MY kid is spectacular!

Today was a good day.

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

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

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

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

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

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

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

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

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

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

And thank goodness that I did.

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

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

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

**

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

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

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

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

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

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

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

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

Just don’t get too comfortable….

I think I may have written this post maybe 4 or 5 times over the past few days, but every time I’d read it back, I’d be unhappy with it so I’d delete it and start again.

I just can’t seem to write out what I need to write about without giving away too many details so I will only say that parenting an almost teenager is on par with raising autistic boys at the moment.

Holy hormones Batman!

Even my Mum has admitted that she didn’t have to deal with this kind of stuff when we were growing up. I guess times have changed and there are a lot more temptations out there for kids these days…sigh…

So yeah….things have totally sucked here. And no, I don’t believe that I’m being melodramatic either.

I have really struggled with guilt because I KNOW that Ella puts up with a helluva lot more than the average 12-year-old but I just can’t help the fact that the boys both require a lot more attention at the moment. So I have been feeling very torn.

And on top of that: it seems that Harley’s OCD has increased AGAIN, and frankly – he’s starting to unnerve me with his ever-increasing rituals.

I can handle the obsessive hand-washing. And even the counting of his steps is something I can learn to live with. But the vocal stimming and the repetitive questions that he needs to hear answered in exactly the same way each and every time – added to the irrational fear that he will cause harm to his family if he doesn’t do what his ‘stomach’ (?) tells him to that it will result in one of us dying….well that about tips me over the edge.

I mean seriously….it is becoming a huge problem for all of us and I’m staring to become unhinged. Its like living with Melvin from that dreadful Jack Nicholson movie “As Good As It Gets” but much much worse.

And he’s only 9.
Sheesh!

On a happier note, the boys both survived school photos and a fire drill at school this week with minimal after effects which is wonderful progress as far as I’m concerned!

And I have had my Mum here for the past two weeks so there have been an extra pair of hands to help me which is fantastic – except when they are needed to soothe frazzled children or hug an emotionally distraught Fiona.

But it’s all good.

Just don’t expect a coherent response from me for the next couple of weeks while I settle back into the chaos that is my life. Yep….Mum flies home tomorrow…..

But its okaaaaay…. I’m going to take deep breaths then count to 1 gazillion and then take more deep breaths. If you need me….I’ll be the one in the corner rocking and sucking my thumb!

Nah..just kidding: God will get me through.

Sanity comes at a price.

It was my birthday last week and my Mum said she had NO idea what to buy me so instead: she took me shopping!

And one of the things that I’ve always wanted was one of those little CD walkmans (Discmans) and some bright funky headphones. So she bought me both and I was absolutely STOKED!

(I think I may have been just as excited as I was when she gave me my very first Walkman when I was a teenager… Ahh…..the memories!)

I wasn’t sure if we would even find one in the shops because they are almost obsolete now with technology advancing the way that it is, but I was determined to find one all the same.

The main reason that I really wanted one was because I have a lot of teaching CDs that I’ve never had the time to sit down and listen to, and it would take me forever to load them all onto iTunes so this seemed like the next best thing to overloading my iPod.

Guess what? Not only did I find one, it only cost a low $44! Nothing like the hundreds of dollars that they went for when they first hit the market back in the 1980’s!

And there is an added bonus to these as well: They block out the incessant whining, screaming, crying and moaning that is an unwelcome constant in this place.

And for me…..you can’t put a price on that kind of peace.

Things have been more than a little rough around here lately. We’ve had problems with all 3 children on different levels and we have struggled as a couple to see eye to eye.

Like I said: Rough.

This week alone we have had some pretty huge fall-outs and meltdowns and Harley’s OCD quirks seem to have returned with a vengeance as have the sleep issues.

In fact, Mum and I were giggling today as we recounted the story to Paul of the night last week that he worked late and we spent literally hours trying to get Harley to stay in his room and sleep.

He had come out so many times one night that I finally resorted to piling up 2 heavy wooden chairs, 2 large suitcases, a cot mattress, a beanbag and cushions in front of his door to stop him coming out and even that only worked for a matter of minutes.

Mum and I took turns walking him back into his bed, reading to him, sitting with him, praying with him, brushing him and rubbing his back only to have him continue to refuse to remain in bed.

Lately, his OCD has extended to his walking in the sense that he has an uncontrollable urge to retrace every third step that he takes and he has to walk the perimeter of each doorway of every room that he enters before he can calm himself enough to actually walk inside. So walking him back to his room was made even more of a challenge by that!

He washes his hands literally 60 times a day so that they bleed and are raw and tender.

OCD in full swing is like something out of one of those movies where the audience laughs at the ridiculousness of the scene.  I remember watching movies such as Crazy People where the characters seemed so far-fetched that it really was quite laughable, but little did I realise back then just how debilitating living with OCD can be for not only the sufferer but their immediate family members as well.

My little Harley often complains that his brain is “full” or that it won’t slow down which causes him great anxiety and angst which usually results in him self harming in some way. (Like the excessive hand washing).

And lately, I think I may have had some insight as to what having a ‘full’ brain might feel like because I have had trouble getting my brain to engage when I need it too.

It has been sluggish but also frantic and somehow all at once?

I have struggled to make decisions (even more so than usual) and have desperately wanted to just escape and get away from everyone and everything.

Simply thinking straight has taken a lot of control and honestly it really seems completely futile because nothing….NOTHING is in my control at all right now.

But in saying that: There is a major difference between Harley’s autistic-ally wired brain and my neuro-typically wired one:  And that is the ability to switch off thought loops and obsessions at will.

I can choose to not think about things that overwhelm me. I can choose not to allow thoughts to override common sense and I can choose not to act out on impulsions.  Right now – he can’t do any of that.

I believe that he will one day be able to do this as well, but it will always be more of a struggle for him because of the way he is wired.

The good news is that he is wired to be superbly focused and intimately knowledgeable about his chosen interests. And this will help him to be amazing at whatever field he chooses to work in when he is older, but the downside is that he will have to learn how to just be.

He will have to learn how to slow down his thinking to give himself and his brain a rest once in a while!

He just needs to find what works best for him.

Writing it out and listening to music and teaching CDs are what work for me. Speakers such as Bill Johnson, Danny and Sheri Silk, and Joyce Meyer help me re-focus and replace the confusion with healthy thinking.

And this is why I so desperately wanted my Discman…..$44 is a very small price to pay for sanity I think.

Autism, haircuts and a mother who wants to run away!

I looked at my boys on Friday when they got home from school and realised that they were both long overdue for haircuts. I decided that it would be a good idea to get them done over the weekend because then I would have Mr Patient around to help me. But yesterday he had to go into work, and what was supposed to only be a few hours turned into 13 so he obviously wasn’t able to come with us.

Now, I’m not totally stupid – I wasn’t going to take all 3 kids out to a crowded shopping centre by myself so I wisely waited until today (Sunday) instead. I figured that the boys would be fine with the change of plans. And yes, I know what all you autism parents are thinking right now!

Silly SILLY girl!

Normally I would have written a social story or talked them through this minor change at the very least. And I should have learned from the numerous times that I have done silly things like this before – that changing plans without prior notice NEVER goes well.

Anyhoo….

**

We pulled up in the car park and before our seatbelts were even undone, the tears started.

It took Mr Patient almost ten minutes to coax the already-past-it Harley out of the car.

But getting him to walk wasn’t going to happen, So he had no choice but to carry him.

We arrived at the hairdressers and she asked the boys who was going to go first. And before they could answer: Harley took off.  He literally ran for the hills as fast as he could go. As you do when you have sensory processing disorder and you are confronted with being stuck in the middle of a crowded centre with strange noises, smells and bright lights.

So Mr Patient took Lucas and walked over to the hairdressers chair while I hot-footed it after Harley through the centre.

I eventually caught up to him and took my sobbing shaky little boy over down a quiet alleyway and stroked his head until he calmed. There was clearly no point talking to him. So I devised a quick plan in my head and we walked over to the nearby $2 shop where I bought him a squishy angry birds toy to squeeze. It seemed to do the trick and we managed to walk back and I was finally able to talk to him and ask him what kind of cool haircut he wanted. My distraction worked and we seemed to be right back on track again.

And finally he gave us a smile.

Not long from then, his turn came and he sat down in the special seat and (sort-of) let the hairdresser cut his hair whilst he squeezed Mr piggy vigorously. He stayed put to our delight and came out looking gorgeous.

We all realised that we were hungry so we decided to go and grab some lunch and started walking towards the food court congratulating ourselves on surviving so far.

Until we heard that tell-tale moan that we’ve come to know that means that trouble is looming. We turned around to see Harley crying and flapping furiously.

We sighed and I picked him up and carried him down ANOTHER side alley and it took a while but I finally managed to get to the bottom of this episode….It tuned out that some pieces of freshly cut hair had fallen down underneath his collar and was itching him madly. I could see that he was close to another meltdown and I knew I had to act quickly and I also knew that I had come unprepared so had to duck into a nearby shop and buy him another shirt.  I knew we’d never make it through lunch while he was in such enormous sensory overload.

So in ten minutes – with two of us holding him down and sprinkling baby powder on his neck and removing the old shirt and replacing it with the new one later – we finally made our way to the food court crossing our fingers, toes and anything else that we could think of!

But look at this:

A smile.

It was short lived because soon he started to obsess about having ‘dirty’ hands and wiped them vigorously with baby wipes whilst demanding that we take him to a restroom so that he could wash them properly.

But it was a smile nonetheless.

 

So, we gave in – took him to wash his hands and then again after he’d eaten and started to walk back to the car.

I saw this and grabbed my phone to take another snap – moments like this are precious.

And here’s the bit where I admit that I got home and burst into tears of complete exhaustion and got down on my knees and yelled at God.

Not because I’m mad at Him. Not because I think He gave us a bad deal in life but because I can’t for the life of me figure out why on earth he believes in me as much as He does.

Why does He trust me so much?

I know He will continue to give me the grace that I need to keep on keeping on but honestly, after today….I think I might go to  bed for about a hundred years! It’s all too bloody hard!

Wordless Wednesday 23rd May 2012…..Pick the aspies :)

I know this an old photo but it always make me giggle.

It’s not hard to tell who are easily distracted in our family is it?

How To Talk To An Aspie.

People often tell me that Ella is such a great girl/sister/daughter, or that Lucas makes them smile/laugh/giggle. And it makes me happy as a mother to hear feedback like this, but it also makes me really sad on another level.

Because; I rarely get reports like this about my precious little Harley.

And occasionally, I permit myself to think about the possible reasons for this and become sick to the stomach as I consider the possibility that I did this by blogging about him.

Have I used this platform to paint an unfair and inaccurate picture of him? Have I magnified the not-so-pleasant parts of autism therefore causing him to be branded as a troubled child?

Well. No. I don’t believe so.

I spoke to my Mum about this and she pointed out that she has read every single post I have ever written and assured me that the major theme that shines through them all is total compassion and unconditional love for my sweet boy. And I believed her because I KNOW that I never once have tried to vilify him in any way.

Harley is a challenge yes – but he is not a bad or naughty child. But sadly, there have only ever been a handful of people in our lives that have bothered to get to know the beautiful loveable little Harley that lurks beneath the aggression and aloofness. A lot of people simply refuse to look past the often sulky, highly anxious and sullen faced boy that he so often presents to the world.

But I’m here to say that he is special, he is a joy and a remarkable example of God’s grace and perfect workmanship.

It occurred to me a couple of days ago when talking about all of this to a friend, that this is more than likely a case of other people not knowing HOW to talk to him or respond to the sometimes awkward interactions with him. It’s highly probable that a lot of friends are unsure of what to say or how to say it and are afraid of causing offense so opt to play it safe by saying nothing instead.

And hey…..I totally get that!

But Harley is extremely intuitive even without being skilled at reading body language or facial expressions. He knows instantly when someone is uncomfortable around him and he responds accordingly.

So I thought it might be interesting and possibly helpful to write-up a short list of do’s and don’ts when interacting with MY aspie.

And my disclaimer up front is that I don’t profess to know all there is about aspergers or how each individual differs, but I can give an insight into MY aspie that no other could, so bearing that in mind….each point will be written ONLY about Harley but a lot of them are transferable to other children on the spectrum as well.

So here goes, I’ll try to keep it short

DO

• Acknowledge Harley by using his name when greeting him. Sometimes – particularly if you’re in a crowded environment or noisy area – he will be overwhelmed and not listening when you speak. Hearing his name will alert him that you are talking to him.

• Repeat the greeting if necessary. He possibly didn’t hear you.

DON’T

• Take it personally if he grunts/groans/scowls or snaps at you. It’s more likely that he is overloaded sensory-wise than being oppositional.

• If he refuses to answer – don’t push him. It may seem that he’s being rude, but I’ve learned that this is not because he doesn’t like you. There may be a thousand reasons that often even I am unable to figure out.

DO

• Speak to him like you would any other child. He is at an age now where he detects if you’re talking down to him.

DON’T

• Expect him to eye contact you. He is unable to speak and maintain eye contact at the same time, Just because he isn’t looking at you doesn’t mean he isn’t listening.

DO

• Find out about Harley’s special interests and weave them into conversations with him.  This is how my Mum and now another close friend have gotten into Harley’s world. Sonic the Hedgehog opens up a part of my boy that nothing else can.

DON’T

• Tell him that he’s a big boy now and shouldn’t be playing with Sonic/Teddy bears/My Little Ponies/Toy Story or Cars paraphernalia. Children on the spectrum often have an ongoing and lasting interest in toys or gimmicks that aren’t what society (or toy companies) deem to be age-appropriate.

DO

• Show an interest in what he is talking to you about however mundane it may seem to you at the time.

DON’T

• Finish sentences for him even if it’s obvious where he is going with it. This frustrates him and makes him lose his train of thought and he gets quite anxious. He needs to get sentences out fully before he can move onto the next thought.

DO

• Follow my lead.  I have learned how to read his vital signs most of the time and I always try to cater to what I’ve sensed in him.   If I say something along the lines of: “I’m so sorry but we really have to leave NOW”, listen and respect that. Please don’t try to illicit conversation from him or tell me that “he’s fine”.

DON’T

• Think that I’m shunning or avoiding you. I am just trying to save my son some dignity and remove him from situations before he loses control and possibly embarrasses himself.

And I have like a thousand more to add but right now, I’m going to turn it over to you my loyal readers: What would you like to add to the list and I’ll try to include them all in  ”How to talk to an Aspie Pt 2″  :)

.

.

What I’ve learned these past few years.

Sometimes, no matter how hard you try or how much work you put in, there are going to be days that are harder than others.

That is the nature of autism.

It’s neither good nor bad. It is what it is.

And when you love someone with autism, you will keep putting one foot in front of the other until the hard times pass because the joy that is at the end is indescribable – the rewards are priceless.

And that my friends; makes all the harder times worthwhile.

What has autism taught you?

I am the mother take 2

It’s time for another “I am the Mother” post.  I still smile as I read the ** Original Version ** that I wrote because a lot has changed since then

These days:

• I am the mother who is fluent in sarcasm but knows that she shouldn’t use it as often as she does.  Especially on her children who don’t understand it.

• I am the mother  who sometimes buys treats and hides them in the house because she is tired of sharing everything else that she owns and wants just one thing for and ONLY her.

• I am the mother who owns 2 diaries and a calendar in the attempt to become more organised but has misplaced them all  :/

• I am the mother with the short attention span who often really struggles to focus due to her constant sleep deprived state.

• I am the mother who really wishes she could toughen up a bit and not get so hurt by other people’s words.

• I am the mother who definitely thinks that exercise is overrated. Come and live in this house and try to be idle with my kids around. Not possible.

• I am the mother who wishes that she didn’t comfort eat so often.

• I am the mother who would rather be accused of talking too much then be the kind of person that you need to draaaaaaaaaaag a conversation out of. This is who she is. Like it or leave

• I am the mother who really wishes that school went until 5pm and that homework didn’t exist. She is exhausted from spending twenty minutes just trying to get her son to sit at the table and another 20 minutes convincing him to pick up the pencil!

• I am the mother who secretly loves watching pre-school tv shows and misses them now that her baby has started school

• I am the mother who still cries at least once a week because she misses her Dad even though we lost him over 4 years ago.

• I am the mother who is unable to eat just one grape. The grapes HAVE to be eaten in pairs. One on each side of the mouth. (Hmmm, wonder where Harley gets his quirks from?)

• I am the mother who gets cranky when she’s not taken seriously. I may not have a fancy degree but I know my children better than anybody else on this earth and that should account for something…

• I  am the mother that rearranges other people’s cutlery drawers when she visits their homes. It must go in the same order that they are laid on the table : Fork, Spoon, Knife. She doesn’t cope if they are different  And incidentally,  I am the mother who didn’t develop OCD tendencies until she was thrust in the world that is ASD and the stress that goes along with it!

** image credit

However:

• I am also the wife who deliberately stacks the dishwasher incorrectly because she thinks it’s funny to see it un-nerve her husband, and the wife who likes to rearrange his Star Wars Lego for the same reason

• I am the mother who gets to witness MANY achievements and successes in her children’s lives and is finds joy in the smaller things because for us they are HUGE!

• I am the mother who is convinced that her children will go higher and grow stronger than a lot of people give them credit for due to the handful of people that DO believe in them and their go-get- ‘em attitudes.

• I am the mother who is thankful that God is daily giving her more and more insight into their little worlds so that she can understand them just that little bit more.

• I am the mother who would some days like to hang up her hat and resign. Or at least have a couple of weeks paid leave. Several times a year.The mother who didn’t read the fine print before putting her hand up and volunteering to do this job BUT the mother who doesn’t walk away from somethings that she’s started until she sees it to completion.

I am feisty, I am compassionate and I am a fighter.

My children will not fly under any radars and they will not go through life feeling like failures.

What kind of mother are you?

Where do I go from here?

When you read today’s post – please keep in mind that I’m not looking for sympathy. I am working through this in my own way by writing it out. I am not angry, or depressed or complaining, but I have found myself to be at a bit of an impasse and not knowing which direction to head in.

I  love my kids and am fiercely protective of them but on occasion…..there are parts of their brands of autism that drive me stinking crazy. Hence this post.

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

Ok. Ground rules laid out, let’s begin.

Most of you know that both of my boys are diagnosed on the autistic spectrum, and most of the time I’m ok with that. But if I’m being completely truthful with myself, I can admit that a lot of the time I also feel quite ripped off.

And there’s another emotion circling overhead that looks a lot like jealousy or anger but I’m refusing to admit that either of them are possibilities. So for now they will remain known as ‘the unknown factors’.

OK  ;)

And it’s not so much that I’m ‘jealous’ of the normal families that I seem to see everywhere – because I’ve mostly dealt with the fact that this is our life and that it’s ok to be different, but surprisingly I’m MORE ‘jealous’ of those families that only have one child with autism.

I’m ‘jealous’ of the fact that they can focus on that child’s needs alone and of the lengths that they are able to go to, to ensure that their child’s needs are mostly met.

I read stories about new techniques that they’ve learned and methods that parents have implemented and wish that there were some way that I could make them work for us. But I know that I can’t put one child’s needs on a higher priority than the other and I know that I am not able to always to meet both of their needs at the same time.

Sure, I join these parents in rejoicing when their child makes progress or learns something new but there’s a part of me that inwardly cries out: “My child could possibly learn that too if he were the only one I had to put the extra time and effort into”.

Because let’s face it. There’s no doubt that raising children is hard work full stop.

And raising multiple kids kicks it up a level. But raising children with a special need kicks the difficulty factor up a helluva lot of notches.

So trying to foresee and plan for 2 kids with completely opposite high needs – is nothing short of bloody ridiculous.

Most afternoons in the car on the way home from school – there is screaming and/or crying.  And most of these episodes can be attributed to the two boys driving each other stark raving MAD! The problems arise because they are both needing to escape from their brain overloads but because their sensory profiles and emotional needs are polar opposites – they do what calms them in completely different ways.

Harley goes into a trance like state where he shuts down and sits quietly with his arms wrapped up around his bended legs. He finds comfort from gently rocking back and forth and gazing out the window. I have learned not to ask him about his day or try to converse with him until he has had his down time and I know he will come to me when (and if) he’s ready to talk later on.

And this would be great if he were able to do this in peace each afternoon. Ella and I would gladly leave him be until he was ready for company. If he could spend the car trip home defragging from his day – I’m sure that our entire afternoons would be a helluva lot smoother.

But our problem is that Lucas also needs to defrag as well. But he gets his release from vocal stimming. He hums, makes throaty repetitive noises and flicks his fingers over and over again. He talks non-stop in boring monologues and pointless rhetoric.

And as you can imagine…..all of these…drive….Harley…..CRAZY!

So then the tears begin.

The tears quickly turn to moans, then to thrashing in his seat and eventually he screams at Lucas with his hands over his ears begging him to stop making those noises.

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

Do I try to stop Lucas from making noises (that really are quite harmless) for Harley’s benefit?

Or do I try to teach Harley to ignore it and give him headphones to wear instead. (Which I have done many times).

But then, there’s the part of me that wonders if I should be doing a better parenting job. I wonder if I should be using situations like this to teach them both a thing or two about life. Should I use the moment to teach Harley that there will be many times during his life where things  will annoy, frustrate and irritate him but that he needs to learn to suck it up occasionally. Or should Lucas be taught that his noises are irritating to other people and that he needs to control himself better and point out that people in the real world will tell him to shut up if he continues that into adulthood.

Well I suppose the time will come that both of these issues will need to be addressed, but then while my own brain is processing these thoughts, my mother heart takes over and tells me that it’s my job and responsibility to provide what they BOTH need and give them the grace to wind down from a busy day in their own individual ways.

And then the guilt begins.

Eventually my head starts to hurt and I react like I did today: Today it all got too much for me, so I pulled the car over on the side of the road, turned off the ignition and climbed out of the car for ten minutes to let them fight it out alone. I stood beside the car with my back turned to them just taking deep breaths and I counted to 100.

I totally bailed on them both.

And I did it because I simply didn’t know which child to help. I couldn’t prioritise either of their needs and problems and I couldn’t work out which decision to make. All I knew was that I needed to get as far away as possible from the chaos that was unravelling right before me and that I needed to escape immediately.

Anyone that has ever tried concentrating in traffic whilst children scream, throw things and kick the back of your seat will know that in situations like this, escape is not only highly desirable but also entirely necessary.

I did what I had to do to prevent me from having a car accident. And I would do it again in a heartbeat.

I’m still left wondering: How the hell do I fix this?

And why doesn’t anything seem to work?

I’m sure that both of them would be AOK if they didn’t have each other. If I only had Harley, I could provide that quiet safe place. If I only had Lucas, I could allow him to make the noises he needs to and run and bounce to his heart’s content. But I wouldn’t want to even imagine life without either of my precious wonderful boys.

But this isn’t just about a car trip each afternoon. As my friend puts it – I am living in a constant combat zone.

If it’s not the car, it’s the dinner table. If it’s not the dinner table, it’s in the bathroom with gurgling and teeth cleaning noises. Or the trampoline and the joyful yelling that goes along with it, or the TV noise levels, or the volume on the iPad. We leave one combat zone (the car) each afternoon to leap straight into another one that’s equally as exhausting and demoralising. And it continues well into the sleep combat zone.

And then I’m back to my original thought: Am I jealous, angry or is it something more?

Where do I go from here?

Someone’s having a birthday!!!!

This is me on my 2nd birthday. Gotta love the 70s'!
The cute blondie on the right is my BFF *H who incidentally is STILL my best friend to this day

Yesterday my blog turned 2!

Hip Hooray!

My very first post was over on my original blog “Welcome to the Madhouse” which I later merged in to Wonderfully Wired as I felt the name change was more appropriate.  (Though there are many days that I seriously still wonder about that!)

Since then I have written just shy of 900 posts, had 11,805 comments and have had 72,679 page views.

WOW!

In that time I have shared my highs, low and everything in between online.

Some would say (and have said) that putting myself and my family ‘out there’  is a huge risk to take, but for me – I have nothing to hide so why should I?

I am the same in person that I am online and have never felt the desire to create an online personality for the sake of being ‘liked’. This is me, warts and all.

I am often outspoken and too opinionated for my own good. I get worked up easily when I am passionate about something and tend to shoot from the mouth (or fingers in this case) without knowing all the facts, and often hindsight comes up and bites me in the butt.

But I have good intentions.

I seem to have a faulty connection between my brain and mouth and forget to put the filter firmly in place before going into battle.

For me – blogging is all about creating awareness one person at a time.

I am no-one special, I am not expecting to be a world changer but I don’t want to sit back and whine about no-one understanding our life or how autism looks in my family and do nothing to remedy that.

I vowed to my boys that I would do everything in my power to teach people about autism so that they can grow up around people who have a much broader understanding of how the world looks to them.

I made the choice to not allow their diagnoses to sink me but instead used them as a springboard for catapulting me into action.

And in the process, I’ve learned a very sobering fact: That not everyone out there will understand my motives or intentions.

Not everyone will agree with my opinions and not everyone will like me.

And that’s been tough for me to have to come to grips with because I never knowingly set out to offend anyone but as it is – we are all different and we all see things in our own unique ways.

And with that said – I sincerely thank all of you who have stayed on this journey with the Wonderfully Wired family and keep the encouraging comments coming – I am spending the afternoon today catching up on replying to you all. I apologise for being so slack with this aspect of blogging but please know that I read each and every comment and cherish them all. Time truly is the culprit here. I don’t have a lot to spare and that which I do have tends to be taken up with something or another!

Good intentions remember! LOL

Have a beautiful weekend  – love yas all!

Executive functioning and visual aids.

Temple Grandin once said:

“I cannot hold one piece of information in my mind while I manipulate the next step in the sequence.”

Individuals with AS often lack the ability to use skills related to executive functioning like planning, sequencing and self-regulation.

>> Source <<

So, What is executive functioning and how does it affect those with autism? Well….in autistic individuals, it’s more of a “dysfunction” than anything else because it is something that many of them struggle with greatly.

Put simply: Executive Functioning is something that is instinctive in those with NT (neuro-typical) minds but needs to be taught and learned in children with autism.

It includes skills like planning, organisation, attention being held and the inability to see the big picture. People with an executive dysfunction tend to focus on the small or minor details and miss the rest.

As Temple Grandin said in the above quote –  She is unable to ‘plan ahead’ if she’s in the middle of a different task.

Can you see how many problems this can cause for my kids? Yep. A lot!

I often have to stop myself when I’m giving directions to them because I remember that I have given them too many instructions and that they are unable to take it all in and act on it.

Like – telling the kids to “tidy up their rooms”. That is waaaay too general and non-specific. So I have to break it down into little bite sized chunks and walk them through it step-by-step.

We are a big fan of using visuals in this house. We have them everywhere! On the fridge, above the basin, on the toilet wall, in the shower, over the bath, in the car and on their wardrobes reminding them to do the basic tasks like getting dressed. A simple picture of them getting dressed wouldn’t work, they need the sequence that the clothes need to go on.

And visuals are useless if you don’t teach your child how to use them effectively and have them teach you back so that you know that they fully understand the purpose of them.

As you can see in the above picture, all the tubs in our toy room have enlarged photographs on them of their exact contents. This makes it so much easier for the boys to tidy up. If they don’t know exactly where something goes they can look for it in the photo.

Below is a short video of Lucas and I today “tidying” up the toys and you can see how the technique has started to work but still needs a lot of work (on my part too).

Sure it’s a much longer drawn out process than if I tidied it myself, but it’s important to me that my kids learn these basic life skills so that they can take them with them into their adult lives.

****

Oh , and I actually managed to post on my poor neglected ‘fun’ blog today as well. Just a silly poem about school holidays. You can read it by clicking >> HERE<<.

****

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

A brand new ending.

Everyone told me I’d be sad when my youngest child Lucas started school.

Well ok, I am sad, but not for the reason that people expect. Sure I miss him but I’m not distressed or pining for him. I’m excited for him and am thrilled to be able to finally have a minute to myself to take a breath.

No-I’m sad because right now it feels like I’m watching a movie on repeat.

But because I’ve watched this stupid movie before and I know how it ends, I know that short of walking out of the room – I’m going to have to watch it to completion in wide screen view whether I like it or not.

It’s like an annoying case of déjà vu.

And this stupid movie is all about Lucas’ coping mechanisms for school – It seems that they are on red-alert ALREADY! And it’s only day 2.

I really thought we would get a LOT further in than this.

Sigh!

One of his teachers approached me this afternoon and asked how he went last night at home. I sighed and admitted that he was a complete basket case. Teary, emotional, cranky, tired and unapproachable but I didn’t think anything of it because I assumed that all Kindy kids were feeling exactly the same way.

Weren’t they?

But I didn’t tell anyone this.

I told everyone who asked me how much he loved his first day of school…and he did, but he didn’t cope very well.

So why didn’t I admit it?

Well…because I didn’t want to be THAT mother again.

I didn’t want to play the stupid flippin’ autism card this early in the piece.

I’m sure everyone is sick and tired of hearing about the hassles we have had with Harley and I wanted SO BADLY for it to be different this time. I deserve that at least don’t I?

It seems not.

This morning after the bell rung, the children all sat in the quadrangle and were taken off into their new classes one by one. All of the kindy, year 1, year 2 and year 3 kids had gone to their classes but I spotted Lucas (because he was the only one holding a stuffed monkey) sitting in the quadrangle amidst the much bigger year 4 kids looking lost and confused.

I alerted the teaching staff and he was walked to his class. I should have known then that the day started on the back foot.

And this afternoon, the teacher who summoned me mentioned that Lucas had a lot of trouble settling today. He didn’t understand or follow all of the instructions, he chewed relentlessly on anything that he could get near his mouth and he seemed overwhelmed and bewildered by the kids surrounding him.

She said that he had a few teary episodes but other than that he did great.

My heart sunk right into my shoes. This was all sounding waaaaay too familiar for my liking – It’s the same dumb movie that I have been watching for the past 4 years. Only this time it’s an updated version. This time it has extra added special effects. 3D in fact – the 2012 version.

I started to fret but then made the decision that I absolutely wasn’t going to have this. It doesn’t have to be the same movie replayed time and time again and I decided then and there that I refuse to be just another passive movie patron anymore.

Not if I had anything to do with it.

It was a real light-bulb moment for me when It dawned on me that I know the original and only author of life.

The alpha and Omega. The beginning and the end.

My God is the Director AND the Producer of everyone’s life movies and I know Him personally….I’m telling Him to go back to the script writers and demand that they change the stupid ending. I’m not having another drama on my hands. This one’s going to be a feel-good movie with a lot of comedy for good measure and a happy ending. People are going to talk about this movie for ages. It’s going to be a family friendly movie with a ‘choose your own adventure’ clause. And it’s going to be AWESOME!

None of this ‘woe is me’, ‘my poor child is destined to be a mess’ crap. This is going to be a great year for all of us.

Ok. So that’s settled.

Next task : Search for the stupid oxygen mask that I seem to have momentarily misplaced!

Dear Teacher…

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

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

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

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

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

Top points for her!

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

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

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

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

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

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

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

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

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

~

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

~

All ready for big school!

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

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

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

Wow…..where did all those years go?

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

Unsent letter

To the person who has hurt us,

You do know who you are,

I want to tell you here- right now,

That you have gone too far.

.

I want to let you know that we,

Still love you just the same,

But it hurts me when you judge our ways,

And give me all the blame

.

You know my life is not like yours,

And it will never be,

I do the best with what I have,

So please don’t bad mouth me

.

My children know that they come first,

And have my full attention,

So forgive me now, if you’ve to wait,

And I am not perfection

.

I feel that you just inward look,

And make it all about you,

But in THIS house, we’re not that way,

You never seem to approve

.

I’m sorry if you feel that I,

Have been a dreadful pain,

I have no time for childish rants,

It’s puts me off my game

.

My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

.

I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

.

I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

.

So instead of focusing on yourself,

Why not offer to shoulder our burden,

And walk a mile in different shoes,

Before just spurting your poison.

.

I work so hard but still you want,

To criticize me and complain,

You won’t believe in ASDs

So it’s always just the same…

.

I’ve tried to tell you all I can,

But you don’t want to listen,

So saying that I am “not right”

Has been your latest mission

.

If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

.

The things that you’ve complained about,

Weren’t done to tick you off,

My heart was right, and full of love,

But now….I’ve had enough

.

I can’t go on pretending that,

Everything is now okay,

I’ve tried my best – but it’s not enough,

I’ve nothing left to say

.

I truly hope that you get to,

The place where you find peace,

I pray that God will bless you lots,

And that this tension now will cease…..

Distillation in verse.

It’s ok peoples

You don’t need to worry about me….I’m not in a terribly bad place….well not exactly a great place either, but it’s nothing to be concerned about.

I was in a bad (ish) place earlier on but I have worked through a lot of the ‘stuff’ and ‘nonsense’ and some of it has been dealt with.

Some of it

I’m just attempting to clear my head of the thousands of crazy, ridiculous,persistent and nagging thoughts relating to certain circumstances that have plagued us as a family lately, and for me personally – I find that using the medium of poetry is particularly cathartic.

Head is spinning,

Eyes are sore,

Tired of crying,

I can’t take any more.

.

Questions looping,

Answers not there,

Frustrated, angry,

Not wanting to care.

.

Desiring, needing,

Wanting some peace,

Anger is building,

It needs to be released.

.

Tired of fighting,

Nothing seems to work,

Wanting to escape,

But this ire still lurks.

.

Praying, pleading,

Wanting to be free,

Crying and hurting,

This really isn’t me.

.

Sleepy, weepy,

Knowing this will pass,

But not wanting to wait for it,

Is that too much to ask?

Tidal waves.

I find it disconcerting to say the least when my child has a bad day, because a bad day round here doesn’t look the same as a bad day anywhere else.

No.

It looks like an angry tidal wave that is threatening to wash away everything in its path. You can’t escape it and there’s not a lot to grab onto to steady yourself anyway.

Everything seemed to be sailing smoothly this week until yesterday when Harley came home and flew into a rage that was completely unprovoked, unpredictable and unexplainable. As he ran through the house pushing things off shelves, kicking doors and walls and banging his own head repetitively on the cold, hard tiled floor, we stood by watching him helplessly knowing that we had to let him ride it out.

We knew that it was something big that had caused him to react this way and we also knew from painful experience that the underlying reason may not be something that would be discovered easily.

Although he appears to be in the fight response when he is like this, his inability to form coherent words when he is in this distraught state of mind causes him to cross over ever-so-slightly into flight mode. He mentally shuts down and his eyes glaze over as he searches frantically for a safe place. He needs to escape his own brain and he cannot rest until he does. He has been telling me in the days leading up to now that his brain feels fuzzy and that his head is telling him to stop spinning. I should have heeded this warning….

Because his cognitive functioning skills are non-existent at times like this and he lacks any hint of social appropriate behaviour when his brain overloads itself, I cannot do a darn thing for him.

He just needs to “get it out” and does so however his mis-firing brain tells him to do so. Appropriate or not.

But there is ALWAYS a trigger. It’s all about the three R’s. The rumbling, rage and recovery stages.

I failed to recognise the rumblings and was punched in the metaphorical face with the rage cycle instead and waiting until recovery arrived was my only choice. The only thing I could do was ensure that he was safe in the process and that his siblings were also kept out of his path until the storm had passed.

Eventually he fled to his bedroom and lay down on his bed thrashing and kicking until his body was so exhausted that he fell asleep. I went and laid down beside him and stroked his sweaty forehead and prayed over him until his body stopped fighting and surrendered to rest.

As an autism mother it is one of the most difficult parts of my job. It is draining, it is heart-breaking and nothing makes you feel more helpless than not being able to comfort your child when his thoughts are attacking him and he literally rips and scratches at his own head trying to get some peace.

But also as his mother – one of the most rewarding parts of my job is seeing him breakthrough and make progress.

He only slept for a very short time. Just long enough for his brain to process whatever it was that had triggered the tsunami and allow him to return to the world that confuses him so much.

He woke up and found himself in my arms and gave me a weak smile. His tiny voice shook as he shared with me his heartbreak.

And right then – my heart broke all over again.

He is being teased: He is being called a “baby” because he claims that his best friend is his teddy bear. He is being called a “Mummy’s boy” because he flew into my arms at school excitedly yesterday and gave me a big kiss and told me that he loves me. And he is being told that he plays silly games and talks funny.

Um yep…

 Socially inappropriate behaviour not in line with his biological age??   Can anyone say “ASD”?

Back to the freakin’ neurotypical teaching drawing board. It’s not fair. It’s just not fair.

Urgh…

Dear Disneyland….

So we have proved to ourselves that the seemingly impossible is more than achievable. And can I just say that this in itself is HUGE!

If someone were to suggest to me as recently as 2 years ago that I would be flying across an ocean for 14 hours with 2 aspie children, I’d have laughed in their face before diving into no-cope mode at the very thought and start heading directly for the closest exit.

But today I can hold my head high and confidently proclaim that WE DID IT!!!!!

And what’s more…..we had the BEST time!

In fact, we had such a brilliant holiday that I want to write about ALL of it but there’s so much to tell that I have decided to divide it all into several posts that can be read over the next couple of weeks or so.

Bite size posts if you will.

And today, I’m going to write specifically about the main reason for our trip and that is DISNEYLAND!!!!

It certainly lived up to its catchphrase of the “Happiest Place On Earth”.

In fact, I was so impressed by our experience that I have written this letter below to the management to express how grateful and appreciative we were.

Dear Sir/Madam,

I am the mother of 2 children with autism spectrum disorders and my family visited the wonder and magic that is Disneyland only 2 short weeks ago.

Our experience in your parks was incredible to say the very least and I am writing to say a big and heartfelt thankyou.

Thank you for your compassion and willingness to assist my family in any way that you could.

We received one of your Guest Assistance cards from your Guest Services on the second morning that we were there and used it many times throughout our time in Disneyland.

Thank you for recognising that my children and many others like them have a “hidden disability” and that there is a huge difference between a child not ‘wanting’ to wait and a child who physically cannot.

Thank you for not treating us as though we were free loaders who just wanted a free pass past the hundreds of people queued up for rides.

Thank you for understanding that we needed quiet waiting areas without excessive noise, lights, smells and crowds and providing this for us.

Your wonderful cast members made us feel very welcome and went out of their way to help my boys enjoy their time at Disneyland.

Thank you for helping our family to do what every other family with typical children manages without even a second thought.

One of my children and also myself cannot eat gluten and we were literally blown away by not only the choices that you provided but also the manner in which you provided it.

We ate in several of your restaurants and also at the Storytellers Café in your resort and were astounded that each time the Chef came out to our table and helped tailor a menu to our needs specifically.

We did not find eating gluten-free this easy anywhere else in California State!

We are eternally grateful that my son was able to enjoy a burger and fries that wouldn’t make him ill and be just like all the rest of the kids around him for the first time in a very long time.

Your cast members all made our experience extremely positive and we will go out of our way to tell other families how impressed we have been.

Thank you again from a mother who is eternally grateful that her family was able to successfully visit the “happiest place on earth”.

Yours Sincerely,

Fiona……………

As a very close and fellow gluten-free friend always says to me….We need thank the places that do get it right and suggest improvement to the ones who get it wrong or nothing will every change for the better. If they don’t know….they can’t change it.

And I believe that this is also true as an autism parent.

The more we applaud those who help us….the more that the message  will spread.

Gratitude goes a heck of a long way! People LOVE to be thanked.

And the more we thank, the more that community will continue to gain awareness of the needs of families living with autism.

But on the flip side – if we keep quiet, nobody will ever learn a thing and we will keep fighting and losing the same old battles time after time after time.

**** Mark 9:23 ****

 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”

Flying with autism!

It’s now only 7 days until we fly to America.

I can hardly believe how quickly it has arrived and I am getting just a tad excited let me tell you!

But as I wrote on WW’s Facebook page this morning….its not been all about excitement for my little Harley. There is a lot of anxiety and uncertainty creeping in.

His aspie brain is having trouble processing many aspects of the upcoming trip: The changes to his regular routine are overwhelming him and because he’s never flown before – he has nothing to reference it to.

He has been reading the social story I wrote about the trip over and over again and coming up with new and more bizarre questions each time that he reads it!

We went through the indignant “I can’t sleep on the plane in CLOTHES, I have to wear pyjamas” phase.

That one was solved by simply packing some pjs into his hand luggage. Then it was another sleep related question: “Where will my bed be?”

So we had to explain that you stay in your seat and sleep sitting up. I reminded him about the squishy neck cushion that we bought and told him that his seat will lay back a little bit. He nodded and then asked if Teddy could have his own seat.

I mentioned that the flight we are going on will have a TV screen on the backs of all the seats so that he can watch movies, but he freaked out asking me how he was supposed to watch something that’s on the BACK of his seat? It’s that darn literal thing again!

He has been quizzing me on the horsepower of the aircraft and is not satisfied with my answer of: “I have no flippin idea!”.

He has been asking me how the engine size of the jet compares to that of a stealth bomber and what it’s top speed is????!!!!!!   He wants to know exactly what he will be eating and exactly what time to expect it. He has told me that he is scared that the plane will be too noisy so I reminded him that he will have noise cancelling headphones.   He wants to know who our flight attendant will be and what she looks like. He asked to see a photo of her and can’t understand why I’m not forthcoming with this.  He wants to know what language they speak in America and if he will be able to understand people, he’s also quizzing me on what kind of cars that people drive over there.

(Too much Top Gear me thinks……I have heard more than my fair share of GTR vs Lambourghini statements this week)

And the driving thing?: Well, that’s doing his head in too! He simply can’t fatholm that American’s drive on the opposite side of the road to us.

And while I’m on that – I have to issue a big SORRY to my American readers right now, but Harley wants you all to know that you are all incredibly wrong and that you need to learn the correct side to drive on.  He thinks that you all need to go back to school and learn the right way so that you don’t cause accidents!

yeah – it’s kinda funny but I’m stressing that he will walk up to a stranger when we are there and tell them that to their face!

AWKWARD ASPIE MOMENT ALERT!

The day-time night-time thing has been a tricky one for him to grasp too. I ended up using a trick that I remember my dear old Dad using to explain the time difference thing to me as a child.

I got a ball and drew rough sketches of Australia, Asia, Europe, Africa, Antarctica, the Arctic and Northern America on it and held it with the fingertips of one hand. It was representing the earth.

With the other hand, I held a torch (flashlight) to shine on the top of the ball to represent the sun and then I slowly spun the ball just as the earth rotates.  He could then see how it was possible for us to be in darkness when the USA is in daylight and vice versa.

This worked brilliantly for him because he is such a visual learner.

I now have all the bags completely packed and all the paperwork finalised. But what’s my absolute biggest issue right now?

The school rung me this morning at only twenty past nine to ask me to collect Harley as he has high fevers.

Fabulous.

Right before we go.

I’m prayin’ that it’s over and done with in a few days and doesn’t turn into anything nasty OR that he doesn’t manage to pass any nasty germs through the family.

This trip is going to be interesting enough already without sickness being thrown into the mix.

Cue some serious eye rolling!!!

 

Understanding and working through guilt.

Mum introducing baby Harley to a horse

In just under 2 weeks time – Mr Patient and I are going away overnight to attend my cousin’s wedding. The venue is a couple of hours drive away from here and rather than try to drive back later that night, we have decided to stay in a nearby hotel instead.

I’m actually finding though – that I’m having the exact opposite emotion to guilt (whatever that’s called) whenever we leave the kids with friends or family these days.  Instead of feeling guilty that we have left them…..I feel guilty because I’m NOT missing them….How twisted is that!?

But it hasn’t always been that way.

For many years I carried guilt and shame related to leaving my children and it’s only been recently that God has set me free from this burden and I’ve been able to see that in actual fact – in the particular circumstances that I have lost sleep over I didn’t even do anything wrong. It can all be traced back to the different brain wiring of my son and the fact that we didn’t know anything about it.

I clearly remember way back to in late 2003 when Ella was almost 4 and Harley was still a baby.

None of us had slept more than an hour at a time on any night due to Harley’s constant screaming and crying, but my parents knew that we were absolutely exhausted and needed a break.

So they offered to mind the kids for us up at their place (in the country) for 5 days so that we could escape over to the coast to stay in a gorgeous little bungalow on a lagoon that they had booked for us. We were SO excited at this idea and knew that we desperately needed this break and looked forward to it for WEEKS.

Prior to this – I had been having headaches and facial numbness for months but it had gotten a lot worse in the weeks leading up to this escape so I went and saw the seventh Doctor in two years and listed my symptoms for the 7^th time expecting to be sent away being told that I was a hypochondriac again. But this time I demanded that the Dr do an MRI because I wanted to put my mind at ease once and for all so that I could enjoy this holiday with nothing to encroach on my peace.

But of course the MRI revealed the brain tumour that I had been accused of inventing symptoms for, and our little couples escape never happened.

On the night before I was due to go in for my surgery – my baby Harley came down with the chicken pox and wasn’t allowed to come and visit me in the ICU or even after I was transferred to the brain injury ward until the spots had disappeared.  On the morning of my admission to hospital, my Mum clearly remembers standing on my front porch waving her daughter off to have life-saving brain surgery while her grandchild itched and cried for his Mummy. His little arms reached out to me but I had to turn and walk away. THE hardest thing I’ve ever had to do to date.

When he did finally get the all-clear from the Dr and was allowed to visit me in hospital – he didn’t seem to know who I was. He was only 14 months old and Grandma was the only person he responded to. This was my first introduction to mother’s guilt.

Fast forward almost 2 years and 2 major surgeries later and we finally took that well-deserved holiday on the coast and by then – we were even more in need of a break than 2 years earlier and couldn’t WAIT for the day to arrive.

So we drove the kids up to Mum and Dad’s and jumped back in the car and drove to the coast to r-e-l-a-x!

But do you know what?  Once we got there – we didn’t know what to do with ourselves!  We didn’t know how to just stop and we were unable to relax much because we continued to be consumed by guilt.  After our first swim in the pool, dip in the spa, stroll along the beach and dinner and movie date – we were all outta ideas! And this was all done in the first day!

We weren’t used to having so much time alone together and didn’t how to spend it! We phoned the kids several times a day and actually ended up going back a day early to surprise them! We had clued Mum and Dad in and asked them not to tell the kids.

And to this day – I’ll never forget Harley’s reaction.  Even as young as almost 2, he showed signs of being very distressed by changes in plans.

(And recalling all of this now – I can’t believe that we missed the “A” word for so long).

 So we pulled up in my parent’s drive way and walked around the side of the house because we could hear them playing in the back yard. We didn’t call out to the kids – we just stood there and waited for them to spot us.

Ella saw us first and immediately came running over exclaiming “Mummy, Daddy! I’ve missed you!” But Harley burst into tears and clung to Grandma’s leg… He was confused and wouldn’t come anywhere near us. Me particularly. I remember how devastated I was by this but I think I did a fairly good job of disguising my hurt. We’d only been gone 4 days and I already felt as though I’d abandoned my child and his reaction to me just magnified my guilt. It took me a very long time to stop blaming myself for going away and leaving him even though deep down I knew that we desperately needed the break.

That afternoon, Harley stayed close to his Grandma for hours and eyed me suspiciously from afar.  He lay on Grandma’s knee and drunk his bedtime bottle that night and she was the one who laid him in his cot. Not me.  He didn’t want me. I remember how much my heart broke that night. It stayed with me for years but I didn’t know then that this was one of the early signs of his autism causing confusion, and anxiety in him.

~*~

I was only thinking about all of this today and for the first time I actually GOT IT!

I finally get that these incidences of Harley’s over the top reactions to change were nothing at all to do with my parenting (or lack of). I can now see that they were both just very early indicators of a little boy who is wired very differently to me.  I understand that his response to these events can be attributed to the fright response that is common amongst ASD children when they are confronted with a situation that didn’t go the way that they expected. Harley was simply reacting to change and clung to that which made him feel safe.  And in both of those circumstances – It was my Mum that was his safe place.

It has all become crystal clear to me this week exactly WHY Harley has such a closeness with Grandma.

I now understand completely that she was the only constant in his life every single time that things have gone belly –up.

She was not only someone who was there for him when he needed it most.  Someone who knew he was special and knew that he was different but chose to love him unconditionally and without judgement.

Thank God for my Mum.

And thank you God for healing my hurt.