Freshly pressed or freshly stressed?

Taken from the WordPress home page

There are many different reasons that people start writing a blog. Some people just do it for a bit of a creative outlet – maybe to showcase their hobbies and talents (like maybe a fashion, a photography or art blog).

Some people love to tell stories or write poetry, some people are wannabe writers and use their blog as a platform to promote their work hoping for that all exclusive book deal.

And then there are people like me who just write because they find it to be an extremely valuable therapy tool. (That and the fact that raising awareness for autism is one of my passions and I dream that one day people will not just listen but ‘really listen’ and makes changes for a more accepting society).

Recognition is a great thing, but for me – it’s not essential. I sometimes post my blogs to my personal FB page but I deliberately haven’t signed up anywhere to promote my blog to gain more traffic. And the only reason I created a Facebook page for Wonderfully Wired was so that I could have a dedicated place to write about all things autism and give my real life friends a break from constantly having our struggles and triumphs plastered all over their news feeds.

See… I’m considerate like that

I find that writing out my thoughts helps me to properly filter them, centre myself better and focus more clearly. And it also causes me to own and address any wayward emotions that I may have wrongly attached to a particularly difficult situation that I may be going through at any given time.

It really is therapeutic. And if what I write about just happens to help another family going through similar struggles: well it’s a win-win as far as I’m concerned.

Of course there are definitely pros and cons of putting your family’s highs and lows on display so publicly, but I also feel very strongly about creating positive awareness for autism. And to do that – you have to be real or people see through it pretty quickly.

I wrote my post OCD OMG! on Tuesday with a very heavy heart. I was desperate to be heard and felt like I was running out of options. I had hit an emotional brick wall and felt the fight slowly start to drain out of me ,so I wrote about it. As you do when you’re me.

And the response that I got from it was overwhelming to say the least. Not so much from comments on the actual blog post, but by messages sent through Facebook, personal emails, text messages, phone calls and visits. People seemed to come from all directions offering me everything from meals delivered and cyber hugs through to therapist and Doctor’s details and offers to attend appointments with me.

To say I was touched is a gross understatement. To all of you – (you know who you are) …I want to say a huge heartfelt thank you.

Which leads me to my point.

I have a hope that through sharing our story, other families will feel less isolated. Other families will feel less overwhelmed and misunderstood and maybe they will motivated to find the help that they need.

So when I received an email from the WordPress Editors last night informing me that my OCD post is going to be Freshly Pressed in the next few days, I burst into tears.

Not tears of joy at first. I wasn’t exactly elated that I had this prestigious honour bestowed upon me, because it was one of my family’s lowest day so far that is going to be showcased.

I started thinking about all the light-hearted and amusing posts that I had written and wondered why they’d all been bypassed? And why they hadn’t chosen one of the pieces that I have written before that I was particularly proud of?

But the editor wrote these words to me:
…..we really enjoyed it (as much as one can enjoy reading a heartbreaking story) and we know the rest of the WordPress community will too – I know there will be many parents who can relate to your story…..

And with that in mind – I’ve decided to go ahead and let them publish it in the hope that another parent or family can read this and know that they are not alone.

We are all in this together after all

Making a difference…

My Facebook status today read: 

 I just got a care package in the mail with a beautiful letter from my best friend’s Mum…….it’s so wonderful to be randomly blessed like that! Made my day

 And it DID totally make my day.

But you know what? The package wasn’t filled with chocolates, flowers or expensive gifts because Mrs M knows that this is not what I cherish the most, but instead it was filled with something much MUCH better than that!

It was filled with words, and it was filled with love….Lots and lots of both of my two favourite things

She has taken the time over many months to cut out articles from various magazines and newspapers and she has saved them up to send to me.

But these aren’t just random articles; they were all chosen with the specific purpose of encouraging me. Some are about ASD, some aren’t but each of them has a message of triumph through trials and average people achieving extraordinary things.

It really is so humbling to read this stuff and realise what a blessing my children really are.

Mrs M is ‘officially’ retired but still teaches primary school on a casual basis and in her letter she wrote of an incident that happened at school recently with a little boy the same age as Harley who is also on the autistic spectrum. My eyes welled up with tears as I read about how this little fella had a big meltdown and started kicking, punching, biting and screaming at her because he wasn’t coping. And this all occurred because he ‘thought’ he had lost at a game.

She wrote that she remembered reading in my blog that the best thing to do in situations like this is to stay calm, speak quietly and remove the child gently from the scene so that they can gather themselves and calm down. She remembered that trying to punish or discipline a child in circumstances like this is not only futile but so so wrong because the child is not being ‘naughty’.

She then wrote that later on when he came to apologise to her that she was able to convey to him that she understood that he wasn’t angry with her but that he aimed it at her because he didn’t know what else to do and she just happened to be there. She told him that she understood that his anger overwhelmed him and he lost control in the moment.

(On a side note: I hear of situations like this happening time and time again to children on the spectrum and it breaks my heart to hear them spoken of as “bratty”, “spoiled”, “naughty” or “badly parented” kids, ESPECIALLY when I hear it from teachers or professionals in the educational system who have clearly no personal understanding of ASD. I can’t help but wonder if these people actually lived with a family affected by the many manifestations of ASD for even a day, would it cause them to maybe change their opinions?)

But thankfully, that is not the case here.

I read the quote below on a Facebook page called Single mothers who have children with autism and  it’s attributed to Laura Tisoncik.

And it says:

‘The difference between high-functioning and low-functioning autism is that in high-functioning: your deficits are ignored and in low-functioning, your assets are ignored.’

Think about that: To put that quote in the context of the above story…..I’ll dissect it for you all.

ALL disorders on the autism spectrum both high functioning and low functioning share the exact same core deficits . It’s called the Triad Of Impairments and it is made up of:

• Social and Emotional Interaction
• Social communication and Language
• Imagination and flexible thinking

 Now Because the little boy in Mrs M’s story has Aspergers (which is high-functioning autism)….his deficits are ignored.

Put simply – people could look at him and see that he LOOKS normal and wrongly assume that he must therefore BE normal and place unfair expectations on him forgetting (or being unaware) that he has impairments in all 3 major areas of social interaction. So his deficits are ignored because they aren’t obvious.

And because I don’t have a low-functioning child – it wouldn’t be fair for me to write anything about perceptions or realities here because I will never understand it like a parent of one of these beautiful kids so I won’t even try.

So back to Mrs M….

I was so incredibly touched by her story. What a remarkable teacher she is and how excited I was that someone read the words of a simple stay-at-home Mum and didn’t disregard my advice because I am not university educated or professionally qualified in autism. I’ve always said that I may not hold any degrees or have any medical knowledge per say but I know my child more than anyone else on this planet and this THIS is why I continue to write about my family on the world-wide-web.

THIS is why I put us out there for all to judge in the small hope that even one person would learn that individuals on the autistic spectrum are worthy of the extra time and effort that it takes to learn more about how to best parent, live with and befriend them. 

Kids like mine are amazing but all too often they are misjudged, misunderstood and grossly underestimated.

There needs to be more Teachers, Doctors, Health Professionals and Community Workers out there like Mrs M who are teachable and willing to listen to parents. And I for one am not going to stop writing until I’m satisfied that I’m being heard

I seriously love this kid…..how could anyone not want to learn to understand more about autism.

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!

On Friendship And Laughter….

Many of you know that I have been extremely guarded with friendships over the past few years and I have put somewhat of a wall up around me as protection.

Part of the reason that I built this metaphorical wall can be traced back to the early days of Harley’s diagnosis. And I added a few bricks to it after Lucas received his because I didn’t want to let anyone in because I felt that I couldn’t relate to parents of typically wired kids.

I felt like an outsider.

I believed that I had nothing in common with any of them and that I would no longer be accepted by them because my kids were different. I imagined that I was being unfairly judged as a parent all the time and  I wrongly assumed that I had been also been tagged somehow once the boys were diagnosed. I honestly thought that my days of having a “normal” conversation with other parents were over for good.

It’s important to note that this was just my perception. No-one actually said any of that to me. My low self image probably contributed to it a lot more that I care to admit!

Lately, I have taken some time to sit down and reflect and have wondered why a person like me who seems to be hurt by words so much more than the average bear would dive into something as subjective as blogging in a public forum?

It doesn’t seem to make a lot of sense does it?

But somehow I have gained inner strength and peace through pouring it all out in print.  God has been able to use my writing as a therapy tool to show me His love and acceptance of me and to help teach me areas where I need to improve. I have had my eyes opened to things that I had formed a shield against.

Like friendships with parents of “normal” kids.

Recently, I have made a wonderful new friend who totally “gets” my strange sense of humour and has one that’s just as strange herself!  We have spent literally hours laughing till we almost cried about the silliest things and we just seemed to “click” from the get go.

You know how sometimes when you meet someone new and you know that you’re just MEANT to be friends? It just works and you can’t explain it. 

Well, we have found that we have a lot in common even though both of her children are 100% neuro-typical! 

Most of our conversations are over coffee (of course) and  seem to revolve around the crazy stuff our kids have done and she has blessed me in ways that she probably doesn’t realise just by being herself.

Naturally, many of the conversations we have had  have come back to autism and how it affects our family life, but not once has she rolled her eyes, glazed over or looked bored with the topic. She asks intelligent questions, she offers up ideas and has never undermines anything that I’ve said by making light of it.

She doesn’t live it day to day like I do but she also doesn’t begrudge me getting things off my chest either. I do try hard not to monopolize the conversation and I’m starting to talk about it less and less as we discover other topics that are fun to explore!

Laughter really is so therapeutic.  I love nothing more than sitting and giggling and smiling until my cheeks and stomach literally ache. My wall is gradually being chipped into. And that’s a good thing right?

~~~

PROVERBS 17:22 
A merry heart doeth good like a medicine!

It’s fun to answer spam!

Another side of me.

Hello beautiful readers.

I’ve been doing a lot of thinking lately and I’ve decided that it’s time to reveal a bit more of myself. No – I’m not going to start stripping my clothes off!

But I am going to publish the link to my “other” blog.

I have been writing this other blog since last October and originally the link was only given to a handful of close friends but now I’ve decided that I’m ok about being more public.

I’ve made no secret of the fact that I am a Christian on this blog but the purpose of Wonderfully Wired has never been to be used as a preaching platform. It’s main focus will still remain on the ups and downs of raising children on the autistic spectrum and my other blog “Being Still and Listening” is for me to write about my walk with Christ.  It mostly consists of poetry and letters and isn’t updated as frequently as this one is.

I hope to see you there!

http://www.stilltohear.wordpress.com.au or you can simply click –> HERE <–

Fi xx

Was it something I said?

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

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

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

But where are my children?

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

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

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

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

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

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

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

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

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

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

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

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

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

Are we really THAT bad?

Are we too boring?

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

***

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

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

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

Is this all MY fault?

***

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

For example:

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

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

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

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

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

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

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

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

Anyhow:

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

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

I’d be interested to know your thoughts?

Exploring the differences between ignorance and intolerance.

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

Twice actually!

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

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

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

How true is that!?

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

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

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

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

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

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

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

Why?

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

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

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

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

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

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

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

And that that’s totally ok.

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

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

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

It truly means a lot.

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

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

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

You know you’re the mother of an aspie when:

• Your son can tell you the name of every Nintendo character but doesn’t know the name of the child he sits next to in the classroom and has done for the last 6 months!
• Every conversation somehow ends up being about whatever it is that they’re interested in and you’ve given up trying to steer it elsewhere because you know you can’t possibly win!
• Instead of tripping over matchbox cars strewn all over the living room floor – you have to step cautiously on your tip toes to avoid messing with any of the perfectly lined up cars that he has made by laying them cars end to end in colour groups.
• You need to start every sentence with their name so that they realise that you’re not just speaking pointlessly into the wind.
• You don’t dare serve two new foods on the one night.
• You usually answer invitations with “Let me get back to you” because you never know…..
• You understand the meaning of “we have to leave now” and never question that request.
• Ever.
• You don’t tell your very literal child to “cut it out” unless you’re prepared for something to be ruined with scissors or a knife.
• You’ve learned not to ask open-ended questions like “Tell me about your day”  because you know they will.

Every.last.bit.Starting with the morning toilet stop. (In all its gory detail!)

• You know the meaning of and often drop into conversation words like: Perseveration, Proprioception  and Prosopagnosia
• You are on a first name basis with the centre management at the local shopping centre because your child has absconded so many times.
• You spend every week attending speech therapy, physiotherapy, occupational therapy, social therapy and spend hours on behavioural therapy and cognitive therapy with your child leaving no time for you to attend the psychological therapy that you need due to the possibility of your head exploding.
• And this is why you blog instead. ….This is FREE therapy
• You can’t remember the last time you ate fish (or insert the food of choice) because your child absolutely positively cannot STAND the smell of it in the house!
• Spontaneous outings are taken at your own peril!
• Your baby slept through the night BEFORE their older aspie sibling!
• You already know what’s for dinner for the next 2 weeks and EVERY LAST THING has been written down to avoid potential freak outs!
• You’ve learned that unless you want to know the ABSOLUTE TRUTH – you don’t ask your aspie if your outfit looks ok!

I’m sure there’s a lot more. But I will save them up for another post
Anyone else got anything to add?

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

Love me every one day.

I had written a post yesterday afternoon after having a dreadful morning with Lucas.   

It was an absolute shocker of a day! It was meltdown central and SO draining!

I wrote it all out but then I received a phone call from a close friend.

She had some really crappy news and my whole mood just sunk. Everything that I’d just been through seemed really insignificant and tiny compared to her news.

None of it really mattered anymore.

My friend has been given the nickname of “Warrior Princess” amongst us all and it is very fitting!

She is always one of the first to step up and advocate for our kids and puts herself in the front line every time there is a battle going on concerning a child. We all look up to her and she has inspired me to fight until I see results.

She was  the friend that was on the phone to me immediately when she heard about the struggles that Harley was having at school last year and she kept pushing me to be a stronger, louder, more passionate voice for my child.

And I can’t thank her enough for that!

So when I read back over yesterday’s blog post, I realised that it shows a good example of what she has taught me!  I stood up for my child, I didn’t shy away from speaking the truth out and I believe that I would have done her proud!

It is because of this that I have decided that I am going to post yesterday’s post after all.

It’s dedicated to my friend who is in my prayers and who I will be pulling for ALL THE WAY!!!!

Love ya mate!

************************************************************************************************************************************

So today was very interesting! I needed to buy some groceries because our cupboards and the fridge were both looking a bit bare. I knew that I also needed to do a few other little errands so decided to go to a larger shopping centre than I usually do so I could do it all in the one place.

The commotion all started because I usually do the grocery shopping at a little centre that only has a supermarket and a few other small shops like a butcher etc, and I didn’t pre-warn Lucas of this change of plans because he’s not usually the kind of child to react to this kind of change.  But today, he completely lost it in a BIG way!

He screamed and screamed and kicked and attacked me. He was SO LOUD that many people stared , tutted and shook their heads.

I couldn’t carry him because he would go all floppy every time I attempted to pick him up so I had to literally drag him by his collar over to a seat so I could at least hold him tightly and try to calm him.

I had an older man come over and actually said to Lucas: “You’re being a naughty boy for Mummy”…..

I told him that he was NOT being rude but that he is autistic and not coping very well.

He rolled his eyes at me and said: “Oh these stupid fancy names – they’re all excuses,  he’s just a typical naughty boy, they’re all over these days because Mum’s are too soft”

So I raised my voice over Lucas; screams and said: “You sir, are a very rude and outspoken man and I don’t appreciate your opinion being thrust onto me. Especially since you don’t even know what I am dealing with here.”

 

And yes, other people heard me but I SO didn’t care!

 

Another lady came up and started saying: “What’s wrong mate, that’s a big noise for a little fella ” in Lucas’ face as he thrashed and screamed and I smiled politely, told her that he didn’t understand her so she said it LOUDER!

I politely explained that he doesn’t have a hearing problem but that he is autistic and is currently unable to process anything that she is saying..

She walked off  - miffed – without even so much as a goodbye.

Then over to my right, two ladies sat at a coffee shop whispering to each other and staring at us. Then as they were leaving, they walked past us, and then one of them said loudly enough for me to hear:  “Why on earth won’t she just take that child home?” and this time I knew that I had had enough of people judging me and my child.

I stood up, followed her and tapped her on the shoulder and said in my finest sarcastic voice:

 

 “Do you really want to know why I won’t take him home?…..I’ll tell you why. It’s because families with autistic children still have to buy groceries and eat too. Sorry that we are interrupting your morning and inconveniencing you”.  Then I flicked my hair triumphantly and walked back over to my now- moaning little boy.

 

Her face went pale and she shuffled off without even so much as an apology.

I didn’t care.

I simply couldn’t understand how so many people could just watch a mother struggling with her incoherent, thrashing child and see that she is staying calm, stroking his hair, saying “It’s ok sweetheart, it’s ok” over and over again but still think that it’s just a case of a child being a brat?!

The facts were: I had no food in the house, today was my only opportunity to do it and leaving it until another day simply wasn’t an option due to appointments and the like taking up the rest of the week.

I managed to get Lucas into a trolley and started whizzing around the store quickly grabbing the bare essentials and ignored the stares and scrutiny of my fellow shoppers.

I got into the cereal aisle and Lucas turned it up a notch. I caved and lifted him out of the trolley and crouched down beside him on the floor to his level and just hugged him tightly. He buried his head in my shoulder and just sobbed and sobbed and sobbed.

It was then that a wonderful young Mum with 2 little toddlers in her trolley came over and asked if she could help me in any way. I smiled and thanked her but explained that he is just having a bad day.

She said: “Does he have autism ?”

Surprised I looked at her and said: “YES! But how did you know?”

“Because I watched you wrapping him in your jacket and squeezing him and the fact that you didn’t treat it like a tantrum. Also because my best friend has an autistic child and he flaps and rocks in much the same way as your son is”.

“WOW”. I replied. And then I thanked her profusely for stopping to help and for not judging me. I told her that she is a rarity these days and that I wished more people would just come up and ask me questions rather than just assuming the worst.

Eventually he calmed and I got him into the seat in the trolley with my jacket pulled down firmly over his head playing my iphone.

And then of course someone stopped me and asked“Why are you suffocating your child under there”.

 

“He’s just hiding from rude people,  that’s all” . I answered and kept walking smiling to myself and thinking that I have definitely done the Warrior Princess proud!

***************************************

When we got home that afternoon and Lucas was in a much better frame of mind, he came up to me and said in his fragmented speech;-

“Thankyou Mum for love me always every one day. Always love forever…..you to me, that’s all.”

This was HIS way of saying: “Thank you for loving me even when I’m hard to understand”.

I mel-ted!!!

*****************************************

What has autism done for me? A mother’s journey.

You know…..I often sit down and reflect on the past 8 years of my life since Harley was born and marvel at how differently life is panning out to what I’d dreamt up and planned.  

This is definitely not what I signed up for but having said that – It’s just where I need to be. I have accepted that this is not all about me nor is it all about dashed hopes and dreams. It is my reality and it’s also my destiny.

I am choosing to seek out the silver linings and be the best that I can be. Sometimes that’s easier said than done but I’m trying and that’s what really matters.

When autism moved in – it wasn’t exactly a welcome house guest but is IS a permanent one. So I have to make the choice to embrace it or fight it every day for the rest of my life.

I lay awake in bed last night for hours. At 3am I decided to get up and write my thoughts down in my journal so I could calm my racing mind and make some sense of what I was churning through.

*****

This is what I came up with:

Autism has taught me how to look past my child’s more obvious struggles until I can see nothing but glorious potential and Amazing Achievements.

It has also taught me that I need to fiercely guard myself from judgmental people and realise that not everything is personal.

It has taught me to accept what I cannot change and make the most of the here and now.

Autism has shown me the true definition of Unconditional love.

It has made me realise the sad truth that I cannot trust everyone who has been previously or is currently in our lives but that I can Trust God and His plans for me. Those friends that I hold dear have earned my trust and I love them for it. It has allowed me to cherish the seemingly insignificant moments and to celebrate the baby steps forward.

I now have  been given the gift of being able to view life through a very different, sometimes foggy and opaque but always truthful lens. I see things as they really are not as they are always portrayed.

Autism has enabled me to connect with some of the most amazing and Inspiring people. I  have forged powerful friendships based on respect,understanding and passion that I would never have found had it not been for autism entering our world.

Autism has been the driving force behind me realising my own destiny and purpose in life. I now KNOW that I was never meant to be anything but a Mum who is driven by getting what her children deserve at any cost.

I believe that I am doing exactly what God has planned for me to do and that is raising my autistic children to the best of my ability and to journal my inner most thoughts, my ups and my downs along this journey so that I can look back over past entires and be proud of progress and success.  I no longer have to be overwhelmed by the suffocating sense of failure that creeps in whenever I start to compare myself with others.

When I compare the several University degrees that friends have and the screaming lack of qualifications that I possess, I can thank autism. Because of it, I was awarded a God-given grace that I need daily to raise these sometimes trying, always exhausting and incredibly rewarding blessings.

Without autism, I probably wouldn’t have ever started blogging and therefore wouldn’t experience this amazing release and fulfilment that I get to experience as I work through emotions publicly. Completely exposed and preserved for eternity but they are heartfelt, honest and cathartic.

Autism has shown me a different but not necessarily wrong way to view our crazy mixed up world. It has encouraged me to seek out answers for questions that I can’t quite form and that which I don’t truly understand.

Things that I may have never noticed before or even thought to question before autism moved in. These things now cause me to wonder about and strive for solutions rather than just accepting things at face value.

It has rewarded me with new perspectives and fresh beginnings.

I am now granted the ability to dream without limit, to decide that anything is possible and to follow my heart wherever it leads me.

Since autism thrust itself onto us, I have been stripped bare, exposed, stomped upon, beaten mercilessly, devastated, hurt and very broken….BUT I have ALSO ( and more importantly ) been softened, Strengthened, moulded, shaped, inspired and filled with a new hope.

Autism has changed me forever, I see my children exuding Magnificence, potential and life.

So…….tell me, how has autism changed you?

What kind do you have?

Yesterday, I had 2 lovely ladies come to visit me in the home as a follow-up to Lucas’ CATS assessment and consequent diagnosis of aspergers.

image from picturesof.net

Although I was pleased that someone was at least following up with us – I was annoyed that it was really just a formality and nothing concrete actually came from it at all.

We wasted spent almost 2 hours discussing the family dynamic, the tools and methods that we implement in the day-to-day running of the household and they suggested a few new ideas to me. (Which I didn’t have the heart to tell them had already been tried but failed here!)

One of them asked me to rate from 1-10 how well I cope on any given day with 1 being not coping at all and 10 being coping really well.  I asked: “Do you mean on a weekday or on a weekend”?

She replied that it didn’t matter.  I nodded my head and emphasised that it DEFINITELY mattered because my answers to those 2 different days would differ dramatically.

“How so?” she enquired.

“Well, if it’s a normal weekday and I only have Lucas home…..I would say that I’m about a 9 or 10. He is a very easy child, extremely self entertaining, non-demanding and compliant. But if it is a weekend….I would change my answer to  3 or a 4.” I answered.

“Oh really? “ She seemed surprised. “Why such a dramatic drop?”

“Because that’s when all the kids are here and they are bouncing off each other and it’s also when our most challenging child Harley is home”. I replied.

* I had already told them in the preliminary discussions that Harley ALSO has a diagnosis of aspergers so I think she knew where I was going.

Her next question was: “What would it take to move this up to a 9 or a 10?”

I thought she was humouring me so I answered that the only way for that to happen was for someone to come and take Harley for a while and give us a break. She must have been serious because she wore a very concerned face!

I thought she was going to soften the blow a little but the next part of the conversation really annoyed me.

She had a printout in front of her with a listing of all the places in our area that provide relief to families such as ours and one by one she read them out to me only to see in the fine print of ALL of them, that to be eligible to access these,  the child had to have been given a diagnosis of developmental delay as well as autism. But because it’s ONLY autism, that their hands were tied.

She was preaching to the choir because I already knew all this. I had researched it all myself a few years ago when Harley was in the prime of un-controllable behaviour!

Thankfully….I’m actually ok at the moment.

I know I have had a few emotional posts recently and that Harley has been experiencing extreme anxiety lately, but believe me friends: I’m usually over it by the time that I have published the post because just writing it out is a wonderful release for me.

The last round of questions centred around the people in my life that I turn to for support.

I eagerly told her about all of you. I also told her that blogging has been my absolute life saver! I explained how awesome it is that because of the different time zones that we all live in – I am able to access support any time of any day .

She asked me if there were any local support groups that I attend and I gave an emphatic NO! And the reason?   Too many of them have a Lucas version of autism and not many seem to have a Harley. I felt like NO-ONE understood what it is like to parent a verbally and physically abusive child.

Sure….he’s come a LONG way, but there’s still a lot of distance to cover yet!

And I can tell you from personal experience……If both of my boys presented with aspergers like Lucas did – I wouldn’t understand the true meaning of words like emotionally overwhelmed, sleep deprived and mentally exhausted in the way that I do now!

If you have a Lucas.…I’m happy for you. Really I am.  I KNOW that it’s not all plain sailing for you either. Don’t get me completely wrong: Lucas has his fair share of challenges too, it’s definitely not all roses……but nothing on Harley!

But if you have another Harley……you need a break too.

Here’s a hug for all you mother’s out there whatever child you have. (((( )))).

So…..tell me, what kind of child do you have?

Change can be good!

Well hello all you faithful Madhouse followers and hiya to those newbies that have just found me

As you know from my last post, I have now had this blog up and running for 12 months now. This is exciting for me but with me being me….I have decided to keep in character and toss things around a bit and mix it up a little.

I have changed a LOT over the last 12 months and so in fact, have my entire family.

When I first started blogging last year, the title “Welcome to the Madhouse” really described how I felt most of the time so it was extremely apt.

Just simply surviving the daily ups and downs of raising autistic children made me feel like I really was literally going insane!

However, this year-I am still far from having it all together, but I don’t feel as out-of-my-depth as I did when I first started blogging.

As a family, we have developed new techniques, and on a more personal level-I have sought help and learnt new coping strategies and I feel a lot more capable as a mother than I did 12 months ago.

Don’t get me wrong though, this household is still ridiculously loud, action packed and overly busy-but lately, I’ve become less focused on how mad it is and more focused on how “wonderfully wired” my kid’s brains are and I want to celebrate their uniqueness.

So that’s why I have started a brand new blog called “Wonderfully Wired”.

I first considered changing the blog name a while back and set up this new one around 6 months ago, but I was never sure if I was ever going to go ahead with it or not so I just sat on it.

I have put a lot of thought and prayer into it and I feel as though the time is finally right now.

I still haven’t decided whether or not to transfer the entire blog over to this new URL or whether to just bring over my favourite pieces of writing.
Next week, after the kids go back to school and I have time to properly set the new one up, I plan to stop writing here and start over there full time. So there is still time to get used to it

Whatever happens, all my older posts will still be able to be accessed whether via the still standing Madhouse blog or via the new one so I’m not completely eradicating my past or anything silly like that!

This decision also came about as I journeyed around blogland and noticed just how many other blogs had the word “Welcome” at the start of them and how many Madhouses there were out there!

And there are at least two blogs that I know of that are also specifically autism blogs with similar titles.

I freely admit to not putting too much thought or effort into the title when I first started Madhouse and I clearly hadn’t researched it very well before I started, but this new one has had careful consideration put into it and this change is onward and upward as far as I am concerned.

The new url can be found *here*

If you are already subscribed to the Madhouse blog, please note that the subscription will not be automatically transferred over to Wonderfully Wired. You will need to re-subscribe…

I hope that all my faithful followers will come on over and join me at my new home: Wonderfully Wired!

Hope to see you there

Fi x

Edit

Already?

I knew it was close but, It probably would have passed without me even realising it. 

I hadn’t written it down in my calendar and surprisingly, wordpress doesn’t alert you to the fact either. But this morning, I received a text message from my BFF saying “Happy blog birthday”  and I thought ‘Wow….really?’ 

So it’s been a full 12 months since I started rattling on about every thought that enters my head!

I occasionally look at the numbers and it never fails to fascinate me that a boring old housewife from Australia has managed to write 415 posts over the course of a year!

Well….416 if you count this one!

One of the things that has worried me over the course of writing this blog is that my penchant for being brutally honest would drive people away but in fact, I have found quite the opposite!

I have had many comments and personal emails thanking me for laying it all on the line and telling it as it is. People tell me that my honesty makes them feel like they are not alone and not the only parent to feel helpless and out of their depths.

I don’t do this for any other reason than because it’s the only way I know how to be.

I don’t do fake.

I can’t write happy posts when I’m in the pits of despair.

I am NOT always able to see the silver lining and I don’t pretend that autism is all happy sailing.

I was concerned that my heart-on-the-line style of writing was harsh and too confronting.

I have considered throwing in the towel and quitting blogging altogether on countless occasions this year, but it turns out that this is exactly how a lot of other autism parents live as well.

I now know that for all of the glass half-full writers out there,  there are also a lot of us who frequently tread water trying desperately to stay afloat.

But to be fair- I do have days where I find myself jumping for joy on the mountain tops to celebrate what would seem like a small achievement to those who aren’t in the know!

Over the past 12 months of blogging, I have met many wonderful people online and have had a lot of people that I know in real life approach me and tell me that they never realised just how much families with autism go through.

And if this last year has only brought awareness to only a handful of people, than that’s a good start as far as I’m concerned. I realise that I only cater to a handful of readers out there but I will continue to blog throughout my happy days, sad days and everything in between for as long as I need to.

So thank you to all my faithful followers. Your comments and input and support have touched me in ways that I could never fully explain.

The amazing train journey!

OK , I’m ready to write about one of the most awkward/amazing/un-imaginable days I have had for a long long time!  

image from railpage.com.au

For those who don’t know what I’m rattling on about….let me give some brief history here.

Sunday – Mr Patient drove the children and me up to my mum’s for the Easter school holiday break and had booked a flight to come home that evening so he’d be back home in time for work the next morning.

It was a very kind offer to drive us as he knows how hard it can be to drive that far alone. So you can imagine his annoyance when he logged onto the computer to confirm his flight and realised that he had actually booked it for the day before by mistake!!!

After a few frantic phone calls to the airline, he soon discovered that there were no free seats on a flight for that evening OR for the next morning, the only possible alternative was to turn around and drive all the way back home almost immediately.

Mum and I were concerned about him doing this alone as he was obviously tired from the long drive we’d  just had so made an on-the-spot decision that I would go with him to share the driving and she would mind the children overnight at her house.

We went and booked me a train ticket for the next morning then set off on our way.

And I do need to add how very proud I am of my children that they coped so brilliantly with such a huge and sudden change of plans thrust upon them!

So…fast forward to Monday morning……

I am wandering around alone and slightly lost at Sydney’s Central railway station…..(this place is HUGE and overwhelming) and I spot a familiar face. It was Miss K. She was my English teacher in high school and was known for scaring the pants off her students with phrases such as: “I am neither your friend nor your acquaintance. I am your teacher……do NOT cross that line”

Before I could stop myself, I find myself (obviously delusional with relief at finding someone I recognised), call out “Miss K, It’s Fiona!….Fiona S  from *** High school!”

Her face lit up and she greeted me like a long lost cousin and invited me to join her for breakfast. How could I refuse? It was clear that I was lost and also that we were both catching the same train to my home town.

She asked me to call her by her Christian name but there was NO WAY that I could bring myself to do that!

So over toast and tea we chatted and reminisced. She asked to see photos of my children (which of course I happily obliged) and I received my FIRST grammar lesson of the day!

She commented that the children all had lovely shiny hair and that they weren’t as dark as I am. I said:  “Yes, they are all mousy”.

She tutted me and said:  “One must NEVER reply to a compliment with an insult”.

My face must have given my confusion away because she followed with : “Mousy’ my dear, is how one would describe the drab personality and character of an individual that one no longer wishes to associate themselves with”.

“Err no”, I replied….. “I just meant that their hair is lighter than mine but not really blonde either”!

We filled in about half an hour chatting and noticed that it was time to head towards the platform to board the train. I excused myself to go to the bathroom wishing her well and safe travels.

I had just entered a stall and hung my handbag on the hook when I hear “Fiona…Oh Fiona my dear…..Our train is leaving from a different platform than we originally thought. I shall wait here for you and guide you to the correct one.”

Oh-kay!  I was glad no-one could see my face!

I walked with her over to the correct platform and she asked me what carriage I was in. I looked at my ticket and told her “D”.

“Oh , how lovely”! She replied.  “As am I”!

It was a mostly empty carriage so she asked me to sit in the seat across from her so we could continue chatting and I did until a few towns later  when a couple arrived and I was in their seat.She offered me the one RIGHT NEXT TO HER! So I felt it would be rude to say no so there I sat for the rest of the journey!

At this stage, I had already mentioned to her that 2 of my children were on the autistic spectrum and had explained how life with aspergers looked through my eyes. But over the following  4 or 5 hours – I was able to explain in great depth how diverse it really can be from individual to individual.

The Country Link staff member who checked our tickets and walked through the carriages from time to time taking our rubbish and attending to us was wearing a blue ribbon on his vest, so naturally I asked him what it was in support of and was disappointed to learn that it was in fact only for the recent Victorian flood victims.

I had intended to inform him that it was also autism awareness month but before I could open my mouth – Miss K was saying very matter-of-a-factly : “Young man, are you not aware that April is autism awareness month. This young lady here is the mother of 2 children with autism. Maybe your ribbon should be for BOTH of these worthy causes”.

My mouth dropped to the floor!

I was starting to see another side of this wonderful lady!

We continued chatting about her travels overseas since she retired a few years ago and her history knowledge was remarkable! She could tell me a fact about every small town that the train rolled through!  She cheekily told me which of my past teachers she suspected had aspergers and informed me of who was still teaching, who had retired, who had died and who she wishes had!

The conversation flowed beautifully until she asked me what I did in my spare time.

Of course I gave my usual answer of: “Spare time? What’s THAT?” to which she tutted again and rephrased the question to ask me what I enjoyed doing. What brought me the most pleasure in life and what would I most like to do if ever I had more free time.

I didn’t have to think about it because I’ve realised lately that I really, really love writing.

Not necessarily blogging, but I have a couple of notebooks and journals that I jot down my thoughts and poetry into. These are my safe places. The places that I can write whatever i want. Whenever I like.

None of it is open to public scrutiny and none of it has to be grammatically or punctually correct. I write it for me and me only.

She asked me if I’d ever had anything published. I told her no.

But then I remembered that I contributed to a new just released book called ” The Autism Experience”.

You can click on the book image on the top right of this page to order your own copy if you haven’t already.

This wonderful book is the brainchild of my friend Valerie Foley who compiled and edited and marketed this book brilliantly! It is full of parent’s stories from all over the world and how they live their lives with autism as a part of it.

You can also visit Valerie’s amazing blog Jump on the rollercoaster but make sure you promise to come back here afterwards. I’m not a professional writer like she is!…….and of course Miss K asked me how I became involved with this.

So I had to tell her about my blog.

I said it quickly hoping she’d not pry and I was even smart enough to get out my iPad and show her tha
t I was unable to connect to a wireless connection so therefore couldn’t open my blog.

 But she was smarter and more switched on than I had given her credit for!

“Why don’t you show me on your iPhone dear…..I saw you fiddling with your emails earlier so you must be able to access the internet through that!”

Then she winked at me and I knew I was beaten.

After much fiddling and sweating, stressing and panicking, I finally settled on *this* post.

It was one of the first posts that I ever wrote and it is specifically about my son Harley and how autism looks on him.

As she read it, I could feel my heart throbbing, my hands sweating and my mouth drying up. As much as I told myself that her opinion didn’t matter to me- I knew deep down that really…it  did.

She finished reading and turned to me and said: “Wow, that was beautifully written. You know your child so well.”

Finally I exhaled.

She then completely surprised me by adding….: “You know what Fi (and I nearly collapsed after hearing her shorten my name!)…..“If I had have been shown something like this when I was teaching, it would  have made me a better teacher!”

And with that…..we sat side by side like old friends smiling as the train continued its gentle clickety clack, rocking motions until we eventually rolled into town.

She spotted my children waiting on the platform before I did. I helped her disembark from the train and I turned around after hugging my kids only to see her red cape-style jacket disappearing into the crowd Mary Poppins style!

I don’t know if we’ll ever meet again, but I really hope we do

 

Busy and tired!

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

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

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

Erm….sorry!

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

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

 Ugh!

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

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

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

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

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

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

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

Ho Hum.

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

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

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

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

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another lessoned learned!

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

Haha!

Ave a good weekend peoples,

 Luv yous all!

Why do I blog?

Whilst I primarily write about life with our autistic children, it is not all that I am.

Me in my "teen angst" years

Just as autism doesn’t define who my kids are….it also doesn’t define my role as a mother, a wife, a daughter and a friend.

As a teenager I wrote a lot of poetry. Most of it is no longer recorded anywhere as I burnt most of it in a ceremonial bonfire not long after I got married.

The memories that they held were just too painful so I wanted them gone.

Doing this is something that I often remember and regret.

(I bet you didn’t know any of this Mum!)

***

I have discovered a lot about myself since I started blogging.

I am able to work through things a lot quicker and more smoothly when I write out my thoughts, emotions and fears.

Someone asked me today why I blog. I thought about it and this poem just came to me.

*****

I write for the freedom of speaking my mind,

Expressing emotions and thoughts,

Uncovering my feelings – once left behind,

Sharing my story of sorts.

.

I’ve never considered the prospect of being,

A slave to the rules of the pen,

I write as I live and I write what I’m seeing,

The way that it happens and when.

.

I don’t care for lying and making up stuff,

It’s seems like a grand waste of time,

The truths that I share here should be just enough,

As the stories I tell are all mine.

.

To be a known writer is not my real goal,

I just need to write for release,

For when I have written my thoughts I feel whole,

And the worries in my head will then cease.

.

I know that when I start to bottle things up,

My emotions take over and then…

I start to lose focus and fire from the cuff,

So I’m sticking with the therapy of the pen…

.

So……Why do YOU blog??

I really am trying my very best….

I started blogging because I struggle daily with raising these beautiful children that God has entrusted me with, and I wanted somewhere that I could journal my thoughts and experiences and have something that I can refer back to occasionally so that I can see just how far we have all come!

But…

I have been very saddened lately and have become quite disillusioned with blogging altogether.

Maybe I take things too personally, maybe I’m reading things into situations that aren’t really there?

Who knows?

I also know that the people that have upset me are unlikely to read this blog post, because (to my knowledge), they don’t even visit my blog but I feel like I have to get this out anyways.

PLEASE NOTE: the wonderful bloggers on my blogroll to the right of this page are NOT part of this, these bloggers are wonderful and helpful and have been nothing short of fantastic to me

***

There are a huge number of blogs written by adults who are on the spectrum whose blogs I read regularly and I really enjoy reading them.

These blogs give me such wonderful and different perspectives, and provide insights into aspergers that I otherwise wouldn’t be able to have-and they might help me to be a better mother to my children.

I comment regularly on a number of these blogs and thank them for their guidance and for providing such a marvellous window into their lives.

Most of my comments either don’t get published by the blog author, get jumped on immediately by other readers who take pleasure in pointing out my mistakes or they come and leave nasty comments on my blog which of course I don’t publish

I simply don’t understand.

What’s with this NT versus aspie mentality that’s so evident in bloggy land?

WHY does it even exist?

I have noticed on a lot of aspie blogs that the commentors are quite often outright nasty to NTs. We are all grouped together in one big pile of “useless” and I don’t get how it’s ok to NT bash so brazenly.

Well….here’s my take on it….

Let’s imagine that I moved alone to a foreign non-English-speaking country (let’s invent one…..Coffeetopia!) with a culture that I didn’t understand at all!

I had no clue about the language that was being spoken, didn’t understand ANY phrases or words, no-one bothered to explain it to me and I felt lost and like I didn’t fit in.

I didn’t understand why people had the rules and regulations that they did over what I considered to be pointless endeavours.

Every morning , I woke up wondering when this was going to get better and when (if ever) I would find someone who I could relate to.

Then one day- an Australian family moves in next door.

They have other Australian friends and relatives in the same town that they happily introduce me to and before I know it……I suddenly feel like I fit in for the first time. I feel accepted.

My new Australian friends help me to feel at peace again.

Suddenly Coffeetopia isn’t so scary anymore, and I have somewhere to escape to, people who “get” me and I can truly be myself.

Of course I’m going to feel an instant attachment to these fellow Aussies and stick close to them.

Now,

Let’s imagine that a native Coffeetopian adopted a child from an English speaking country and although they loved and accepted this child for who they were, they were still completely unable to relate to them and turned to me for help or advice.

Wouldn’t it be not only rude but strange if I turned them away or ridiculed them because “they aren’t one of us” even though they were just trying their absolute hardest to do the best that they could for their child?

Sure…..I’d have a natural preference for the Australians…they are people like me that were the same as me and understood my struggles living in this foreign country…but that shouldn’t mean that when an outsider comes in trying to start a friendship, that I instantly disregard them because they were born Coffeetopian.

***

Through my close friendship with Lisa (the alien hippy) , I have discovered that sometimes, adults with aspergers are carrying around a lot of hurt from their pasts and have more than likely been hurt by other neuro-typicals their entire lives.

I HATE that and my heart breaks for them.

But we are not ALL like that. I promise.

Yes….I know that I am not even close to having it all together. I’m sure that on many occasions, I have written something (innocently) that may have been misunderstood and sometimes, I may have attributed a certain trait to aspergers that is in fact- just a personality trait and not indicative of aspergers at all.

Please know that my intentions are always pure. I’m never poking fun at aspergers.

But you have to remember, that I am an NT island in a sea of aspies here in this house and it’s difficult for me to work out which is which at times.

The “judgemental and ridiculing mother” is such a stereotype that genuine NT mother’s like me are battling to overcome.

I have never claimed to be an authority on aspergers or autism and I have no formal qualifications in this field , but I do try 100% to do what’s best for my children and family.

I’m sorry if I have offended anyone, that is certainly not my intention but I needed to get this out.

It has crossed my mind a number of times recently that my own family may one day take a similar attitude to me and treat me with contempt because I am “one of them”.

I’m believing that God will step in this will not happen as I continue to nurture my family the best way that I know how.

In print…

I’ve spent the day today writing down my thoughts,
And all my gripes in a very long letter,
I wanted to send it but I know that I can’t,
Because it’ll makes things worse not better
.
I always try to be the best that I can,
As a friend, as a person, and a mother,
But unfortunately , I’ve been misunderstood,
And misjudged and maligned by another
.
It really got me down and I had decided that,
This was the end of all my daily blogging,
I was shutting back down and locking my feelings up,
My character had taken quite a flogging
.
But to my lovely friend, I cannot thank you enough,
For believing in me and talking me through this pain,
It is because of your prayers and your caring gift of love,
That has pulled me up and freed me once again
.
I know I’m not always such a pleasant and nice girl,
I take some things to heart and get real mad!
The way that I’ve been made is to de-fend all my kids,
And my heart breaks up when any of them are sad
.
If they really looked inside me and seached beyond my words,
They’d see that all my motives are pure,
I don’t intend to hurt people and make them feel so bad,
I can help it if others are insecure.
.
So I wrote a heavy poem and I filed it under “hurts”
And vowed that it is never seeing light,
The release I felt from writing it was just the trick for me,
And it will now help me sleep right through the night
.
I’m going to end by saying that I hope that they can see,
That this is all really silly stuff,
I’ve done my best to be God’s child and love my fellow man,
And they might not but HE thinks that’s enough.

****************************************************