No illness here.

I may be going out on a very thin limb in writing this post but I feel very strongly about this particular subject and the advocate in me isn’t prepared to sit down and shut up this time. It was conveyed to me recently that my children need healing and I prickled at this suggestion. More than I expected to.

I have come to realise that being both an autism parent AND a Christian who believes in healing can be a very contentious mix at times. And it’s probably not for the reasons that you think.

I believe in a powerful God who can do the impossible: but here’s what I DON’T believe: I don’t believe that autism is a sickness that requires healing.
And let me say up front that I am not nor will I ever be seeking out healing for my boys from their respective autism. They are not sick or ill or diseased, they are simply different.

But unfortunately, not everyone shares this view.

The word ‘advocate’ means to speak, plead or argue in favour of a cause that you believe in. And anyone who reads this blog would have noticed that I very much believe in my children and their potential and am not backwards in coming forward when it comes to creating awareness for autism.

See, here’s the thing. When I’m told that my child needs healing: I’m basically being told that there is something wrong with my child. I’m being told that they are not acceptable the way that God made them and that they are faulty, defective and sick. They are not being accepted for who they are.

You don’t pray for the well to be healed so why pray for healing from autism for my boys?

If they have a cold, a broken limb or a fever by all means intercede in prayer for them, but please don’t insult them and me by praying away the very essence of who they are.

Sure – I hate the anxiety, the fears, the hurt and the anguish that their differences may sometimes cause them, but I certainly don’t hate who they are. And I believe that discovering the difference between the two is paramount in understanding what autism awareness is all about.

I dislike that ordinary daily tasks are a challenge for my boys, I dislike that they struggle to just ‘be’ in many situations and I dislike that they are becoming more and more aware of their differences. But I don’t want them to feel that they need to conform to society in order to be accepted. I want society to change how they view those beautiful members of our community who just happen to have an autism spectrum disorder.

And I don’t see my children as broken, sick or in need of “healing”. I see them as Wonderfully Wired. I see them as having been created to be remarkable. Hence the name of this blog.

Asthma is an illness. Depression is a mental illness. Influenza, heart disease and cancer are all illnesses.

Autism is not. It does not need a cure or prevention. It needs love, acceptance, and people who are willing to look past the diagnosis to the heart of the person.

Look at these photos: Do these babies look “sick” to you?

No…..they are precious, they are wanted and they are loved.

I knew from the minute that I held them for the very first time as newborns that they have amazing futures and nothing is going to stop them from living their best lives.

Hope you’ve all had wonderful weekends.

Fi x

Shutting down or shouting out?

I always find it fascinating when I see something in one of my children that I recognise in myself.

I know that I am not naturally a decision maker, an optimist or display very good coping mechanisms, and it’s become apparent to me that I chose to shut down more often than fight when I’m overwhelmed.

This week I have had Harley home for 2 days and Lucas about to have his 6^th consecutive day off in a row tomorrow. All due to sickness. Lucas had some blood tests earlier today because the Dr thinks he has either a respiratory infection or glandular fever (Mono).

And it’s interesting to me to watch how the boys have both responded differently to sickness and how their individual responses have affected me.

Harley (God bless him) makes sure that everyone around him knows that he’s sick, that he’s miserable and that he being sick is a major inconvenience to him. His anxiety goes through the roof with his OCD kicking it up a notch and the perseveration begins over whether or not he will end up vomiting.

Sigh

I’ve often wondered if he is ever really as sick as he says he is or if it appears worse because he works himself up so much.

He calls out at 2 minute intervals that it’s not fair, that he’s too hot, too cold, thirsty, hungry, uncomfortable, bored etc etc etc.

Whereas conversely, I often don’t realise just how sick Lucas is because he just lays down quietly and withdraws into himself choosing the silent protest. Which sounds like the easier child to handle right?

Well, yes and no. Sure, it’s easier on my ears and my patience but the downside is like I said: I often don’t find out just how sick he is until much later than his brother who gives me a running commentary of his every ache and pain in minute details.

I have to do a lot of guesswork with Lucas and he shuts down so much that often he refuses food & water and I have to physically open his mouth to administer medication. He doesn’t seem to hear me or respond to his name when he’s shut down like this. So it’s not always practical!

Remember his birthday last year? Remember how he was hospitalised with paralysis in his legs? Remember how much he shut down then? Well I didn’t. DOH! You can refresh your memory by clicking >>HERE<<.

Sure, in the past few days he has had some great moments where the medication has perked him up briefly and there have been glimpses of my vivacious little fella but they have been sadly few and far between.

I think that autism definitely plays a huge part in how my boys respond during times of high anxiety or in sickness, but there is also a very definite personality/genetic makeup factor in there as well.

I realised that I have spent so much time over the last few days trying to get Harley to stop whining and trying to get Lucas to interact with me in some way, that I haven’t allowed them both to individually indulge in what it is that they each need.

Harley needs to hear me soothe him constantly, in the same way that he will often ask the same question repetitively even though he knows that the answer never changes.

He finds comfort in patterns, in routines and in consistency. I believe that he repeats the same phrases: It’s not fair, I’m too hot, I’m too cold, I’m thirsty, I’m hungry, I’m uncomfortable, I’m bored in what seems to be a bizarrely cathartic way!

And all I have been doing is sticking ear-plugs in my ears and shutting him out because *I* couldn’t cope with the constant jabber.

And this realisation has really shone a light on myself. I have realised that I am very much like Lucas when I’m overwhelmed.

I shut down both physically and emotionally and enter a state of self-preservation.

These are the times that I shy away from my blog, my emails, my Facebook, Twitter and all other types of cyber interaction and especially from those whom I know in real life lest they see through my carefully constructed façade!

I call it self-protection mode but deep down I know that it’s just avoidance

But here’s where my son and I differ greatly; When I shut down, it’s usually detrimental to me because I stop seeing reason and I block out those that are truly trying to help me, but when Lucas shuts down – he ALWAYS comes out the other side fitter, healthier and better off from the experience.

It’s like he needs to power off so that his body can fight the nasty bugs that have infiltrated his immune system. I really honestly think that he needs to do it so that he can protect himself.

From what? I’m not really sure but for now I’m going to put it down to just another mystery of the autistic mind that might one day be understood by NTs like me….or it may not.

Whatever the case may be – I’m going to keep doing what the Dr tells me and wait it out because I know that there’s a mischievous, sparkly little boy behind those glazed over dull eyes of his.

I just KNOW it

It IS the same thing…..a Doctor told me (So it MUST be true…wink…wink)

I spent most of last night sitting up in bed cradling little Lucas who had very laboured breathing and was extremely miserable. HE managed to catch a bit of sleep but I only dozed a little bit here and there so have woken up in a zombie-like state today!

After dropping the older kids at school this morning, I drove him straight to the emergency department at the hospital because NONE of his asthma medications were easing his breathing or helping the coughing to subside.  They took us straight in to the paediatric unit and started a range of tests on him…Thankfully they ruled out pneumonia and told me that his lungs were clear enough for pleurisy not to be a possibility either.  So the verdict was severe asthma.

The nurse that took his stats asked him what his name was and how old he was and he looked at the wall before grunting “No thanks, I want to go home”  at her !

She looked at me and raised her eyebrows so I hastily explained that he has autistic disorder and wasn’t in the mood for chatting. She smiled and said “Ok, that explains a lot” and patted him on the head and left to move on to the next patient.

The Doctor came over next and asked Lucas some questions too but he still wasn’t in the mood for talking so I explained AGAIN that he has autistic disorder and the Doctor asked whether he was high or low functioning and if he was verbal or non-verbal.

I replied that his actual diagnosis is Aspergers Syndrome and went on to explain that I’m so tired of the blank looks that I get when I use that term , so I now find it easier to just use the term “autistic disorder”. Then I clarified that I supposed the answer to his question is “neither”.

He then said something that surprised me.

I just want to point out here that the following sentences are transcripts of what the Dr said to me….these are not necessarily MY opinion!…

So don’t shoot the messenger……Just sayin!

He said “You do realise that there is an extremely fine line between the terms aspergers and high functioning autism and that the medical profession disagree on what the actual definition means”.

And then followed with: ” The term ‘aspergers’ is generally given to a child who displays high functioning autistic traits. The point at which speech is acquired has been debated for years as a deciding factor in differentiating between the two terms. It’s basically the same thing but parents deal better with the word ‘Aspergers’ than they do with the umbrella term ‘autistic disorder’. A lot of parents of Aspergian children are in denial that this is even a spectrum disorder. You are in the minority by admitting it.

Really?

I was a bit thrown by this because ALL of the parents of aspergian children that I know personally KNOW that it is an autism spectrum disorder.

NONE of my friends are in denial?

And seriously……the fact that the same child could essentially be diagnosed with PDD-NOS, Aspergers, High functioning autism or Autistic Disorder depending on which practice, which paediatrician and which country you live in…..is ridiculous!

Bring on the DSM-V I say…..I’m over it!

Anywho…..five and a half hours later Lucas was discharged with a fistful of prescriptions, an intensive asthma plan, and a letter for my incompetent  misguided GP stating that there was NO fluid of concern on his lungs and that it WAS severe asthma (as his concerned mother pointed out).

A very eventful day with a good ending.

And now I’m off to grab some Fiona time before Mr Patient arrives home from Melbourne tonight so it’s Cheerio from me

The post with no name ….

Tonight, I had every intention of writing a post detailing the jaw dropping coincidence that had me sitting on a country link train seated right next to my High school English teacher and the 8 hours we spent chatting and she critiqued my blog! Eeek!

But, it’s now coming up to 11pm and I have just returned from a dash to the hospital with Harley with suspected appendicitis , only to return home with him struck down with vomiting and diarrhoea *sigh*

He is now thankfully peacefully asleep in bed with me whilst I type this and consequently I am too knackered to elaborate any further.

So the post will have to wait until tomorrow when I can put some proper time and care into it!

I’ll leave you all with this thought though : Nothing says ‘I love you” more than willingly sleeping next to your child who breathes vomit infused breath on you every time he exhales!

Hehehe…