JUST like his siblings as of tomorrow!

Wow…..where did all those years go?

How do you prepare yourself, your child and your child’s teachers for a new school year? I’d love to read all of your answers.

Exploring emotions.

  Meal times have always been a downer here. Rarely have I cooked a meal that all of them have been willing to eat. Tears are a regular occurrence and more often than not I leave the table defeated and somewhat angrier than I was when I sat down.

It’s true that I’m no Master chef but I can do a little better than canned food and toast, but because we have so many conflicting sensory and taste issues here – it’s almost impossible to keep everyone happy all of the time.

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

And of course : Harley threw a fit.

Nothing new there, we get this about 4 nights a week. So I casually bent down and picked up the fork that he had sent flying in rage and left him to it.

The other 2 kids are so used to this kind of behaviour that they hardly blinked. They simply went on eating oblivious to the jumping, flailing, screaming and whining.

After a few minutes with no response from any of us – he calmed down a little bit and edged closer to the table to see if he could elicit some sort of reaction from me so I grabbed the tomato sauce bottle and made a smiley face on his plate with it.

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

But no. He wasn’t budging.

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

I assumed that his little display of displeasure was over and he’d realised that he wasn’t going to win and I expected him to sit down and start eating therefore silently admitting defeat.

But I was wrong again.

He used his fork to smear out the happy face I’d made and used the BBQ sauce to make a sad face instead next to it and then pushed his plate away and marched off to his bedroom in a flood of tears.

What followed during the next ten minutes conjured up a lot of very mixed emotions in me…I was annoyed, frustrated, proud, relieved, joyful and sad.

All at once.

Harley had taken a pen and a pad of paper into his room with him and had drawn a picture of himself on about 8 different pieces of paper, each with a speech bubble coming out of his mouth. He had then written in each bubble a word and distributed these drawing throughout the house.

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

I studied them intently trying REALLY hard to decipher his writing but I failed miserably. As hard as I tried, I could not understand his writing and this just seemed to exacerbate his anger so he went and hid underneath the fuse ball table in the back room for half an hour silently rocking back and forth with tears streaming down his little face.

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

He’d calmed down enough at this point to talk to me and he did.

The bubbles said: “I’m angry”, “I’m sad”, “I’m hungry”, “I’m scared” and “I’m tired”...

Well I just about suffocated him with the huge hug that I wrapped him in because I was SO proud of this amazing progress!

My boy was not only able to recognise and own but CONVEY his feelings and emotions to me in a calm manner!  How cool is THAT?!

Suddenly the frustration that I had at not being able to understand my child was overwritten by a warm fuzzy emotional tidal wave!

It seems that my attempt at making him smile with the sauce actually prompted him to express what was going on inside him. It was the trigger that he needed to tap into his emotional state and he then found a way to communicate with me even amidst his stress.

The sad face that he drew back started a domino effect of emotions that just spilled out of him and I think this is absolutely wonderful!

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

Facing the music.

Because Mr Patient has been away a lot lately and because taking the children out to dinner can be a bit risky – we decided to all head up to a smaller shopping centre to eat lunch together today because lunch ALWAYS goes better than dinner in our experience.

It wasn’t a total disaster but it certainly had potential! You can read about the last time we attempted to go to this centre –> HERE <–.  No, this visit wasn’t as eventful but it certainly came close!

After we had parked the car and entered the shopping centre – we walked towards the food court we noticed a lot of people all heading in the same direction as us . It was lunch time granted, but to see SO MANY people was really strange!  This centre is not usually packed to the rafters like it was today and we knew that there had to be something going on.

We rounded the corner and Harley stopped dead in his tracks and almost tripped another couple over in the process. He grabbed my hands and clamped them tightly over his ears and turned to me as white as a sheet and said: “Oh no Mummy, I can’t do this!”

I looked ahead and saw the long, long line of excited teenagers and heard the extremely loud music that we were walking towards. And then I saw what all the commotion was about. I’ll tell you but first let me ask you a question: what are the chances that a previous winner of Australian Idol would be signing autographs courtesy of the local radio station in this tiny little centre?

Yeah…..pretty slim but guess what? We managed to pick not only the day but the very time that he was performing live.

I knew I had to act quickly to avoid a sensory overload meltdown so I thrust some money into Mr Patient’s hand and told him to go order the kid’s food . I then added that I was off to the hardware and that I would meet him back in the food court in about ten minutes.

I purchased some bright red headphones from the motoring section and although they weren’t fully noise cancelling – they provided enough muffling to enable Harley to make it through the entire meal.

We found an isolated corner to sit in and proceeded to enjoy our meal as a family. The usual chatting didn’t happen but we did manage to communicate via silly facial expressions and hand movements.  I wonder what our fellow shoppers thought of my weird family and their silliness?

I don’t care actually – we had a GREAT time and that’s the most important thing.

And the added bonus? I now have a pretty red pair of headphones that I can wear around the house to block out my kids!  Bahahahahaha!

The Posse on the hill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is another scenario at play here as well.

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

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

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

It affects EVERY part of their lives.

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

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

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

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

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

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

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

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

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

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

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

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

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

So….What exactly is a meltdown?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Agreed!

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

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

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

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

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

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

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

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

The meltdown affects EVERYONE around us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You never know what you’re gonna get!

Angry birds and Happy Children.

Wow!

What a weekend!  

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

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

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

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

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

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

~

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

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

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

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

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

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

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

So this weekend was very healing for both of us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now…..back to life as I know it….

*sigh*

Why I told my son to stay away from nerds.

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

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

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

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

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

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

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

I’m talking about these suckers…

⬇

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

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

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

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

It.was.hilarious!

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

He ran and ran and ran and ran some more!

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

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

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

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

…

…

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

Which is flipping FANTASTIC!

Not.

The pain of not knowing.

And so ends another school week.  

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

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

So …yeah….great news eh!

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

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

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

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

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

****

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

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

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

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

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

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

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

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

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

So….what to do?

I honestly don’t know right now.

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

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

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

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

Have a great weekend all…..

♡

Fi x

Confessions of a helicopter parent.

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

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

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

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

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

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

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

 

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

***

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

Ok?

Thanks..

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

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

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

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

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

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

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

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

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

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

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

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

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

“What do you mean honey?” I replied.

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

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

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

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

My kid ALSO needs me.

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

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

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

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

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

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

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

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

A flour-y success.

Well, good morning all

I promised a happier disposition today and I promise to deliver

I am thrilled to share with you all something else that I have found that is working for my little Harley and his homework.

He started to show signs of displeasure at the prospect of spelling his words out on the fridge this week so I had to dig into my memory reserves and find a trick that a great school teacher friend told me about years ago way back when Ella was little.

I got Harley to write his words in flour with his forefinger so that he could practise the letter formations.

He LOVED it

And I’m pleased that I used my brain and used gluten-free flour as my sensory child ate quite a lot of it . LOL

He was more than willing to keep writing and we had no trouble getting him to do it everyday this week. He wanted to keep writing even after he had finished all his words which is an absolute FIRST for him

Another success to chalk up? You betcha!

It’s all about thinking outside the box with these kiddos.

No-one said it was gonna be easy but it sure is worth the rewards at the end.

His floury grin and white sticky fingers that were wiped on my back after he gave me a big bear hug were all the thanks I needed.

It’s gonna be a great week

Mothers….follow your hearts…

Our little Lucas was diagnosed with Aspergers Syndrome just on 14 months ago.  

He was diagnosed by the same paediatrician who diagnosed Harley, and as I have written before, it was virtually an on-the-spot diagnosis. So we as a family took this diagnosis on board and have been catering to this ever since.

He started attending speech therapy, OT and an early intervention group soon after.

Whilst the diagnosis was already given, we still needed to have a CATS assessment.

CATS stands for “childhood assessment team” and yesterday, we drove to the Children’s hospital where they performed the ADOS and the Griffith’s assessment on Lucas.

We entered the room to be met by a multi-disciplinary team containing, the diagnostic paediatrician, an OT, a speech therapist, a physiotherapist and a social worker.

It was a little overwhelming to walk straight into this but we knew it was the final step in discovering exactly how to best help Lucas when he starts school next year.

I know that this sounds terrible but I was actually somewhat annoyed that when Lucas woke up in the morning, he was in a fantastic agreeable mood and his speech was really quite clear because, only the day before, his speech therapist took a video of him and asked me if it was OK if she showed it to some of her colleagues because he is proving to be a mystery to her.

She told me that the inconsistency of his speech bothers her because one week she will understand 90% of his attempts at speech but then only 10% the following week.

So as bad as it sounds – I was concerned that this testing wouldn’t show the “real” Lucas and that it might provide false results.

We spent an hour sitting in that sterile room with all five members of the team answering questions, providing valuable insight and watching Lucas sit W-legged on the floor playing with the trains and dinosaurs completely oblivious to the discussions going on around him.

One of the things that they were particularly interested in was that we already have an older child diagnosed with aspergers. And Mr Patient and I felt ashamed as we admitted that our biggest struggle was not with Lucas – (the child they were assessing)- but with Harley.

The social worker asked us what kind of family support we have, and noticeably were concerned when they heard our answers.

My numerous surgeries and mental health were brought into question and the empathy for our situation in that room was almost tangible!

They were an incredibly supportive and wonderful team.

Next, we were asked to leave Lucas in the room with the Paediatrician and one of the therapists whilst the other 3 accompanied Mr Patient and I to an adjoining room with one-way glass and a TV screen that we could observe the rest of the assessment on.

We giggled as we watched him show the Dr how to tell if you’re alive or dead and squeezed her fingers for her until they turned white and then after releasing the pressure and when he finger returned to it’s normal pink colour – he exclaimed “Yay! You’re alive Dr Jenny”!

She thought it was hilarious too!

We watched this play based assessment with mixed emotions….pride, anticipation and for Mr Patient, a little sadness.

He shed a few tears as the reality set in and he was confronted with the very real possibility that the original Paediatrician was correct.

I need to point out here that I personally am in a very different place to him. I believed this diagnosis right from the start but he has lived in “hope” that his other son would be spared the trials that seem to go hand-in-hand with ASDs.

After the assessment was completed, we were sent off to the hospital cafeteria for half an hour so that the team could meet and compile their results and final diagnosis.

We sat out in the sunny courtyard watching Lucas play happily in the garden and discussed what we expected the outcome to be. I told Mr Patient that I really couldn’t pick it. I honestly had NO idea what they were going to tell us. It was a brilliant day for Lucas….he might have been able to pass for typical because he is so high functioning.

I’ve written many times before that there are days when even I as his mother (and the one that he spends the MOST time with) have doubted the original diagnosis.

These are the days when he is attentive, agreeable, consistent and “typical”. But then soon after he has what I call a “fully autistic day”… These days have him pacing in circles, mumbling to himself and repeating the same phrases over and over to himself like a mantra.

But my concerns were laid to rest as the team re-entered the room and the results were delivered.

Lucas meets the criteria for aspergers syndrome 100%.

We were told that the formal reporting will take a little while to complete but that in the meantime, they can tell us with certainty that the original diagnosis was and is correct.

I beamed when they told me that he has no intellectual delay but conversely he is placed in the 80^th percentile intelligence wise for his age group..

She then went onto explain that the problem lies in his apparent speech delay. The ability is more than there but it’s just not translating to his words. She recommended more intense speech therapy and stressed to us the importance of finding just the right school for him next year.

The Dr must have read my face because she then launched into an in-depth discussion of how differently aspergers can appear in two different children. (Namely my two boys).

Harley is aggressive, emotional, short-tempered and obsessive. But he is also cuddly, affectionate, sensitive and caring.

Lucas is easy-going, level-headed, patient and flexible. But he shuns affection, appears nonchalant and exudes indifference.

She explained to me that personality and sensory profile are major factors in how aspergers looks on the individual and that the family dynamic can also dramatically affect the child’s presentation of aspergers.

For example: Lucas was diagnosed a lot earlier than Harley was so we made the necessary adjustments therefore sparing him the heartache of trying to fit into a family that isn’t catering to your needs.

There were already visuals all around the home left over from Harley and we never expected the same level of compliance that we did of Harley at the same age.

She pointed out that because the boys share the same diagnosis….there are a plethora of variants that affect the way that they present.

The meeting was finished after the social worker asked us what kind of service we as a family needed.

We looked at the floor as we announced again that we needed more help with Harley than with Lucas.

Our information has now been put forward to a number of support providers who deal specifically with behaviour management and supporting the family unit as a whole. I’m thrilled and incredibly grateful.

Throughout this whole exhausting process, I have learned that I need to stop listening to other people because I know my son better than any health professional ever could.

So mothers…..trust your instincts.

It there’s something about your child that’s just not quite right but you can’t put your finger on it…..get it checked.

Follow your heart, the worst that could happen is that your child turns out to be typical albeit a little quirky.

Or…..Congratulations!  You have a remarkable child with an incredible gift who just happens to be on the spectrum.

It’s a win-win as far as I’m concerned.

My Ah-ha moment!

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

image from hookedonhouse.com

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

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

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

The first two categories are “Over” sensory groups.

The Sensory Avoider (Or the “Controller”)

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

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

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

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

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

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

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

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

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

Next is the two “Under” sensory groups.

The Sensory Seeker (The “Pleasure seeker”)

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

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

OMGOSH!   That is SO me and also Lucas.

And lastly the Poor Registrator (“Easy going”)

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

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

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

*****

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

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

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

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

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

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

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

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

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

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

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

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

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

NOW I KNOW WHY!!!!!

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

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

So….What category do YOU fall into?

Saturday night fever….or Saturday night fear?

So tonight is gonna be interesting…   

Harley has been invited to a birthday party for one of the gorgeous little girls in his class. (And she really is gorgeous….and so is her mum).

So…that’s awesome right?

Well…yeah it is, I’m pleased that my son has been included, and the family is absolutely lovely, but there’s a really good reason for my concern.

This is a 70’s disco party…you know, the ones with the disco ball, the flashing lights, the loud pumping music and the tonne of kids dancing and grooving to the beat.

Are all the sirens going off in anyone else’s head as well?

Harley is very excited. Well as excited as he can be without fully knowing what to expect.

He loves *Sienna and really really wants to go. He helped me pick her present, he chose her favourite colour and he keep telling me over and over again that he just knows that she is going to LOVE it!

I’ve yet to explain to him that this party may very easily send him into a full blown sensory meltdown. I’ve packed some ear plugs, and his iPod, he is wearing a fiddle toy around his neck as a 70’s inspired medallion so the only thing left for me to do is sit him down and explain just.what.to.expect.

But I so don’t wanna!

All I really want to do is wrap him up and snuggle on the sofa with him watching movies so I can protect him from what lies out there .

Ugh…..it’s times like this that I hate autism and SPD.

How to guarantee a meltdown in five easy steps.

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

image from inkcinct.com.au

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

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

1. Make an impulsive decision to go out.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

UGH!

Guess what peoples?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yup, you guessed it!

They were sold out. What were the odds?

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

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

Never sick….

I’m all outta words. (Rare I know!)

So instead of trying to make up some pointless dribble to fill a page….I’ve decided to share three photos of Harley as a baby building up his immunity!

And yes. He still eats dirt.

And sometimes soap, he sucks his fingers, and his arms, and licks inedible things, AND people, AND furniture *rolls eyes*

Sensory issues anyone?  :lol:

I love you Ms Larkey!

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

image from suelarkey.com.au

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

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

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

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

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

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

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

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

Nowadays it is a lot different.

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

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

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

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

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

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

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

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

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

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

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

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

None whatsoever.

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

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

So what would you do?

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

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

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

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

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

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

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

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

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

Now….Where is the child?

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

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

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

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

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

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

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

And I’m met with blank stares.

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

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

Interesting hey!

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

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

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

Instead, the request should go something like this:

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

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

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

Is anyone else having light bulb moments here too?

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

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

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

Secondly: These kids communicate better during movement.

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

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

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

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

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

Not true.

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

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

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

And yes definitely for college or university.

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

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

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

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

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

(the room was filled with gasps then!)

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

Pay it forward…..

I hated today.

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

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

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

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

Sounds nice right? Like a real treat for them?

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

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

**

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

**

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ugh!

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

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

Her message was this:    

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

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

Well done, love *Julie xx

And instantly my spirits were lifted.

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

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

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

* Not her real name…..

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

Right. 

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

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

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

1. I’m a God believing Christian.

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

And they do exactly that every.single.day!

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

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

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

***

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

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

(Shock , horror, gasp!)

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

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

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

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

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

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

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

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

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

But it’s just not that simple.

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

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

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

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

Here it is……

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

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

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

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

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

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

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

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

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

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

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

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

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

You see…….

I love that my children are special.

I love that they are unique.

I love that they are quirky.

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

And I love that they are individuals.

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

They were perfectly formed by a perfect God.

They are a blessing and a joy.

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

***

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

Busy and tired!

So, it’s been a wild week in the Madhouse.

I’ve been crazy busy and waiting for this ride to stop so I can step off!

 If you write a blog and I’m subscribed to it…..please know that I probably haven’t read it yet but I will hopefully get around to it soon.

Erm….sorry!

 I’ve also got 142 unread emails in my inbox. Yes… 142!!!

It’s due to my computer developing a problem with syncing my emails to my iPad and iPhone, so if you’ve written to me and I haven’t responded…..I’m not ignoring you. I just have had to wait until we can fix this glitch.

 Ugh!

 As a result of this : I have so much to write about, it’s hard to know where to start so instead of trying to write about it all, I will just list a few things in point form!

•  The school that Ella and Harley go to, have asked me to get a cognitive and educational assessment for Harley.

 Basically…..we need to discover his potential and ability and get his results to match that!

Now all of you long time readers will attest that  I’ve whinged before about the OT that he had last year and what a complete waste of time and money that she was.

Well guess what? I have finally gotten rid of her! And on Wednesday, Harley started with a brand new OT who specialises in Functioning OT.     So far, I’m really impressed!  She did a motor assessment on Harley and has told me that she has observed a LOT that she needs to work on with him.

I’m not surprised by this because the previous OT was hell-bent on the sensory stuff (which is also important) but she rarely did anything to help him with his writing and fine motor skills.

As a result, his writing is now at a 4year old child’s level and he is turning 8 in a few months.

Ho Hum.

 She also told me that she is going to enjoy working with ‘ME’. (My humour – or rather my ‘sarcasm’ must have appealed to her!)

•   Lucas’ early intervention pre-school has just called me to advise me that there is a place for him to start OT with one of their therapists (who is awesome) so I’m VERY excited about that too!

He is coming in leaps and bounds with his speech but he really struggles with motor skills and has huge sensory needs.

•  The kid’s school has also asked me to get an assessment for Lucas before they will even consider interviewing us for enrolment for next year. I partly understand where they are coming from, but I am also annoyed because I (naively) assumed that he would be instantly accepted because the older two kids go there! Not so….. But he has his assessment on the 29th of this month so I will have to wait and see how that pans out.

 

• Ella turned 11 on Thursday! I can hardly believe that my girl no longer looks like this:

 

•  My mum is down at the moment and she helped us celebrate Ella’s birthday.

Last night – We took Ella and 5 friends to a Pizza place for dinner and then to the movies. It was a fabulous night and I was thrilled to see her so happy! School has been shocking for her up until last year as she has been mercilessly bullied by a group of girls that thankfully are no longer part of the crowd she associates with. So for me – it’s exciting that she is finally fitting in!

•  Today we had a “family” party for her with Mr Patient’s Mum coming over and with my Mum still being here we all went to play Mini golf. Ella’s BFF *Emma came with us too as she slept over after the movies last night.

Golf was wonderful! And we were pleased with how well the boys coped with it all, so we all decided to go out and have morning tea at a local coffee shop afterwards.

Wel….it seemed like a good idea at the time!  We hadn’t taken into consideration all the sensory overload that the golf centre had provided and the many different people that he had to come into contact with.

Unfortunately it didn’t take long after we sat down for Harley to start to lose his composure and the wheels started to fall off in a BIG way

Thankfully – I keep a black pashmina in my handbag most of the time so I quickly wrapped it around his shoulders and draped it down over his head, gave him my phone to play with, and he sat in his little blackened cocoon and we were able to get him down reasonably quickly.

Afterwards when we got home for lunch and fired up the BBQ,  I patted myself on the back, SO PROUD of myself for being such a great mother and handling the situation so well. However……Harley sat down on the rug to play with one of his Sonic toys and when the leg broke off……ALL-HELL-BROKE-LOOSE!!!!

 The poor child screamed, thrashed, cried and rocked for almost 45 minutes.

And the ONLY thing we could do was wait it out. NOTHING was working. All the things that usually work weren’t working either.  We tried wrapping him, giving him his teddy, carrying him to a quiet room, and holding him tight whispering “shhhh” but they were all useless!

 None of us knew what to do as it took all of us by surprise because we didn’t recognise the warning signs (which in hindsight was the mini meltdown in the coffee shop) and we had wrongly assumed that by the time we got home again, the worst of it was over!

It hadn’t occured to me that it was only a bandaid solution and that there was a LOT more to come.

It absolutely broke my heart to see him so emotionally distraught and completely non-verbal except for the grunting, yelling and sobbing, and I think Ella’s friend *Emma got a bit of a rude shock seeing him in full swing.

 She knows he has autism but I think that this is the first real dose of our reality that she has experienced.

 I HATED feeling so disconnected from Harley and unable to soothe him at all. It was a dreadful and heart -wrenching feeling of faliure for this mother, but at least I have now made a mental note to observe him closer and recognise the signs sooner so that it doesn’t reach that level of explosiveness again!

Another lessoned learned!

Anyway, my main goals for this week are to catch up on my emails and blog reading- but I have to be honest: I’m really not liking my chances of that happening because my Mum is still here for another few days and I would choose spending time with her over ANYTHING else in my life right now!

Haha!

Ave a good weekend peoples,

 Luv yous all!