Was it something I said?

I’ve been feeling really sorry for myself today. I’m completely bored with my life.

It’s Saturday afternoon and it’s a beautifully warm typically Australian Winters day. Spring is clearly just around the corner and though I feel very fortunate to live in such a gorgeous climate – I’m still feeling very blue today.

About an hour ago, I looked out my front door and noticed the neighbourhood children playing in the cul-de-sac on their bikes and scooters and there is even a game of touch footy down one end. Some of the girls are blowing bubbles and there is a lot of giggling going on.

But where are my children?

Slumped in front of some sort of screen. Of course.

Be it a Nintendo DS, a computer or an iPad, they are simply refusing to go out and enjoy the great outdoors. They never want to go anywhere or do anything and are completely content to avoid other members of the human race in favour of stupid technology.

I know that I should “be the parent” and make them get off the damn machines but I also know that it will cause tempers to flare and I don’t feel like the screaming matches and tantrums that it will almost certainly activate so I’m taking the easy way out.

Certainly not when Mr Patient isn’t here to bear half the brunt for me.

Yep. Home alone again and I’m completely over it today.

He is doing some overflow work and has been in and out of the house all day and up until 10 minutes ago (when I sat down at this computer to write this) I was stomping around the house trying to convince SOMEBODY to do something interesting with me!

I asked the kids to go for a walk or to come and kick a ball in the backyard with me. They barely glanced at me as they declined my offer. *Sigh* This is SO not the life that I signed up for!

Where’s the excitement? Where’s the action? Where’s the FUN?

Before marriage and certainly before kids I used to always have somewhere to go and something to do every.single.weekend. And I ALWAYS had someone to do it with.

Weekends were the time that I caught up with friends and chilled out and enjoyed life to the fullest no matter what I was doing. I used to look forward to them and they were my reward for making it through another week.

And even after we had Ella (and up until Harley was born), we still continued to socialise with friends, go places and DO exciting things on the weekends and were never short of an invitation of some sort. But those days are no longer.

Nope – I feel like our family has some sort of plague. Or a “keep back” sign tattooed on our foreheads at the very least.

All the invitations have dried up and we really don’t understand why? We have tried to nut it out together a number of times but neither of us can figure out what the hell happened or where we went wrong. Why doesn’t anyone want us at their picnics or BBQs anymore?

Are we really THAT bad?

Are we too boring?

Or is our children that are the reason behind this sudden decline in friendships?

***

I think that deep down I do actually know the real reason but I’m unwilling to face it. And I have a strong feeling that Autism has a lot to do with it. Maybe not directly but certainly indirectly.

I think that people don’t understand us so they avoid us. Our lives are too intense and our children require more than a lot of people could be bothered giving so no-one wants to get close.

Or have we scared them off ourselves with the stories we’ve told or worse still…..I worry that this blog has painted such a horrid picture of life in our house that people no longer want to come anywhere near us?

Is this all MY fault?

***

Recently we have talked about the other possible reasons for the rapid decline in our social life and realised that all the places that regular people frequent and start friendships with other families are all out for us.

For example:

Church – Harley can’t handle crowds or noise and if we do manage to stay for a whole service and attempt coffee afterwards…we pay heavily for it later with an emotionally overwhelmed screaming child that can take hours to bring down again.

Sporting events – Are you kidding me? Loud noises, crowds, strong unfamiliar smells, flashing signs…do I really need to go on?

Children’s weekend sports – Well, team sports are automatically out for us due to Harley’s anxiety issues and fine motor struggles not to mention the complete lack of interest in them whatsoever.

Old school friends and their families – Um…..not here. I don’t have any. All mine are back in my hometown so that’s out.

Family members: Sisters,Brothers,Cousins, Aunties, Uncles – none live anywhere near here so ….No.

Work aquaintances – We live over an hours drive from Mr Patient’s workplace and I haven’t worked since Lucas was born 5 years ago so we don’t know anyone!

As Mr Patient and I continued to chat about this –he suggested that we make more of an effort to find some new friends and start inviting people over here first. You know….the whole “be a friend to have a friend” thing. But I couldn’t help but giggle at this idea. I mean, isn’t that like the episode of FRIENDS where newlyweds Monica and Chandler go on a mission to find another married couple that they can pair up with. You know….”married friends”.

They end up being so full-on and come across as so desperate that they scare of everyone in their paths!

Anyhow:

Sorry about the whole whiney tone of this post, I know it’s packed full of negativity and moaning but I’m just trying to work through a few things.

I do however wonder if any other ASD families feel this way too? Do any of you ever wonder where the heck you went wrong and where did everyone go? Do you still long for the acceptance that you’re always banging on about for yourselves or is it just us?

I’d be interested to know your thoughts?

Have a heart…..

My beautiful girl and me

Today was a-mazing. It was one of those awesome days that I will remember for a long time – but it certainly didn’t start out that way.

We need to leave the house for school at 8am at the latest so when I walked out of my bedroom at 7:45 this morning after having my shower and noticed all 3 kids sitting on the lounge in their pyjamas watching television – I completely flipped out.

I couldn’t believe that they were that vague and clueless. I was in total disbelief that not one of them had even made a start towards getting ready and here it was only 15 minutes until I needed to be reversing down the flippin’ driveway!

I pointed at the clock and yelled a few choice phrases at no-one in particular while waving my arms madly in all directions.

Not surprisingly it did nothing to motivate them but the threat of arriving at school still in their pj’s did the trick!

After much yelling and fighting, the boys eventually dressed themselves and headed out to the car whilst I walked into the bathroom to check on Ella’s progress. As soon as I clapped eyes on her I could tell straight away that something was most definitely up but I didn’t have time for it right then.

She had a faraway look in her eyes and a sad downcast face and was just standing inside the shower cubicle staring into space.
I tapped on the screen and told her to hurry up so she turned off the water and dried and dressed herself just in the nick of time!

As we neared the front door on our way out to the car, I glanced over at her in time to see the tears welling in her eyes and I knew immediately that she needed a break. I also know that she rarely draws attention to herself and would likely soldier on for the sake of keeping the peace despite the fact that she wasn’t doing so well.

I knew that I had to step in.

I put my bag back down again not worrying about how late we were and pulled her close into a hug and then the dam well and truly burst. The tears freely flowed and she sobbed into my shoulder that she just can’t take it anymore and that it was all too hard.

I knew what she meant….they boys certainly ARE a challenge and I nodded in agreement. Autism has stolen SO MUCH from our family but I’ll be damned if I let it ruin my relationship with Ella too. I decided on the spot that a Mummy/Daughter day was the perfect prescription for today and she looked SO relieved when I suggested this to her.

So after I dropped the boys off at school and pre-school we planned how we were going to spend the rest of the day together.

Lunch and coffee were definitely on the cards and so was chatting about her struggles and just chilling out. She’s never been much of a shopper (I KNOW!) but we managed to squeeze in a little bit of retail therapy as well!

We both decided that we needed to each buy a heart necklace to wear to remind us both that we are loved but being that there is a 24 age gap between my girl and I – we couldn’t agree on the same style so each picked one that suited us instead.

Aren't they great? Mine's the one on the left.

Today I was granted a rare glimpse into what makes my little girl tick and saw that there is a lot of hurt and emotional grief that is hovering in her. This is partly because of her approaching teen years and the crazy hormones that are at work within her, but also due to the constant crisis that she lives with because of the high needs that her brothers have and the time that they require from me and Mr Patient.

Today was the circuit breaker that she so desperately craved but didn’t know how to ask for and I’m thrilled that we got to spend this precious time together. I’m also incredibly grateful that I am in a fortunate position that I didn’t have to go to work today and was able to pull this off.

After lunch we met a dear friend for coffee who showered us both with gifts and enforced the point to Ella that she is a princess who is just as worthy of time and love as her more needy brothers. She was made to feel special and encouraged to shine and I am so thankful to Mrs K for reaching out to my hurting girl and for being such an amazing lady.

I know that it’s all going to be ok. She is going to grow into a beautiful young lady and God will give me the grace to parent her just the way that she needs to be and He will fill my mouth with the words that she needs to hear at exactly the right time.

No-one said that any of this was going to be easy – but that’s ok….I’m well and truly up for the challenge

Life is gooooooood

Personally, I LOVE a bit of randomness!

I think I hit the jackpot finding an image of a waffle and a truck together! image via http://www.dribbble.com

Last night at about 10pm, I was sitting down in front of the TV just relaxing when I heard some little footsteps heading towards me. I looked over and saw Harley making a beeline for me. When he was close enough I looked at him and asked him what the matter was.

“I like Sonic” he replied and turned on his heel to head back to bed.

“Hey….wait a minute” I asked him grabbing his arm to stop him from leaving. “Did you come all the way out here just to tell me that?”

“Yes”, he nodded.

“Um, I know honey – you’ve liked Sonic for a while now” I replied.

“Yes, but that was when I was seven. Now that I am eight, I need to tell you again for this year” he said with conviction and then turned around and walked back to bed!

I’m used to this kind of randomness from my boy. One of the first instances of this was when he was about 3 years old (about 18 months before he was diagnosed with aspergers). We were at church and it was Easter time. The Sunday school teachers had gotten all the kids up on stage so that the parents could ooh and aah over the cuteness of their cherubs.

The leader had a microphone and asked several children “What does Easter mean to you?” and held it up to most of the children’s mouths to wait for their answer.

There were the predictable answers and some really cute ones too but when the microphone was put in front of Harley and the question was asked – he stared at it with a blank face and replied with just three small words.

 “I-like-trucks”.

Everyone exploded into laughter and I distinctly remember it like it was yesterday. My little boy was wearing an expression that I’ve never ever forgotten and one that I see regularly today. It was a mixture of hurt, confusion and fright.

I don’t think that he realised that his thoughts came out loud. I’m pretty sure that he didn’t understand the question and that all the sensory stimulation was overwhelming him so much that he had retreated into his “happy place”. He was having an obsession with Tonka trucks at the time so it stands to reason that this was what he chose to talk about.

Like I said – I have never forgotten this but it has only been recently that I have understood that this was a prime example of what we now know to be his one-track mind. And what an awesome mind he has!

Someone once told me that men have waffle brains and women have spaghetti brains. I forget where I heard it so I can credit anyone with it, but I really really loved this!

The analogy is meant to mean something along the lines of a man’s brain being compartmentalised and that they are only able to do one thing at a time. The several single squares on a waffle represent the boxes that men file useful information in so that they can access it whenever it’s required. The boxes are all separate and individually maintained.

Work is in one box which is totally separate from the home square. That’s why (some) men find it a little easier to find balance between work and family life and women not so much.

The spaghetti however, represents women’s brains and how hundreds of strands are intertwined and crossed over and how every little thing is connected to each other and that a woman can process and achieve many things at once and that doing just one thing can be the launching pad for many other things to occur at exactly the same time.

It also explains why (some) women are unable to simply shut off the emotions of a tumultuous family life once they reach the office or leave the woes of the working day behind when they come home to their families.

(This is all generalised by the way –I know that there are of course a lot of men and women who are exceptions to these rules;))

And then there’s the autistic brain.

I have heard it compared to a huge chest where everything is just thrown in all together.

And when the owner of this chest is required to access a piece of information or remember a previous event – they are able to find it and they manage very well without help, but because there’s so much to sort through, it can take a lot longer than an NT person to find what they’re searching for.

That’s not to say that it’s not an organised chest. It may have tidy compartments in there and they are probably well labelled, but because things that make their way into that chest aren’t thrown in haphazardly, and are placed very carefully where they are for a reason…Only the owner of that chest can find their way around it with any success.

 

And once again….this by no means applies to ALL people on the spectrum. I am writing about my own son and what I have observed myself).

Often I will ask Harley a question and see his contorted face as he searches for the correct answer. It can take several minutes for the right one to appear but he does usually come up with it in the end.

But…..if I push him and demand a speedy reply – he will usually give me a random statement or an unrelated piece of trivia because he is trying to substitute by using the first thing that his brain has latched on to.

Usually that piece of trivia is somehow related to whatever his special interest topic happens to be at that present time.

Like the comment with the trucks!

And anyway – I personally think it was a fabulous answer because trucks really are pretty cool, he was only stating the obvious. I mean…..all the rest of the children had already given the correct answer. He was just issuing a community announcement that day after all.

I LOVE how wonderfully wired these kids of mine are! They’re simply amazing little creations . And in case you’re wondering – the reason that he walked out to tell me that he still liked Sonic at 10 o’clock at night?

Simple – he was looping on that thought . Apparently I’d asked him a question earlier in the evening about his party invitations and wanted to know what character he would like printed on them but at the time he couldn’t quite find the answer he wanted to give so he couldn’t sleep until he got it out.

Duh Mum!

And remember…..it’s still Sonic in case you were wondering

Just five more minutes…..

It’s approaching midnight. I’m sitting up in bed waiting for sleep to hurry up and come to me. It is being elusive tonight so I’m trying to pass the time writing in my journal instead.
I can hear the clock ticking and can see Mr Patients’s chest rise and fall with every breath that he takes. I am jealous of his ability to succumb to the enticing call of sleep.

I am not usually one to suffer with insomnia, but at the moment, my tired eyes and weary body are fighting me with all of their might.

I think that subconsciously, I am just trying to delay the inevitable because in just 8 short hours, my wonderful Mum will be leaving to go back home again and Mr Patient leaves on another one of his interstate trips for several days.

The boys will have to re-adjust again.

Having 3 adults in the home alleviates a lot of pressure to achieve everything and the workload is shared almost evenly, but tomorrow it goes back to just one.

Just me.

NO, not ‘just’ me but me ‘alone’.

The child-minding,cooking,cleaning,organising stuff doesn’t bother me so much because it’s all a part of the parenting package. It’s more the emotional workload that I’d rather share than the physical one.

Tomorrow I have to wave goodbye to the awesome Grandma who plays board games with the kids so I can cook dinner in peace. And the Daddy who uses funny voices when he reads bedtime stories.

I’m farewelling the greatest sibling referee that ever lived and I have to tackle the after school emotional blowouts all be myself.

It’s funny because deep down, I KNOW that these things are all do-able and I will be ok. I KNOW that I am strong enough, but still…. I really don’t want tomorrow to come.

I’m like the child hiding under their bed covers early in the morning not wanting to get up and get ready for school. I’m not ready to go back to my life.

Just five more minutes pleeeeeeease?

Throwing out the books.

image from picturesof.com

Once upon a time in a house just like ours, many many years ago – we were experiencing some “interesting”  behaviour from Harley and I went searching for some helpful tips on how to handle the particular challenges that he was presenting to us.

When I think about it now-I can’t actually believe that I did this (a wire must have come loose in my brain or something) because I headed straight for the parenting books that I had on my bookshelves to see if I could get any little tidbits from any of them that might help.

Yeah, I know!

Dumb idea. REALLY dumb idea!

I completely agree now.

The first book I picked up should have come with a warning label on the side that said: If you are a parent of a child on the autistic spectrum…..DO NOT READ THIS BOOK!   It is written for parents of typically developing children and it will leave you feeling like a terrible parent because NONE of these methods will work for you.

The simple fact (as hard as it was for me to admit it at the time) is that my children don’t develop in the same way that neuro-typical children do so attempting to apply these methods to them was ridiculous from the get-go.

Let me explain:

Chapter one started off by stating that:  “As your child grows, they begin to understand the natural connection between actions and consequences”.

Then I read further to come across this little gem -

“Timeouts work well for all children between the ages of 2-8. Establish a suitable timeout place that’s free of distractions and it will force your child to think about how he or she has behaved. Don’t forget to consider the length of time that will best suit your child. Experts say 1 minute for each year of age is a good rule of thumb; others recommend using the timeout until the child is calmed down (to teach self-regulation)”.

 Calm down? Self regulation?

I remember thinking that if my child was able to self-regulate or self calm, I wouldn’t be reading this book searching for answers in the first place!

And for what it’s worth - my child didn’t used to go into time out ‘thinking’ about what he’d done wrong! – He was usually confused as to why he was even in trouble in the first place because most of the time he hadn’t been able to connect an action to this particular consequence!

On a recent note – we do actually use time outs in this house but for a completely different reason….we use them because *we* need a break from the child. We put them in their rooms so that they stop kicking, hitting or screaming at us so it’s usually more a case of a creating distance between the kicker and the kickee than the usual reason for imposing a timeout.

***

I know that I really should have tossed the book at this point but my curiosity got the better of me so I read on. I flicked to the chapter on 9-12 year olds and read this:

“Kids in this age group — just as with all ages — can be disciplined with natural consequences. As they mature and request more independence and responsibility, teaching them to deal with the consequences of their behavior is an effective and appropriate method of discipline”

Hmmmm, wasn’t this the same thing that I read way back in chapter one?

I can’t believe how far our thinking has come in only 4 short years!

And before you all think I’m being completely unfair and un-teachable here by bagging the aforementioned book - Yes, I do agree with some of the writings on some levels….but first I have to get over the hurdle that is my child being completely unable to predict consequences. Most of this book was founded on that premise.

Gosh disciplining would be a heck of a lot easier if my child GOT that small piece of the puzzle.

But I’m not going to go off on a negative rant here – no, I’m going to write about what WE do that (so far) seems to be working for us.

You know that phrase that parents use all the time “You’ve got to the count of three before I….” (insert threat of choice).

Well…I used to do that too, but I always ended up with a sobbing mess of a child who simply couldn’t process my request that quickly and would descend into a mammoth meltdown before my eyes.    So now I give him a slow count to ten instead and get the same result. He still knows that I am requiring obedience, but I am not rushing him and causing him more unnecessary stress.

And saying to one of my boys: “Remember what happened LAST time you did that” as a warning to not commit the same crime….chances are he is unable to recall it so now, I remind him as I go.

ie:

“Lucas – last time you tipped that jug of water on the floor – Mummy got really cross and you had to help me mop the floor so THIS time, I want you to stop pouring it NOW, before you get yourself into trouble” (side note – don’t ever use the phrase  ‘will get you into hot water’ on a literal child!)

And whether he is able to recall it or not – the message still gets through but without all the confusion.

Or how about when parents say to their kids:

“I want you to pick up your dirty socks and put them in the hamper, carry your soccer boots to the laundry, take out your lunch box and place it on the kitchen bench then put your school bag in your room”.

 If I said all that – I can guarantee you that NONE of it would get done and I’d have tears, tantrums and refusal on my hands.

I’ve had to learn that this is all WAY too much for an ASD child to process, there are too many steps to that command so I would then approach this scenario in one of two ways.

Either break the tasks up into single requests or write a list (for Ella’s age group) or draw pictures depicting what I needed to happen for the boys because they are younger.

I have to say that learning these methods and more have been life changing for us. A lot of the drama can be removed if I just remember to try to think like they do.

I’m continually trying to research new methods of how to help my kiddos and if anyone can put me onto a book that’s written specifically for ASD kids regarding disciplining and raising younger children – please write to me and share!!! I still need all the help that I can get!

And lastly – I have a handful of parenting books for typical children that are gathering dust  on my shelves.  Anyone wanna come and take them off my hands?  :)

Even if it is baby steps – it’s STILL progress :)

Amongst all the drama that has been going on around here lately – there have been some really great things happen as well that I really want to write about before I completely forget about them. It’s not all doom and gloom and there is some fabulous progress that has really gotten me excited. It’s all about baby steps. Nothing major but lots of little baby steps in the right direction. They all eventually add up to miles and miles of huge strides and cover a lot of ground in progress. I want to share these few little baby steps with all my autism Mother friends  :)

I have this framed on my wall. It's all of my children's FIRST steps ♥

Last Thursday (which was Lucas’ birthday – and the day that everything went pear-shaped), Mum and I took the kids up to a local shopping centre with the idea of buying a special birthday lunch for them all but it was cut short due to Lucas’ constant cries of pain so we rushed him straight to the medical clinic which is part of the centre.

While Mum and I stood in the middle of the food court trying to work out the logistics of who was going with who and what we were going to do with the groceries that we’d just bought that needed to be refrigerated, Harley was quickly reaching the point of no return. We were both oblivious to the crowds of people circling us, the music coming from the stage in centre court, the flashing lights and the singing. Our focus was in the moment.

But Harley’s wasn’t.

I glanced over at him just in time to see him suddenly go stiff and stand still with a look pain on his face. He then clapped his hands over his ears and cried out in a pained voice: “I don’t know what’s wrong Mummy…..but I feel really funny and really scared and I need to get out of here”.   He was clearly in sensory overload and really freaking out.

I looked at Mum and we both knew that he had become dangerously close to melting down and that he needed to go outside to escape IMMEDIATELY. No ifs, buts or maybes…..it had to happen or we would pay the price in a big way.

I grabbed Lucas and headed straight for the Doctors and Mum gently led a shaking Harley and Ella outside the centre to a quiet spot where she later told me that she hugged him tightly for about ten minutes until he was able to come down again. Apparently, Ella offered her cardigan to him and he wrapped it tightly around himself shivering and gradually the fear and anxiety subsided enough for Mum to finish the rest of her banking and shopping.

And that right there is a part of autism that I still struggle with even now. The complete bad timing of it all. It has no regard for schedules or whereabouts you happen to be at the time.  If Harley becomes this overwhelmed….it’s like a pressure cooker where the valve just HAS to be released. Life is never simple when it’s just so unpredictable.

But here’s where the silver lining lies:- I’m excited that Harley was able to recognise AND verbalise the fact that he was starting to get out of his comfort zone. He still wasn’t able to articulate exactly what was making him feel so out of control but it is a brilliant step up from this time last year!

We had another episode once we stepped into the Paediatrician’s office the very next day when Lucas was called back in. The waiting room was filled with crying babies, there was music on the radio, ringing phones, tapping on the keyboard and it was crammed full of prams, children and adults . I looked down at Harley and the tell-tale signs were there again. He looked at me and said “Mummy, it’s happening again, I need to escape here”  so Mum grabbed him and took him for a walk before it hit crisis point. What a champion!!!

And on a side note: I’m so thankful that Mum is here at the moment. I have lost count of the number of times that I have been in situations like this and Harley tips over the edge but I have no choice but to leave him in the place that is the cause of his anxiety and he just has to suffer through it.  It’s not easy wrangling 3 kids when one of them is in crisis mode and unable to communicate or cope at all. I simply have to keep him there and try to distract him because there is no-one else to help.  These times kill me because I HATE putting him under this kind of pressure and it’s not fair to expect him to conform when it’s literally eating away at his very soul. 

And even now that Harley is starting to recognise the signs – I still won’t always be able to allow him the escape he desperately. It’s why I don’t get out much and why I refuse most invitations that I receive. It’s just all too hard you see

But I’m not going to dwell on the negatives today. I’m going to rejoice that finally – I think I may have found the perfect paediatrician through all this drama!

I was SO impressed with him and will definitely be back.

The first thing that he said to me when I walked into his office was: “So Mum, you’ve got Bells Palsy – How long have you had that for and what was the cause?”   Once I explained that it was due to a brain tumour I’d had removed – he visibly relaxed and it wasn’t until later that I pieced this all together in my head and understood where he was actually going with that initial question.

I later realised that he was asking me because he needed to rule out MS and other conditions that cause facial palsy in case they might have been related to Lucas’ condition.   I call that thorough. I call that observant and I call that intuitive.

I then realised that he was brilliant!  Most people tell me that they don’t notice my lopsided face nowadays but this Dr noticed it immediately and didn’t miss a beat. He also didn’t treat me like a neurotic mother which sadly – is a rare occurrence in my experiences with the medical field in Australia.

But the icing on the cake with this wonderful man was when we arrived at the hospital and he had a paediatrician in training with him . She asked Lucas a question that he didn’t respond to and Dr Wonderful turned to his student and said “Could you ask that differently please – he’s autistic”..

Hooray!!!!!  He gets it!

I told Dr wonderful at the initial appointment that Lucas’ actual dx is Aspergers but he called it autism! HE CALLED IT AUTISM!

He then proved to me that he is NOT one of the medical professionals who just.don’t.get that although high functioning children are better off in some ways than classically autistic children – he was acknowledging that it is STILL autism and that our kids still need a lot of special allowances made for them.

All is well. Lots of baby steps all in the right direction.

Life is definitely looking up

The response we never knew.

I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.

I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.

But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.

Daddy was very concerned

For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have  Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.

This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?

The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.

***

The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.

Slumped in Mummy's arms. A familiar pose.

After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.

There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.

Otherwise known as: Survival mode.

He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.

I had no choice but to trust God and pray that he would be healed!

And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.

He certainly gave us all a fright!

Since he has been back home – he is smiling again, registering faces and even talking a bit.

He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.

There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.

Thank you

God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.

Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.

*sigh* JUST what we need – another sick child!

At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.

Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.

I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.

Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.

*Sigh*

If only Harley wasn’t a fighter.

Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.

I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.

Please get well soon Harley. We want our beautiful, affectionate charming little man back.

Baby steps and giant leaps in the right direction.

It’s been unusually quiet here lately.

Almost spooky because there is rarely a moment when there isn’t someone yelling or running and I’m not used to things being so calm. With Lucas being so unwell the past 5 days – Harley has pretty much had the house to himself because Ella spent 2 days with her friends at a sleepover. Mum and I have been able to just sit back and chill which is a new thing!

But as of this morning – Lucas is picking up and the noise is slowly returning!

It’s made me realise something very profound too. For a long long time, we have referred to Harley as our biggest handful and the most difficult child because he is the most vocal when he’s upset and the most sensory sensitive child. But he has been an absolute gem when he hasn’t had siblings or extra noise and activity to contend with and hasn’t been schlepped here, there and everywhere against his will. We haven’t left the house at all and he’s been as calm as calm can be.

Lucas has spent most of the past few days sleeping on the lounge and Harley hasn’t had to share any of his toys, hasn’t had to converse with anyone and has had free run of the house. He has even had Grandma all to himself because Lucas hasn’t wanted anyone but me.

It showed me just how hard it is for Harley to be a part of this family. If he were an only child and wasn’t faced with these daily onslaughts to his sensory system, things may be very different. There’s even a strong possibility that we may have never have found him to be all that difficult at all. Seeing the difference in him when he’s not forced to co-exist with his siblings is just remarkable.

But since Ella has been home again – Harley has had to share the TV, and since Lucas has improved and is moving around now – toys like Lego that were his alone earlier in the week are now having to be shared as well.

Whilst Lucas was laid out – Harley had built “special” things that have now suddenly interested Lucas who had wearily snubbed them only 3 days ago. Harley realised that nothing was sacred anymore. His reign of the toy room and it’s contents was over and he is NOT happy about it!

But – I’ve decided to use all of this as a teaching tool. Because when he grows up and enters the “real” world without Mummy to fight off all the nasty people and sanitize his environment – he WILL have to face annoying, uncomfortable situations with annoying, irritating people.

That’s just life.

Don’t get me wrong though – I do have a heart. I’m not about to toss him in the deep end and leave him to fend for himself, but my job as a parent is to guide him and help him to come up with solutions ON HIS OWN so he can approach challenging things all by himself one day.

And sadly – this may NEVER come easily to him. Simple things that you or I take for granted like entering a supermarket to grab a loaf of bread is a mine field for him. The flickering lights, the overhead music and the beeping of the registers is enough to send him into an overstimulated meltdown on their own without even mentioning the crowds of chattering people, the crying babies and the changes in temperature from aisle to aisle.

Most of things probably aren’t even noticed by the average person and are all considered part of the shopping experience but for Harley – they really really bother him. Sharon from Mamas turn now wrote to me once telling me that her son once told her that having aspergers is like having 100 different radio stations playing at the same time in his head. He has to work really hard to figure out which one he should to pay attention to and which he should try to tune out. Sometimes he gets the stations crossed. This resonated with me because it is EXACTLY how Harley has described things to me.

So you’re probably wondering how I’m going to bring this back to my point?

Well, here it is:

If I can teach Harley coping mechanisms for dealing with uncomfortable situations like taking turns and sharing with his siblings now when he is still little, it will make teaching him how to give a little and maybe go and see the movie that his friends are seeing that may not be his first choice when he is a teenager, or agreeing to go to the restaurant that his girlfriend chooses when he is an adult.  

And if I can teach him now ways to recognise when he is going into sensory overload – he may one day be able to escape situations before they escalate and potentially cause embarrassment to him later.  I’m trying to teach him to “walk away” and take a break whenever he starts feeling overwhelmed. If his siblings are making him crazy – I want him to know that it’s ok to leave but it’s NOT ok to lash out and hit them.

I appreciate that he is wonderfully wired and that I will never fully understand exactly what is going on in his head but he needs to know that I’m 100% on his side and doing the best that I can.

I’m also NOT trying to make him neuro-typical or into something that he’s not but I AM trying to help him to understand himself better and discover ways to help himself.  The fact remains that supermarkets will ALWAYS be nightmares to some spectrummites and we ALL have to buy food to survive but it doesn’t always have to be inescapable.

Even now I’m seeing massive leaps ahead in him like yesterday when he was so upset at lunchtime that he couldn’t find any words to tell me what he wanted for lunch and he started to scream and kick me but then he stopped dead in his tracks and went and grabbed a pen and piece of paper instead and drew a pie with the letters “pi” next to it and a piece of bread  saying “towst” to let me know what he wanted for lunch.

He remembered that he was going to get more results by writing it down than he would by physically attacking me. THAT was HUGE and I told him what a legend I thought he was.

It’s encouraging for me to witness these little triumphs because I KNOW that he is learning more and more about himself and to see the pride in his little brown eyes when he achieves something new just makes my heart swell.

So - sorry mate that your siblings sometimes present as great big hurdles to jump every day but I believe in you mate…..more than you know.

GO HARLEY!!!!

My babies are sick :(

I just realised that it’s been more than a week since I last posted. This is very unusual for me but is a big reflection on how busy I have been lately.

My Mum is here for the school holidays and to celebrate the 3 birthdays that we have this month and the kids are absolutely loving it.

Unfortunately, both of the boys are unwell at the moment. Harley not so much with only a slight temperature but Lucas has me really concerned. He has very high fevers – no appetite and is far too lethargic for my liking. He has been putting himself to bed and sleeping for hours through the day and also the whole nights as well. He has been surviving on watered down soy milk and nothing else. His eyes are heavy, he is very weak and I’m watching him closely.

I’ve always wondered why he seems to get sicker a lot more often than his siblings and why it always hits him SO much harder than anyone else?

I’m currently researching more about leaky-gut syndrome and have decided to start Lucas on the same GFCF diet that Harley is on ASAP.

I’ll leave you with these pics of my gorgeous little boys and you can see from their faces why I need to be with them more than I need to blog right now.

Hopefully I’ll be back soon but until then…..ciao

Exploring the differences between ignorance and intolerance.

This post was inspired by a friend of mine who is also a parent of a child on the spectrum.   His screen name is Ima Westie and you can find his blog by clicking on his name. 
I originally met him online through a support group for parents of children on the spectrum but have since had the pleasure of meeting him and his lovely wife in person.

Twice actually!

He recently left the following in a comment for me recently and it really helped me to understand a lot more just “why”  some people evaporated out of our lives when we needed them most.

“I think the support of people who ‘get it’ convinced me that those people who don’t just get it are ignorant. Just like I was, blissfully, four years ago, about what life would be today.

We owe it to them, and to our kids, to shine the light on their ignorance and allow them to see our kids as different, not less. We all need to remember that ignorance is our natural state, and while some are both ignorant and intolerant – most are just ignorant, waiting to learn”.

How true is that!?

It certainly cushions the blow for me now that I have (finally) realised that there is a massive chasm separating ignorance and intolerance. And discovering that it’s possible to be both ignorant AND intolerant but that only some people are just intolerant by choice was HUGE. It completely took the onus off me.

It got me thinking about something that happened in my OWN life only 18 months ago when I first started blogging.

When I first started out and still had no idea how to set out my blog or what kind of things to write about, I would do searches through google and read whatever came up. Sometimes I would find a great blog and then scroll through their blog roll and visit some of their favourite sites. This is how I came across a wonderful site written by a mother of a child with severe cerebral palsy. As I read her blog, big tears welled up in my eyes because the way she wrote was just so darn beautiful. It was obvious to the reader that this mother absolutely adored her child and that her baby had completely swept her off her feet. She was head-over-heels in love with her son and her commitment to giving him the absolute best in life was awe-inspiring.

I read through every single one of her many posts over the course of several days because she amazed me (and still does). Each post that I read got better and better and better, I just couldn’t stop reading. I was learning and I was becoming more and more informed and more and more compassionate towards her and many other parents in the same situation as her. I had always thought in my shallow understanding of this disability that it simply meant that the person affected was unable to walk. I had no idea that cerebral palsy affected so many different areas of her son’s life as well. For example: It isn’t always just a physical disability but often a psychological and in her son’s case - it caused mental retardation as well.

Embarrassingly enough, it never occurred to me back in my earlier blogging days that it was likely that most of my friends had no idea of what autism really meant either. I just assumed that no-one wanted to know because no-one asked me any questions or approached me to just “chat” about it.  I wrongly assumed that people didn’t care I didn’t even stop to think that maybe no-one actually knew HOW to do this.

Maybe they felt like I did when I read this cerebral palsy Mum’s blog?

You see – I never ever left a comment for this mother even though she inspired me and I had read and read and read about her and her amazing life with her beautiful son for weeks.  I never let her know what a great job I thought she was doing and I never reached out and gave her the cyber hugs that she probably desperately wanted.

Why?

Well…it’s simple really. I didn’t know what to write. I felt inadequate, uneducated and to be truthful - too fortunate. I mean – MY son could walk. He could also talk and he didn’t have any developmental delays to speak of, I actually felt like I was rubbing salt into her wounds by admitting that her life seemed so much harder than mine did.

Thinking about this today really brought the message home for me. The whole battle between ignorance and intolerance has been cleared up once and for all in my head.

For a long, long, long time – I was completely ignorant about most physical disabilities and because they didn’t affect me personally – I never bothered to learn about them because I didn’t NEED to know. I basked in my ignorance and at times – I suppose I bordered on intolerance.

BUT the major difference is that I took it upon myself to learn about cerebral palsy but even so – I still don’t feel anywhere near qualified  enough to ever offer any suggestions or advice to these mothers.

But you know what’s ALWAYS welcome?  …..  Praise, accolades and encouragement.

And I did just that this afternoon. I ventured over to one of my favourite blogs and told her that she inspires me and that I think she is a wonderful mother and that I am over here in Oz pulling for her all the way.

I have learned that I need to be more understanding of those around me and realise that unless they have walked in my shoes – they will never truly get it.

And that that’s totally ok.

Not ALL of them are intolerant, some are ignorant but most are just cheering me on from the sidelines in their own ways.

I want to thank you all for the amazing Facebook messages, encouraging email messages or those that stop me in the playground. Those that send me wonderful text messages and make  perfectly timed phone calls and to *Hannah in particular who has sent me a card a week (sometimes 2 or 3) EVERY week for the last 18 months straight.

You have all showed me that though you may not completely get it, you are definitely NOT intolerant. And can I just assert that I bet most of you actually know more than you give yourselves credit for? The fact that you keep reading just proves that you are keen to learn and to familiarise yourselves with something that you really don’t have to.

It truly means a lot.

To those awesome commenters that have written to me and said that you are now more aware and will remember something I wrote next time you see a situation being played out in the supermarket. This is absolute GOLD for me It means that the message is getting out.

This is what it’s all about. Spreading awareness and raising tolerance.

Autism is AWE tism…..Get it out there – spread the word.

Losing dread, finding joy

Dread : to feel extreme reluctance to meet or face something.

I used to really dread the school holidays.

The thought of having the kids home every day made me want to hide under my blankets and stay there until they were over and I knew that the possibility of having a peaceful household was all but gone for the duration. Often the constant drama that continually unfolded was usually more than I could take and I would spend the days wishing for school to go back just so I could get a moment’s peace. I regularly locked myself in our walk in wardrobe with my iPod turned up loud JUST to drown the kids out. It was the only way I could cope.

But that was then.

THESE days, I understand the reason behind the tears, the tempers and the general unrest (well…MOST of the time anyway) and can usually take some measures to try to avert them before they occur. I have learned that dread is a very close cousin of fear. I no longer feel afraid and therefore no longer feel the need to sit in the corner in the foetal position rocking and chanting “It will be ok, it will be ok, it’s all going to be ok” until I finally started to believe it.

***

Today was the last day of school for my kids for this term. They are now on holidays for almost 3 weeks and this time – I couldn’t be happier.

20 days of stress-free mornings, 20 days of not having to be anywhere at a particular time and 20 days of semi sleep-ins. (Well – 6:00 am is a sleep in here )

Many people think that children on the autistic spectrum need rock solid routine and while that’s true on some levels – my kids cope ok with only a loose routine provided that they are not rushed or expected to be something that they’re not.

The more “out” activities – the more stress. It’s a simple formula really!

I used to take planning to the tenth degree and schedule holiday activity upon activity thinking that they needed that structure to cope, but in essence – what I was really doing was over scheduling them and kind of replicating school – they very thing that they were supposed to be on holidays from! The expectations that I put on them was causing all of us so much stress that it hardly seemed worth it in the end!

They got so tired from having to be here at a certain time and there at another when all they really wanted to do was to just chill out at home with a DVD and their favourite things surrounding them.I discovered that play dates are great – but not when they turn into another “requirement”.

And now that I know all of that – I can also relax more easily. It turns out that they don’t WANT to be traipsing around parks, bowling alleys and cinemas all the time. They are completely happy to just stay at home and do their own thing. It’s easier, MUCH cheaper and allows them to actually benefit from the break by recharging their batteries and refuelling so that they can cope better with term 3.

My beautiful Mum is arriving next week and both of the boys birthdays AND mine are also coming up so we still have a LOT to do this holidays.  I’m very excited and have just started to see the light at the end of the so-I-guess-I-don’t-get-to-move-to-my-mum’s tunnel.   And that light is in Ella. She has really blossomed this year and her and three other lovely girls have joined forces and created a lovely little group.

image blurred because I won't put other people's children faces on the internet

The group is made up of two 12 years olds & two 11 year olds so it’s a great mix, they all complement each other brilliantly and are as different as they are alike. They all Skype each other EVERY afternoon after school and have already planned 2 sleepovers in the holiday period. It’s ALL they talk about and their excitement is contagious plus it’s making this mothers heart sing after the horrible bullying that my princess has had to endure in past years.

I couldn’t be happier.

And as much pain as I have been in recently as I have witnessed my dream of moving home become less and less achievable – I have found a way to rejoice in the beautiful friendships that my girl is developing and I’m relaxing into the knowledge that she is going to be A-OK as she heads to high school next year.

It’s true that God works in mysterious ways and that His ways are not our own, but I also think that sometimes I need to just pull my head out of the sand long enough to observe the sun shining all around me instead of just noticing the dark shadows that it causes instead.

Happy holidays everyone

Fi xx