Consequences – choosing the right door.

Image from: image by freeimageslive.co.uk – photoeverywhere

I haven’t blogged much lately – it’s been busy here with me commencing studying and the kids going back to school and therapies etc.

This year – Ella is in her second year of high school in grade 8, Harley has gone into grade 4 and Lucas into grade 1. They have all settled in nicely as far as school goes but as is usually the way – home life hasn’t been anywhere near as smooth sailing.

Harley has rediscovered anger and aggression and Lucas has begun to push boundaries in a big way again. But by far our biggest issue at the moment is trying to teach them both about consequences. It continues to be an extremely exhausting uphill battle.

Neither of them (but particularly Harley) seem to be able to grasp the concept that what they say and do now will ultimately dictate whether or not they are praised or disciplined for their behaviour(s) in the near future. It’s frustrating and so far I haven’t seen a lot of progress. But I’m not giving up just yet!

I’ve been asking questions such as: “How do you teach a child who isn’t able to even name their own emotions (let alone realise that other people have feelings and desires)  that they need to factor all of that in when they are making decisions that may also affect others?”

And: “How do you correct them without making them feel like they have failed or broken some unspoken rule that they aren’t aware even exists?”  I don’t want to break their spirit and cause them to feel useless or stupid.

Well – I’m honestly not really sure because we’ve also been on a steep learning curve as we try to parent without having any idea what we’re actually doing. But the good news is that WE as parents are able to learn from past parenting failures and therefore use a different approach the NEXT time that a situation arises. Because WE’VE learned that what we were doing just wasn’t working. So we can no longer use the excuse that “they don’t get it” because the onus falls on US to become teachable instead. Especially if we hold any hopes of actually training our boys to be responsible and caring adults one day.

Admitting that we haven’t got it all together is paramount to achieving success in any aspect of parenting. Stepping down off the pedestal and continually looking for new and better ways to parent is the only way that we will ever find what works for us and our children.

*****

This week , I was driving along in the car with my Mum and Ella. I pulled up to a set of traffic lights and looked into the rear view and saw my beautiful teenaged girl sitting there quietly singing along to her iPod. When she noticed me, she smiled and gave me a cute little wave and I immediately got a flashback to her at 18 months old sitting in her car seat kicking her legs and laughing as we drove along. She was SUCH a delightful baby. When she came along,  our lifestyle barely changed, our social life continued and we only ever had to say “no” or “stop” to her and we would get immediate obedience and absolute compliance. She never pushed boundaries (and still doesn’t), she never threw tantrums and she always seemed to slot in effortlessly anywhere that we went.

But guess what? We parent our boys in the EXACT same way that we parented (and continue to parent) her.The house rules and behaviour requirements haven’t changed, the expectations are exactly the same and whilst she continues to be pleasant to live with – the boys are increasingly challenging and pushing us to the limits of our patience.

And this is why we KNOW that we aren’t necessarily crappy parents so much as we need to find a different but equally as effective method of teaching the boys. It’s not that we think Ella is a better child, it’s just that she learns in a more mainstream way than they do and she adjusts to and understands the unspoken rules of society much better than her brothers. We were never in a position where we had to research and trial other less conventional methods of parenting with her, the methods that ‘everybody else’ used worked for her. We didn’t realise how just fortunate we were.

And because we had her first – I can understand why parents of children like Ella wrongly assume that autism is no more than a badly behaved, badly parented and spoiled child. This was one of the factors that led me to starting this blog. I want to scream from the rooftops: IT’S NOT ALWAYS THE PARENT’S FAULT!!!!!

I digress……

*****

I truly believe that ANY child whether they have a special need or not can be taught anything. It’s just a matter of finding out what works for each child individually and not applying a one-size-fits-all approach to learning. I am all for it in the classroom and in social situations, I want my boys to be given opportunities to flourish and I regularly quote the phrase: ‘Fair isn’t every child getting the same thing but every child getting what they need’. But embarrassingly – It’s only been recently that I have started to apply this same approach to my parenting style and start to think outside the box to find a way that will work for US as a family.

I have read a LOT this past week on teaching consequences and the best piece of advice that I found was to go back to the tried and tested social story.

So guess what I’ll be doing this week? I’ve also decided to try to make the most of Harley’s visual brain and have settled on the idea of teaching the boys using a RED door for a bad consequence (STOP) and a GREEN one for good (GO). Because it will be much easier for them to visualise and recall which door that a particular past behaviour has led them to so that they can LEARN from their past experiences than for them to recall a whole bunch of confusing and meaningless words.

And once they’ve learned how to connect behaviours to the right or wrong doors – we will be well on our way to success. Wish me luck! I hope I’m onto something!

Once it’s completed I will post it here and on the Wonderfully Wired Facebook Page so stay tuned.

Five years later….

Another year without you Dad,

Twelve months of  ‘life goes on’,

And yes – it does, despite being sad,

I’m learning that’s NOT wrong.

~

It’s hardest when the memories come,

And take me by surprise,

The smallest thing pulls me undone,

And tears pour from my eyes.

~

But memories can bring laughter too,

And cheerfulness heals pain,

Remembering the pranks you’d do,

Has me giggling and smiling again.

~

You taught me how to be my best,

You showed me how to laugh,

To trust in God whatever the test,

And to always follow my heart.

~

You taught me that life’s greatest things,

Are people – not possessions,

And showed me how much joy it brings

To love life’s little lessons.

~

I’m thankful for the times we had,

I’ll cherish them forever,

Those thirty-two years I called you ‘Dad’,

They couldn’t have been any better.

 

 

Love you Dad.

 

5 years today.  XX ♥ XX

Measuring success…

Image from snapsurveys.com

I’ll let you all in on a little secret: When people talk to me, write to me or ask me questions, I always go away and analyse the entire conversation and make mental notes afterwards. I have learnt a lot about myself as a parent, friend and person by trying to see things from other people’s perspectives.

A new follower on my Wonderfully Wired Facebook Page asked me just today: “How do you both stay on the same page as to what the ‘right’ thing is to do in a situation?”

I waited almost an hour before answering this because the question caused me to stop and think for a while before I felt that I could answer it properly. I actually laughed out loud when I first read it because from where I sit – we don’t agree on ANYTHING and are failing miserably as parents!

We almost never see eye-to-eye on discipline or parenting. I think he is too harsh and he thinks I am too soft. And our marriage has been through some mighty big ups and downs because of this but we are learning to focus on the child and their needs instead of trying to just be heard (or right) ourselves. So I wrote and told her that there is no right way and that it’s different for every family. It’s about working out what’s worth the fight and what’s not and about choosing to do what’s best for the child. It’s also about educating yourself and discovering the difference between naughtiness and sensory overload, between a tantrum and a meltdown and recognising the times when bailing out is your best option. Despite how you actually feel. (And wow do I struggle with THAT one).

I’m a very social person and having to learn to leave when my son has had enough was a tough one for me. But parenting kids in general (and especially when they have high needs) is ultimately all about sacrifice.

Sacrificing the need to be “right” all the time and sacrificing what you want to do in favour of what your child actually needs. But sacrifice isn’t always a negative word. Sacrifice can also mean: devoting, dedicating and giving.

Most of the time I am prepared to put in whatever it takes now because I know the rewards will make it all worthwhile one day. But there are many days where I still stomp and moan and carry one because “It’s not faaaaaaair, I can’t dooooo this!”  And I have spent a lot of time on my knees crying out to God begging Him to make my life simple and take away all the “hard”. I have also yelled out “What did I do that was SO WRONG that this is the life I’ve been given”.   So don’t think for a second that I breeze through this autism parenting thing…Or parenting at all for that matter!

But I’ve discovered that anyone who makes the choice to blog about their family and living with autism walks a very unsteady balance beam every time that they write. I have noticed that if I write too much about the hard times – I get criticized for being an attention seeker and for painting my children in a bad light, but if I blog about only the good stuff – there are people who read it and wonder why they can’t get it right and wish that their kids were progressing as much as mine are and wonder what they are doing wrong. I’ve even had people ask me what my secret is???

But here’s the thing.

NO family has it all worked out. NO family gets it right every-single-time and NO family could honestly tell you that autism hasn’t rocked their world in some ways.

And any parent with a child on the spectrum will tell you that often our kids will take one step forward and then ten steps backwards and it’s hard sometimes to stay cheerful and positive when you feel like screaming and throwing in the towel. But I try. And I keep putting one foot in front of the other and keep doing my best because they deserve nothing less.

However – I have learned a new way to measure how we are all doing. And it has NOTHING to do with comparing our life to other families. Even those families with autism because every-family-is-different.

I now look at a situation and ask myself – how does this compare to last week, to last month and to last year? And if I can honestly say that we have moved forward (even if only mere millimetres) than it’s marked as a success.

Things don’t have to be easy and wonderful all the time but I’ve learned that progress is progress no matter how small and insignificant it may seem at the time. 12 months ago we wouldn’t have even have attempted going to Costco but two days ago – WE DID IT!

I’ve put dreams on hold, I’ve opted out of a lot of things that I really wanted to do and almost every day I have to remind myself not to live in regret and for the most part – I am happy. I’ve learned that it’s no longer all about me. I have a purpose and I will do my best to make sure my kids grow up to be successful.

And that’s really all that any parent ever hopes for.

Sneakiness has its merits…

My friends are sneaky.

Not all of them, but some of them.

These are the friends who instinctively know when I’m off my game and don’t let me fade away because they know its not good for me. They know that when I withdraw it’s an alarm signal.

You know……

• The email that states that I’m not required to respond but that they want me to know that I’m being thought of and prayed for.
• The text messages that are innocent enough but have a deeper underlying purpose….digging for details on how to help me. Or even asking a mutual friend to contact me to check that I really am ok.
• The phone call out of the blue just to say “Hi” .

And then there was today. Today a friend took me out for lunch. And the fact that I can boldly say that it was the best gluten-free meal I have ever eaten to date is not the most meaningful thing that I took away from our little rendezvous. The wonderful quaint little gift shops that we browsed in wasn’t it either. And believe it or not: it wasn’t even the amazing coffee we had. No. It was “where” she took me. She knows me and what I love the most.

Remember in previous posts where I have written that sometimes I need to escape to the country to find my balance again? That there are days when I just need to get away from the stress and hectic pace of my life and clear my head?

Well….she took me there. To my favourite little country getaway with the beautiful people and the incredible landscapes and cute little churches.

She’s clever isn’t she?!

But I didn’t work out her plan right away.

Sure she mentioned that she’d noticed that I sent her a picture last night instead of writing but I didn’t think too much of it at the time.

I savoured my lunch. Well no, actually – that’s a complete lie – I wolfed down my sourdough chicken burger like there was no tomorrow! But what I mean is: I was content in my surroundings and relaxed and happy, I was laughing, chatting and absolutely in my element. And I haven’t been in that place of contentment for quite a while now.

My friend asked me if I could picture myself sitting outside on the verandah with a coffee listening to the bell birds with my iPad in front of me writing. And even then, I still didn’t realise what she was doing. I’m not even sure if it was deliberate or not but it worked.

I turned a corner. I was able to quash the feelings of inadequacy and standup to that voice in my head telling me that I’m a waste of space and mentally yell back at it: “What I think and write and who I am is important so SHUT UP!”

Giggle ….giggle….I like feisty Fiona …

My friends know that writing is what works for me. It’s how I process my thoughts and work through emotions. But lately I have shunned writing. It has all been too hard and I really wasn’t keen on facing any of my challenges head on.

I kept my head stuck firmly in the sand refusing to face up to anything.

There has been a lot of stress here lately and the fact that our house is currently on the market hasn’t helped. We have had a low offer which we refused and another offer of the exact amount we were hoping for only to have the buyer change their mind and withdraw their offer 2 days later. At this point it looks like we’re staying put and I’m more than happy with that right now.

Also: it is the last week of school next week and the exhaustion and frustration is evident in all of the children but especially Harley. He is tired. He has mentally signed off for the year and is coping by tuning out everyone and everything. (Hmmmm. wonder where he got that from?) hehehe

There have been challenges in our marriage and struggles in our family dynamic and its all gotten on top of me.

But my friends haven’t deserted me. Even though I know I’ve been difficult and aloof lately, the emails and texts have been constant and kind and caring. I have needed them . They are truly what have kept me going.

That and the reminders of where I need to get my strength. I admit that lately I have stopped laying all my cares at the feet of Jesus. I have tried to do it in my own strength and failed miserably. But just like my friends here on earth He hasn’t forgotten or forsaken me. And for that, I am truly thankful.

I have learned that unlike my husband and sometimes my boys; I need people. I need to chat, to hug, to be hugged and to do life alongside others who get me. Some people do well by limiting their interactions but I’m not one of them. I crave human contact and start to nosedive whenever I choose to isolate myself.

And tomorrow night: I hope to write more about the past few months and the awesome progress that my boys have made.

The clouds are clearing: the sun is peeking through and the curtain of lethargy and depression is lifting.

And even though I was raised in a Pentecostal church – I am still partial to the odd old hymn. Like this one because it just sums it all up perfectly.

It is well with my soul.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, (it is well),
With my soul, (with my soul)
It is well, it is well, with my soul.

Is technology ruining parent-teen relationships?

These days, technology and teenagers seem to go hand in hand. You rarely spot one who isn’t holding a screen of some sort or with ear buds in their ears. You know – the tell-tale white cord dangling down over their shoulders which is a dead giveaway to some sort of MP3 player or a phone underneath their jacket.

And my girl is no different. We rarely see her without those wretched ear plugs in and I have photographic evidence!

We resisted buying into all the electronics and gadgetry for as along as we could but eventually we ended up giving Ella a phone like all the other Mums and Dads did. She won’t be 13 for another 4 months but we decided that she could have it early.

Because even when you’re an adult in your 30s – peer pressure is a killer!

But of course I’m kidding!

Sort of.

A lot of parents of my generation and older moan about how society has forgotten how to communicate effectively and that websites such as Facebook or Twitter have killed off meaningful relationships and yes – I believe that’s true to an extent. But I also think that some of it is just refusal to admit that times are changing and that there is some good to be found when you lay aside personal reservations long enough to search for the good.

I understand the issue that a quick sentence typed online isn’t the same as going to a friend’s house for a coffee and catch up, but the reality is that life today moves so much faster than it ever has done before. So we’ve gotta bear that in mind when we look at how the younger generation operates. This is all they’ve ever known.

Back in the 90’s when I was growing up as a teen, I talked to my parents about everything. And I do mean everything. I was (and still am) a very open person. I pretty much lay it all on the line and what you see is what you get.  I don’t really have deep dark secrets – I just don’t do things that need to be hidden in the first place. That’s just me.

I love to communicate via words and my absolute favourite thing in the world to so is to have deep and meaningful conversations with those closest to me. I love to get to know new people and learn as much as I can about them because I have always found people absolutely fascinating! I have the gift of the gab and it’s really hard to shut me up once I get started. Talking is my thing.

So imagine my shock when I discovered that my daughter is the complete opposite to me and really doesn’t communicate a lot at all. (Bearing in mind that talking and communicating are two completely different things). I mean, put her with her school friends and they are a ball of chatter and silliness but you couldn’t extract a meaningful conversation out of her with a crow bar. She is simply not a communicator and doesn’t really offer up any indicators of her current mood, thought pattern or dreams and desires. She would make a fantastic poker player because she never gives anything away and most of the time I end up playing the stupid guessing game.

But I do know that she is a really great child and that she doesn’t do this because she has something to hide, but because she doesn’t know HOW to convey her innermost thoughts and struggles to anyone. I have secretly worried about her for quite a few years now because she is such a closed book, and in the past I have tried a few times to force information out of her with varying levels of success but lately, we have noticed a massive turnaround and I have technology and her school to thank for it.

Because a while ago, she came home with a note from the school saying that the rules had been reviewed and that mobile phones and iPods were now allowed to stay with the students during the school day (previously they had to be handed into the office).But the note stated that they were only to be used during lunch breaks. The kids were now allowed to indulge in the technology that has such a strong pull on them. It was progressive thinking and I think the school was very clever in their methods. They really get teenagers.

So Ella started taking along her iPod and loaded it up with apps like a French Dictionary, music apps and various other useful ones. Every afternoon she would come home and download hundreds of photos that her and her friends had taken during the day. Most of them were selfies or silliness but they were fun to look at and one afternoon as I flicked through the latest assortment, I thought: Wow….it would have been awesome if I had these kind of memories from my school days!

**

But for me, the real defining moment of my joy in modern technology was the day that I was mopping my kitchen floor and I my phone buzzed on the kitchen bench. I walked over and picked it up to check who had sent me a message and was surprised to see that it was my Ella.

She didn’t just text me to say a quick “Hello”. She was really communicating with me! We chatted for almost her entire lunch break about her friends, what she had done that day at school, her ideas for the weekend and she even opened up about other areas that are usually no-go zones when we’re talking face to face. And it didn’t stop there. My girl trusts me now. She really really TRUSTS me! She has confided in me several times since that very first text and I now look forward to hearing from my girl around 12 noon every other day.

She still climbs in the car each afternoon with barely a glance in my direction, she answers me with one-word answers and isn’t interested in sitting down and opening up her heart to me but that’s ok with me now because my girl has reached out to me!

She has found her medium, she feels safe when her fingers are doing the talking and I am discovering more and more about this beautiful young woman who is flourishing right before my very eyes even if it is in a non-conventional way.

I hold hopes of maybe one day that we can sit in a coffee shop together while I bounce my grandchild on my knee and she tells me all about what’s going on in her life but for now – I’ll take whatever she has to give me.

Oh heck yeah – I’ll take it! Bring it on!

When I was 13…

This was me when I was in grade 7 and 13 years old.

Back in 1988, I was 12 going on 13 and was in grade 7. It was my first year of high school and I was the exact same age that my daughter is now.

But things were very different for me than it is for her in a LOT of ways. The world was a completely different place.

1988 was the year that the Summer Olympics were held in Seoul and it was also the year that CDs out-sold vinyl records for the first time. Australia had it Bi-centenary that was celebrated with a huge expo in Brisbane and I went twice. It was magnificent!

My sister and I at Expo ’88

*

*

That year was also the first time anyone had heard the phrases: “Just do it”
(Nike) and “I’m not bad – I’m just drawn that way”
(by the now famous fictional Jessica Rabbit).

We were watching films like: ‘Rain Man’ ‘Who Framed Roger Rabbit’ ‘Big’ and ‘Twins’ and listening to ‘The Beach Boys’, ‘Bros’, ‘Gloria Estefan’ and ‘Guns N’ Roses’.

The TV shows that were popular were ‘Cheers’, ‘The Golden Girls’, ‘Growing Pains’ and ‘Who’s the Boss’ and were very tame in comparison to a lot of the crime based shows that are around nowadays.

These were the pre-technology years in most homes. No-one I knew had a home computer, mobile phones weren’t yet invented and the town I lived in only had 2 TV channels available.

Even so, I remember being generally happy with life because people actually got together in person to talk and to “be” together and technology hadn’t yet changed everyone’s perception of friendship.

But then again, when I was 13, I didn’t have little brothers.  And I didn’t have autism in my family. I didn’t know what autism was and I certainly wasn’t expected to do half the things that my daughter does just to help us stay afloat.

I didn’t need to help my Mum cook so that she could be a referee to my siblings, I didn’t sit in boring therapy waiting rooms for hours while one of my brothers had an appointment and I didn’t have to endure hours of screaming, crying, whining and meltdowns at all hours.

I was able to sleep through the night without being woken and our family was able to go out and enjoy being together without an escape plan firmly in place.

I was never expected to put up with being physically attacked and emotionally drained and I wasn’t constantly being put last (un-intentionally) because my brothers had higher needs than me.

I wasn’t living in a house filled with visual schedules, sensory areas and autism-friendly reminders stuck to the walls. I was just your typical teen without a care in the world.

My parents never asked me to bath, dress and feed my brothers and I never once had to think like an adult when I wasn’t cognitively there yet.

I NEVER had to phone my Grandma because I was concerned that my Mum was unresponsive and lying on the kitchen floor sobbing mid-nervous breakdown in a puddle of tears and the hardest thing I’d ever had to deal with was breaking up with a boyfriend who I’d never even had a face-to-face conversation with!

My days consisted of school, homework and then free time to do with whatever I pleased and after school was the time for TV, phone calls with friends and relaxing. NOT avoiding stress by locking myself in my room with my pillow over my head.

I still adore my little sister xx

My own Mum always had time for me. She ‘made’ time for me and I had a sister who was only 14 months younger whom I adored. (And still do). Life really was pretty smooth sailing and I have to admit that I never really appreciated it for what it was.

I guess you could say that I really had no idea of know what hard was.

But my Ella does.

And I absolutely hate that being 12 is so demanding for her.

I would love to allow her to just ‘be’ a pre-teen. I want her to have the fun that I did. I want her to be able to come home to a quiet house where she feels free to unwind from her day without the constant drama that autism has brought into her life.

I want her to be able to have friends over without worrying that they will see one of the boys in action. I saw the look on her face the day that Harley lost it in front of a friend who had slept over. I felt for Harley but I also felt for her. I remember being that age and the torment of feeling ‘different’ and ‘unusual’.

I don’t like that she has to shoulder so much responsibility but I ‘do’ believe that one day she will grow into a stronger woman because of this.

She really is a beautiful child. Sure, we’ve had some interesting times with her lately but I think that this just comes with the age. Most teens push boundaries, have attitude and try their luck at times.

And she is no different. But I am making a point of telling her frequently just how much her Dad and I appreciate and love her. She has been an absolute rock to me and my heart swells with pride every time I see her tenderly reach down and hug one of her brothers. I know they drive her as crazy as they drive me but she never fails to amaze me with the depth of her compassion for them.

Ella now.

She may have it rough now but I can guarantee you that this one is going to grow into and amazingly resilient young woman who is shaped by her youth and her resilience will surprise even her.

And womanhood really isn’t that far away * bites fingernails* The pride that I feel when she exhibits such maturity is what continues to give me peace in those times where I wish that her life could be different.

I really truly do know that I am blessed.  :)

Love + sacrifice = progress

Not a proper post tonight….I’m just writing out some of my random thoughts… you know, working through some stuff that has been rattling through my brain of late

There is a saying that when a child is diagnosed with autism – the whole family is diagnosed with autism. And it has to be that way because every single member is affected in some way whether directly or indirectly.

It’s taken me the whole 5 years since we received Harley’s diagnosis to fully accept that things will never be the same as they were pre-diagnosis ever again. And for me – it’s was a very slow journey to reaching acceptance because – I’ll admit, that it’s a daily struggle for me to have to adjust my expectations and ideals.

The selfish part of me that creeps up occasionally wants to do things the way I’ve always done them.

See – I’m stubborn like that.

There are still many times that I have to stop and remind myself that we are an autism family and that what works for most families simply wont work for us. And then I have to make the necessary allowances to make it work, or deal with the inevitable consequences.

All mothers have to become selfless and put their child’s needs above that of their own in order to be an effective parent, but when you are raising children on the autistic spectrum – it’s even more important because their needs and daily requirements far exceed regular kid stuff.

I was told recently by a health professional that I’m going to have to eventually recognise that I don’t have a family that will fit into what society deems to be normal and that outings will often present challenges and sometimes I have to make the choice to either stay at home or leave ‘him’ at home thus separating the family. I need to choose which battles to major on and which ones to let slide.

Or, I could take the third option which is taking Harley out with us and being prepared that he may lose it or we may have to end up leaving early.

She said that this is just the way it is and that although things will get easier the more often that we do them – it’s always going to be something that we will have to work very hard at. And she emphasized the ‘always‘.

I sulked for a good week after I was told this. I knew it already in my heart but I let my emotions get the better of me.

Everything in me was crying out: “NO….it doesn’t have to be that way”…

But you know what? It actually does.

I’m getting a lot better at this as the months pass by and I can now admit that as a family, we are different and we have to do things differently. And I can even admit that even though it’s a huge inconvenience to me to have to make different choices – the truth is – my son means more to me than any preconceived ideas that I may have about what I really want out of life.

And that’s what growing up is all about… leaving behind what you think you want, so that you can make way for what’s more important and what is necessary in life. You make the big sacrifices because you love.

It’s that simple.

1 Corinthians 13:7
…love always protects, always trusts, always hopes, always perseveres…

Get outta my head!!!

Lately I’ve been starting to own some of my deepest fears. I’ve admitted them, faced up to some of them, started to deal with them and eventually with God’s help: I’ll overcome them.

But you see , I often have this awful feeling that’s hanging over me like a heavy blanket. It’s that feeling that lurks in the back of your mind that isn’t obvious but it makes you aware that you’re ‘uneasy’ about something, but it’s something that you can’t quite pinpoint.

And that feeling is called “dread”.  

I often complain because it feels like we never get invited anywhere, but when we do – my brain starts going into overload and I start the train of thought:

‘What if the boys can’t handle the noise, the crowds, the venue….What if Harley can’t eat anything there, What if no-one talks to them, what if people DO talk to them and make fun of them, what if one of them has a meltdown….what if we never get invited back’.

Or worse still: ‘What if they behave so beautifully that they make me look like a big drama mama looking for sympathy’!?   (because it’s all about ME don’t you know!)

And then I start thinking of ways that I can decline the invitation graciously whilst feeling sorry for myself in the process.

But then other times, we DO accept invites and we DO actually go out. But I rarely enjoy it because the entire time that we are there, I am trying to stay one step ahead at all times. Trying to predict possible triggers and avoid them if possible and I throw all my energy into making sure that the kids are taken care of that I forget about me.

Do you see what I’m doing here?

I’m getting so caught up and carried away with the what if’s that I am unable to enjoy the moment. I am unable to go out and have a good time because I’m afraid of the consequences of letting down my guard for even a few minutes.

And that’s not just me being overly protective. I have let my guard down before, I have listened to well meaning friends tell me “He’ll be fine” and “Stop worrying” only to have to deal with the mammoth-sized meltdown once we get home again.

And I really don’t know which is worse.

But I have learned recently that dread is a close relative of fear. I was reading *THIS* article by Joyce Meyer entitled : How to enjoy life despite your circumstances.

And in particular, this passage: 

It’s impossible to reach your God-given destiny if you allow negative thoughts to fill your mind. Dread is a close relative of fear, and allowing it to remain in your mind, sets you up for misery and robs you of joy. 

 And that’s what I’m taking with me into this week. I’m responsible for my own happiness. I don’t have to allow dread and fear to make decisions for me. Yes, going out with my boys sometimes is very hard and draining, but I have decided to refuse to live in dread anymore.

The honest list..

Today I had to complete a task that I absolutely hated doing. I had to sit down and write out all the areas that we struggle with our Harley so I can take them to his appointment with his new psychologist on Wednesday. I had to fill in forms and provide all the applicable paperwork and this all took me quite a few hours.

Now I know that there are a lot of issues with Harley that need work, but until I took the time to actually sit down and write them all out, I had managed to convince myself that things weren’t really all that bad after all.

But they are. The list is loooooong.

I listed everything from his defiance, aggression and anger through to his OCD quirks and sleeping issues. And as I sat there and read the list back to myself I was confronted with a fact that I have been avoiding for quite a while: The fact that our entire family revolves around this child.

It seems that every argument that has ever occurred in this house has been somehow tied to him whether directly or indirectly. He is always angry and out-of-sorts, he is volatile, he is hard to please and he is extremely vocal when he’s unhappy. I find myself often avoiding disciplining him firmly enough because it’s just too hard having him scream at me and attack me physically.

Paul and I realised over the weekend that the reason we never go anywhere as a family is because it’s either too hard to deal with his tantrums in public or too hard to deal with the aftermath once we return home again. And I no longer think that this is solely related to his autism because we don’t have the same issues with Lucas at all. I’ve always referred to them in blogs as ”the boys’ instead of pointing out that most of the time, it is Harley who makes me want to tear my hair out. Because that seems unfair to do. But sadly, it’s the truth.

And its not like we haven’t tried to go out. If we do happen to mention to the kids that we’re going to the shops for a few items, Lucas simply says “Ok” but Harley starts screaming and eventually Lucas joins in. Lucas constantly copies his brother and the thought of having two of them this explosive frightens the heck outta me.

So that’s why we have to deal with Harley’s anger before that happens.

Most of the times that we do actually go out and then end up staying somewhere too long (in his opinion), the moaning, hitting and yelling starts. So more often than not we opt to just stay home because it’s the easiest option.

Which would be ok if it didn’t bother us to stay home. But it does, because very soon after a failed attempt at an excursion – the resentment sets in and I find myself becoming angry because I feel that I have no life whatsoever and I end up in a foul mood because I’m sick of being so house bound.

I know that choosing to become a parent involves hanging up your selfish hat and putting your kids before you, but this is ridiculous. There has to be a bit of give and take not just take,take,take,take all the time.

Paul and I both hate weekends. And Lucas and Ella have also vocalized that they don’t like them very much either. Ella often sits with her head in her hands when Harley is escalating and unfortunately Lucas regularly cops the brunt of a lot of Harley’s anger. He is constantly being punched, hit and kicked.

Which is why I’m pleased that we have this appointment approaching because it turns out that the OCD is only the tip of the ice-berg with Harley. And whilst it sure would be good to hand him over and have him returned to us completely fixed, we know that it’s not going to happen and there is a long haul ahead of us.

But herein lies my greatest concern. It is bothering me that in order to give the psychologist all the necessary information to help Harley, I will have to paint a pretty nasty picture of my little boy. Much like I have here but the difference is that all of you who are reading this know from previous posts that I would do anything for my precious little boy and I adore him, whereas I have to meet her under very different circumstances.

But I have to present worst case scenario right? My boy IS worth it , he is extremely valuable to this family and he deserves all the help that we can get him.

And that’s what I will continue to tell myself until I stop feeling like such a cad.

Being lonely in a crowd.

Because nothing sucks worse than feeling alone, no matter how many people are around.

— JD, Scrubs

 This quote really hit the nail on the head as far as I’m concerned. It really is so hard to be surrounded by people that you know yet feel so alone and lonely. I had one of those experiences today and it really was hard I’ve got to say.

This morning, Lucas had a birthday party to go to for one of the little girls that he goes to school with. This is only the second party he’s ever been invited to so he was really excited and couldn’t wait to get there. I arrived and walked him inside and watched him deliver the present to the birthday girl then happily run outside and onto the jumping castle with the other kids. I said a silent ‘Thank you’ to God that Lucas is my sensory seeking child unlike Harley’s sensory avoidance because the chance of a meltdown happening with Lucas were far far less. He was in his element today – crowds, noise and fun.

I spoke briefly to the little girl’s mum and she asked me if I was going to drop him and leave or stay at the party. I glanced around at the other Mums all standing around talking and I recognised most of them from school and my decision was made so much easier. I opted to drop and run. 

(This might surprise some of you reading because most autism Mums wouldn’t dream of leaving their child in a situation like this. And I do understand why you might be questioning my decision, but let me say that if it were Harley at this party and not Lucas – you wouldn’t have been able to get me out with a crow bar. Lucas is far lower on the spectrum than his brother and doesn’t have anywhere near the anxiety or sensory issues that his brother does. Lucas’ biggest social issue is that he just talks at people non-stop without reading any clues or knowing when to stop).

So yeah. I left.

I got back to my car and sat there for a few minutes chastising myself for being such a wimp. I knew the reason I’d left but I didn’t really want to admit it to myself. I used to be a naturally very sanguine personality who loved to be around people and loved chatting and making new friends – but lately – it’s just all too exhausting. Nowadays, I struggle to be around groups of mothers who aren’t dealing with special needs kiddos because I’m jealous.

That’s right, I admitted it here. I’m jealous. It’s not that I want what they have – and I’m NOT saying that I don’t appreciate what I do have, but sometimes – I get sick of struggling with the basics which seems to come so much easier to other families.

I find it really hard to listen to them talking about their weekend plans, their kid’s latest sporting achievements and share their cute little antics with each other. My heart sinks a bit when I hear them chat with each other about how well their kid is doing at school, or about the play dates they’ve all had with each other recently. And I know that it’s not that these ladies don’t like me. No, it’s not that at all. And I’m sure that they are lovely people with kind hearts, but when you know that you have to go home and back into the war zone that is your daily life – it’s hard not to get a little down.

I rung Paul to let him know that I wasn’t staying after all and we decided to meet up at a coffee shop to pass some time. I arrived soon after and met up with Paul, Ella and Harley and it became pretty clear as soon as I’d arrived that this was indeed the entrance to another war zone…sigh…Harley was overcome by the crowds, the noise and the bright lights and we pulled pretty much every trick out of our bag in an attempt to have a scene free rendezvous without success. I glanced around at the other patrons in the cafe and my heart became heavy again. Some were staring at us, others were a little more discreet but the things that really got me was seeing how care free and relaxed everyone else seemed to be. It was the exact opposite of what we were feeling and at once I felt so alone again.

The stress was starting to show on Paul’s face too so we cut our losses and he took the kids back home, and chalked up yet another failed family event.

I got back into my car and went to pick up Lucas and he ran excitedly into my arms the second he saw me and started talking my ear off about what a great time he had. The mother told me how beautiful his manners were and that he was an absolute delight. She giggled as she told me that he became the rubbish monitor following everyone around with a garbage bag and freaking out if anyone littered! I smiled at her and thanked her for having him and smiled down at my little boy as we headed for the front door. He sung a little happy song to himself as we drove down the street before suddenly bursting into tears that lasted until we got home and beyond.

I’m not sure what triggered it or why he got stuck in a loop but Lucas screamed consistently for the next 3 hours until bedtime. He was distraught, he was inconsolable and he was a complete basket case. Bathing him resulted in me being kicked in the nose and covered in water. I had to wear an ear plug just to get near him because the screams were deafening.

Maybe it was the junk food and sugar overload that did him in? Maybe he is more sensitive to crowds and noises than I had thought?  Or maybe I should have pushed past my own personal discomfort and stayed at that party regardless of how being around other mums made me feel.  I suppose I’ll never really know for sure. But what I do know is that I am aware that this is “MY” problem and no fault of any of my friends or aquaintances.

So please don’t read this thinking that I have some sort of vendetta against those women who are blessed with neurotypically wired children because I’m not vindictive like that.  And I’m not saying that parenting typical kids is easy either, I’m just saying that although I know that I am incredibly blessed with my own children; sometimes I long for a little bit of normal. For my sake and for theirs.

Thinking ahead all the time is mentally exhausting. Trying to be one step ahead of everything is draining and sometimes I just want to go out for a coffee without the drama. I love to be around people but it’s hard to feel so alone.

And this is where I am thankful that I have God in my life. Without Him and His promise to never  leave or forsake me – I’d be a goner.

And that’s telling it like it is.

Where to draw the line….

 I have been having a lot of conversations with myself lately to the tune of whereabouts to draw that line?

And the line I’m talking about is the one between sharing too much online and sharing just enough. And to do this all whilst still maintaining my integrity and that of my family. It’s a tricky concept for me because I’m naturally a very open person and I’ve really had to allow God to guide me in this area.

My natural instinct is to blurt out exactly what’s on my mind and then go back and mend fences later. Sounds ridiculous I know but I have only in recent years been able to recognise that split second moment between using wisdom and having a verbal diarrhea moment!

I am a lot wiser nowadays but apart from using my children’s real names and our exact location, I do try to share anything that may be helpful to another family if only to show them that they are not alone.

Because here’s the thing: When I first started out on this journey…..I had no-one to tell me what was ‘normal’ in ASD world or what to expect in the coming days, months and years and really honestly felt like I wasn’t going to make it. So I started googling and searching and finding other blogs, and realising that we weren’t the only parents ready to tear their hair out frequently.

And we weren’t the only parents who have forgotten what’s it’s like to sleep uninterrupted through the night and we certainly aren’t the only parents who would give anything for their child to just make a damn friend!

But imagine if everyone who had written these blogs had decided that they weren’t going to tell it like it really is? Imagine if they only wrote what they thought would make people comfortable and that which paints a picture of the perfect family all sailing along beautifully. Imagine if they had drawn their line a lot closer to “need to know” and far away from their honest realities.

Wouldn’t I feel like total crap then?!

It’s through relating to another person’s experiences and THEN seeing them come out the other side that we are encouraged.

I rejoice with my bloggy friends when they experience a breakthrough but I also cry with them when they are in the midst of hard times. It’s that balance of difficulties and progress that keeps drawing me back to my friend’s blogs time and time again. Because I can relate.

I was involved in an incident at my children’s school on Friday afternoon where another flustered mother watched as my child completely and entirely lost it and nastily told me that “All kids have days like that occasionally, you autism mum’s think you own bad days ”.

And she’s absolutely right! ALL kids have days like that it’s true. But where she got it completely wrong was assuming that we think that we own bad days.

We don’t think that we deserve your pity or sympathy any more than any other parent, but we do have more experience in dealing with these types of situations simply because we deal with them a lot more often.

Buy what I actually think is that whether you’re parenting 1 child or 7 children, whether you have boys, girls, typically developing or children with special needs – it doesn’t matter….parenting is rough!

But her comment to me was said in a derogatory tone that really threw me so I didn’t respond to her at all but walked away and came home and picked it apart in my head for hours.

I wondered if she is hurting herself as a mother and feeling overwhelmed and unappreciated? I wondered if she wanted someone to reach out to her and she didn’t know how to ask for help so she just launched into attack mode? It may have been the only thing that occurred to her at the time?

Either way – I’ve had enough time to process this now and try to see the situation from her shoes and I’ve got to say – it all looks very different now to how it did on Friday.

~~~

As of yesterday, my Wonderfully Wired Facebook Page reached 159 likes. which absolutely blew me away. I searched through the list and found that out of that 159, I only know 26 of them personally as friends and only 7 of them are family.

That means that 126 people are also travelling down a parallel road to us and understand exactly what it is like to live in this house. That’s 126 people that can relate to our ups and downs and that’s really REALLY humbling for me!

But this train of thought brings me back to the mother in the playground on Friday.

You see – I’ve been on Facebook (partly why I quit for now), I’ve mixed in mother’s groups and I’ve stood around and observed body language and facial expressions on groups of mothers as they interact with each other. And frankly – It’s all a big competition.

Not many women will ever dare to show their true colours to their friends. It is an unspoken rule that to show weakness is unacceptable and puts a target on your head.

I learned a new phrase by Pastor Steven Furtick at our bible study this week that has REALLY helped me to understand this concept better and has challenged me in a really good way!

“The reason we struggle with insecurity is because we compare our behind-the-scenes with everyone else’s highlight reel”

 

And that is EXACTLY why I will continue to write about our life as it really is.

Have a great weekend all xx

Wordless Wednesday-13th June 2102

Remembering the warmer days…..This was taken in October last year in Santa Monica

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

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

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

The best things in life really ARE free.

Today was a good day  It didn’t start off so well though. We had both of the boys awake at various times during the night and then awake for the day at 5:30 am. Which wouldn’t be so bad except the fact that they don’t know how to “play quietly”.

There was yelling (us) crying (them), banging of toys, light saber sound effects (made by their mouths) and fighting over the Wii. (Which isn’t even supposed to be turned on until after lunch). So tiredly, Mr Patient and I resigned ourselves to the fact that a sleep-in just wasn’t going to happen and wearily started preparing for the day.

We had breakfast and told the boys our plans which consisted of pretty much everything that they hate to do: shopping, eating out and walking around , and the hissy fits that followed were just as we’d predicted

Mr Patient has his birthday on Monday and it’s mother’s day tomorrow so we had a few things we still needed to get so we decided to all go shopping together.

As a family.

We knew they’d hate it and sure, we could have done it in shifts so that the boys didn’t have to leave the house at all, but sometimes I dig my heels in and stubbornly tell them to suck it up and deal with it. There are times like today when we decide that they will never learn appropriate public behaviour if they’re always sheltered from it so we ignored the tantrums and we all piled in the car. I admit that there were a couple of times during the short drive there that I wondered what the hell I was thinking, but stood firm to my resolve.

After we’d arrived, we knew that feeding them something was our absolute first priority as everyone is calmer on a full stomach, and this Mumma needed coffee….so we found a table in the food court and got comfortable.

I glanced over at Harley several times during lunch, partly because I wanted to remain one step ahead of him in case he started to go downhill, and partly because I was in absolute disbelief at the calm and happy child that sat beside me!?

This is not how it usually goes for us. We rarely eat out without tears, meltdowns and headaches.

And then it dawned on me! I worked out why he was so settled.

Where we were sitting WAS quiet and it was calm. The corner booth that we had chosen was sheltered from the rest of the food court. There was a dividing wall between where we sat and the noise and crowds on the other side. And because Harley was sitting directly beside the wall, he was getting even LESS crowd noise than the rest of us and all he could see was us.

We had unintentionally found the perfect aspie seating area and Harley actually felt less threatened and a lot calmer. We enjoyed our meals and we happily chatted together as families SHOULD.

I know that this only seems like a small deal to some people…but I can tell you that for us this is HUGE!!!! It really is the little things. The little things all add up and I’m learning that if I sit back and take notice of these little things more often…..life won’t seem so overwhelmingly difficult.

Look at the joy on Harley’s face as we bond as a family.

For me – you can’t put a price tag on that

Pure joy.

Look at those nasty crowds BEHIND the wall

What I’ve learned these past few years.

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

That is the nature of autism.

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

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

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

What has autism taught you?

I remember…..

This was taken a few weeks after we received Harley's diagnosis. The same age as my reader's child.

I often get emails from strangers who have read my blog and just want to connect by telling me their story. They write and tell me how autism affects their lives and often the parallels between something I’ve written and what they are experiencing in their own worlds is fascinating.

I love receiving emails because it motivates me to keep writing and to keep spreading awareness one reader at a time.

I opened my email a couple of days ago and there was a new message from a brand new reader who had stumbled onto my blog during one of those (I assume) frantic 3am google searches.

They wrote about their child who has only been diagnosed as recently as 2 months ago. They don’t have any support networks as of yet and are not in contact with any other families that are walking a similar path to them. They feel isolated and frightened.

So naturally I sent them the link to Welcome To The Club written by the amazing Jess over at Diary Of A Mom. Because EVERY new parent should be handed that letter along with their child’s diagnosis. It is vital reading.

But do me a favour?….Finish reading this post before you click over there because once you’ve read Jess….you won’t want to come back

The parent who emailed me desperately wanted to know that there is a light at the end of the proverbial tunnel. They were anxious to find out when and if their child will grow out of this overwhelmingly exhausting stage and wanted reassurance that it will all be ok.  And to be completely truthful – I was unsure how to answer this at first.

I didn’t want to lie and tell them that the meltdowns, tantrums and sensory issues would just magically disappear one day and that life would become all honky dory all of a sudden. And I didn’t want to give them any false hope by telling them that they can expect their child to become “typical” overnight, but I wanted to assure them that what they are experiencing is a normal part of the early days of discovering that you have a child on the autistic spectrum.

I wrote of the feelings of loneliness, of grief and of self-doubt and I told them that I truly understood. I recognised the fear, the anxiety and the emotional overload that was evident in their email and I was forced to go back in my memory to when Harley was first diagnosed at exactly the same age that their child is now.

I remembered the meltdowns that seemed to go forever. I recorded some of them on my mobile phone so I could show it to the paediatrician because it felt like NO-ONE would believe that there was something “odd” about my child. He watched them and nodded knowingly and told me that I would eventually find a way to manage them.

I didn’t believe him.

I remembered the punch in the guts when this very same Doctor told us that our child was “different” and that we would need to adapt as he handed us a list of therapists, specialists and blood tests request forms. I remembered the desperate feeling of abandonment, and feeling overwhelmed and exhausted all at once.

And I remembering thinking that we’d never make it.

But you know what? Through forcing myself to go back and deliberately remember those early days – I was able to see for the first time just HOW FAR WE HAVE COME!

And it got me all excited!

I remembered these feelings and thoughts, but was able to recognise that we don’t live there permanently anymore. We visit them occasionally and we will always be tied to them in some way, but we have moved on to become stronger, wiser and a lot more street smart.

And so YES, I was able to see that there IS a light at the end of that darn tunnel. YES, it WILL get easier, but sometimes it’s probably more likely a case of our challenges seeming more manageable because we now have experience and adaptability on our side.

Back in those early days, we weren’t as capable of predicting possible outcomes in the same way that we can now. We now know precisely what Harley’s triggers are and we either avoid them completely or find other ways around them to make them work for us. We have developed a “tool kit” that is custom designed for him and we rarely go out unprepared these days.

We’ve altered our expectations and have finally realised that sometimes it just isn’t worth pushing stubborn elephants up hill anymore.

And because of this I would say: YES. There is hope. There is HOPE and you will be ok.  My heart breaks for the pain they are in but I KNOW that they WILL be ok.

Because love conquers all and they have more than enough of that for their child or they would never have cared enough to write.

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!

I am Mrs 79. Pleased to meet you.

I’ve been thinking a lot lately about the environmental factor in autism. Sure , we know it is only one possible theory as we already know that it’s also made up of a genetic component. And yes, I know there are certain people out there with theories that vaccinations have triggered off those children that were already genetically pre-disposed but that is an argument that I am NOT going into as this is not the direction that I want to take this post in.

So, I know that environment is only one small part but I definitely feel that it can be a big part nonetheless. Tony Attwood has said that to reach a diagnosis of aspergers, it is like ‘completing a 100-piece jigsaw puzzle. You need 80 or more pieces to complete the picture’.

 So, my boys are obviously made up of 80 or more pieces (and I believe the husband is too) . He often jokes to me that I am only one piece short of receiving a diagnosis myself.

In fact he regularly affectionately calls me ’Mrs 79′. He is referring to the obsessions that I have developed over the almost 14 years that we have been married. When we first got hitched, he took a photo of our master bedroom to show the difference between his side and mine.

His was spick and span, neat and tidy and anally perfectly organised. And then my side……clothes thrown everywhere, books piled high and balanced precariously on the bedside table, an abundance of moisturising creams and make up in the drawer that was regularly left open and shoes strewn carelessly over the floor.

You get the picture.

I deliberately misplaced couldn’t find that particular photo anywhere to put it on this post so you’ll have to take my word for it!
I was young, messy, lazy, nonplussed and regularly made fun of Mr Patient for his pedantic and obsessive ways.

I clearly remember (not knowing about ASDs back then) that he often had what I can now see were actuallymeltdowns if things didn’t go exactly as he’d imagined they would or if plans changed without his prior knowledge. For example: Before meeting me, every 1st Saturday of each month was spent on the ‘inside’ of the house cleaning, and every other Saturday was when he would do the ‘outside’ (mow the lawns etc). So you can imagine his freak-out the first time that I invited friends over for lunch on ‘Outside Saturday’  week. Or made a picnic and suggested we drive to the beach on ‘Inside Saturday’….. He struggled to say the least!

But then as the years passed, I became more and more obsessive myself. I became the mother that had all of my children’s clothes hanging on the same coloured hanger as the shirt: White shirts on white hangers, blue shirts on blue, orange shirts on orange hangers and they were all grouped together in the colours that blended.

The blue shirts were next to the green which were next to the yellow which merged seamlessly into orange etc. No-one else was allowed to touch the clothes…….including Mr Patient and I would flip out if anyone so much as looked at the wardrobes.

And when I hung clothes on the clothes line – blue clothes HAD TO be hung with TWO blue pegs. I simply wouldn’t cope if you used a red and a blue peg. *Gasp*

I had also started to turn into a neat freak wanting everything perfectly in its place and working myself to the bone to make it happen. I would screech at the children if they had more than one toy out and I was unable to leave the house in the mornings until ALL of the beds were made and the dishes were done on the off-chance that SOMEONE would come and visit. (No-one ever did). I really started to be bothered by all of this and questioned myself as I knew that this wasn’t the real me.

So I took myself off to see a psychologist fearing that I was losing it big time!

I had a lot going on; My Dad had just passed away, Harley was only recently diagnosed, I had suffered a particularly nasty case of glandular fever (mono) that almost turned into CFS and my body was in shut-down due to the 4 major surgeries it had endured in just 2 years.

My immune system wasn’t coping and my stress levels were at an all time high. The psychologist helped me to see that everything else in my life was literally spiralling out of control and I so desperately wanted to gain back some control. And the washing was one thing that I actually COULD do something about.

She gently explained that what I was doing was a form of ‘normalizing’ my life. By controlling these mundane every day things so closely I was able to take back some ground that I thought I had lost through circumstances beyond my control. Nowadays – I still LIKE my clothes to be on the right hangers but if they aren’t, I don’t lose it, I’m able to just shrug my shoulders and move on!

I have realised that it’s not the end of the world if a blue shirt goes on a red hanger and my house RARELY looks like a show home anymore. (I have three children for goodness sake!)

And yes, there is actually a point to this – stay with me, I’ll reach it eventually…..

So, back to the environmental factor in autism.

I was never a particularly obsessive person, in fact the bedroom photo story proves that point perfectly, but when stress and circumstances were combined……I did develop some very obsessive tendencies that are often associated with spectrum disorders.

So it is interesting to me now to look back and realise that environmental factors DO in fact play a large part in autism.  And the term ‘environmental factors’ does not just apply to untested chemicals, pesticides, flame retardants, detergents etc.. but things like the circumstances of our life, or the environment in which we live and also our everyday surroundings .

I wonder that if I was married to someone who was as sloppy as me and also didn’t care for routine, if things would have been different? I may not have dived into these obsessive natures that I often witnessed in my husband as HIS coping strategies and I wouldn’t be comparing my non-coping signs to those of individuals on the autistic spectrum?

I guess I’ll never know.

But my mum tells me that as a child growing up, I didn’t struggle in social situations, I made friends very easily and  I was NEVER obsessive or needed routine or structure.  I thrived with change and I know for myself that I have never felt particularly  ’different”’or had any trouble understanding body language or facial expressions.

Yet……now that I am the only NT in (what may as well be called) a house full of aspies – I have somehow been ‘moulded’  into an honorary aspie if you will. I think it’s just a case of sink or swim.

I have needed to adapt to my surroundings and I have had to choose to see things through a different lens.

I may have gradually gone from perhaps 20 pieces, to 30, then to 40 and now I may possibly be up in the 70s so I truly believe that the environmental factor HAS played quite a major part here.

It surely makes sense. I live it and breathe it. It’s all I am surrounded with. It’s something that I can never and would never WANT TO escape.

It’s all A-OK with me because 79 is a FABULOUS number after all.

Have a great weekend all.

Was it worth it? Yes, yes it was!

Occasionally, our family likes to walk on the wild side.

The most relaxed we've been for a while!

But for most regular families these kinds of things don’t seem to be all that wild because they are things that they probably take for granted and really don’t have to give a second thought to. Things that have become as natural as breathing, like taking a family outing to a live stage show as we did yesterday.

We took the kids to see “How To Train Your Dragon” and it was wonderful.

The preparation that we put into this event before even leaving the house was mammoth and it’s sometimes a mind-numbingly boring task, but one that is extremely necessary if we want to survive!

In the days leading up to Saturday, we spent time talking about what might happen and discussing what to expect with the boys.  We NEED to do this because if we don’t – we suffer the consequences in over-stimulated and inconsolable children.

In our chats, we covered things such as: crowds, smells,  loud noises, bright lights and anything else that might be an onslaught to (Harley in particular)’s sensory system.

So yesterday morning, we packed the car and reversed out of the driveway.

Cue the anxiety. DESPITE all the preparation. *sigh*.

Harley rocked, he flapped, he cried and he yelled. I was kicked in the back of my seat several times and during the 45 minute drive, we were asked dozens of times ‘How much longer’ through a torrent of tears.

To a person who is unfamiliar with autism and how anxiety and fear of the unknown can often present – it would have easily have seemed that he was being an ungrateful and spoiled brat. But I knew that he was just unsure and overwhelmed with the anxiety that so often cripples him, but even myself who understands the why’s of this behaviour seriously wondered if it would have been better to just turn around and go home.

However – one thing that we have learned is that we know that we need to expose our kids to more of these kinds of situations – as hard as they seem at the time – to help them to learn what is and isn’t acceptable behaviour in public. I often feel cruel putting them in situations like this that are difficult for them but know that the end pay off is worth it.

And it was.

They absolutely LOVED the show, and to watch the wonder on their little faces as they took in the drama and action was priceless.

And I had another example of how small the world really is. The lovely lady sitting beside me  (Let’s call her *Jenny) had a lovely teenage son who reacted to the smoke in the air before the show began. I noticed him pull his shirt neckline up over his nose in much the same way that I have noticed my own kids do it and smiled at her. We got chatting and the “a” word inevitably came up and there was a direct understanding instantly.

My how I LOVE these kind of encounters

*Jenny had forgotten to bring her son’s iPod so I was able to give him some spare ear plugs that I keep in my handbag. We swapped names and have now become Facebook friends.

So Hi *Jenny if you’re reading this!

~

After the show finished we went to a nearby park and got some fish and chips to eat under a tree. It was fabulous.

We laughed together about funny scenes and each of us told what out favourite parts of the show were. There was MUCH excitement!

I took in the moment with a mental photograph as this was as close to normal that I have seen us all in a long time. At that time, we were just another family sitting under a tree together giggling, smiling and enjoying being together. Sadly – this is quite rare for us these days and I didn’t want to ever forget that exact moment.

The park we went to was like a massive O.T. session for the boys and we spent a couple of hours watching them slide down tunnels and climb up rock walls and spin, swing and run to their heart’s content.

It was absolutely the best afternoon and I’m so thrilled that we got to spend it together. As a family. Doing what other families do. ALL THE TIME.

Eventually Harley started showing signs of reaching his limit and Lucas started flagging as well so we headed for home. We fed them, bathed them and then everyone went to bed early. Once they were all settled,  Mr Patient and I all sat down with a huge glass of wine and we crossed the day off as a raging success.

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Or so we thought at the time.

Yesterday was a huge day and it took its toll on them more than we had realised. This morning in particular was really really hard. Harley was a mess of tears, anger, frustration and tiredness.  I had to carry my almost-9-yr-old son into church and he clung to me like a baby koala. He had tears streaming down his face and I had to end up sitting out underneath a tree with him outside rocking him and soothing him for quite a while until he calmed down enough to go inside again. And it absolutely breaks my heart when he’s like this – especially when I know that I have had a large part in him reaching his limit but I know that we have to expose him to the real world in order for him to learn how to function on his own one day.

And because his disability isn’t obvious to the untrained eye – he will need to learn to adapt to different situations to survive in life and gradually, we are helping him to understand this.

And THIS is precisely what autism families mean when they say no to an invitation citing the reason “It’s not worth the repercussions later”. THIS is why we often opt to stay in our safe little autism bubble shut off from the world. We are not being exclusive, we are not avoiding people, we are doing what’s best for our kids and ultimately ourselves. But we know that eventually we have to step out for the greater good.

And that’s exactly what we did…….One small step at a time.

Hope you’ve all had an awesome weekend.

Fi x

An open letter from a frustrated mother to an over-paid Bureacrat.

If you’ve clicked on my blog hoping to see a cheerful upbeat encouraging blog post today – you will be disappointed. Today’s post is something that I need to get of my chest, things have been very trying here lately and I’m using this platform to voice a frustration that I have with the current government and those in positions of influence.

But as you read this: Please know that I haven’t lost faith in God or his miracle-working power – I know He is working in our lives and that He will make it all turn out for good , but the light at the end of the tunnel is quite dim right now and I’m writing this out as a form of therapy for me.

Feel free to click elsewhere and read a happier, cheerier post that someone else wrote if you think you can’t handle this. I won’t hold it against you….I promise

~~~

Bureaucrat : an official who works by fixed routine without exercising intelligent judgment.

Dear Mr Bureaucrat,

I don’t even know your name. You hide behind unnecessary paperwork and ridiculous rules and regulations making it impossible for the average parent to even gain access to you. You’ve been sent numerous files from several sources on our family and therefore should already know our situation.

But rather than make you sift though more paperwork and waste MORE of my precious time, let me refresh you:

We have 3 children, 2 of them are diagnosed on the autistic spectrum and we have no family living nearby at all. My husband works away from home a lot and travels interstate regularly. Most of the child rearing falls onto me and I have requested help more times than I can remember. I have had social workers submit requests on our behalf, but still you guys continue to push all of those facts to the side as you reject us time and time again for respite. I just don’t understand at all and I am getting desperate to be heard.

Do you know that our family is held together by duct tape? And do you know that this tape is getting dangerously thin?  It is fraying at the edges and it won’t be long until everything falls apart at this rate.

I seriously have begun to doubt that you and all your bureaucrat friends with your stupid bourgeois rules even care.

Are you aware that we spend an absolute fortune on sleeping, anti-anxiety and anti-depressant medications each month just so we can cope?

I’ve been told to go and talk to a psychologist in conjunction with my meds for my own well-being, but frankly: I don’t see the point. Because just talking never changes anything, I want actual physical help. I want someone to come and take my son on a regular basis and GIVE ME A BREAK.  Words are absolutely useless to me right now and mostly serve no real purpose other than to annoy me further.

Recently I have had my own medication increased. Doubled in dosage actually so that I can ‘cope’ with my load. But I’m not interested in just simply coping. I want to thrive, I want to succeed and I want to bloom. I want to be the mother that my kids deserve not the mother that they are stuck with.

Because ‘coping’ means barely scraping by and that’s just not enough. It will never be enough.

Surely with the ever-increasing rate of autism in this country SOMETHING has got to shift. MORE services need to be put in place and funded and more families need to be able to access them.

And I am not the only one screaming out for help here. There are many others who are also being crippled by the weight of carrying so much responsibility on their own. This is not just child rearing: This is parenting extreme style. And a lot of the time it is so extreme that it would frighten the pants off most ordinary folk.

Most days I feel like I am gripping onto the edge of a cliff with my fingertips while the rest of me is dangling over a bottomless chasm. We ASD parents deal with all the same issues as parents of typical children do, but then we have all the other added ASD stuff on top. We deal with major sleeping issues, toileting issues, communication issues, issues with motor skills both fine and gross, sensory issues, learning difficulties, and a host of other things. Most of our kids have a variety of letters to add to their autism diagnosis because autism rarely travels alone. Our kids also carry diagnoses like: SPD,ADD,ADHD,ODD,OCD to name but a few.

Right now, our entire family dynamic is malfunctioning and no-one in the higher places wants to touch us for whatever reason we are given THIS week as an excuse.

Seriously: This is Australia…..The “lucky” country. Well…apparently it is. I’m have to say that I’m not feeling the lucky part right now.

Mr Bureaucrat: We are tired of living in the too-hard-basket and we want out because this is just ridiculous.

No actually: it’s a big fat joke.

And while I’m on it, What are you doing about funding for autism in schools? Because last time I checked – Aussie kids don’t get anywhere near the aide that they need or deserve. It’s embarrassing to read stories from all over the world and see just how far behind we are as a country. Do you guys in your expensive suits in your leather swivel chairs with your water views and free lunches and frequent overseas trips on our tax money even care?

“Frustrated” is the word that frequently comes to mind whenever I’m asked how I am these days. So damn frustrated.

Does it have to get to the point where a child is in danger or a parent loses their mind and gets sectioned before you’ll step in? Where exactly is the line between desperate and worthy?

I’m frustrated at the system and at the exhaustion and at the lengths that we are made to go to just to survive these days.

Something’s gotta change Mr Bureaucrat , I don’t know how and I don’t know when, but it HAS to change.

Signed,

An extremely frustrated mother.