Is it just a boy thing or is it something more?

Sometimes I am unable to discern the difference between regular ‘boy’ behaviour, normal sibling rivalry and behaviour that is typically and consistently attributed to having an ASD.

Because both of my boys are diagnosed with Aspergers, anytime that I see them BOTH doing things that I never did as a child – it’s too easy to assume that it’s an ASD thing.

But then I talk to other parents of typically developing boys and realise that their son(s) do some of these things too and I occasionally feel like a fool because it’s more than likely just a boy thing and I’ve made it into much more.

Or have I?

I’ve discovered that as mothers of special needs kids – we deal with all the same things that regular parents do every day…..and then some. Because everything is multiplied by thousands. And I mean EVERYTHING.

We experience much higher highs when we celebrate what is considered to be a small thing to an average parent – much lower lows because our kids struggle with basic daily tasks and HUGE swings between the two extremes daily.

Take for example: running away. Other mothers of boys have told me that their sons often wander off in shopping centres and have the urge to touch EVERYTHING in sight. Their sons also have trouble keeping their hands to themselves and they often misbehave in a similar way that mine do when we’re out. It’s just a boy thing they tell me. I hear the stories of how they remember the days when they were unable to take them ANYWHERE and how exhausting it was!

But they usually follow with comments to the tune of: “But thankfully he’s outgrown that now”.

Harley is 9 this year and still runs away regularly. He obviously hasn’t outgrown it and isn’t showing any signs of growing out of it. Because for him – it’s not an age thing. Nor is it a “boy” thing. When Harley runs off – it’s because he is terrified of the noises, the bright lights, the crowds and the brain overload that all of this stimuli causes. He will run away so that he can hide in a clothes rack or to sit in a far away corner rocking backwards and forwards crying because his sensory system reaches overload so much quicker than that of the average Joe.

And he doesn’t just instantly stop crying once removed from the situation either. The tears, aggression and emotional outbursts can last for literally hours after the event.

And when Lucas wanders off  – it’s because he is drifting along in his own little spacey world and is completely unaware of his surroundings at all. He doesn’t live in the moment and doesn’t realise that he has moved away from us.

My boys don’t run off to be naughty, they just have an uncontrollable need to escape whatever is that is sending them in meltdown or they are not living in the same realm that the rest of us are!

And as for punching up their siblings: Well, that’s just a boy thing too isn’t it? – Boys are naturally a lot more rough and tumble, and a hundred times more active than their female counterparts, so I’m not dealing with anything that they don’t all encounter daily either am I?

Well maybe not. But when you see your son going pale and crying till he almost vomits from the mental exhaustion that a school day heaps on him, the lashing out and physical attacks on his brother are often a sign of much more than just a boy being silly and rough-housing with his little brother. When he is this overloaded, he is not in control of his body and the punches are his way of releasing some of the pent-up emotions from just BEING that day.

And what about boys refusing to do homework because they would rather play than concentrate and sit still?

Sure – I know many boys who struggle to do this, but when you throw sensory issues, brain overload and mental exhaustion from trying to be what society expects all day instead of who you really are into the mix….than it’s likely to be much more than your child simply refusing to do what they’re told.

And I can imagine a lot of you sitting screaming at your computer monitors now: WHY DO YOU EVEN CARE???
DOES IT REALLY MATTER WHETHER IT IS A BOY THING OR SOMETHING MORE???

And I totally understand that it may seem that I am making a mountain out of a molehill here, but it’s important to me to define the differences. I was told only today that I have got to stop using Aspergers as an excuse for my son’s bad behaviour and that I need to teach him how to behave better.

Yes – I held my tongue but comments like this from people who don’t walk in our shoes are exactly why I write controversial blog posts like this one.

Because: that kind of perception is damaging and hurtful to parents of children with “invisible” disabilities such as Aspergers as it belittles our struggles and invalidates our achievements and successes.

I read recently in >>THIS<< fabulous post that it’s like they’re saying to us that autism isn’t real. When we are spoken to in this way – we are being told that we are attention seeking super emotional freaks of parents who should just sit down and shut up.

So let me take this opportunity to point out that I am not the least bit interested in being pitied and I’m not writing this to extract sympathy from anyone, but I want people to stop downplaying the struggles that special needs parents have with their children by trying to explain it away as something that everyone deals with.

And I also want to know the differences because: If it’s something that is “just a boy thing” I know that I have little control over it, but if it happens to be an ASD thing – I can research it, work on it and teach my boys the life skills that they will need to not only survive this big bad world but to thrive in it.

And I need to know for my own sake as well. Because I need to know that not everything is my fault. I need to know that sometimes – its ok to collapse under the weight of something that I have absolutely no control over. I need to be proud of how damn hard I really am trying here. I need to be able to sleep at night knowing that I did the best I could with what I have.

Because as I wrote earlier – special needs mothers do all the stuff that regular mothers do as well…..but then there are volumes of extras that are also required on top of that just to be able to even function.

But don’t get me wrong here: I certainly don’t OWN exhaustion or frustration and I know that every mother struggles from time-to-time with their children on some level. And I’m not trying to take that away from mothers of typically developing children because I don’t for a second think that any of you have it easy either. But I know from living it personally that mothers of children with special needs feel like throwing in the towel almost every.single.day.

For us – a good day means you were only kicked once. Or we only had to throw out 2 meals instead of 3. Or that your child didn’t punch their therapist. And a great afternoon might mean that you child only screamed for 1 hour over their homework instead of 4.

Most of us would love to be able to have only the occasional bad day or moment. But we were never given that option. But we don’t want our efforts and struggles reduced to a simple shoulder shrug and a throwaway comment.

That’s all I ask :)

A visit to the Doc

Today was a particularly hard day with Harley. For the better part of the morning he was an emotional wreck. He was an explosion waiting to happen and I wasn’t about to be the one to light the fuse so I walked on egg shells for all of our sakes.

The only method that worked here at home with the boys was the ole divide and conquer. I sent each of them to their own rooms to play separately.

I really HAD to do this otherwise there would be no point in keeping Harley home for a circuit breaker day. I simply couldn’t afford to ruin it by allowing them to bicker and argue all day, it was the best option of all.

This afternoon though, I did have to take Lucas to the paediatrician for a basic follow-up appointment after his formal aspergers diagnosis back in March, so Harley had to join us for that. I went prepared with the boy’s DS’s the iPad and some pens and paper. They both behaved brilliantly in the waiting room and I was SO proud of my boys.

Not long after we arrived another mother walked in with two little boys of her own and sat down beside us to wait. She smiled at me but she looked absolutely exhausted. Her eyes were almost hanging out of her head and she looked like she had the weight of the entire world on her shoulders.

I recognised that pain. All too well.

Her youngest son (who was 4) asked her in fragmented speech if she would help him to do the puzzle that he was holding and she sighed in resignation and lowered herself to the floor to join her son.

But he jumped up and waved his arms about frantically shouting “No Mama, I seat on your knee I will, no you on the floor”.

She looked up at me and rolled her eyes saying “The things we do hey!” as she climbed back up onto the chair drawing her little boy onto her lap.

I nodded in agreement and smiled back at her.

The little boy (his name was Steven) glanced at me shyly, frowned and then buried his head into his Mum’s shoulder whimpering. “That scary lady look-ded at me”

The mother smiled at me apologetically and offered me an explanation to her son’s behaviour : “I’m so sorry about that – my son is still learning how to be around other people” she sighed sadly and took a deep breath….“He has autism”

“I know he does” I answered. “It’s ok….really”.

“You do…..I mean….How did you….what did…I mean, I KNEW you looked familiar, but….can you remind me how I know you though, I’m so sorry but my memory is letting me down lately”…..she trailed off sadly.

No, we’ve never met” I giggled gently, “Well to my knowledge anyway, it’s just that…..I recognised the signs” I ventured hesitantly.

“Wow…..How?” she asked amazed.

At that point I gestured to Lucas and Harley who were sitting in the corner with their heads down focussing intently on their Ds games. Harley was also rocking back on forth on the spot and Lucas was humming to himself.

 “What do you see” I asked her….

She studied them for a bit and then she almost shouted:

Oh my goodness! ….  Are your boys….. I mean, have they….Um, do they also have autism?” She asked shyly.

 “Yep, sure do” I answered. “Both of ‘em”.

 “Wow…..I would have never have picked that” she said and then stopped herself abruptly……“Oh my God, I just did that EXACT same thing that I HATE other people doing to me”

I laughed.

“I HATE it when people tell me that my son doesn’t LOOK autistic and now I’ve gone and done it myself!   It’s SUCH an insult when they say it to me….like I’m lying or something!”

I laughed again and assured her that it wasn’t a huge deal. And then a few minutes later it was our turn to go in. I said goodbye to her and waved at Steven who had now warmed up to me and walked into the Doctor’s office.

The appointment went brilliantly!

He did the usual weight, height, blood pressure checks and then we started to chat about Lucas’ therapies.

He asked me about his early intervention group and I told him that it’s working out wonderfully.

He asked how he was going at Pre-school with his aide…..and I answered: brilliant again.

Next the Dr wanted to know if we’d finalised a school for next year and I answered that yes, that was taken care of too.

He also wrote down the names and numbers of the best speech pathologists that he could think of and sympathized greatly with our dilemma after the last one fell through.

We were just about to pack up and leave when he started to tell me about a social therapy group run by a wonderful lady that he described as a miracle worker for children with an ASD.

Harley playing at the group that he attends on Thursdays

And yep….it’s the same awesome lady that I wrote about *HERE* and Harley has been attending for almost 2 years now.

The Dr looked at me intently and made a remark that has put him in my top 5 all-time favourite people in my children’s medical life….he said:

“Fiona, can I just commend you on how much you do for your children. It really is so wonderful to see a parent like you that has taken your son’s diagnoses and run with them and given it your all. I have no doubt in my mind that your boys will be functioning so well once they reach adulthood that they you will barely remember the harder years that you are in the midst of now. It is only up from here on.”

Well, you could hardly wipe that grin off of my face after that!

I can finally tell all those people in my life who criticise me and my efforts – that it doesn’t matter what they think because my children’s Dr thinks I’m awesome!

:grin:

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!

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 :)

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?  :)

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!!!!

Um yes, that’s MY son :)

 This afternoon my kids have made me laugh on so many occasions that I could almost write an entire post just by writing them all down here.

But I won’t. I have the sneaking suspicion that a lot of them were really only funny to me. You know – mother’s love and all that!

But I will say that my joy and delight in them lately has all been about choice. VERY much so.  This afternoon as I sat on the computer on a Skype call to a close friend in the UK – the boys were tearing around the house screaming and laughing like maniacs.

.

I turned around in my seat and bellowed at them “You boys are so bloody noisy, you can be heard in England at the moment!”

My friend and I giggled and Harley gave me a puzzled look. Maybe he thought I was serious?

Anyway, I’d better get this post back on track because there are a number of different tangents this could take if I don’t pull back on the reigns now! I want to write about the parent/teacher interviews that we had last night.

Mr Patient was going to go alone but I didn’t trust him to ask the right questions in the end we decided to go together and take the kids with us.

Well….it seemed like a good idea at the time! :)

First we headed over to middle school to meet Ella’s teacher.

We waited for our turn and Harley threw himself on the floor in absolute disgust because he was bored and didn’t make a secret of it which I thought was rather funny but Mr Patient wasn’t impressed!
Ella’s teacher is lovely and she got a fantastic term 2 report . One line in her report said : Ella is very accepting, I never hear any negative comments or actions from her…

THIS made me beam with pride because she lives in a household that is very different to those of her peers and it has obviously taught her to be more tolerant.

We explained to him that she lives with a lot of “action” (I think that’s what we called it) and that if she sometimes appears a bit distant or vague – it’s probably because she is dealing with a lot after hours. He smiled and said that students with “action” at home tend to mature quicker out of necessity and I know that this is definitely the case for Ella. She’s my right hand and my helper a lot of the time and I often have to remind myself that she’s only 11 and realise that the boys are not her responsibility.

He asked us how she is coping “socially” which I thought was an odd question for a male teacher to ask but then it clicked that maybe it’s been mentioned to him that I suspect that Ella is a bit spectrummy herself. I’m not sure but if this IS the case, – I’m thrilled! I answered by telling him that the 3 girls that she has recently bonded with have been an absolute God-send for us and that we haven’t experienced any of the bullying from previous years.

All in all – we didn’t need to stay and chat with him for long because Ella got a glowing report and we couldn’t be more proud of her :)

Next we walked down to junior school to see Harley’s teacher and the entire interview was absolutely hilarious. She told us little happenings from the classroom which made us both roll our eyes because we could picture them all-too-well! Apparently he’s the little class clown. NO surprises there!  Only I don’t think he actually intends to be funny. He just is!

One of the funniest things she told us was about the day that Harley wrote out a story and handed it in and she was unable to read it so she asked him if he could read it to her. She said he looked at it and then back at her and said: ” I can’t read THIS – whoever wrote this is a TERRIBLE writer,How do you expect me to read it?”

When she told him that it was in fact his story, he shook his head and said “I really need to learn to write better don’t I!”

Yep….that’s my boy! Cute as a button but he makes me CRAZY!!!!!

At least things are settling down here now – only 2 more school days until the kids are on holidays for 3 weeks.

Now….where did I put that Valium?

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 :)

25 Things that I want my children to know….

*** image credit***  


I’ve been thinking a lot lately about what I really would like my children to learn about life and what I consider to be the most important things
that I can teach them in my role as their mother.

I’ve written them all down in the form of a letter that I will print up and give to each of them when they turn 18. I already tell them these things and hope that they will be practising them everyday long before they reach adulthood.

Here goes:

My dear, precious, amazing children,

1. Please know that I love you all so incredibly much. And love is most definitely a verb.

2. There is nothing that any of you could ever do that would cause me to love you less. But this revelation is not permission to break the law, intentionally hurt someone or create havoc. There is also nothing that I wouldn’t do for any of you. But don’t deliberately push me just to find out my limit.

3. There are not enough hours in the day to show you how special you all are to me, and I want you to remember that even when it appears that I am pre-occupied and too busy for you – I’m only ever a hug away. I will drop anything if any of you ever need me. And don’t believe anything or anyone that disputes this because it’s simply not true.

4. I believe that you are all capable of achieving great things and I will support whatever life decision you make.  Even if what you choose to do is non-conventional and low paying. As long as it makes you happy and you do your best.

5. Having an asperger’s diagnosis gives you a reason for anger and resentment but not a right. There is a big difference. Some things will always seem more challenging and harder for you than for others but it’s not an excuse to give up. You are all blessed with many talents and skills and you WILL succeed despite being wired a little differently to your peers. Use this to your advantage instead. Choose to excel.

6. Respect those that are in leadership over you. You may not always agree with them but respect has nothing to do with this. If you learn this – you will go far in life.

7. Treat other people as you would like to be treated yourself and always go the extra mile.  Let people cut in front of you in lines, pay for friend’s meals and be the first one to say “I’m sorry” .

8. Don’t retaliate. It only exacerbates the problem and makes matters much worse. It doesn’t achieve anything but creates more drama and grief.

9. Always take the high road  - The view is much nicer from up there.

10. Don’t argue for argument’s sake and don’t desire to be right at all costs. It’s just not worth it in the end. Agreeing to disagree is a safer and much kinder route.

11. Stay close to one another. One day your father and I will no longer be around and you will all need each other.  Even when you’ve all grown up and have gone your own ways – keep the sibling link alive and nurtured.

You will be pleased that you did.

12. Always do your best. You don’t have to always win, but as long as you gave it your best shot – that’s the most important thing.

13. Know what you want out of life and give it all you’ve got. Don’t worry if your dream is not the same as everyone else around you. We were all created differently for a reason. We don’t all have the same giftings.

14. There is no right or wrong choice when it comes to life plans.  The catch phrase I want you all to memorise and repeat as your life mantra is : Different is NOT wrong.

 15. Be who you are. Be who you were created to be. Don’t mimic other people because you envy their lives. Things are never really as they appear. Everyone has problems – some people are just better at hiding theirs than others.

16. Don’t sit back and expect everything to be handed to you. Work hard and work faithfully. God will see to it that you are rewarded accordingly.

17. Don’t believe everything that people tell you. If it doesn’t line up with the word of God and doesn’t sit right within you – don’t take it on board – it’s not for you. It’s ok to say no.

18. Don’t cheat and don’t be dishonest. You will ALWAYS be found out on both accounts and people will learn that you cannot be trusted.

Keep your integrity in everything.

19. Speak words of life and words of love. Don’t beat people down verbally and don’t always say everything that you are thinking. Once a sentence is out- it’s impossible to take it back again.

Think before you speak.

20. Choose you life partner wisely. Choose someone who you not only love, but someone who you respect. Make sure it’s someone that treats you how you deserve to be treated and treat them well in return.

21. Talk about everything before you decide to marry.

22. Ask the hard questions like:  Are we having children? When? How many? Where will we live?  What is our plan B if things start to go awry? & What is our ultimate escape plan as a family?  If you both know these things up front – most things can be worked out before they occur.

23. Aim high. Don’t settle for mediocre – you deserve the very best in life and don’t let anyone tell you otherwise.

24. Know your limits and learn balance. People pleasing is very taxing on your soul, your emotions, your family and ultimately your life. It’s impossible to serve two masters. Don’t let your work become more important than your family and don’t let anything become more important than your relationship with Christ.

Lastly and most importantly:

25.  Put your trust in God not man. Man will ultimately fail you because we are all only human but God will NEVER fail you or forsake you. He will never let you fall.

Love always Mum xxxxx


What was your first clue?

 I’m often asked what first alerted us to the fact that Harley could possibly be on the autistic spectrum.

 I remember sitting down and just watching Harley when he was a toddler as he gazed at things that most people hadn’t even noticed: The lights in the ceiling, the very tiny crumb on the floor that had been missed by the broom, the ticking of the clock on the wall, the dog howling 20 streets away and didn’t really think anything of it.

 He would sit for hours transfixed by the wheels on his little trucks and cars and spun them around and around never tiring of always getting the same result – they would spin until the momentum stopped them and he would then spin them once again.

 But on the flip side – he was agitated by seemingly EVERYTHING! And his attention span was (and still partly is) absolutely shocking! I had never known a child to be so whiney, so noisy, so discontented and so frustrating!

I was unable to sit him in front of the television whilst I showered because he would scream until he vomited. I couldn’t settle him in his cot and hope for any longer than 10 minutes break and I would spend hours nursing him to sleep in the upright position just to try and catch a few minutes shut-eye myself.

He reacted to every noise, every change of temperature and apart from crawling and walking – he reached every other milestone a long time after the books had told me was “normal”.

It really felt like life in general was completely incompatible with him but I still had no clue that I was dealing with something much bigger than me. I wondered where I’d gone wrong. I rang several parent help lines hoping for some advice I could use and was told the same thing over and over again…..”He sounds like a normal baby & by the sounds of it, your daughter was just a particularly angelic child. Stop comparing them and realise that babies cry- deal with it!”

I was convinced that I’d somehow failed him. All my friends were coping wonderfully with their second borns (or so it seemed) and one by one, they all drifted away.

I had resigned myself to the fact that sleeping in ten minute increments was as good as I was ever likely to get and believed that all of this was just a “boy” thing.

We had decided that we were only ever having two children regardless of the sex and when I fell pregnant with Lucas un-expectantly and found out that I was carrying another boy – I cried.

 No, actually. I sobbed, I howled and I grieved.

I simply could not face the prospect of having to do this all over again. I was caught between being thankful for this miracle child and peeved that I was never going to sleep again.

But then something really interesting happened. My Mum gave my phone number to a beautiful lady that she had met at work years ago and had become close to.

Her name was *Michelle and she had a (then 6-yr-old) son who was diagnosed with Aspergers Syndrome.

 She rang me up and I bawled and bawled on the phone to a complete stranger.

 Her son had also had silent reflux as a baby and had major sleep issues as well.

 HE made HER feel the same way that I was feeling!

 I met up with her the very next time that I went home to see my parents and we see each other most times that I visit now as well.

 On that very first phone call – she told me about the time that she had considered putting a wanted ad up in the supermarket “child for free” and that she didn’t even care about adding “to a good home” because she was just.that.over the constant crying,screaming and hard work.

 I nodded in recognition and told her some of the thoughts that had gone through my own head at desperate moments.

 She made me feel like it was all going to be ok. Something that I hadn’t felt in a very long time.

Over time, she started telling my mum some of the things that her son had done at the age that Harley was at and Mum filed them in her brain as something that she knew she needed to relay to me when the time was right.

Did anyone pick up what happened here?

Yes. *Michelle had her autism goggles on.

She was slowly training my Mum to look for possible indicators and had told her to ease me gently into it as she knew from personal experience just.how.hard.it.is to hear that your child is “different” for the first time.

 As Harley grew from toddlerhood into a school aged child, Mum relayed his speech difficulties to her …and the sensory issues….and the lack of attention span….and the fact that he rarely responded to his name and pieced them all together.

 She told *Michelle of the enormous sleep issues, the spectacular tantrums and the rocking,flapping and repetitive behaviours.

Mum was oh-so amazing in her approach to telling me but even then at first – I shrugged it off.

 My child was NOT special. Well….not in “THAT” way.

 I wasn’t going to have it. I got annoyed occasionally that she would compare Harley’s OTT behaviours to that of *Michelle’s son. But deep down in my heart of hearts – I knew she was right.

I KNEW there was a lot more going on that what I could see.

 I eventually had to admit that this wasn’t a simple case of “uncontrollable child” versus“hopelessly inadequate mother”.

 In hindsight – you’d think I’d have jumped at the chance to “clear my name” so to speak.

 The saying that if you’ve met one child with autism, you’ve met one child with autism rings loud and true here.

There are not two cases that will ever be the same.

 Each individual child on the spectrum presents SO differently and will never ever be like any other child.

 Each of them has unique talents, sensory profiles, special interests, likes, dislikes and personalities.

But one thing remains the same. Mother’s instincts are RARELY wrong.

 Even I knew that there was something not-quite-right about Harley even if it did take me a long time to admit and discover it.

I was too eager to listen to all the fair-weather friends and know-all do gooders in my life saying things like “He can’t POSSIBLY have autism – he looked me in the eyes and plays with other children”. They said what they thought I wanted to hear or even what they themselves truly believed….but even paediatricians rarely diagnose a child immediately.

 These people in my life didn’t have any expertise in the autism field but poo-pooed me for admitting that something was awry with my child.

And it was because of this that I blindly retreated into ignorance and denial.

So please……. If you have a child that you are unsure about-You can’t quite put your finger on exactly “why” you feel this way- sure, talk to trusted friends, talk to family but if you still feel uneasy after all this….I urge you to demand a referral to a paediatrician.

 Even well-meaning GPs dismiss mother’s concerns as paranoia or neuroticism. (is that even a word?)

 Do it not for yourself, but do it for you child.

Please. I implore you.

 They will thank you one day.

No rules day.

This weekend, Mr Patient took Ella on a 4wding weekend escape with his work.    Our entire family had the option of going too but the thought of spending two full days in a car with two children who HATE travelling made me shudder!

So the solution was for me to stay home with the boys.

It turned out to be a fantastic decision too. We have had SO much fun together.

When we all arose yesterday morning, I told the boys that it was a “no rules” day. BUT before you all start rolling your eyes and telling me what a fool I was let me explain…..   I am WELL aware of how literal my boys can be so I made sure that I emphasised that house rules STILL applied. ie: No hitting, punching, kicking or name calling and that when Mummy asks you to do something – you still need to do it!

The “no rules” part referred to the fact that there were no set in stone rules over what they were allowed to play with and for how long.

They chose Lego and baking of all things - I had to stop myself from reacting every time that I looked out and saw the Lego strewn from one end of the living room to the other but it was wonderful to see them having so much fun!

Anyone who knows me would know how hard it was for me to see this!!!

They created a lot of new and exciting Lego spaceships and I got an awesome video of Harley talking me through the way that his mega ship worked. Unfortunately, his real name and Lucas’  real name are all through the video so I  can’t put it on here but there was one  part where I asked him what his craft  was called and he said:

I don’t know but I’m going to build it  one day when I grow up”….“PROUD  MUM MOMENT ALERT!

But here is a photo of him with his creation instead :)

Check out the pride on his face!

And Lucas with his duplo spaceship!

After lunch, we headed into the kitchen  and made some white chocolate  biscuits. (cookies for all my Northern Hemisphere friends).

The boys were so excited to be helping  me in the kitchen. I’m ashamed to say that I don’t allow them to as often as I probably should because I HATE the mess that they make, but because I’d promised “no rules day” I had to let them have a go!

Harley can't resist the urge to play in the spilt sugar :)

This is serious work!

The best part!

 I just love the concentration on their faces as they measure and stir the ingredients!

That night, Harley asked me if Lucas could sleep in his room for a “slumber party” and he helped me move the folding bed into his room and make it up for Lucas.

They were SO excited and begged me to join them too!

I made us all some hot chocolates with marshmallows and we ate our biscuits in bed and they giggled because normally, this kind of thing is a big no-no and they felt SO NAUGHTY!!!! It was divine to see their delighted little faces at something that really is such a little thing!

We laid on the bed together taking silly photos on my phone and I stayed until they fell asleep before creeping out again.

   

Later on, I snuck back in to take these photos of my little sleeping babies with their teddy and puppy snuggle toys and vowed that we absolutely HAVE to do this again.

I desperately wanted my boys to remember this weekend and how much their mother loves them. I want them to realise that they are perfect just as they are and that I would move mountains for them. I know it’s been rough on them lately with my emotional turmoil being so tangible  so it’s moments like these that overshadow the difficult days and make them so much easier to endure when they do come.

It’s just a shame that life can’t always be this sweet.

Write til it’s right.

“Are you a writer?” enquired the elderly lady sitting at the table in the food court beside me today.

image via ... rehendhi.wordpress.com

I giggled No, not in the professional sense but if you’re asking do I write – then the answer would be yes. I write everyday” I answered.

 “What is it you’re pouring your heart into at the moment if you don’t mind me asking dear” she went on.

Err, well” I stumbled over my words “Just a whole lot of emotional poetry, a bit of ranting and raving and the odd bit of sense” I said as I smiled at her.

 “Well you certainly look engrossed and that’s the third page you’ve ripped out and screwed up dear so something is obviously bothering you” she said gently.

 “Nothing I can’t handle” I replied and noticed the wheelchair that she sat in for the first time and wondered what her life story was.

“Are you a mother?” she asked.

“Yes, I have three children” I replied wondering what it was that alerted her to this. Lucas was at pre-school today so I was out all alone and I didn’t think I was giving out a “mother” vibe.

“I thought so” she answered. I can see that you are churned up about something and I know that nothing can break you as much as when one of your children are going through something big”

I was amazed at her perception and smiled and waved as she turned her wheelchair around and bid me farewell and left with the parting words One day you’ll be able to remember today and marvel at how different life became” and with that, she waved again and drove off into the crowds to continue her shopping.

I sat there for a few minutes trying to process the conversation that I’d just had and wondered what it was that this lady had seen!

***

This morning after school and pre-school drop off, I went up to a local shopping centre and grabbed a coffee to start my day. I walked over to a table and sat down to enjoy it and right at that moment, my brain went into overdrive and I knew that I wasn’t likely to get a break from my swirling thoughts until I wrote them down.

I looked in my handbag and grabbed the pen and notepad that I keep in there and started to write.

It became clear very quickly that the small pocket sized pad wasn’t going to be anywhere near big enough to jot down the tornado that was circling in my head so I went to the dollar shop and grabbed a jumbo pad and started again.

I wrote and wrote and wrote until I started to feel more like me and less like the angry, damaged, hurting soul that seems to have taken up residence in me lately.

I wrote a poem today entitled “The stupid black dog” which was all about the cloud of depression that I have struggled with for years, but after reading it back to myself, I saw that it was WAY too dark to ever put on here!

I don’t want to scare off the 3 of you that actually read my dribble so it’s been filed under “darker days” to never see the light of day again!

And in case you’re wondering…..yes – it helped. A LOT!

Once it was out, my brain could then shift into a different gear and I was once again able to process the little things that threatened to drown me only hours before.

I realised again (and I hate to say it) – but everything comes back to flippin’ autism again.

Everything that I struggle with in my life at the moment, everything that stops our family from doing what we’d like to do, everything that’s changed our hopes and plans for our children  – all comes back to autism.

Everything that prevents my child from being accepted easily, everything that’s related to schoolwork struggles, everything that’s got anything to do with social graces, and everything that keeps me awake at night?

Yep. Autism.

It really is a bugger of a thing. :D

Sure – there are worse things in life. But this is OUR reality. This is what we live with day in day out and this is what I keep pushing through until I get the same results that “regular” families can achieve without even trying.

And yes – my children WILL achieve great things, they WILL succeed and they WILL be awesome at whatever they choose to do but it’s not gonna come easily for them! That’s just part of the deal.
I know that I am blessed. I know that I have amazing friends and family and I know that I WILL BE OK!

But sometimes……life really majorly stinks.

Oh…and something I’ve learnt lately – get a journal……seriously…..it’s fantastic and the cheapest therapist I’ve found yet!

Mummy needs a valium.

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

This was how this morning unfolded…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stupid move on my part!

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

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

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

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

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

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

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

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

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

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

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

Seriously.

Noisy boys

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

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

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

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

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

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

How did it go?

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

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

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

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

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

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

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

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

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

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

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

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

So….What exactly is a meltdown?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Agreed!

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

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

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

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

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

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

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

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

The meltdown affects EVERYONE around us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You never know what you’re gonna get!

Angry birds and Happy Children.

Wow!

What a weekend!  

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

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

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

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

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

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

~

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

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

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

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

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

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

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

So this weekend was very healing for both of us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now…..back to life as I know it….

*sigh*